Well, appt at immunology today during my monthly IVIG infusion and the decision was made to start the Imuran. We have all been talking about it for 5 years and putting it off, but my neurologist saw me during a bad spell end of January and said that we have "dinked around long enough and it is time for the Imuran"
I am sort of concerned but at the same time by doc says that they have over 30 year of documentation on the use of Imuran and it is the safest drug for now. The research indicates that people with autoimmune disease untreated have pretty much the same cancer rate a those who took imuran. This is because people who have autoimmune disease are at a higher risk for cancer in general.
This drug changes the way the teacher cells train the t,b and nk cells to identify dangerous cells and teach them not to overkill--in other words not try to kill us off by killing all our cells. My doc gave a really cool explaination about this but I didn't remember it for 2 minutes. I will be starting the drug on Thursday-50 mgm twice a day for 2 weeks and then blood work.
If blood work is ok then I will up the dose a little and when I have my infusion 2 week after that they will do blood work prior to infusion to see how I am doing liver and white cell wise. After that blood work once a month. This drug works slowly so once a month blood work is acceptable. She said that in 4 months I should start to show some improvement. According to her the reasearch shows that 10% of patients will have some effects that will cause them to stop the treatment. This is low according to her.
So, time will tell. Can't put it off any longer a I was on the 20 mgm of prednisone and when I dropped down to15 mgm my nasal cartilege ( septum) started in be afffected again. This is getting worse and causing pain and probably connective tissue damage from my nose to heavens knows where in my head. Pain goes through to the back of my head. This is just one of the many issues I have been facing. Such is life. Could be worse. Let you know how it goes. I will be on prednisone, plaquenil and the imuran and hopefully get rid of the prednisone as soon as possible.. Irish
Congrats on starting AZA, irish! I consider myself a bit of an AZA expert so my unsolicited 2 cents follow :D
Quote from: irish on April 10, 2013, 12:18:42 AM
I am sort of concerned but at the same time by doc says that they have over 30 year of documentation on the use of Imuran and it is the safest drug for now. The research indicates that people with autoimmune disease untreated have pretty much the same cancer rate a those who took imuran. This is because people who have autoimmune disease are at a higher risk for cancer in general.
I wouldn't accept that as true nor false. There is evidence suggesting that, particularly in the context of Sjogren's, you/we might be considerably increasing your/our risk of lymphoma using AZA, but the quality of evidence either way is low.
Quote from: irish on April 10, 2013, 12:18:42 AM
This drug changes the way the teacher cells train the t,b and nk cells to identify dangerous cells and teach them not to overkill--in other words not try to kill us off by killing all our cells. My doc gave a really cool explaination about this but I didn't remember it for 2 minutes.
Yeah so he probably made up half of that and the other half is based on supposition from unconfirmed in vitro data. The truth is we know very little about why cytotoxic drugs are such effective immunosuppressants, particularly since lower blood counts doesn't typically correlate with effectiveness.
Quote from: irish on April 10, 2013, 12:18:42 AM
She said that in 4 months I should start to show some improvement.
AZA is the slowest drug on the planet (or at least it will feel that way). You won't see maximum benefit for 6-12 months so don't despair if you go even 6 months without seeing benefit.
However, have you performed a TMPT test? Also, if you can convince your rheumy to get 6-TG and 6-MMP measurements a month after you start to possibly adjust the dose, that might save you a lot of time.
Quote from: irish on April 10, 2013, 12:18:42 AM
I was on the 20 mgm of prednisone and when I dropped down to15 mgm my nasal cartilege ( septum) started in be afffected again.
Off topic: irish, our symptoms are so similar. Have you ever had an anti-pr3 test to look for Wegener's?
Best of luck!
Styx
Irish..
Guess we have to bite the bullet...I tried Imuran several years ago, and felt better overnight..it was a miracle for me!!!
Sadly, two months later I got candida in my esophagues and had to stop it..when I tried to take it after that, I got super sick.
I would start the lowest dose possible and go from there...take it in the evening incase of side effects etc.
Im sure you will do fine..dont worry..maybe your miracle drug?
gursie
I wish you good luck with this new for you medication. I hope that it helps you feel like a new person and ready for all the activities you wish you could do. No side effects or interaction or cancers, only the best of options.
Irish,
I was on Imuran for about 5 years And did not realize how much it helped until we stopped it. :( New meds do not hold a candle so far to Imuran. I felt a lot better mouth, eyes, skin, joints and this crazy tingling in my legs when I was on it. My left thigh muscle is killing me with spasm because my hip is so tight now. :( I only hope to go back on it because I can't deal with this any more along with the dyspnea.
