Imuran? The good, the bad, and the ugly

[selavy59]

Imuran for me has been a life saver. I had recurring parotitis and the skin on my face started to rupture and it was excruciatingly painful. Imuran saved the day for me. No more parotitis and pain free. Side effects gave me stomach pain but then I was taking 5 tablets a day. I have since cut down to 2 a day.

[SJSman]

Linda,

So, the Canadian Sjogren's-diagnostic criteria are apparently my all-time favorite criteria that I recently learned on Sjogren's World:

Criteria for the Diagnosis of Sjogren's Syndrome:   "Any physical or mental symptoms, plus bloodwork pretty normal, with a negative ANA, SS-A, SS-B, Sed rate, and pretty much everything else."

Now everyone and anyone with nonspecific symptoms for dryness can have Sjogren's if they want - that is good to know!

sm

[Linda196]

I think the Canadian criteria is a wee bit more specific than that:

you are considered strongly likely to have Sjogren's  if you have symptoms of dryness for at least 3 months (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)

As you can see, the subjective signs (dryness lasting more than 3 months with no identifiable obvious cause) has to be supported by objective findings like Schirmer's, Rose Bengal-Lissamine stain, parotid gland flow or diagnostic imaging positive results, and the swelling, although I didn't specify in my earlier post, is usually dealt with on a "rule-out" basis, and is what usually leads to invasive methods, such as biopsy. The lab work is supportive but not required for positive diagnosis.

Thank you, Jasper for noting my switch of words, and enabling me to correct my post.

[SJSman]

THE GOOD, or THE UGLY?

I am just not going to be able to accept that Sjogren's can exist in a person's body without either positive SSA and/or SSB antibodies in blood, or else a positive lip biopsy.  I can accept the new cutting edge parotid procedure that can apparently be done in place of a lip biopsy as is apparently being practiced at Johns Hopkins in their Sjogren's Center, however, I am just starting to learn about that and know little about it yet. 

I do hope that in the future, criteria for the diagnosis of Sjogren's might evolve so that we all might then agree on what Sjogren's actually is.  I probably won't make it even though it may not be that far off, however, the rest of you all could potentially live to see that.  Things are evolving at a blinding speed now it seems, and I find it a bit challenging to keep up with every new important change that comes along. 

It would be unrealistic for everyone on a Forum such as this to have identical opinions about everything.  If other people wish to believe that there is some form of Sjogren's Disease that can be diagnosed simply by measuring dry eyes and dry mouth, then that is your right of course.  I don't expect everyone to believe all of the exact same things about Sjogren's that I do. 

I do expect to be able to be free to politely express my opinions about Sjogren's diagnostic criteria and other topics on this Forum though without getting my posts deleted - that is a part of what Sjogren's Forums are for, right?  We discuss the Sjogren's-related issues that affect our lives, and learn from one another, or not - but having a discussion of issues must be a part of the reason that Sjogren's Forums exist, right? 

This isn't the "Sjogren's Diagnosed from Symptoms Only Forum", and it also isn't the "Sjogren's Diagnosed from the Johns Hopkins Diagnostic Criteria Forum" either.  If it had one of those names, then perhaps the discussion topics might be much more narrowly focused, right?

[JoanElizabeth]

SJSman, I totally understand where you are coming from. From an antidotal perspective the people who have negative SSA, SSB, and a negative lip biopsy seem to only have sicca syndrome symptoms for the most part, which are manged very similarly with or without the sjogren's diagnosis. I do understand not wanting to have a more invasive test like the lip biopsy done if sicca is your only symptom, so there may be some people who do not have a solid answer. I think once you have more systematic symptoms/extra-glandular manifestations that is when the definitive diagnosis, criteria, and pathology becomes important. I personally wish the lip biopsy was more wide spread especially in pediatrics because I am negative for the SSa and SSb antibodies, but my lip biopsy is positive and I have an ANA of 1:320. The lip biopsy was the missing piece for me that helped make the diagnosis and decide on Imuran

[Jasper]

"I do expect to be able to be free to politely express my opinions about Sjogren's diagnostic criteria and other topics on this Forum though without getting my posts deleted "

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SJSman .....

My understanding is that everyone is free to "politely" express their opinions about Sjogren's in this forum. The key word is "politely."

However, it is very impolite for a poster to insult, mock, taunt, harass, badger, argue incessantly, intimidate, put down, etc.

It is not fair to the many people who need this forum for answers and for support to have to endure that type of behavior from another forum member.

Not only is that type of behavior impolite, it drives people away from a forum.

In addition, it is impolite to hijack someone elses thread and use it for one's own grandstand.

[SJSman]

Jasper,

That was well said. 

If you read back over the thread, I don't think that Linda hijacked the topic off of Imuran onto diagnosis as it appears to you - if you would re-read the thread.  You will see that all along I was sincerely trying to be helpful in responding to JoanElizabeth's Imuran topic questions in multiple posts, and all of Linda's comments were all relevant to the Imuran topic as well.   

