Now the third sister, also with dementia, has been in hospice for two months and I'm very sorry to hear that your experiences with hospice have left you concerned. Hospice teams are supposed to enable the dying person to have the best I also hope that you will be able to get the right medical care and support for. I have written many articles on morphine yet I repeatedly get this question. much it takes to keep the person comfortable until their very last breath. death), the morphine dosage were to make them die, is that really a Nothing works right. If you give a narcotic other than through an IV (let's hope most. I am so glad to hear you've rebounded a bit in terms of your ability to be off supplemental oxygen and I hope you had a wonderful time at the pumpkin patch with your family, and that your In time they will up my dosage but for now I am good!! You may not need to start on anti-fibrotics right away either.
you right hear! dosaging the comfortable So got Hope to nice and are now. good and
I will take everything you have said into consideration when i begin this medicine. My pulmonologist has gone over the side effects and wants to start me on a therapy. This is a very wonderful group of people who have lots of personal experiences, tips, tricks and advice to share based on their own journey with this disease. I am so glad to hear that this thread about Esbriet has been helpful for you. Please let us know how you make out when you start this new drug, and I will keep my fingers crossed that you do not experience any unpleasant side effects with it.
Hi again, Charlotte, Thank you for your kind words. It is hard losing all your siblings. I was a late in life baby and my eldest brother was 24 and was married with a baby when I was born. The youngest was I was unexpected, to say the least. I really miss them.
My heart attacks were 15 years and six years ago. I get an odd fluttering sensation in my upper chest and extreme fatigue. My youngest brother had a heart attack with no pain at all, he just passed out.
I will certainly let you know what the doctor says about the celiac disease. That diet is just so hard to follow! It takes such a small amount of gluten to undo all the good following the diet has done. I am anemic due to celiac but take iron for that. I would be more motivated to be compliant on the diet if it made a difference. Regarding the Vitamin D, my doctor advised me to take Vitamin D supplements.
She thought it was a good idea, living in Western Washington state with so much rain. And now that I take Esbriet and must use SPF 50 sunscreen and avoid the sun as much as possible, I am sure it is even more important now. I am so sorry to hear about your accident and subsequent pain. Have you had x-rays done? Did your doctor prescribe physical therapy? I absolutely love your article about dogs! It is so very true, mine give my life purpose. I live alone and they are the reason I get out of bed every day.
And they do try so hard to make us feel better when we are down. They make me laugh every single day. My life would be empty without them.
I had a good day today and hope you did, too. I enjoy your remarks and am glad I have found this forum. Thanks so much for responding, and being so willing to share more of your story with me and the other folks on the forums. Not sure, but I really value my relationship with them so I can only imagine how much you miss them. Wow, thank you for sharing re: The potential of having a cardiac event for me is high due to my pulmonary pressures, and I am always scared that they could go unnoticed as you mentioned your brother did.
Did you know in the moment that you were having a heart attack? With regards to the celiac diet, I agree, it is one I think that is hard to follow. Any thoughts on the Ketogenic diet? There is a diet that another member of this forum shared, that is also helpful for coronary heart diseases CAD so I might try that! Thanks for your kind words about the accident and pain. Unfortunately, I am Canadian and we were seen in a US hospital that night which has racked up an extensive medical bill for myself and two friends in the accident with me.
We are currently in personal injury litigation with a lawyer, and are pursuing a lawsuit agains the driver of the cab. It was really scary! I am still doing physical therapy for it, which is helpful but becomes difficult with my IPF symptoms. I have had a nice day as well thanks, just glad the weekend is coming up so I can spend some time resting and rejuvenating.
I am also so glad you found these forums, and that we have connected. Thanks again for your wonderful comments. To answer your recent questions, I like to walk in all weather conditions except when it is raining or oppressively hot. On very hot days I may wait until evening when it cools down.
Since starting Esbriet I will need to be more careful to cover up and use sunscreen. Fuhrman makes a very sound case for eating a healthy diet to reverse the effects of the standard American diet SAD.
I also was very nervous about starting the Esbriet since my Dr. However, I was also bound and determined that I was going to take this medication as it was the only one recommended for my IPF.
I was told that I had an advanced case so a transplant was not a possibility. SO, I needed the Esbriet. I went on the routine of building up tolerance and I have been very well with it.
Yes, at times there was a bit of nausea at first, but I just took a rolaids or tums and it took care of it. That stopped the pills from sticking. I have actually had to take all 3 pills with a buttered bun or toast very close together when I was dumb enough to forget to take them. Boy that is stupid, but I have learned.
I have been on it since June 1, and have had no real problems. Good luck to you and best wishes. Thank you so much for sharing all your tips and tricks about managing Esbriet! I will pray this continues for you! Looking forward to connecting again. I will be starting week 2 of Esbriet on Sunday. So far I have not experienced any problems. Thank you for posting your experience. Have you had liver function tests since you began taking Esbriet? Best of luck, I hope you continue to feel well.
Does anyone know or have you experienced significant weight loss or gain on either of the anti-fibrotic medications, OFEV or Esbriet? I am on OFEV and am finding that this is the case for me loss and I wondered if anyone else experiences this?
I am also very mindful of what I eat not only because I want it to be healthy lean protein, veggies, whole grains, etc but because the prednisone that I am on could cause rapid weight gain.
I have been taking Esbriet for 4 weeks now and no problems. My second months prescription arrived a few days back and I was surprised that it was 90 mg pills. I checked with the Esbriet nurse, my pharmacy and my doctor and no one knew who made the decision for me to change to the larger brown pills. To my surprise, since I was tolerating 9 mg pills a day for over a week, they all encouraged me to make the change. I have to admit 3 pills a day is much more convenient.
