Imuran? The good, the bad, and the ugly

[JoanElizabeth]

Probably starting Imuran soon and would like to know as much about it and people's experience with it in terms of Sjogren's as possible. Bonus points for anyone who took it to help treat autonomic neuropathy or long term (I am only 20)

[singeanna]

I also may start it and would love some input on this post.

[trc1962]

Hi, I took Imuran for peripheral neuropathy and I also had some mild autonomic neuropathy and it was very successful. I started at 50 mg and my neuropathy had advanced a lot as they kept saying it wasn't there! In time, my rheumy upped my dose during a flare to 150 mg and kept me on it for quite some time and I developed toxicity of my liver and jaundiced. However, my liver dr. said that 150 mg was way too much for over 3 months and the rhueummy didn't watch my numbers enough, but it usually is fairly safe. I had no ill effects, didn't get sick or have any hairloss at all. Sadly after I was toxic I had to go off it and am trying cellcept now. Imuran gave me my life back, my legs healed, my neuralgia in my face healed - I was very happy. Good luck!!

[gurs]

I tried it years ago and felt so much better overnight...however, a month or two later, developed yeast infection in my esophagus so the doc pulled me off it for a month. When I tried to start it again, I got violently sick. I thought it was a fluke, so I attempted several times after and I still got super sick within hour after taking it..non-stop vomiting etc. I was bummed. I would say give it a try and see how you feel.

Gursie

[susanep]

I took it a couple of months ago, and after 2 weeks my intestines were hurting badly. I wasn't nauseous. I later tried it again, and it did the same thing. I have not been back on it.

I hope it helps you with no serious side effects.

susanep

[BurntToast]

I was sick on it too.  Tried it for six weeks but couldn't do it any longer than that.

[SJSman]

Hello,

THE GOOD

I really liked generic Imuran.  I am guessing I was on it for a year or so.  It helped quite a lot with pain but not at all with fatigue.

You must get your blood tested every two weeks at first with Imuran, and then you can decrease to monthly testing, if after maybe 6 months if you have no problems.  This is important, and can't be skipped.

My bloodwork on Imuran was fine for a whole year.  That lulled me into thinking that I was not going to have any problems with it.  Then my white count started decreasing each month.  I felt even better then, I liked it quite a lot when Imuran depressed by white count - then I really felt quite a lot better although I was still extremely ill of course. 

THE BAD AND THE UGLY

My Rheumatologist was not so thrilled with my declining white count as I was.  It meant that I could get infections even easier than usual, the usual on Imuran being that you can catch infections easier than off it because your immune system is compromised by the Imuran.  When my white count sank to something approaching 2, I was taken off of Imuran for awhile.  Then when I went back on it the same thing happened again.  So I was switched to generic Cellcept.

I did get an infection while on generic Imuran.  It was no fun.  First, I was sick with the infection, and then at the same time I had to go off of Imuran while on antibiotics to cure the infection so that the antibiotics would work.  That made me feel doubly bad and I really, really, hated it.  There is no withdrawal for generic Imuran, just return of whatever pain it had suppressed, which in my case was a lot, on top of the infection.

I have been on generic Cellcept without problems for some years now, and even have my dose increased to near the maximum.  It helps a whole lot with pain, but not at all with fatigue.   

When on either of these meds, it is prudent to avoid crowds, children, and sick people.  It is better if you don't go to grocery stores and touch shopping carts and products.   You are more susceptible to catching an infection.  If your white count is severely depressed, such as you skipped your blood test and don't know it, and then maybe feel better than usual, even a usually benign illness can potentially kill you because you essentially can have no effective immune system left to fight it.

Good Luck.  If you are suffering badly with the auto-immune pain of Sjogren's, these two immunosuppressants are wonderful.  They are not miracle drugs, but they do help with the severe pain.

