Offered ciclosporin, tacrolimus or methotrexate... so confused

ByeByeUC said...
I had a Cyclosporine treatment and I do NOT recommend it. Just my personal experience but that crap is nasty.

Do you mind elaborating? What sorts of side effects made it "nasty"?

malaika said...

ks1905 said...
Cyclosporine knocked the flare out and allowed me to continue the 6-mp as a maintenance drug.

Oh that's interesting, I guess I didn't consider the possibility that if I use cyclo to get out of this flare, then I might be able to just go back to aza again with no problems... Just presumed that if the aza wasn't working now, it never would again. So even if cyclo is not a maintenance drug, it may still be useful.

I continued to use 6-mp the entire time, even when I was on Cyclosporine. I did not discontinue the 6-mp while I was on Cyclosporine. My GI required me to be in the hospital on IV Cyclosporine to start with and then I was released on Oral Cyclosporine for 3-6 months.

Cyclosporine is a treatment for flares, it is not a maintenance drug so you need to take in it in conjunction with another medication.

Yeah. If your game plan is to use the Cyclosporine to get out of the flare and then continue with AZA then make sure you do not stop the AZA as it can take months to kick in. You would want to be on both at the same time, like pred, and then hopefully when you stop the Cyclosporine the AZA will be enough to keep you in remission. Personally, I'm not crazy about Cyclosporine but I really don't know anything about it.

ByeByeUC said...

Marauder93 said...

ByeByeUC said...
I had a Cyclosporine treatment and I do NOT recommend it. Just my personal experience but that crap is nasty.

Do you mind elaborating? What sorts of side effects made it "nasty"?

My hair fell out of my head but grew on my face, terrible migraine headaches where I couldn't move, the shakes, night sweats, zero appetite, nausea to name some. They all stopped once I was off of it but you have to taper it as you would do steroids. It took forever to get rid of the side effects.

Marianne,

I had some of those same symptoms before I started the Cyclosporine for the 1st time and they continued while on it. I had lost 40-50 lbs before Cyclosproine so I thought that some of the hair loss was from the severity of my flare, stress, malnutrition and the Predisone. On top of that I had c.diff so with the Pred, nasty Flare, stress, night sweats, zero appetite and some nausea while on Cyclosporine but I also had it before I started so its hard for me to say its from the Cyclosporine.

I do remember the shakes (which was the least of my concern at the time) and I forgot about the extra body hair growing but that did happen to me too but all of that stuff goes away and the extra body hair didn't start right away.

The 2nd time I used Cyclosporine I was much healthier and the side-effects were minimal for me besides the shakes (hands) and hot/cold temperatures bothering me.

Each time I had Cyclosporine I started in the hospital on IVs, the Medication is very caustic on the vein that the IV was in; my veins hurt a lot from it and I'd almost be in tears when they'd have to stick me for a new IV or draw blood. That was probably the worst side-effect of all for me but that was only temporary.

I agree with katmom that even though your flare is tolerable something more will probably be required to get it under control. The flare that ended me hospitalized started out tolerable. I was only going 6-8 times at first, maybe less some days, and that was bad enough. But after 3 months of "functioning" this way and denying treatment of prednisone it was getting worse and worse. I alternated between different mesalamines, increased rectal meds to 2x daily with steroid rectals, nothing helped. Before I knew it, I was going 15-20+ times per day, in excruciating pain and no longer leaving the house. By the time I was hospitalized, I was a mess and it took awhile for the IV PRED to work. Because it wasn't working, the doctor was throwing out remicade, cyclosporine, surgery, etc. As scared as I was of these drugs, at that point I would have tried anything if the pred didn't kick in.

I guess what I'm trying to say is although I don't know if your flare will get any worse or not (because all our flares behave differently), I would hate to see you hold off of on additional meds and get so much worse. The longer one waits usually the worse it gets. And the worse it gets, the harder it becomes to get into remission. I would definitely start trying something stronger immediately. Even if it just increasing your aza. And 6-8 times a day is still no joke, eventually all that blood loss will catch up with you. I would have an additional game plan in mind because increasing the aza may not work or may take time to work.

ks1905 said...
Cyclosporine is very affective with treating UC Flares, over 70% including the most severe UC flares. I noticed results in a few days and close to a week I was getting close to remission.

I did like Cyclosporine but I liked Remicade much better. If I had to do it all over again I would have skipped the Cyclosporine and had J-pouch surgery sooner, both BB-UC and I can agree on that.

While I don't recommend the cyclosporine, it did stop my flare. But it was only temporary. (two months) To put such a toxic drug in your body, it better knock UC out and keep it away! But it won't keep it away....it will just buy you some time. I had no side effects from Remicade. If it had worked I would probably still be on it. But yeah ks1905, knowing what I know now, I surely would have skipped them all and gone right for j pouch surgery.