I encourage anyone that is still on 9 pills — and not having any problems — consider the change. Have you found out who ordered this change yet? I just wonder if this is information other patients might need or want to know, so they know who to ask about a change in their pills?
I can imagine how much more convenient 3 pills are vs. One of the Esbriet side effects is loss of appetite which would generally lead to weight loss. I was on prednisone for months during my chemo. At first I lost weight then gained.
At the end I was about I went down to a few weeks after. I would like to get down to Thanks so much for sharing your experience and again about the Fuhrman diet. I am on OFEV but the side effect of loss of appetite is expected with this medication, similar to Esbriet.
I guess after talking it out this makes sense. I can look at ordering the book, although I know it will take a couple of days to arrive. Everything is either in iBooks or Kindle Amazon. I love this way of reading because it is so easy to search, bookmark, highlight and add personal notes.
As all information on my phone and iPad is backed up to the cloud there is no worry about losing anything. Worst case if your device goes down, is lost or stolen — all information is easily restored to your device or a new device. Great idea, thanks for sharing! Ramping up Esbriet is important. Three times per day. First week is 1 per dose, Second week is 2 per dose, then Third week 3 per dose.
I have been on Esbriet for 3 months and latest Pulmonary function tests show a stabilization of ILD progression. Thank you so much for contributing your comments to this thread. I know others who read about the slow increase or gradual progression of Esbriet in future will find your comments helpful!
Hopefully their physicians will reiterate the importance of gradually building up a tolerance to Esbriet through a weekly progression as you have outlined above. I am thrilled to hear of your PFT results, and the stabilization of your disease progression. This is excellent news! I always find this so encouraging and know that others do as well who are hoping to see a stabilization in their function after starting an anti-fibrotic medication.
I will keep my fingers crossed for you that this continues until you reach 5 years! She is a wonderful writer and is chronically her journey of seeking out a lung transplant.
She was just approved to start the testing, despite not quite being at 5 years post breast cancer. Thanks to everyone for the good advice. It is such a unique and special community I think! In response to your March 14th post.
It appears we are both at about the same stage in IPF and very close in age. I am encouraged by the length of time many of the people on the forum are living with the diagnosis as opposed by the year life span that is found on the internet. Many of the progressive diseases move more slowly in older individuals. I had lunch today with a good friend who lives about a mile from me. He joined this forum a while back, was diagnosed with IPF about 6 years ago.
He gets around as best as he can, wheeling an oxygen tank. Being that this is such a rare disease it is quite remarkable that the two of us have it. His was most likely brought on my smoking and work he did at ground zero after the attack. Fortunately for him his treatment is almost entirely covered by the fund set up for 1st responders.
Were do you live? Any idea what may have been a possible cause for your condition. For me it is a complete mystery. No one in my US family or in my Australian family has this. I wish you many years of productive life. If you would like to converse via email I would certainly be open to.
That terrified me when I was first diagnosis, and now I am not as scared because there are lots of people on here living well with IPF. Have not felt this good in more than a year. Together with a bone health supplement, a mult-vitamin and most recently liquid vitamin D3. Daily total is 5, IU. On my last Cardiologist visit he added 3, IU vitamin D3 in a liquid form to my supplements. I came back back from a vigorous walk up and down hills for a total of about 40 minutes.
Earlier today I did some light yard work. Thanks for sharing, and I sincerely hope that you continue to feel so well. I have been waiting for my prescription vitamin D supplement to make a difference to how I am feeling overall. I was given a vitamin D supplement in February, to take for 3 months and it is 50, IU. Do you take a supplement on the regular, and then just recently it was increased?
I will pray this continues for you for a long time…. Thanks for sharing Al! I have been taking Esbriet for 2 years and had problems in the beginning with heartburns. I am taking 9 tablets a day and found that if I eat some protein before taking my tablets and some protein afterwards, I am doing fine. I eat a piece of cheese with a cracker before and after and for me that works. This may not work for everybody, but may be worth a try. I took Esbriet for about 18 months. I always took it after a full meal.
Eventually I only occasionally had a little heartburn that a little milk would immediately take away. The SUN was not my friend. Any skin not covered or protected with SPF 50 would burn and break out in a rash in a short time. Bottom line I have an unopened bottle of very expensive Esbriet 30 day supply, capsules that will go to waste. If anyone wants them, let me know. Thank you so much for contributing to this thread and sharing your experience of taking Esbriet.
I know this particular topic has been very helpful to others, so I am sure everyone is appreciative of you taking the time to share your experience.
I am a bit anxious about being at my cottage this weekend and on the beach, which is where I so desperately want to be to soothe my soul. Was the progression of you disease still occurring rapidly? Someone may connect with you about this, and hopefully something can be sorted out. Thanks again Christine and I look forward to continuing to get to know you through the forums even more. I just happen to be one of those for who does not help.
I still go out and maintain as much activity as possible, I just have to bring lots more O2 with me. It comes in many colors. Hope you enjoy the beach.
I am so looking forward to being in the sun! I agree, it is a very expensive medication! I believe she is on Esbriet and I know finances are tough for her right now. Kudos to you for remaining active and doing things as much as you can! I certainly can attest how it is not easy to lug oxygen around while doing errands. Just yesterday I was complaining about how tiring it is lifting either my tanks or my POC in and out of the car. Do you still drive while using your oxygen?
Stay cool but hope you do get a chance to enjoy the beach Christine. Yes, I still drive. I always have a full rack of D tanks 12 in the car. I just hang them on the shopping cart. It is actually very nice weather here Connecticut today. Thank you so much, that is incredibly generous of you. I will ask her, she is part of our lung transplant support group and I know due to circumstance that finances are tough for her right now. Kudos to you for working out such a system with your oxygen that allows you to still do daily activities.
