the day has come to start Imuran

[irish]

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

[paisley62]

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

[mshistory]

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 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.

[irish]

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

[Styx]

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

[quietdynamics]

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.