[Linda196]

The criteria used for clinical studies is the more comprehensive 2002 paper from The Sjogren's International Collaborative Clinical Alliance (SICCA). The provisional 2012 ACR criteria (Arthritis Care Res (Hoboken). 2012 Apr;64[4]:475-87) has been the diagnostic clinical working guideline, but in the past year the ACR has been reviewing yet another revision, providing and 5-minute salivary flow test in place of the requirement for a labial gland biopsy, and utilizing the Shirmer's test. Scoring is on a point basis.

http://www.rheumatologynews.com/specialty-focus/lupusconnective-tissue-diseases/single-article-page/acr-new-sjoegrens-classification-criteria-on-the-way/2bb6a303f818523beea4c5fa3b268d87.html

The criteria will give researchers a single set of consensus diagnostic measures for Sjögren's syndrome, replacing both the provisional 2012 ACR criteria (Arthritis Care Res (Hoboken). 2012 Apr;64[4]:475-87) and criteria from the American-European Consensus Group, added Dr. Shiboski, who led the led the ACR steering committee that helped to create the criteria. "These criteria aim to classify clinical trial participants," she added. "That doesn't mean we can't use them for diagnostic purposes, but that was not the primary purpose."

All of the criteria continue to list Sarcoidosis as exclusion criteria, but here I am, with node biopsy confirmed Sarcoidosis and lab/biopsy positive Sjogren's so maybe I actually have neither?

[SJSman]

Hi Linda,

Under the 2016 Interim American College of Rheumatology Criteria for the Diagnosis of Sjogren's, there is a four-point scoring system.

Positive Schimers Test for Sjogren's is scored one point.
That new 5-minute salivary flow test is scored one point.
Positive lip (labial gland) biopsy scores two points.
Positive SSA and/or SSB criteria scores two points.

So, same as always with the ACR criteria, patients need either a positive lip biopsy or else positive SSA and/or SSB antibodies, to score four points. 

What are the diagnostic criteria for Sjogren's then if the ACR criteria are not used?   Why do doctors use them most of the time, to exclusion of any other criteria?   What is a reference for any other criteria that doctors are supposed to use?

As far as sarcoidosis being an exclusion criteria for the diagnosis of Sjogren's, is that only for research studies as well?  Or is that listed on numerous credible websites along with previous radiation, etc...and that standard list of other exclusion criteria? 

[Linda196]

Thank you for finding the new interim criteria, SJSman, I did a cursory search but nothing came up and I had commitments for the evening so couldn't go into more depth.

As noted by the fact that the 2012 and 2016 criteria are issued by the American College of Rheumatologists, with the 2002 (the very strict protocol for research criteria) being the only international one, it's probably an easy conclusion that each country and national college of Rheumatologists has it's own standard. In Canada, you are considered strongly likely to have Sjogren's  if you have symptoms of dryness for at least 3 months (edited to include this: with no obvious cause such known drug side effects, history of radiation, or systemic dehydration from chronic metabolic condition), or recurrent swollen salivary glands AND you have objective evidence demonstrating dry eyes and /or dry mouth (Schirmer/Rose Bengal-Lissamine Green stains for eyes; parotid gland flow, Salivary Scintigraphy, or Sialography for mouth).

Confirmation is supported with the usual blood tests, (ANA, SSA/B, ESR, RF, IGs) and a positive lip biopsy; but many rheumies make a diagnoses based on observation and experience.

The Sarcoidosis criteria is listed in both ACR criteria, as well as the international one. My Rheumy, not the one who DXd the Sarcoid (I outlived him) had no problem confirming dual diagnoses, and he also refers to my Sjogren's as Disease, not Syndrome, due to the many systemic effects I've experienced.   I can understand excluding it for research purposes, since it would "muddy the waters" but I cannot understand why someone would be denied a Sjogren's clinical diagnosis because of a history of Sarcoidosis, but an American rheumatologist of my acquaintence told me flat out, I don't have Sjogren's, despite all the supporting lab data. Good thing he didn't charge me for the "dining table consult" LOL

[Jasper]

Joan Elizabeth .....