Thank you for the inspiration. Do you have any of the backpack carry bags for the size D tanks? I cannot find one to purchase anywhere, not online or anywhere in store.
I feel like this would make my life so much easier but I have no idea where to find one, so just curious if you use them and find them helpful? Glad your weather has been nice and hope you got to enjoy sitting outside for a bit today. It is topping 45 degrees celsius here, so very hot with the humidity.
Take care and enjoy your weekend Christine! Also it would be easier getting in the car with just the shoulder strap. I slip it off my shoulder and stand it on the floor next to my left leg while driving. You can find the backpacks online. More are available for the smaller C cylinders but they are also available for D cylinders.
Hope you find one that works for you. Thanks for letting me know re: I really think having one would be a good idea for me, and would be helpful specifically for my D-sized cylinder. Is this a US Walmart? I tried searching in Canada awhile back but never found one that I wanted. However, I did a search again and there is one I can order through Walmart which looks awesome although it is expensive. I can order it right to the Walmart store though so I will consider that! I was I just trying to find one for you.
The first dose I noticed I was nauseated. Thanks for joining the forums and contributing your experience s to this thread. So sorry to hear that you were nauseated when first starting Esbriet, this seems to be quite a common side effect. Glad to hear it has subsided a bit, although I can relate about how tiring and fatigued this disease can make you, especially at the end of a longer day. So sorry to hear of the heart failure as well, is this due to your heart overworking to compensate?
In one of your earlier posts here you mentioned pulmonary PT. Did they teach you any specific breathing exercises? That seems like a good idea to work on for us.
Thanks so much for getting in touch. How are you doing? It is unbearable at times! Mostly my physiotherapist taught me different breathing patterns, techniques and speeds when I am doing different things, ie.
I think mine were a little less than , more like due to my short strides. Have you tried it? How did it go for you, if so?
I can try and track down my instruction sheets from my pulmonary PT if they would be helpful for you, or I can try to write them all out as I remember them if you want?
While being evaluated for a lung transplant I attended pulmonary rehab therapy. They said deep breath in and go up steps as you exhale. Stop and inhale, go up more stairs while exhaling. I was taught something similar with stairs, although I can do a few more than but likely that is due to my lung function being different than yours. Thanks for your response.
I was diagnosed a couple months ago but started having problems late Just started pulmonary PT and it is more a general workout so far. I am unfamiliar w liter measurements yet but the PlumPT should involve ways to expand capacity as much as possible while still able. Best success to you… Steve. I will ask my pulmPT next week about specific breathing exercises and I do know a couple.
Well I have been seen walking barefoot in snow just a few years ago but I spent the last 2 years in the Philippines so now the heat is familiar…. Been stateside since April and almost froze then in Roanoke, VA… hahahahah. I left them in the Alps somewhere….. LOL — I had a good chuckle reading your post, thanks so much for brightening up my day! Walking barefoot in the snow? Brrrr, I absolutely hate the cold and unlike you, can be seen wrapped in scarves, mitts and a blanket during the Canadian winters.
Sometimes I wonder why I live here! I bet the heat in the Philippines was great, ah, I would love to be warm all year-round. Suite Pensacola, FL Email: Pulmonary Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have read on this website. Home Forums Groups Members Activity. February 13, at 5: February 13, at 6: Hi Shaw, Thank you so much for posting this topic. Thanks so much again for posting and goodluck with it. Please let us know how you make out. May 2, at 8: May 3, at 3: Hi Joyce, Thanks for sharing your experience with starting Esbriet with so much detail.
Thanks in advance for sharing! July 10, at Hi Joyce and all other commenters on this subject. Thanks again for helping to put my mind at ease. July 11, at 7: February 13, at 8: Hi Shaw, I hope your second support group is going well. Here is a response from Joyce: February 14, at 3: February 14, at 4: Hi Shaw, Here are two more posts from your question regarding Esbriet on our Facebook page we posted in anonymously.
February 14, at February 15, at 2: Hi Shaw, Thank you so much for connecting back and letting us know how your tolerance of the first few pills has gone. Hi Judi, Thank you so much for joining the PF forums and for your contributions to this topic and discussion. Thanks again for sharing and joining us! February 15, at February 15, at 1: Hi Shaw, I am new to Esbriet as well. This particular letter is pretty deep and usually, he and his wife have healthy nuggets in their news — you can go to past news at the top.
Thanks so much for getting back to me! It certainly does make sense re: Yes been on PF news a few months now. There are some vids on YT regards PF to help caregivers and family understand what we are going through to help in a more positive way. Previous comment was a bit facetious knowing we would need to buy another suitcase under current prescriptions….
Nice — stay well… SteveD. I would imagine this is probably the same across Canada. So that will definitely ease any future need to buy that extra suitcase. Have a good weekend. This is good to know from a fellow Canadian, thanks for looking into that! As you will note I seem to be getting my posts through at last. I note from several participants that they are US residents and I do have empathy with them over the difficulty they experience in paying for OFEV.
If it were not for the fact that our government funds the drug in Canada with certain qualification requirements , I doubt I would be on it. I noted 2 postings in particular. Jacki Baum provided information about 2 support outlets so hopefully Jean saw this. There is a wealth of information on the disease on the internet and a myriad of articles on interpreting Pulmonary Function Tests PFTs. I was definitively diagnosed in but evidence shows I may have had it since Yes, I am so thrilled that your messages are getting through at last.
Thanks for sticking with us, as your contributions to the forum are very valuable and we appreciate the time you take in posting! I would have to get creative, ie. I do hope Jean and Jacki connected around the ideas for financial aid to help with this drug too!
