Decisions on Imuran..
First I want to thank all of you who have been there and offered your advice, support, comfort and concern the last few months. It's been a trying time for me, dealing with a disease not easily diagnosed or treated and which mimics so many other illnesses. When I look back through my notes here, I see my frustration and at times desperation in my words. To that end, I don't know what I'd do if I wouldn't have this place to let me hair down, question things, rant a little, cry a little, laugh a little...Thank you.
Once again, I need some experienced advice. I feel I've been in a Lupus flare for some time (since last June). They tried Prednisone on me a few times last summer and although it seems to help with the Lupus, it has it's own side effects as well which are concerning. I weaned off of Prednisone in November, and have been feeling pretty poor.
Now, as far as tests go, this is an example of what I've been seeing:
Anti Nuclear AB- Positive
Anti DNA - 26.7
C3 Compliment 162
Ani Chomatin B Mod Positive 40-80 units.
As you can see, there are some indications that things are flaring, but to be honest, things like the low sed rate, etc, leave me scratching my head a bit. Add to it things like my Rheumy saying "well your anti-DNA would indicate something is going on, and 28 is higher than when I first seen you and we treated you with Imuran, I have patients in the 200's. My Rheumy has been hesitant to really do anything with me besides using more plaquinil and suggested upping the dosage (I'm on 200 2x a day, that would be 200 3 x a day). In my opinion, if it was the plaquinil that brought me to remmission before, as I'm still on it, wouldn't it reason it would have kept me there?
So, when I go in to see the Rheumy, we get around to discussing the possiblitly of Imuran. You see, I believe Imuran is what brought about my last remission. I had to come off of it because my blood levels crashed and I became anemic. But as soon as I was off, wow...I really felt like my old self. So, I'm on board with this, I think, but she then changes her mind post visit(has done so twice) and like I said before, directs me to the higher dose of Plaquenil.
This time I pushed back. She essentially dictated, through her nurse, fine, if you want to try Imuran, we can try it. You'd think it would bring me happiness, but I guess I'm use to receiving, not pushing treatment ideas. There must be reasons she hesitates to try that drug on me and I don't want to be stupid, in spite of myself.
I'm curious what some of my fellow Lupies think and would do here. This sure has been a frustrating process and all the doubt that they put in my mind about this disease and whether it's this or something else that's bothering me. I'm fairly simple, I know I have the disease, I'm not feeling particularily well, I know this drug worked, let's give it a try. But I also know when I took Cytoxan (when my kidney's were failing) that I had to sign a release to take it, so don't get me wrong, I know it's a significant drug (The Cytoxan worked too btw...but scary, scary drug).
Thanks again for your opinion. It's valued.
I am not able to advise you, but i am very sure someone will be along soon to help you along with this. I am glad you feel at home here now and so understand the ''let your hair down '' in here and laugh and cry. I am so glad you feel able to. Its sound like you are having a rough time of it and i so hope you feel a little better soon.
Sending you gentle hugs.
I was on Imuran for some time, but it has been so long ago I can't really remember how long. I had major trouble with severe anemia and low blood counts that didn't come from my medicine but from the Lupus itself. If you think that the Imuran will work for you, go for it. What's the worst that can happen really, that you might have to come off it again and try the plaq like your doctor wants? I have learned that the doctors don't always know best. I used to follow doctors orders like it was the law, but over the years I have come across too many that really didn't have my best interests at heart. You have to take care of yourself even if that means standing up to your doctor at times.
Thoughts on Imuran
I just thought I'd share that back when I was first diagnosed with Lupus (27 years ago), I had such a severe case that just would not be controlled with Prednisone alone. My family doc that had diagnosed me and saw me all thru childhood, tried for 3 or 4 months to work with the dose and finally admitted he really didn't have enough experience with steroids and didn't want to cause more harm. He referred me to an Immunologist that had been having success treating patients with Lupus by combining the Prednisone with Imuran. I was admitted to the hospital and spent 2 weeks of tests before this specialist agreed to take me as a patient. He started me on the Imuran, and we spent the next year or so adjusting the 2 meds. It took some tweaking, like upping the Imuran, lowering the Prednisone, and then switching things around, but eventually we found the perfect dose of both that, I believe, quieted everything down and put me into remission. He also, always, asked for my input about my symptoms, how I felt after an increase/decrease in dosage and whether I thought it was helping things or making them worse with my Lupus. The one thing I have always appreciated about my doctor is the fact that he trusts me to know my body better than anyone and listens to what I have to say about how a medication is working for me. I am blessed that he has been the only doctor I have had for my 27 years with Lupus. That is huge when it comes to continuity of care.
Once I went into remission, my Lupus was very well controlled for at least 10 years, with only a few flares here and there. And I understood from the beginning, the seriousness of the risks associated with Imuran. In my case, it was the last option for me. If I hadn't signed the release and taken it, I probably wouldn't be here today. After my last pregnancy 13 years ago, I was able to stay off of the Imuran for good. They had taken me off of it during my pregnancies.
So I guess what I'm trying to share here is that I am a supporter of Imuran. Yes, it has some big risks that each of us must decide for ourselves whether we are willing to take, but I believe it has some huge benefits also. I risked it because I wanted to live and to have some quality of life while I was here. I agree with Kducks in that we are our very best advocate and we each know ourselves....our bodies....better than anyone. Even doctors. And if something is working for us and giving us a better quality of life with Lupus, we should speak up and demand to at least try it for the present time. If it isn't working, then it's time to re-evaluate and go from there.
One last thing....I also had severe anemia and other blood issues before I was ever put on Imuran. In my case, those were just part of the Lupus, just like Kducks.
I am very thankful that I'm here today, and I believe for me that is due, in part, to Imuran and how well it worked with Prednisone to suppress my immune response and avoid serious attacks on my vital organs.
I hope this will help you some in making your decision, and I wish for you better health in the days to come.
I'm glad you've joined us here, and that you've chosen us to be a part of your support system in fighting this battle.
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You just made me realize how luck I am to have my dr. She has been with me for 13 years, and this has to make it easier for us to be successful. She knows me, and she knows that i know my body...she does not question if i am a nutcase. If I could get one wish granted, it would be that all of us would have a knowledgeable, patient, professional, and compassionate dr.
Thanks Lori, your story has brought gratitude to my day.
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I am so sorry...I did not mean to ignore your post.
I agree with both kducks and rastagirl....you should do whatever treatment you feel most comfortable with....your belief in the treatment is a major part of its success.
best of luck, pat yourself on your back for a good job done,
share a smile today
What a great wish.....You are so right....I wish it was a 'given' for every single one of us with Lupus. Just think how much easier it would make it for everyone.
It goes a long way in providing me peace of mind and a comfortable, stable relationship with my Lupus doc.
I'm glad I brought something good to your day!