So, In other words, I hope it is a wonder drug for you too. CK
Irish:
Like everybody here, I sure hope this will be the wonder drug for you! Praying that everything goes well for you - it sounds very promising!
Sue
Irish, thanks on the update. So sorry things have gotten this far, but the others here who have tried it seem to have nothing bad to say about Imuran.
Dont know anything about this drug, but you are so wised up on things Irish, if anyone can go the full battle it is you !!
Best of luck and keep us posted, Dolly x.
Irish,
It sounds like you are in excellent hands, and that this drug will offer great improvement for you. Wishing you the best.
Good luck, Irish! I just went off Imuran after nine months - it did start to cause liver problems for me, but I'm also very sensitive to medication side effects. It is a big help to many, and I hope it works well for you!
Irish, you are about 4 or 5 days ahead of me on the Imuran. I am taking one 50 mg tablet for 2 weeks and then I'll have to get bloodwork before they up the dosage. I expect them to as their goal is 3 50mg pills a day. Also prednisone (not quite sure on the dosing yet) probably 30 mg a day and I'm going to build up to that. I am taking a pred pill tomorrow for the first time on this round.
Good luck to you and I hope this works for you. I'm still on plaquenil and have no notice of being taken off that. I have felt no bad effects of Imuran yet in 5 days. I'm doing 1 pill at a time so I can see which one causes trouble if one does. Lucy
Best of luck with this!! Please let us know how it goes for you.
Irish, I really hope this works for you. I am still struggling with finding the right med for me, too. This may be next on my list. Take care.
Irish,
I hope this work for you. Please let us know how you are doing.
Nancy
How's the Imuran working for you? I didn't notice a difference when I took it for a few months.
Lucy,
Glad to hear your doing ok in Imuran......Its just amazing how everything effects us all so differently..I, like most seem hyper sensitive to everything..even a motrin...my whole body just flips out...yucky.
Anyways, all we can do is try right...sometimes, medicine is a godsend and can really help.
Gursie
styx, I get the feeling that you have had some bad experiences with doctors. I know that I have had some really lousy doctors over the years. I have to add that my immunologist is world renown who is involved in research on an international level. He is an immunologist with about 5-6 other "oulogist" in his bio. Actually a genious level person. He has been in practice for many years and has a huge practice that involves people who fall through the cracks. He treats many who are virtually "untreatable" by others standards and will make a difference in their lives.
He is not a god walking on this earth, but he is a man who doesn't rush into treatment and knows the stats and also has the experience. A lot of people who have autoimmune disease develop cancers because of their screwed up immune systems. The other thing that is involved is the fact that so many of us with autoimmune have been exposed to this disease for many years prior to diagnosis. This puts us at higher risk for the lymphomas. We start the immune suppressants and we just have a higher incidence of these cancers. It is the hard fact. My hubby has had celiac disease since around 1964 and diagnosed in 1978. We have been watching him for lymphoma all these years. In the meantime he had lung cancer (smoked), COPD, Stroke, low IgG levels (on IVIG) plus many other health issues. He is 74 and not dead yet. Life is funny. Never know what we will get.
I would tell you folks who my immunologist is but then you would know where I live and I would have to kill you'll That's a joke folks. Irish
Irish,
I want to wish you luck and success with Imuran. You have set such a good example of adjusting to the many changes this disease throws our way; I want to thank you for that:)
Let us know how you are doing!
Irish,
heck! Weren't you at one point being treated with IVIG? I seem to remember that it was you whose posts I was reading to find out more about it. I'm assuming it didn't work for you. =( I was on Imuran for a couple of weeks and it was a miracle drug for me as well. Alas, I scratched my nose, ever so slightly, and it bled profusely for 45 minutes before I could get it to slow down with a styptic pen! Unfortunately it lowered my platelets.
I sure hope it works for you!! I'm praying for you!
Peace and blessings,
Andrea
I am still on the IVIG and it has helped me a lot with my myasthenia gravis. However, whatever is going on with my throat, nose, sinuses, hard palate and nasal septum may well be related to the sjogrens or possibly to lupus. I have not got a lupus diagnosis, but my ENT says that people with lupus will get nasal septum (cartilage) involvement and lupus has always been a possibiity for me. I have some really weird stuff happen in my head. Also, my head will feel as large as a huge beach ball and I will be so congested plus balance worse, etc. Time will tell.