Thank you for your kind and encouraging words Bob, great ones to go by. Lots of information online, and this forum has lots of wonderful people to help answer questions too. Thanks for writing us! So you are in Ontario too? I know where Coburg is, my brothers used to play hockey there although it is about a 6 hour drive from where I am. Hello from a fellow Ontarian! I had to quit. After months of not going out, staying home worried about diarrhea I went to family thanksgiving.
I am so sorry to hear of your experience with the Ofev, it breaks my heart knowing how much it is interfering with the things that should otherwise bring you joy. Is your doctor willing to try Esbriet for you, to see if you tolerate it any better? Did your doctor ever bring up a stomach coater medication, to see if that would help with the diarrhea? I am no physician so I have no idea if it will help, but sometimes I have to take an anti-inflammatory medication that is terrible on my stomach and my doctor offered a medication to help coat my stomach when I take it and it seems to help.
Not sure if it would have the same effects for Ofev or not…. Thanks for writing, but so sorry to hear of your tough experience.
Hang in there, Charlene. This usually works for me but it might not work for everyone. In my non-medical opinion, the value of quality of life by not taking the drug for 12 hours,even 24 hours, far exceeds the possible advantage which I suspect is minuscule in the overall scheme of things the drug has on extending my life.
Will I die 1 day sooner? I really like how you phrased this, and your approach to valuing quality of life over the possible advantage of the drug causing the problem.
Your words really resonated with me, thanks for sharing them and letting us know how you manage the unpleasant side effects of our anti-fibrotics. Good to hear from you. I have to admit when I saw this whole idea I took it with a pinch of salt. Had a PFT last week and see my Doc on the 10th. We have all arrangements made to get out of Dodge on the 15th and only a very solid medical reason is going to keep me from not following through.
I refuse to allow this condition or the medication to control my life. Enjoy your trip to the Big apple. Last time I was there was July Took a bus tour that included the WTC. Thanks so much for writing, and I am so glad your message continue to get through to us all on the forum.
How is your week going so far? I am busy preparing for two events kind of like a fundraiser, helping me with some medical expenses this week so I will be ready by the time Saturday night hits and both are over with.
Yes, I agree with you re: Good for you, not allowing this condition to keep you from doing the things you love to do. I went last year and unfortunately it was a disaster — a NYC yellowcab crashed us headon into a pole and we were all injured.
Shoudl be a good trip, thanks again for the well wishes. Boy the things you learn about. You know you originated this Forum and all the particpants, including yours truly, have given you input into some parts of their lives and their history with IPF and OFEV.
And then I mention my visit to NYC way back in and bang! What an awful experience. I hope you had Emergency Travel Insurance and if not is that perhaps what the fundraising you mentioned is about?
Good luck with the final outcome of that settlement. Thanks for your reply and I hope this note finds you doing well!
The sun makes a huge difference for my mood, and its been nice to see it again the last few days. Maybe it is getting you prepared for the warm, sunny days ahead for you in Florida!
I find it brings me a great deal of comfort although I certainly wish none of us had to deal with this disease. Its a lot to type out but I did a thorough explanation of how I came to be diagnosed with IPF just a few weeks back for her. I am eager to go back to NYC this week a year later and make new, happier memories there with my Mom. We did have travel insurance thank Heavens, so our hospital bills we believe will be covered in full, just waiting on the confirmation of that.
Unfortunately, its the rehabilitation costs that have been so expensive as my work benefits only cover so much per year. This is where I am wanting some compensation for through the settlement. That said, the fundraisers were something I love to do — helping others make custom decor signs for their homes.
I did all the prep and had the supplies, and they paid me to come make them so it was really nice. Fingers crossed for a good appointment on Monday, and safe travels on the 15th! Looking forward to hearing from you from Florida. Started off fine then got the typical side effects. One tip that seems to help, that was recommended on some site I was on, was to have protein in the meal you eat every time you take your OFEV.
Really seems to have helped. It is a good one and unfortunately is one I sometimes forget, especially as I am eating something when rushing out the door. Do you find any particular protein more helpful than another, ie. That said, I hope no one ever needs my help with this type of information! My work benefits are like most other standard policies in Canada, I have so much per calendar year for things like massage, chiropractic support, physiotherapy, etc.
Early in the year shortly after the accident happened I was seen at a physiotherapy clinic specific to muskulo-skeletal injuries, as I had significant damage to my shins. I needed both PT along with something called electric shock-wave therapy so after going a few times there, my benefits for PT got eaten up really quickly.
Then in April I was diagnosed with a concussion, even though it was 5 months later they said oftentimes an untreated whiplash injury leads to post-concussive symptoms, which I was having. I truly had no idea how much a car accident could impact your body for such a long time. There was no other vehicle involved, so there is no doubt that the driver is at fault. Our lawyer is through the US though, as it had to be that way given where the car accident occurred.
I really am curious to note the amount of the settlement we will be demanding, I should know that in a few weeks. Thank you for your detailed reply. Did you question your family doctor about this and ask him for a referral to the rehab clinic s?
To my mind the fuzzy one again you were involved in an accident and it is co-incidental that it happened to be in NY state. Reading your experience leading up to your diagnosis of IPF, you seem to have had a rapid onset of the condition given the sudden change in your well-being.
Where are you at now? Do you have the usual symptoms? What was your last FVC reading on your lung function test?
You asked me to let you know the outcome of my LFT and it was all very positive. As a result we have the green light to leave for Florida on Saturday. So nice to hear from you, thanks so much for doing some research on OHIP for me!
Did you get to Florida safely yesterday? I think if memory serves me right though, I am quite tired from NYC: How is the weather? I am home from NYC and will likely take a few days to catch up on the forums but my trip was absolutely magical.
