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Discussion Starter #1
After several weeks of falling apart I went in for a steroid shot two days ago and ended up "giving blood". A nurse called yesterday and said that my white blood count was way better than in October (I had pneumonia) but still not in the normal range. After posting here and reading a bit I called back this morning and left a message for my dr. explaining that I've been off Imuran for six weeks and just got back on it in the past couple days.

So a few minutes ago the nurse called again and said "Dr. says as long as you're feeling fine just don't go back on the Imuran." A pause. Then she says "Oh, I guess if you came in for a steroid shot you're not feeling fine, are you?"

Duh.

She stammered a bit about why "Dr" missed that and made an appointment for me to come in two weeks from now. Don't take the Imuran until then, she says.

So, another two weeks of Imuran and I can expect to be feeling as poorly as I was when I got the shot two days ago. And from there..... well, I expect my options are to take Imuran and have dangerously low WBC or go off and: A) go back on prednisone or B) be virtually bed bound.

I can't think of another option, and those are the only ones he's ever offered me. It's been so bad these past few weeks, as bad as when I was first dx. Pain out of control. Too much fatigue to get out of bed. I went a week without a shower because I couldn't handle the exertion of what's involved in taking a shower. (You can imagine what my house looks like)

Am I missing something? Are there other options out there? I'm not the kind of sick where anything bigger would be considered, I don't think. My organs are fine and my big symptoms are chronic and constant pain and fatigue.

Ugh. What now?

Sunny
feeling pretty bummed out
 

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My wife always says, "You can't legislate against stupidity" but I sincerely wish one could pass laws against such as your Dr and nurse.
My sympathies; I know the shower problem all too well.
Is it possible that in "the land of the free" you could find a more sympathetic medical team? You definitely make it "the homeof the brave"!
Please take it easy.
Douglas+
 

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You must have had a problem taking Plaquenil then? What about methotrexate? Some people manage to get quinacrine/mepacrine and feel that helps them. Given the options presented, I'd probably try prednisone and ask for some other type of pain relief -- NSAID or narcotic or possibly something like Cymbalta/Lyrica because they can relieve pain too.

I hate those days where you know a shower will be just too exhausting to be worth it. (((hugs)))
 

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Hi:

You poor thing! I know how you feel tho! I tried Mehotrexate, Imuran and Arava...each cause me a different problem...OK the Arava didn't cause any problems besides hair loss, but I didn't feel any better.

I am now on CellCept...I do not take it for organ involvement, although I have had mild kidney issues...I mostly take it for the athralgia, myalgia and fatigue.

Perhaps you can suggest some of the options that others on the board are trying? Is your Dummy...hmm...Dr open to suggestions?

Let us know how yu get on.

Stephanie
 

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Discussion Starter #5
My Dumm.. Uh, Dr. is fairly open as long as I'm willing to concede little details to him. Like, I've been on Imuran for couple of years now and can count the blood tests on the fingers of one hand. Once a year is enough, he says.

I'm on Plaquenil. And I was on prednisone until I just had to get off. I already take Neurontin (I've come down two doses a day and now just take 1200 mg a day and it's helped the drowsiness a lot) and MS contin (morphine) -- 3 doses of 30 mg a day. I was willing to deal with the continuing pain (sometimes under control but mostly not) and fevers, but the big upturn in fatigue is not acceptable.

I have to read up about Methotrexate and Cell-cept. Gotta get ready to go into the lion's den.

Thanks for the input. I know there are more options. I'm overly dramatic and make too much of these things. But it's me, darnit. And I feel like my world gets rocked (not in the good way :wink2:) entirely too often. I will not give up the memory of how it felt to have the ground solidly under my feet and I will not give up my insistence that somehow, some day I want to return to that state. Not by dying. I know the ground is pretty solid once you die. I want to go to sleep at night knowing how I will feel the next morning. I want to be able to plan to take a trip in August and know that I can and not spend the intervening months worrying about a flare that might knock me out at the last minute.

So, I'm a malcontent and hard to deal with. I weary of being offered a menu of options that no sane person would want. I realize that no magic pill exists. But I'm more than a bit tired of "making nice", even if I don't do it very often. :lol::rotfl:

Sunny
 

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Sunny,

As you are already seeing their are options. I can tell you that I was totally unprepared when my doctor decided to put me on Cytoxan with Pulse Steroids once a month for 6 months. I never thought a doctor would tell me that. I need to try and get clarification from him at my next infusion on May 8. If they determine that the imuran is causing the low wbc I think it makes cellcept a little more difficult. However some patients do fine on differing immune suppressants. Arava worked pretty well for me for about 2 years I think, maybe a little less time. I have been on the Enbrel for 16 months now and my pain levels are still down. In fact I have had the best relief from Enbrel and until January I also had increased energy.

Don't give up!! Go find yourself a rainbow today.

Take care,
Karen
 

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hi there

sounds like imuran is doing a number on your wbc - but, the good news is that just because imuran does this to your wbc doesn't necessarily mean that other drugs will (metho, cellcept etc). So fingers crossed that they will be able to switch you over on to another med that will help you.

It is definitely a total pain to have all this messy stuff, especially when it is caused by stuff that is meant to help you. How frustrating for you

hope you feel better soon

raglet
 

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Hi Sunny,

What a time you've had my friend. Don't give up - those other options are out there but you may have to convince your docs. I can only speak from a Cellcept (Mycophenolate) perspective but I believe this is not officially approved in the US or Canada for use with Lupus. Many have been successful with their docs and others have not.

There was a study recently which I can't put my hands on (may have been the Mayo clinic) where it was found that it can be beneficial to those with or without nephritis and can reduce the number of flares.

I was given the choice by my rheumy of Imuran or Cellcept as he believed it was a better option for me than steroids. So far my WBC had remained good, my pain has reduced and I've had a bit more energy back but it's only been almost 4 weeks. Most people find a benefit around the 3 month mark.

I suppose it's the same with pain meds - you just have to find what works for you.

Hugz, :hug:

Pam xxx

P.S. I found the link - http://www.eurekalert.org/pub_releases/2004-10/mc-mcf101404.php
 

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Cellcept may not be officially approved (don't know) but I'm in the US and using it for non organ involved lupus. So you CAN get it. And my insurance (Cigna) is paying for it. I like it so I vote for it Sunny. :)
 

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Sunny,

I also, have more good days than bad on Cell Cept.

I hope feel better very soon.

Love,
Sandy
 

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I am a bit concerned that you have been Immuran for a few years and only had few blood test? Unless I read it wrong?

I am Imuran and my doctor first did the blood work every 3 weeks, for the first 3 months I think, then it went to every 6 weeks, for a few months, then every two months. It has not gone beyond the 2 months.
 

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Discussion Starter #12
Paula, you read it right. My dr. absolutey refused to do more blood work, saying that I was on a very low dose (100 mg a day) and that it would be unnecessary. My pharmacist refused at first to give me the Imuran when I told him I wasn't being followed with bloodwork and the dr. threw a fit. Anyway, I've just been taking it. Whatever. Obviously, it was making me feel better. just have to come up with something else.

Sunny
 
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