I took Imuran for a month and then my liver enzymes shot through the roof so I had to stop it immediately. It also made me sick ..... nausea, vomiting, loose stools, fatigue, bloating.

We are all different and it is a matter of trial and error to see what works for each of us and what we can tolerate okay. I hope that Imuran works for you and that you see benefit from it.

Be sure that your doctor orders frequent labs, at least every 4 weeks, in order to catch any abnormalities that may appear so that the drug can be stopped if any abnormalities appear.

PS:  Be sure your doctor starts you at a low dose. I started on 50 mg per day but never progressed to a higher dose due to the liver toxicity.

Also, your doctor should do the TPMT testing to be sure you can take Imuran safely.

"TPMT Testing: It is recommended that consideration be given to either genotype or phenotype patients for TPMT. Phenotyping and genotyping methods are commercially available. The most common non-functional alleles associated with reduced levels of TPMT activity are TPMT*2, TPMT*3A and TPMT*3C. Patients with two non-functional alleles (homozygous) have low or absent TPMT activity and those with one non-functional allele (heterozygous) have intermediate activity. Accurate phenotyping (red blood cell TPMT activity) results are not possible in patients who have received recent blood transfusions. TPMT testing may also be considered in patients with abnormal CBC results that do not respond to dose reduction. Early drug discontinuation in these patients is advisable. TPMT TESTING CANNOT SUBSTITUTE FOR COMPLETE BLOOD COUNT (CBC) MONITORING IN PATIENTS RECEIVING Imuran. "

https://www.drugs.com/pro/imuran.html

[Jasper]

Linda .....

I agree with you.  The criteria is more stringent in the research setting. Well educated and experienced Rheumatologist do not refrain from a Sjogren's diagnosis just because someone also has Sarcoidosis or other listed "exclusions." They obviously know that a person can have both diagnoses.

I had Hepatitis C but I also have Sjogren's Disease. Just because I had Hep C does not mean I do not haver Sjogren's Disease also.

In addition, it would be a huge disservice to the patients to exclude a Sjogren's diagnosis and instead attribute all of the Sjogren's symptoms and complications to some other disease process. It would negatively affect treatment options as well as the well being and health of the patient. 

Fortunately for me, I have an exceptionally well educated, competent, and experienced Rheumatologist who not only diagnosed me with Sjogren's Disease, but is also treating me with Rituxan infusions for the Sjogren's Disease.  Rituxan has been a miracle drug for me and has given me back my life.

[trc1962]

I replied earlier in this thread about how Imuran really helped me with neuropathy. I would add that I am a teacher and work in elementary fitness and health and have lots of contact with kids. I simply practiced good hand washing and avoided direct contact with anybody that was "obviously sick." I shopped and lived life normally and did not suffer from more infections at all while on the Imuran (aziathiaprine). Now that I am on cellcept I plan on doing the same. I am not disabled and not at retirement age and so therefore I must work and probably receive more exposure. I can't control everything but I do focus on what I can control - like washing hands, eating well, not getting over tired and keeping up with blood work. Each drug seems to be different for each person, hydrochloriquine was a nightmare for me, developed psoriasis type scalp pain and intense hair loss from 2 doses and most people tolerate it pretty good. Don't be afraid to give the Imuran a try as it might work wonders for you and give you your life back.

[JoanElizabeth]

Thank you for all the replies. I have a pretty firm diagnosis as of my positive lip biopsy.

Jasper- The reason I did not start it already is because we were waiting for the results of the enzyme test. I just made the positive range, so I am not totally sure if that means it is safe? I am guessing so? I am sure I will hear from my rheumatologist soon enough and he will let me know.

Trc1962- I am very happy to hear from someone else who works with children. I am currently studying to be a special education teacher and work as a camp counselor for the summer.

[JoanElizabeth]

I am starting at a dose of 50mg and then after a week I will go up to 100mg a day. My rheumy said I can either take 50mg twice a day or 100mg once a day. Any ideas of which is better?