Running out of medication options

Hey Ides.. why are you reluctant to try MTX? And this may be a stupid question, but can you take plaquenil? Not sure if that would help at all though.. Hhmm.. ok.. off to see what other meds you might be able to take.. hang in there..

Hey Ides.. so you ARE Murphy's Law? And here I thought I was the only one! :) No, it's not shallow, it's your way of life.. and choosing these meds can be like changing your lifestyle, and like you said, you're just not there yet.. no one can fault you for that.. I am of the same era.. I don't drink often, but I feel, I'm an adult and if I want to have a glass of wine, by golly I'm going to have one! :) So I understand where you are coming from.. There just has to be something else out there.. hhmm..

Oh, the plaquenil, you never said, can you take that? Or is that along the same lines as the MTX? I'm not familiar with either as I've never been on them (is why I ask)..

Dearest Ides,

I'm sorry to hear that you're just about out of options.  I was also reluctant to go on methotrexate, but for different reasons than you.  I was worried about future children, although I've since decided that my family is complete, and I was also worried about interstitial lung disease, which mtx can contribute to.  Once I made the decision, however, and went on mtx, I realized that it was a good decision.  I will probably remain on mtx for a number of years (my mother took it for over 10 years and my father was on it for 15 years).  It's a pretty safe drug.  I'm not a drinker, but I would think that it is still ok to have a drink while on mtx once in a while.  I probably wouldn't drink everyday on it, but I would think a few drinks per week would be acceptable.  I guess this would still entail a major life changing decision for you, though.

As far as a liver biopsy is concerned, I was not aware that this is a standard requirement for mtx users.  My mother never had one; my father never had one; and my rheumy has not even mentioned it.  I thought you only had to have one if you start showing symptoms of liver problems?

Of course your concerns are valid.  I'm sure that you will come to the right decision for you.  I don't think it could hurt to check out the clinical trials in your area.  What about some of the other biologics, like orencia, and something else that came out around the same time?

Best regards,

Elcamino

Ides, I can only imagine how frustrated you must feel.

Now, as far as MTX is concerned, this is what my rheumy tells me (and I trust this man implicitly). A couple of drinks during the week is fine. You take your MTX and folic acid like normal, no big deal. If you're planning on whooping it up (say during the holidays as an example), then you don't take the MTX that week. Plain and simple really - my common sense guides me and I'm guessing your common sense is better than mine! Of course, if it's normal for you to indulge more frequently that a few drinks during the week, well, then I would guess that would place a bigger burden on your liver.

As for the biopsy, I've been on it almost 3 years now and no biopsy here. Generally, those are done when your liver enzymes skyrocket and don't come back down after you stop the MTX. You get monthly blood tests to check your enzymes and your rheumy will monitor them.

Keep in mind, it took me 6 months to get up the nerve to do the MTX. We added it when the Enbrel lost some of its effectiveness after I had a dental infection. I continue to take it even though I'm off the Remicade now (my miracle drug) and I'll continue it once I finally get started on the Humira. It has made a world of difference in my RA, and has helped my AS.

Should you decide to do the MTX, I suggest with your CD, you do the injections. The pills really jacked my stomach up -- I can only imagine what it may do to yours.

As a final thought - there is a "last ditch" (as my rheumy calls it) med available, but if the MTX "curls your eyelashes" then this one will "curl your toes."

I wish there was a easier answer - it's hard being guinea pigs. I hope you feel better soon - no matter what road you end up on.

~S.

Does it mean anything to have swelling in your hands and legs while on NSAIDS?  I have had this issue with everyone I have tried and no one seemed to care too much about it.  Do they give you something for this?  I am already on diuretics for blood pressure?

I see the rheumy next week. I am sure he is going to throw his hands up in disgust and worry over what to give me. Meanwhile, I see the the ankle guy Thursday...so hoping to be told I can "86" the boot cast. It is really starting to get on my nerves. Then I will have to start PT to rehab the broken ankle...frankly sick of going to medical type appts.

Thanks for asking...

How long are you going to have to do PT Ides? Have they said yet? Guess you'll probably find out on Thursday, huh? :) I hear ya about the medical appts.. is neverending.. let us know what they say.. good luck to you!

Two more weeks in the dang boot!!!! Urgh!!!!!! The part of the fibula that broke off is not reattaching. The doc could easily push it around. Had more xrays. PT on hold for at least another 2 weeks. He started talking CT of ankle and surgery to remove the piece of bone. At that point I went deaf.....LOL

LoL Ides, yep, going deaf at that point is something I'd do as well. Dang, you can't catch a break, can you?

Frayda, Rituxan is what my rheumy (and I) consider absolutely last ditch. It's not an easy treatment, the side effects just curled my toes and the extensive pre-meds are just not worth it, for me.

It's just too much of a risk (and it scares the bejeesus out of me), IMHO. Here's the website (sorry I can't make a workable link):

http://www.rituxan.com/

I have to say though, there are people here on HW that are on it and doing well. You might want to solicit information from them.

Hope this helps some - good luck, you'd think with all the med's available out there now, we wouldn't run out of options.

~S.