What you can't see is that I deleted a paragraph saying something like that Rheumatologists won't prescribe Imuran to people who aren't diagnosed with positive SSA and/or SSB, or else a positive lip biopsy - that is missing and is what understandibly  (to me anyways) caused Linda to go off full bore on the diagnosis part of the thread.  I deleted that paragraph in an acknowledgement of what Linda had subsequently said, in an effort to be more polite and less provocative in general - I was actually calmly listening to what Linda said.   Still, my initial comments were perfectly appropriate to the topic of Imuran, as was Linda's response to what I said.  You may not agree with this, or like it, however, Sjogren's diagnosis criteria are the key to understanding how immunosuppressants are prescribed by Rheumatologists.

Without going into a long and brutal history, which is key to understanding everything at hand here,  but leads us further afield of the Imuran topic, and also would be non-productive, I will simply say that I agree 100% that being polite is the key to having in-depth, important, discussions of the issues that affect all of us sick people here on this Forum, especially where differences in opinion about important and relevant Sjogren's issues are being discussed. 

I suggest that we all move forward from this point - however, no matter how polite people are, you must expect that we are not going to agree on everything - and that will continue to make some people, and especially including me but also others, uncomfortable and even irritable at times I am sure.  For one thing, we are all sick and can not always perfect in the ways we express ourselves. 

I suggest that that we collectively, including me of course, all move forward along the exact lines of guidance that you just suggested that we do. 

[Jasper]

Sjoman .....

Since it seems not to be clear to you, my post was directed towards you.

I certainly was not referring to Linda. If I was referring to Linda, I would have directed my post towards Linda. I know Linda did not and never has hijacked threads. She was merely responding to your post.

I read the deleted paragraph that you are referring to so I know Linda was responding to your post.

I also read your more recent post, which was impolite and abusive, and which was rightfully and thankfully deleted.

Please do not keep trying to twist my statements to suit your purposes.

[finallyadx]

I have no experience with Imuran as of yet - have been on plaquenil for awhile but it is causing issues with me now - headaches, stomach issues so may be asking to try a different medication - always good to hear how others have responded.

Wishing you the best of luck and hoping it is a "miracle" medication for you and helps you feel better.

Sending positive thoughts your way.

Kim

[Jasper]

JoanElizabeth .....

You asked about taking the doses all at the same time or splitting the doses. I don't know if it will make much difference. It may be less hard on your stomach if you split the doses, morning and evening.

I think the main thing is to take it with food, preferably a full meal. Taking it with food hopefully will help to allay any gastrointestinal side effects.

Let us know how Imuran works for you.

Best of luck going forward.

[JoanElizabeth]

Ironically I can't eat a full meal thanks to gastroparesis I am mostly tube fed. This medication will hopefully be the key to me actually eating food again.

[Jasper]

JoanElizabeth,

I am sorry. I somehow missed that. I now see it in your signature line. Still, taking the Imuran with the tube feedings may be helpful in avoiding or decreasing gastrointestinal side effects.

I hope it works for you.

[JoanElizabeth]

My tube feeds are slow continuous feeds overnight in to my small intestines not my stomach over the course of 16 hours. So I am not sure if that really helps much.

[Linda196]

I must apologise if I have appeared to drift this thread off topic. I'm so glad you attentive members have brought it back, and will ask that further posts in this thread continue to deal only with the subject at hand, Imuran.

I also realise that I haven't mentioned my own experience with Imuran. When I was first diagnosed, due to the extent of autoimmune attack evident systemically, my rheumy opted for a full bore steroid assault, and I was taking 80 mg of Prednisone daily in an attempt to protect my kidneys from secondary damage. When the macroglobinemia ( blood serum thickened with white blood cells to a point that flow was compromised, particularly in the renal vessels) had responded sufficiently, he tried Imuran as a steroid sparing therapy in an effort to enable weaning. I had no effect from the Imuran, good, bad or ugly. Had I been participating in a blind study I would have been convinced I was taking the placebo. There was no change in symptoms, I couldn't wean the steroid, and my blood work was remarkably unchjanged; additionally, I had no adverse effects!

After six months, the Imuran was switched to Methotrexate, and things started moving in the right direction, I was able to wean down to 50 mg of Prednisone daily, my ESR had dropped under 200 (normal range 0-20), and my CRP was in the 40s (normal range less than 10). After a further six months, and the addition of Plaquenil, I was able to wean to a maintenance dose of 7.5 mg, my ESR was less than 100, and my CRP was in the 30s. After nearly 10 years on that protocol, I still take the same dose of Prednisone, but my ESR is in the 60s, and my CRP is only slightly elevated, usually in the teens.

I've seen great results in others with Imuran, and my best scenario would be those good results, with my tolerance and no adverse effects.