I love NYC again, I think it is so magical at Christmastime and was reminded of that again this trip! How was the rest of your week and weekend?
I ended up getting a referral to the rehab clinics through the ER that I had to visit after returning from NYC last year when the accident happened. On any given day, I typically sit in the mids in terms of my FVC percentage. Will write more later. Just got to the house in Florida. If it is sunny and warm there today, please send some of it our way.
Enjoy your time there and happy holidays! Thanks for the tip Zack. Could you comment a bit more on the side effects you experienced and a little more specifics on the improvements you noticed? I normally have cereal for breakfast so started adding an egg for protein. Thanks for getting back to me and no worries re: Adding an egg to meals is actually something really easy but not something I think about very often, so good idea. The OHIP site is pretty specific on who they cover — seniors and those under 19, as well as those claiming under Workers Comp or under their Canadian auto insurance.
Here is another site you might find of interest:. Therefore it seems 2 options are open to you:. Thanks so much for the follow up information regarding OHIP and rehabilitation. It is really interesting, and I guess parallels what the rehab centers advised when I was deciding about whether or not to bill through our auto insurer, but did decide against in the in the end. Thanks again, I appreciate it and glad you found out some information in the process. It is warmer down here in Florida but we have had heavy rain since about 2am on Thursday morning and straight line winds and a tornado south of us that damaged 80 mobile homes and took the roof off a detached home.
So not all is great in paradise. At least it is warmer there, hopefully the rain stops and the sun comes out for you! I had some experience with filing an appeal through OHIP. One of the interesting things I found out is that all of their communications are sent via courier.
That said I still encourage you and your friends to appeal. Thanks for writing and sharing these details with me. This can be something I consider in future, for sure and I might reach back out to you to obtain more details. Thanks again for sharing. What are you spending your days doing in Florida? Had been on Esbriet for 2. Been taking 2 months getting bad joint pain and muscle pain. Anyone else experience and did it go away after a bit.
Thanks for joining the PF forums — welcome again! Did you have this on Esbriet as well, even initially? Unfortunately joint and muscle pain is something I experience on the regular now too, and have been on Ofev for awhile never was on Esbriet so I wonder if they are connected? I thought in general my pain might just be from chronic under-oxygenation but maybe it is medication-related.
I do find it helps quite a bit — have you ever tried this? I have to admit you are both the only people I have heard of who have experienced joint and muscle pain.
I have just re-read to booklet that we are given in Canada with first OFEV prescription and there is no mention or even a hint of joint and muscle pain. If so I would definitely discuss it with them. As far as the joint pain is concerned I have taken Clucosamine Sulphate for years.
Walmart is the cheapest. I only take the basic form and not the form that contains other other additives like Conglotin sp as their effectiveness is questionable and it makes the basic form much more expensive. I believe the recommended dose is mg a day to start and then mg a day. You can look it up on the internet. Hope this helps and stay in touch. Thanks for getting in touch with us about these unusual symptoms that Glenda and I are experiencing.
How is the weather down in Florida right now, has that rain stopped yet? I have some other things going on, following a car accident last year that might also be the culprit of this type of pain.
I copied the drug manufacturers name from the internet so that explains all that gobilty-gook before the name. Rain long gone and today it is 80F and these temps will continue until about next Thursday when the next Front s due to drop us back down into the 60s for a few days.
My wife also uses it and swears by it. By the way I spelt it wrong last time: Yes Glenda it would be very interesting to hear what the manufacturer says. Also can you tell us where you are from? Charlene and I are both in Canada. It would be so confusing! This morning however, I woke up to a thick coating of the white stuff on the ground here, so enjoy those Florida temperatures!
How long do you and your wife stay in Florida for? Thanks for getting back to us. I hope your pain is being managed alright these days. Wonderful Bob, enjoy the next few months of warmth and sunshine in Florida!
Looking forward to a wonderful , thanks for being part of my circle of support in the last year! Been here 18 years originally from Michigan and hubby from IL. I went on oxygen last Jan and have gone from 2L to last 3 months 4L. I go to UAB which is a center of excellence so I am lucky there although my doctor has left to go to Vanderbilt so having another in group. I am an Ambassador for the pulmonary fibrosis foundation so doing some travel for them raising awareness.
Thanks so much for sharing some information about yourself with us, I love connecting with folks on this forum! Thank you for the time and energy you put into that role, which ultimately benefits us all. Sounds like your grand daughters are at a wonderful age — enjoy moments with them, I bet Christmas was fun this year given their ages?
Have a wonderful day and all the best in ! Thank you for giving us your background information. It is very helpful to know as there are usually differences on the handling of OFEV in different countries and I know there are definite differences between Canada and the US. I was born in Belfast N. Ireland, went to live in London at age 16, got married to a gal from Gloustershire and emigrated to Canada after 10 years.
Several years later she had to have antibiotics that kill all her good bacteria resulting in C-DIF. I fed her 2 to 3 times a day yogurt with a teaspoon of L-Glutamine and dry baby rice mixed in. The rice was to help bind her up. I also gave her capsules of Probiotics with each serving of this yogurt. Got her healed up. The body intercoverts glutamine to neurotransmitters glutamate and GABA. HI Kareem — Jordan and Steve have found that taking it all at once with food works really well.
However, just getting it in one way or another is great too. Try it and see how it goes: Stephen- Great article and I appreciate you diving into this further! Why would he say that? Hi kevin — great question. They suggested 10 grams on day 1, 20g on day 2, 30g on day 3 and 40g for 5 days, followed by a fast taper and subsequent daily maintenance dose of g. It seemed like too much too fast, but not having read this site first, I tried it.