This winter I had so many autoimmune issues from top of my head to bottom of my feet---not incapacitating, but made life pretty miserable. One weird thing that developed was the inability to lift my right leg up to cross my legs. I would have to lift it up and over. The other leg was fine. My neuro saw me end of January and said "what happened to you"? She then said that we had "dinked around long enough" and it was time to start the imuran and see if I could get a better quality of life.
Right now I am not feeling all that bad, but I am on the plaquenil and 15 mgm of prednisone a day. My nasal septum is kicking back in though. The involvement of the septum can become a hazardous event as it can cause some collapse of the facial bones, etc. I have been battling this long enough that when my nose hurts straight through to the back of my head I think better get more aggressive.
Hope that sort of explains it. I don't know about the IVIG as I have been on it for 6+ years. I know that I would be in much worse shape if I wasn't on it. My breathing was getting more affected with the myasthenia(which can be fatal) and my weakness was lots worse before IVIG. If the Imuran works then it may help all of my symptoms, some of my symptoms or none of my symptoms. Time will tell. Thanks for listening. IRish
Quote from: irish on April 11, 2013, 01:26:36 PM
styx, I get the feeling that you have had some bad experiences with doctors.
Yes.
Quote from: irish on April 11, 2013, 01:26:36 PM
I know that I have had some really lousy doctors over the years. I have to add that my immunologist is world renown who is involved in research on an international level. He is an immunologist with about 5-6 other "oulogist" in his bio. Actually a genious level person.
...
Famous last words :) Sorry; his credentials don't change the fact that he was incorrect if he said what you wrote.
Styx
From what I have learned the Imuran was developed back in 1968 to be used with transplant patients and has had over 40 years of tracking. This is more time on this earth than a lot of the newer drugs that are used for cancer/transplants/autoimmune disease, etc.
The truth of the matter is that no drug is safe and all drugs have side effects. There is not one drug on this planet that someone, somewhere hasn't shown up with some God forsaken side effect that isn't always expected. I have seen some weird side effects from meds over the years and sometimes the drugs that you assume are safe will "do it" to someone. I don't feel the need to defend my immunologist because I know him and see how he works plus there are plenty of people that I talk to who are being treated by him who have had their lives saved or have a better quality of life because he had the guts to step outside the box and take some chances when all hope was gone.
He doesn't do this indiscriminately (I have been treated by him for 6 1/2 years and we have been talking Imuran all this time) and always talks with other doctors, weighs the pros and cons, and then waits a little longer to see what Mother Nature is going to do. I am taking the Imuran because I feel that this is the best option for me at this time and I trust the people with whom I entrust my care. If I have a bad side effect/health issue, etc, then I have no one to blame but myself. They mentioned it and I made the choice. Such is the nature of the beast in the treatment of this wild and wooly disease. I can stay up at night and worry, or I can trust that things will be ok. I choose to think "OK" and if it isn't then I will deal with it then. This disease and the choices we have to make are not for sissies and we have that pounded into our brain every day that we live. IRish
Imuran is frequently used to treat SLE as well, and I've read many times there's no increased risk of cancer associated with its usage in the treatment of lupus. I don't know if that's different than Sjogren's, but when we have good doctors we trust, there comes a point where the overload of information available to us on the internet can be more harmful than is good for us. We need to be knowledgable to work WITH our doctors in finding the best treatment plan for each of, but we also need to have some faith and trust in the people to whom we are entrusting our healthcare :-)
Irish, it sounds like you have a good doctor whom you trust - you already know you're in good hands, and I hope Imuran provides you some relief.
My neurologist(I had an appt today) said that she has treated a lot of patients with imuran and has never seen big time side effects. She said that most of the time the side effects will show up in the blood work first. I had blood work the day before I started the imuran and will have it again in 2 weeks and then when I go for my IVIG in another 2 weeks I will have blood work again. I will increase my dosage from 100 mgm a day to 150 a day and that is high as I will go. I can't take the full dose of many medications so they are not pushing me with this drug.
I do take 400 mgm of the Plaquenil and will see how long I will have to stay on that drug. My neuro is starting me on a slow taper---I go from 15 to 14 mgm for one month and then down one more mom/month til on 10 every day. I will the do the taper on the every other day until I am back to my normal dose of 10 mgm every other day. Maybe I will lose my fat little face and belly then.lol I told her It would be 2014 by the time I got tapered down and she figures I will be back on normal dose by t he time she retires. She is about 45 years old and is a keeper!!!!
