the day has come to start Imuran

[irish]

 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

[susan]

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!

[Ripvanann]

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

[irish]

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

[Styx]

styx, I get the feeling that you have had some bad experiences with doctors.

Yes.

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

[irish]

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

[mshistory]

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.

[irish]

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

[Styx]

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

[gurs]

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

[irish]

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

[Styx]

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

[irish]

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

[Styx]

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.

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

[paisley62]

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.