Everything was fine for the first 3 days. Then day 4 arrived and I had stomach pain and nausea. I decided not to do 40 grams that day and stayed at So the next day, I dropped down to 5 grams, thinking maybe I should let any excess clear out of my system. Would you recommend going off it completely for several days then trying your slower titration method?
Also, I am using Now Brand pure powder, which is free of allergens, and is also free form and I took it on an empty stomach, as per the recommendations on the other site. Any thoughts or suggestions? Your feedback would be much appreciated. What do you or Steve or Jordan think of that brand?
That is the only way to know if it will work for you or not! For cravings, should I take this with or without meals and how much and how often would you suggest. What do I do after taking 40gms per day, how long do I keep taking it? Hi Winellen — thanks for reaching out! We recommend you work up to 40 grams and stay there for no more than 60 days — then you can taper back down.
Pay attention to how you feel better, worse, the same and that will help you decide if you want to use the l-glutamine again. I have chronic bouts of gastritis and acid reflux when I stray off my clean eating and after vavcations when I drink alcohol. I have def noticed L Glutamine helping the inflammation when I take it. I take 1 heaping tsp about 6 times a day after small meals.
That would be around 30g right? Is it okay to break up my doses that way, or would you still recommend doing it only in the AM and again in the PM?
Also, I should prob be doing about 2 tsp more to get to the 40g sweet spot, correct? Also, in my years of tummy troubles I have found 2 other supplements that really nip my stomach inflammation and reflux in the bud. Slippery Elm is just the coolest supplement.
I make a tea out of it by breaking open 3 capsules and gently boiling it for about 3 mins. Cool it down and drink the entire cup in 1 or 2 gulps. Thanks for the helpful article! Hi Orville — great question. Our recommendations here are for anyone who weighs lbs or more. Hi Maggie Jean — thanks for asking! When taking l-glutamine 40 grams a day, is it best to take 20g in one sitting in the am and pm, or can you space it out and take for example 8 grams every few hours, till it totals 40g?
Thanks for all your help! How do they differ? Not seeing much on this thread about bone broth. Hi Sherri — glutamine is an amino acid that is present in bone broth and they both have gut-healing properties.
We recommend glutamine short-term to help heal the gut and using bone broth long term. How do I know where mine will be? Do I exhibit some kind of reaction if I go past it? You say work up to 40g daily for 60 days and then taper off to see how we feel.
If we feel worse do we go back on it? And at what dose? Is there a good long term maintenance dose? Where on your website is this specific information, and any advice on long term use or maintenance if we require it? I have had coeliac disease for 9 years and underactive thyroid for twice as long. I just want some good guidance on whether long term use of glutamine is good for someone like me, at a smaller dose. Hi Vanessa — we recommend you work with a practitioner to help get your specific questions answered: He recommends following the above protocol for 60 days!
I hope that helps. Vanessa — great question. Glutamine needs to be used as part of a comprehensive plan to heal the gut and keep it healthy. A huge part of this is the right diet. No supplement can overcome a poor diet or lifestyle and vice versa. You can learn more about what we suggest for a comprehensive plan by attending a free webinar here: Hey man I read your article on curing leaky gut with L glutamine, great and informative read.
But, is there a real difference between L Glutamine name brands? Hi Vinny — with supplements we think you generally get what you pay for in terms of quality. I want to give this a try as I suffer from ulcerative colitis. Initially I bought the pills, but will be buying the powder when they finish. Dr Mercola advises not to consume high doses long term. How much do you consider to be a high dose? Is this a supplement to be taken daily, forever. Or can we reduce the amount after a certain time frame?
I was recommended to take a teaspoon of Glutamine powder 30 minutes before a meal, 3 times a day for severe headaches that come on around 2 or 3 am by a renowned Nutritionist. I did this faithfully and within 24 hours, the migraines ceased and became mild headaches that I could treat. I took it for a couple of months, and then suddenly I started having mild chest pain. This went on for about 2 or 3 months. He said I had nothing wrong with my heart. I finally decided to try stopping the Glutamine.
The chest pain disappeared within a week. This was a year and a half ago. I have tried lower doses of glutamine, even 2 or 3 grams before each meal, and every time, in just a few days, the mild left-chest pain comes back intermittently. And I have to stop it. Suddenly, I am getting those middle of the night headaches again that get worse and worse as the day wears on.
I want to try the glutamine again because it is the only thing I have tried that gets rid of them. I take Quercetin, but it does nothing to prevent them. For headaches, I use essential oils like frankincense. You can learn more here: Just wondering if many people give similar feedback on this supplement? Hi Nick — thanks for reaching out. If they happen to you, l-lgutamine might not be the right supplement for you. Can you take L Glutamine while still on anti fungal treatment for candida overgrowth.
Beth — thanks for reaching out! Hi What dose do you suggest for treating type 1 diabetes in a 5 year old child? Gluten has been removed and we currently eat as clean, antiinflammatory as we can since the school food is not grain free.
Also, do we need to eliminate even naturally glutenfree grains such as oats and rice? We suggest working with a practitioner to find the right dose for your child. Our recommendations here are based on people pounds and above. Yes, we recommend avoiding all grains even gluten-free ones and we explain more why here: Likely part of the same problem, I am also very histamine intolerant a.
Plus, I have lots of environmental allergies. This week I had another unexpected case of non-stop stomach pain with bloating and allergy-like symptoms of swollen, burning eyes, sinuses, body aches. Everything just got very bad in a hurry. I discovered this site, which seems like a godsend, and started taking 2. And my painful gut is now gone after just a few days — the fastest ever! Unfortunately, glutamine is apparently a double-edged sword for me because after a few days of 2.