Neuro says it would be about 6 months before I would see the effects of the Imuran and immunology said sometimes in 4-6 weeks some people can see some changes. Probably everyone is different so will just wait and see. I have more time than I do money anyway. Irish
I don't mean to sound like I'm "attacking" your physician; I make mistakes all of the time. We're all human.
I think trusting our physicians is almost always the only practical option. I just think it's far from ideal, and in my case, after many years, I hit a critical mass where my own medical knowledge eclipsed my physicians' so I no longer have to trust them. I double and triple check everything they do, and mistakes are far from rare.
In any case, I'm very hopeful that Imuran is helpful. It has been my miracle drug.
Styx
I just wish the decisions werent left to us to make..I wish they would just tell me that "I have to try-do it" and thats it. With all of our health issues, and possible side effects, its just very confusing.
Yes, some people go overboard worrying about the side effects in my opinion..everything can be potentially dangerous..we never know how we are going to react to anything right?
It depends on your quality of life to me...Im not worried that "I may develop something down the road" I dont care. My main focus is to live for today, one day at a time, and if a bad medicine can make me feel better even for awhile, I would take it.
Everything in life is a gamble and risk..
good luck Irish..sure you will do fine and hopefully will improve some of your health issues.
Gursie
styx, I have never met anyone who had "eclipsed so much medical knowledge" that they did not have to trust them---as you stated in your post. Just an observation. Irish
Quote from: irish on April 19, 2013, 11:18:29 AM
styx, I have never met anyone who had "eclipsed so much medical knowledge" that they did not have to trust them---as you stated in your post. Just an observation. Irish
I'll take that as a complement :) As I said, it's usually not practical.
Styx
No one knows all about anything---that is my point. It is very hard for doctors to work with patients who think they are smarter than them(doctors). Smart people may know a lot, but they realize that it comes off as condescending and arrogant when they brag. This attitude is what can cause others to want to run the other direction. As we age we learn that we don't know it all and never will.
I am into my 2nd week on the Imuran and I am not bragging or complaining. I am waiting to see how Lucy (eyeamdry) is coming on her Imuran. I haven't seen a post from her about this so an anxiously awaiting to hear from her. It is a wait and see with all these meds that we are on. We can read all the research(much of which can be skewed in many directions) and listen to all the pros and cons, but until we have the issues and the need to try the big gun meds, we aren't experts. No one is really an expert on anything. What counts are the results that "me" (you,we, etc) have on the med. The medical field is not perfect and never will be. Lots of knowledge and lots of luck. Best wishes to all. Irish
Quote from: irish on April 22, 2013, 09:38:14 AM
It is very hard for doctors to work with patients who think they are smarter than them(doctors). Smart people may know a lot, but they realize that it comes off as condescending and arrogant when they brag. This attitude is what can cause others to want to run the other direction.
Yes, in the presence of a professional medical staff, I always feign ignorance. I've found that to do otherwise is counterproductive; a doctor's ego is very fragile.
Quote from: irish on April 22, 2013, 09:38:14 AM
We can read all the research(much of which can be skewed in many directions) and listen to all the pros and cons, but until we have the issues and the need to try the big gun meds, we aren't experts. No one is really an expert on anything.
I think we may have to "agree to disagree" on this point, at least for now.
Styx
I have been on Imuran for about two or three years at 150 mg/day. I never thought it was doing much. I recently had to discontinue it as an emergency because my new Coumadine for blood clots, together with Imuran, ran my white blood cell count down to 2.6 and falling rapidly.
I always thought that I might find out if Imuran was doing anything if I ever discontinued it. Well, I discontinued it as just described, and after about four weeks can tell no difference.
I wonder if the Imuran is protecting tissues and I just don't, and wouldn't, feel it. I wonder if my Sjogren's is so bad that Imuran can't do anything - it is too weak. I wonder if I just have the wrong genes for Imuran to work, or if the dose is way too low to work, or if I need infusions instead of pills. I have lots of questions, and few answers, about Imuran.
I know I am extremely sick though, and fully meet all of the current diagnostic criteria for the thing that they are currently calling Sjogren's Disease. I wonder if this thing currently called "Sjogren's Disease" will be redefined, or better defined, in the future.
I believe that Imuran and Cellcept might be about the same "level" of medication in terms of effect and side effects, so the next step "up" in strength (and severity of side effects) for me (I am discussing no one else here ) would probably be Cytoxan or IVIG -- getting into the nasty medicines here, but perhaps Cytoxan or IVIG will at least discernably do something.
