Just need to vent

[csgaippe]

I have to try and remember what my last post said, and being on all these drugs that is much easier said than done. I was on MTX, but my disease was not being "well-controlled", so I have moved to 150 mg of Imuran daily along with the 15mg of Prednisone I have been on. Dr. Villa-Forte says if I am feeling good in 4 weeks she will begin to wean me off the steroids again.
Here is the problem, I started Imuran last Sat and so far not only am I not feeling better, many of my symptoms are actually worse. I know the Imuran has to build up in my system, but I am wondering if the stress of this last week is more of the problem. We found out last Friday that my 6 year old grandson, Christian's leukemia has returned and he will need a bone marrow transplant. He is currently in Akron Children's Hospital undergoing intense chemo. I want to visit so badly but am afraid that I may carry something nasty in there.
So, the question is should I just wait and let the drugs build up? My hands and feet are tingling, burning, and aching like a bad toothache. The joint pain is once again waking me up at night and the ibuprofen I take to relieve it is upsetting my stomach. Has anyone else gone through this?
Cathie

[Jack]

If your Wegener's is not considered to be well controlled I would question whether the relatively mild treatment of Methotrexate (or even Imuran) and 15mg of Pred was sufficient. This sounds more like the sort of medication used once the disease is in remission. Also, since you have a disease that puts you at risk of kidney damage, you should not be taking Ibuprofen. There are plenty of alternative analgesics that do not increase your risk factor.

I'm sorry to hear of Christian's leukemia, it must be a very stressful time for everyone. I do hope he pulls through OK.

[pberggren1]

I'm so sorry Cathie that you are going through all of this right now.

I would say contact Dr. Villa-Forte right away and let him know what is going on. These symptoms sound like they could be Wegs. It is better to be safe than sorry.

[csgaippe]

[QUOTE=Jack;24462]If your Wegener's is not considered to be well controlled I would question whether the relatively mild treatment of Methotrexate (or even Imuran) and 15mg of Pred was sufficient. This sounds more like the sort of medication used once the disease is in remission.

I started with 60mg of Prednisone and the MTX and then was weaning off the Prednisone. We had increased the MTX once already but once I got to 10mg of Prednisone, my symptoms kicked up again. At that time she increased the Prednisone to 15mg and the MTX to 1.0 injected once a week. When that didn't work, she moved me to the Imuran. I had limited kidney involvement, blood and inflammation - no damage, so we have been trying to control it without having to use Cytoxan. This whole thing is so fustrating! Which drug, how much, and so forth! UGH......
Thanks for the kind thoughts!

[elephant]

I'm so sorry about your grandson. I agree with Jack and Phil. Do you go to the Cleveland Clinic?

[JanW]

Dr. Villa-Forte is at Cleveland Clinic, correct?

Was there a reason that they didn't want to go to rtx right away considering that there is kidney involvement?

[jola57]

I am sorry about your grandson, I am sure the worry about him is causing you stress and that in turn makes your pain worse. I too am surprised at the mild treatment you received. In most of the articles I read a more aggressive approach is advocated. I would think that your docs would know that, so maybe there was a reason why the did not chose cytox for you. The pain you are feeling seems to me to be uncontrolled wegs. Check with your doc soon and let him know that his med regim do not work.

[csgaippe]

Thank you all for the kind thoughts for Christian. I am sure the stress is playing into all this. I do go to the Cleveland Clinic, and Dr. Villa-Forte has been great. I will call her next week though on your advice. To be honest, the last time I talked to her the pain wasn't nearly this bad.
Thanks again to all of you!
Cathie

[Sangye]

I agree with the others. Maybe your kidney involvement is not so much that it would necessarily warrant rtx or ctx, so Dr Villa-Forte wanted to try the less powerful drugs first? It doesn't appear to be working. PLEASE stop taking ibuprofen completely. If you're having stomach trouble, it's already done damage that can be permanent.

I'm so sorry to hear about Christian. I hope he does well and never has to face this again. Meanwhile, if the stress of it is causing your Wegs to flare, that's a definite indicator that your meds are not controlling it.

[elephant]

Cathie, I agree with Sangye....that is what they did with me ...putting me on cellcept first and if that wasn't going to work...it was going to be RTX.
You probably need to keep a diary of your symptoms so that you can bring it to your Rhuemy. So glad you are calling her!