Apparently, the glutamine was converting to excess glutamate in my brain — guess I was developing neurotoxicity. I stopped the glutamine, reluctantly. Still foggy-headed though, but I did pull out some reserve xanax to calm me all the way down. Looking forward to the webinar on leaky gut — I need options!
It would be nice to have a more flexible diet! HI Byron — thats for reaching out to us. For tough cases like yours, sometimes the best solution is to work with a practitioner who can coach you one-on-one. Hi Celeste — this is the best place to start: Great article on L-glutamine. I have been eating a very restricted clean diet since last year. Please attend our free webinar to learn other techniques for healing the gut: I know I can take digestive enzymes with every meal and I want to use L glutamine as well.
How long do i take it before stopping? A couple of weeks? Hi Shelby — thanks for reaching out! You can use probiotics and l-lgutamine at the same time. Learn more about probiotics here: We recommend using the l-glutamine for 60 days before tapering off like you tapered on. Then you can decide, based on how you feel and how your symptoms are, if you want to continue using it.
You can always try introducing it again later on. Hi there, i have been recently diagnosed with celiac disease, and have been put on a gluten free diet. One of my symptoms is constipation, can i still take L glutamine if i am constipated? Still have leaky gut and an umber-strong histamine response really makes life a bit miserable. The colostrum supplementation sounds interesting: Hi Emmie — great question!! This article was so helpful, as I am learning about healing my gut.
I have been on the SCD diet now for a month and keep coming across things on L-glutamine. Here is my question….
I have tried to find out how much is in the broth, but am coming up short. Do you have any idea? Is it ok to be drinking bone broth daily AND begin the L-glutamine powder also? Hi Mary-Ann — we think it is safe to drink bone broth and supplement with l-glutamine at the same time. I was so excited to try it. I took only 2 grams and within 30 minutes had severe pain and bloating. It is possible something else caused those symptoms.
These are common reactions: Hello i would like to ask if i can take l-glutamine when i have candida? We actually recommend l-glutamine for those with candida as it helps to heal the gut. Hi, I have Leaky Gut caused by candida overgrowth. I took it first thing in the morning. The symptoms lasted until late afternoon and then subsided.
I took 3 grams. Some sort of healing crisis? Maybe it killed some of the candida in my gut?? Also, read this article for what to expect from die-off: Fingers crossed its the end of my misery! I had been taking l-glutamine for about 2 months, then stopped for a couple of weeks. My digestion is very poor so this helped tremendously. I could eat anything without all the bloating and gas. Have you introduced a new food? Are you using a different brand of glutamine or a supplement vs a powder?
Are you under more stress now than you were before work stress? Any of these could be contributing. You may also just need time to get back to where you were before on the l-glutamine.
Hi, I have been trying to heal my leaky gut and endless other issues?! My problem is that I am very sensitive to I-glutamine. They are too stimulating and give me heart flutters and chest discomfort. Thank you for any input as I just want to get better!
Another supplement to consider trying is colostrum. You can also make bone broth, which has amazing gut-healing properties. Drink at least a cup every day. Bone broth does contain glutamine it is an amino acid and is found in most proteins including meat and eggs, too. Should I gradually ease it back down to g? Steve recommends staying at that dose for about 60 days and then tapering back down and off the l-glutamine.
Stay off of it for two weeks and see how you feel better? This will help you decide if you want to continue using it. Hi I looked up the solving leaky gut link. I have a slew of food allergies. Just ate some chilli no beans. I look like a balloon now.
I ate gluten free oats this week and same thing. I actually stayed bloated all day and got hives on my stomach and noticed one on my forearm. I hope he has some answers. So tired of being this way. Theresa — you might be interested in this articles from our friend Chris Kresser — http: This will help you decide if you want to continue with the supplement.
If you, taper back up like you did the first time. Mariel- Quick background leaving out self-diagnosis: Let me stay on course here: I began taking Glutamine about 3 weeks ago. My research led me to feel comfortable taking it on an empty stomach, in a little water. In your professional experience, can you offer up some most common, general improvements that may be experienced?
Thank you for your help. Hi Carrie — thanks for your awesome comment. I have some resources and info to share that I hope will help you and others who read this comment. Steve recommends you stick with it for 60 days — you might notice a reaction in this time.
Either way, at 60 days we recommend you taper off over 1 week and then stop for weeks and pay close attention to your symptoms. You might feel better without it, or not notice a difference. It is really good to test out all your supplements this way — giving them a week break and seeing how you feel and how your symptoms are with them versus without them.
Two supplements that work well for constipation together are Magnesium at night and Vitamin C. Another good recommendation we have is to supplement with coconut oil at every meal — tablespoons up to 6 tablespoons per day. You can read all our suggestions here: L-glutamine helps the lining of the stomach form and it helps with muscle repair and cravings too. Just wanted to clarify that.
Thank you so much, again. This is what keeps me up so late: The fact you actually respond thoughtfully to others when they need help along their own journey towards optimal health deserves noteworthy attention as well! Your public assistance is the epitome of pro bono! One we like is the unflavored Natural calm http: Epsom salt baths can help too: I started taking l-glutamine for my leaky gut back in march of and I started at the maximum dose of 40gr per day spaced out on an empty stomach.
I wish I would have started on a much lower dose. I wish I would have stopped but I figured that it would have gone back up when I stopped taking it. Its been 5 months since I stopped taking the l-glutamine and Everyday 2 hours after lunch and dinner it drops down automatically on its own due to food intake affecting the glp-1 receptor which then I am guessing tells the pancreas to release insulin.