I must say something positive(?) here - I am having better luck in the parallel progression of pain medicines, even though is a rocky, rough, road right now, with way too much of the old familiar, activity-based, "push-to-do-things-one-day/followed-by-crash-the-next-day" elements present in this new pain experience to attain any semblance of normalcy in my life over any two-day, or longer, period.
I plan to discuss all this with my (excellent) Rheumatologist and see what he says about it.
I am currently under the impression that as my Sjogren's Disease progresses. so will both the anti-inflammatory, and pain, medicines used to treat it.
I believe that this road eventually leads to taking really harsh anti-inflammatories, along with really-strong pain medicines towards the bitter end of things. At least this is my impression of my future, which is increasingly becoming my present, at this time.
This is my vision of my future, for me. I am not saying that Sjogren's is progressive for anyone else but me, or that treatment paths are the same for everyone. I am just telling my story the way I see it right now. What I am saying might not even be true for me - like many others - I am stumbling around in the dark with respect to what is going on with my Sjogren's a lot of the time.
Anyway, Irish, I am wishing you the best with the Imuran. I am looking forward to hearing about how it works for you and what it does.
paisley, You may want to try the cellcept. There are a lot of people who have had much better luck with it. It is hard to know whether your dose of imuran is too low, but it is also hard to tell what a good dose isa except to push the limit and see what the blood work does.
If it was me I would go for the Cellcept and see if that helps. I am on IVIG for 6 1/2 years now for my myasthenia gravis. I also have had extremely low t-cells and a ton of infections including many bouts of MRSA and Mycobacterium kansasii which required me to take TB meds for one years- 3 different antibiotics 8 pills a day. I am on the plaquenil also. The IVIG helped my myasthenia, but I still have bouts of weakness, however, my breathing isn't affected as much as it used to be. The docs have talked about imuran for years for me and we all finally decided that it was time. I have had a lot of symptom this past year and especially the past 4-5 months.
My nasopharynx issues are complex and non relenting so this is the main thing that we hope to get under control. Autoimmune is a crap shoot and we just have to bite the bullet cause we have no clue how fast it will go or what it will involve. I have had problems since I was about 20 years old and it seems my whole life has been planned around weakness and infections, huge dental issues, stomach/gut issues, etc. I don't blame people for thinking we are hypochondriacs cause all the ailments that we have that come and go are certainly ridiculous. Then add in the nervous system issues, the depression/anxiety, etc it really can be tough. But then, we sjoggies are tough people. We just learn to be tough and keep on going as long as we can. Good luck to you and hope you can get on the cellcept. Irish
Big hugs to you (((Irish))) !!! :)
Thanks for thinking about me at this time that is critical for you in your own journey! You have a big heart ! Having infections within the broader context of auto immune illness is the absolute pits! Yet you maintain a positive attitude, fight on brilliantly, and even think of others like myself along the way. I want to be like you are, but that is a tall order, and I fear I repeatedly fall short and probably always will. Yet I do the best I can, and that is all we can do. I still have hope that I might do some non-disease-related activities, and I fight for those good remaining fragments of life as well. I am in the best of company as I fight on beside you Irish, and many of the other strong and fine people here on this website.
As a matter of fact, because you mentioned it, my Rheumatologist and I were planning on switching me to Cellcept from Imuran earlier this year, before an incredible - really unbelievable - series of Sjogren's problems came at me, one right after another since the start of 2013. I would make a list of the new diagnosis just because it is so stupendous (and depressing), but there is really no point in making such a list. I have had a lot of the problems for years, it is just that I now have a superb Rheumatologist, and he can really diagnose these various diseases and conditions that are all related to Sjogren's.
Anyway, my white blood cells on my CBC trended sharply downward suddenly after I began Coumadin for blood clots, until they were at 2.6 and falling -- the danger zone. So we discontinued Imuran until the WBC came back up, which it it did over three weeks. So now we are adding Imuran back in, while not knowing exactly why it crashed in the first place - the Coumadin was just a correlation/assumption, and may not have been the cause.
Anyway, I said to my Rheumie, why don't we just switch to Cellcept now instead of going back on Imuran? He laughed and told me that one of the first things that you have really watch out for when you first start Cellcept is crashing White Blood Cell Counts on the CBC. So then I laughed too. It is obviously not the right moment to switch to Cellcept - not yet.
I don't really know why I am going back on Imuran, as I can't tell that it does anything. Years ago when I had some pretty miserable doctors, I used to get all my lab reports and numbers, look everything up on the internet for years, and get all my doctor's notes and comments on everything, for every doctor. I searched, analyzed, and studied every factoid and detail.
