[Jesse88]

Hi all,

I saw my RD on Monday and we discussed my bad reaction to stopping MTX when I started the Imuran. Apparantly the MTX was just barely controlling my symptoms and the Imuran hadn't kicked in yet so I started having problems within 24 hrs. of missing my MTX injection. So he put me back on the MTX for a few months until the Imuran gets into my system.

This got me to thinking about what would happen if I have to stop one or more of my lupus meds because of bad blood work or an infection. I now know that I have no grace period with these drugs and I need them regularly and on time. I'm really worried about how I'm going to deal with the awful flare that will come if I have to stop my meds. When I asked the RD about this he said "Well, we'll just have to cross that bridge when we get to it." I let him get away with that non-answer but I'm hoping you can tell me what your experience has been if you've been in the same situation. Thanks everybody.

 

[Raglet]

I am not able to take any of the usual meds - imuran, methotrexate etc - due to severe reactions to them.

So, I have just had to stay on prednisone permanently, plus have iv cytoxan, iv steroids and in more recent years rituxan when necessary.

But then I have severe lupus, which is why I had to go have rituxan/ cytoxan etc. Most people who were not able to take metho, imuran etc would probably do ok on low dose pred.

There are lots of treatments out there, so don't worry too much about it, you really do have lots of options.

hth

raglet

 

[Fairy]

I agree with raglet (and your doctor) - there's more options than you think, and why worry about something until you have to? I've taken mtx and cellcept without success, and I can only cope with a very low dose of aza (not enough to control symptoms). My doctor and I are both desperately trying to avoid cyclo, so I was beginning to wonder about limited treatment options when he pulled rituximab out of the bag. Hopefully that'll carry on working for a long time to come, but if not I'll deal with it when I have to. To answer your question though, I've always relied on steroids to get me through the times when I've had to stop the other drugs.

Hope this helps.

 

[Maia]

Have to agree with the others, but the answer would probably be more pain meds (if pain was a big part of your flaring symptoms), there are also meds specifically for any nerve pain you may have, and prednisone. I do my best to not worry about things that haven't happened yet; when such thoughts cross my mind I just know I'll deal with it if/when it happens. Because that's the choice we have to make - to deal with it if/when it happens!

 

[Jesse88]

Thank you. I wish the doctor had told me what you just have. That's all I needed to know, that there are other options and that I'm not going to be left whimpering in pain. I can let it go now. Why couldn't he just tell me that?