I talked to my primary care doctor and he referred me to an endocrinologist. My leaky gut is much better by the way to where it is non-existent. L-glutamine does affect hormones. I have a appointment in 5 weeks finally with the endo. Do you know if this can be fixed permanately or will I have to take pills and shots for the rest of my life, please let me know, thanks. Lots of things can impact your blood sugar, and a supplement is just one of them.
There is no one-size supplement or diet and what has worked for one person might not be right for you. We hope your doctors can provide some helpful solutions and get you feeling better soon! Along with other things like stress reduction and sleep. Also dies L gut amine cause diarrhea at higher doses? If this happens to you, we recommend staying at the lower dose highest dose you can tolerate! Hi I came across your site searching for L glutamine.
I have leaky gut and adrenal fatigue. The leaky gut is so awful. I can eat them and not have issues so not sure. I did have to take Diflucan and an antibiotic recently for female gyn issues so that has me all messed up. What probiotic do you recommend? I came across an article by Dr Axe. I had IGG blood testing and a lot of food allergies.
I stay away from them and try to eat paleo but still so many issues. God send but still not better. I had stool analysis done. I had a bacterial infection, low gut acid and not digesting fats. Thank you do much. Hi Theresa — Steve and Jordan are both recommending soil-based probiotics like Prescript Assist right now.
You can try this one they recommend: I had bought a big bottle of Glutamine from our local health food store. I took the whole bottle in doses as prescribed by Steve Wright. After that I noticed that my knee joints and shoulder joint are now creaking and grinding. Could this have been caused by the Glutamine? Glutamine is typically good for joint health, though.
I started using probiotics along with slippery elm, but just bought l glutamine powder tonight. I am wondering if I am able to still take the slippery elm, or stop it and start the l glutamine? I had a flare up 2 weeks ago , unfortunately I have been dealing with quite a bit of stress..
Bloat, pain after eating etc.. I also recommend you check out our program for heartburn here: There are some reports you can find online of people claiming l-glutmaine caused acne — but many more saying the glutamine actually helped clear up acne!
Everyone is an individual, and even with safe supplements like l-glutamine, some people have adverse reactions. Is it okay to graduate to 5g twice a day at this point, or jump to an even higher amount? Hi Claudia — we recommend you talk with your naturopath about increasing your l-glutamine dosage. You might consider bringing tin this article to show her and get her opinion. We believe l-glutamine in higher doses like described here is very useful.
The brands we recommend are all great but there are other good brands out there too. With any supplement you typically get what you pay for, and we urge people to seek out the highest quality supplements they can find! My son has been suffering with CFS since April and he adjusted his diet etc as soon as he realised his gut was leaky as a result of yeast overgrowth. We think that the Candida has diminished although he is still having to use stool softeners, never having needed them before and he is still taking antifungals and probiotics as a precaution.
His energy levels are improving very very gradually, but he is not back to his previous excellent levels of health. He is 34 and has had to move back home, as he was unable to look after himself in the early months.
Now that your son has stopped the supplement, pay close attention when he adds it back in. Most people find it helps a ton though! Would you take l-glutamine while treating candida and taking antifungals or once candida is gone? HI Jenn, thanks for reaching out. Glutamine can be used as part of a holistic approach to getting rid of the candida. Diet and a yeast killing protocol will be vital here: This is helping my mental well being.
I feel more calm and stable while using it. I was anxious before and had a hard time handling stress. There have been a few side effects but nothing serious compare to the anxiety going down. I can sleep deeper too. So glad it is working for you! Lots of people report these same effects. Hello, I gave had leaky gut for years which finally resulted I chronic hives for a year straight and rapidly increasing g food I tolerances which caused anaphylaxis.
I restricted most foods and took an l — glutamine supplement in pill form. It seemed to help although I eliminated gluten and dairy.
I gave fibromyalgia and chronic fatigue. I started taking straight l glutamine and eating really well.. Do you know if l — glutamine can cause inflammation of the kidneys? From here, we highly recommend following the directions in the eBook for best results: I have a problem histamine intolerance and therefore allergies and rosacea.
Fermented foods including probiotics are prohibited. But now I see that glutamine and gelatine are also fermented. This means to heal the gut will make the allergies worse. What do I do? You can learn more about what we suggest by attending this free webinar: With any supplement, we recommend starting at a low dose and adding them in one at a time so you can watch for a reaction, and stopping the supplement if you notice an adverse reaction!
Hi Mariel i would like thank you million times for recommending colostrum to me. YES the products helps really well. Once a again Thank you.. What is L Glutamine derived from? I was diagnosed with an autoimmune disease 3 years ago and was unable to do any exercise without extreme exhaustion.
This past week I breezed through some mild exercises. I joined a Zumba class on Tuesday and sailed through it like it was nothing.
I am also sleeping better for the first time in years. I tried incorporating L-Glutamine in my daily regimen to control my cortisol level, but unfortunately, I am unable to tolerate this supplement.
Shortly after beginning my regimen, large pimples began appearing on my face. Thank you for the post!
I hope you have a good time and feeling that the Esbriet helps you. since first of December , I am now on maintenance dosage (9 pills daily). I feel a lot more comfortable now too knowing that I can post a question . I'm so glad to hear that you haven't had any side effects on this drug, I will pray. Hi, I have bipolar and suffer with horrendous anxiety attacks. My doc has me on seroquel xr I stopped it 5 days ago now, couldn't .. I hope you find something that works for you. . Just have to find right combination/dosage for individual. to put me on the Lamictal and so far I am hearing good results. Use 3 kind responses to help them calm down & redirect to another activity. Hearing seniors say “I want to go home” over and over again is something Another example is saying “Ok, let's get your sweater so you won't be cold when we go .. My sister and I both are dealing with this exact issue right now where our 82 yr.