Now I have finally have all great doctors who I trust, so when one suggests that I go back on Imuran, I just do it. Of course I do still ask questions when I need to, but don't have to try to co-control all of my treatments in real time with all of my doctors. Having doctors that you can trust is such an incredible blessing to anyone who is really sick.
My Rheumatologist always tells me the truth too, even when the truth is that he doesn't know how some medicine works, or if it it will even help me.
When I started Imuran he told me that he didn't know if it would work better than Cellcept, or something else. He said that at this point in my illness a lot of "trial and error" is needed to find the most effective medicine combinations for patients. He readily admits what is not known, and I think he is likely a completely unrecognized genius at Rheumatology. He is apparently "saving" IVIG and Cytoxan, etc., for later in my treatment.
Back to the point Irish, what do you think Cellcept might do for me? Less pain and fatigue? Slower progression of the illness?
paisley
QuoteAnyway, I said to my Rheumie, why don't we just switch to Cellcept now instead of going back on Imuran? He laughed and told me that one of the first things that you have really watch out for when you first start Cellcept is crashing White Blood Cell Counts on the CBC. So then I laughed too. It is obviously not the right moment to switch to Cellcept - not yet.
I just switched from Imuran to CellCept and my WBC was 1.6 at the time!! I'm not sure we had much of a choice since there was some protein in my urine and my rheumatologist was concerned about kidney inflammation, but I do understand that fear of making one problem worse by the medications we have to take. I hope the Imuran works well for you this time around.
paisley, I have not got "the answer" to the which is better question regarding the cellcept or imuran. All I know after about 9 years on this forum is that a lot of people have gone onto use cellcept and found it do work for them. All we can do is try and try again. A lot of times we have to get worse before we get better and that is really heck cause it knocks our socks off.
I would hope that your counts come up so that you can start the cellcept. The whole thing is also a crap shoot. My status is that way also. My counts are down---I don't even know what they are right now. I could look it up on my latest lab sheet, but the bottom line is when I get my blood work done I will know if they dropped further and they will call and tell me what I need to do.
I am like you, I used to read everything I could and think and analyze, but a point comes in our life and in our walk with autoimmune disease that we have to trust the docs and hope for the best. Obviously if we have a doc we don't trust we don't give him/her a chance to do any fancy doctoring with us---we get a new doc. We have gone through so many doctors by this time that one visit often is all we need to know what to keep looking.
I hope and pray that you get a break and can get on the cell cep. Mshistory just posted and her counts are way down and she started the cellcept. I am of the opinion that sometimes we have to get on the big gun meds in order to trash our old system and get it in sync with what "normal" used to be. It is sort of like counts going up and coming down at the same time in order to reboot us. Good luck. Irish
I have mixed feelings about mycophenolate (Cellcept). On one hand, it provides an alternative to azathioprine, and it appears to take effect more quickly (but what doesn't :) ). It also has a very similar mode of action to mizoribine, a drug liberally prescribed in Japan to treat Sjogren's (though the quality of evidence is low, and they won't perform a controlled trial with the drug for some reason, which is concerning).
My biggest concern is that the studies by Roche in kidney transplants and lupus nephritis are, IMO, sketchy. I haven't seen many positive independent studies for mycophenolate when compared with azathioprine. Most of the independent studies failed to replicate Roche's results, and when I saw mycophenolate fall on its face in the trial vs. azathioprine in Wegener's, I decided to cling to azathioprine by my fingernails :) Roche's rebuttal regarding the Wegener's results was abysmal, and the study's authors trounced them, as they should.
I'm one of the many with a skewed AZA metabolism so I started experiencing liver injury at therapeutic doses. I decided to try modifying my metabolism with allopurinol. I was successful in the laboratory, but the jury is still out on whether this will be a success clinically. The quality of evidence supporting this decision is also low, but I'm concerned enough about mycophenolate to give it a shot first.
But if this doesn't work, I'll shift over to mycophenolate.
As I said before, the biggest problem with azathioprine IMO is that doctors don't wait long enough to see if it's effective (12 months) or they underdose (less than the typical "major organ involvement" dose of 2.5mg/kg).
Styx
To borrow part of a phrase: We are on a "road less traveled", but so too do many others.
" All I know after about 9 years on this forum..." There is no greater wisdom than that from real life experience.
Hope you are feeling some benefit from your treatment... as always you take the time to help guide others in the journey.
You sow seeds of light in the shadows.