cyclosporine side effects

[SNichols]

Have been taking cyclosporine modified since the end of July. Dosage is now 400 mg daily down from 950 mg daily.

I am dealing ok with most of the side effects except one. The extreme stomach ache, burning tummy pain after taking pills. I have discussed with doctor who said it is ok to take a tums or something like that. Which has helped but not relieved pain. 30 mins. after taking all my meds. I can't do anything but sit and watch tv the pain is too much to move or concentrate.

Have tried bland meals no acids, I have tried slightly acidy meals, I have tried not eating, that is the worse.

Haven't tried taking the cyclosporine by itself, because my doctor said the other meds. aren't the problem.

I am asking for suggestions, problem solving solutions to major heart burn, I can deal with all the other side effects. Does somebody have a food formula, to make this medication stop burning, or is it an hour out of my day that is nothing, shut up and sit there. It could be worse.

I have sever AA, I have had one ATP treatment, I think I am getting better.

[Lisa V]

Suzie, are you also taking prednisone? If so, that seems like the likely culprit to me. My husband had terrible acid reflux with the prednisone, which went away as soon as he tapered off it. Cyclosporine alone never gave him that. He was taking Tums and sleeping sitting up, and a doctor friend of ours gave him some Nexium, but none of that helped as much as just getting off the pred.

[Debra]

Dad has stomach issues and nausea with cyclo also. We've found that taking it with Ensure helps a little bit.

[Greg H]

Hey Suzie!
I'm thinking about starting cyclosporine. I've read the laundry list of side effects, but am curious about which ones actually crop up. May I ask which you have had aside from the stomach ache?
Thanks,
Greg

[triumphe64]

Muscle weakness. Taking magnesium oxide helps this. Check with your doctor as to how much.

[Laura]

Greg I had severe side effects from the CSA. I ended up switching to Prograf for many reasons. I also used Prograf and not CSA for transplant. I had severe muscle cramping. Electrolyte imbalances. High BP. Severe HA. Etc, etc.

Laura

[Greg H]

Laura,

Whoa! Sounds like CSA was horrible.

I don't know anything about Prograf, so I'll look it up. Thanks for letting me know about your experience.

It's pretty darned hard to decide about this stuff based on a bunch of numbers, so it's great to hear some experiences of real folks.

Greg

[Laura]

Greg,

Prograf is the new version of CSA. Many places are starting to use Prograf in place of CSA. It has less side effects and is more tolerated.

Laura

[Greg H]

Hey Laura!

Thanks for that info. I'll add that to the long memo I am sending to my primary oncologist as something to talk about at our next appointment Tuesday week.

That's when we'll be discussing whether to start some immunosuppression, start Vidaza, or roll the dice and watch and wait for another 3-6 months.

Thanks!

Greg

[Hopeful]

Hi Greg,

I've read that people with MDS with trisomy 8 are very responsive to immune suppressant therapy. So, that would make me think that Vidaza shouldn't be a first course of treatment for you. Cyclosporine is usually pretty well tolerated and is less risky than Campath or ATG. The downside is that it takes about 3 months to see if it is working. Also, it can be hard on your kidneys. So, you must stay well hydrated and track your creatinine. Despite all this, it seems like a good use of watch-and-wait time, since you have the trisomy 8 mutation.

I've been on cyclosporine for almost 2 years, and my counts are still slowly rising because of it. I haven't had bad side effects on the lower dosage (4 mg/kg/day). The only thing that I can think of is a heightened sensitivity to the sun. MY BP is fine, and I'm still very active. On high dosages (12 mg/kg/day), cyclosporine was a lot rougher for me.

Everyone is different. I thought I'd just throw in a positive cyclosporine experience for you! Best of luck!

[Greg H]

Hey Hopeful!

I like your handle. I should have thought of something catchy.

Thanks for the info on your CSA experience. My reading confirms yours on trisomy 8. Plus I'm HLA-DR15 positive, which is another good sign for that sort of therapy. I tested negative for PNH, though, which seems to be something a lot of h-MDSers have.

My marrow is 40% cellular, down from 50% six months ago. That's technically not quite hypocellular, but, given that your typical MDS person is hypercellular, my transplant doc considers that I'm pretty much h-MDS, which is why I am thinking cyclosporine.

I love my doc, because she is a real go-getter, smart as a whip, and doesn't hold anything back. But she is one impatient woman. She thinks we should see results from CSA in three weeks! So I am glad to hear that more like three months is what your experience indicates. I'd hate to start something and get only side effects and then quit before the benefits kick in.

My primary oncologist is a bit more laid back; I hope to see him in about ten days and talk through all this. Your info really helps.

Keep on hopin'!

Greg

[crpa]

Hi Everyone:

Has anyone experienced headaches from withdrawal or lower doses of the cyclosporine?
My husband is now on 75 mg a day, which as of last couple of weeks has been lowered by his docs from 150 mg.

He is 65 days post a MUD mini stem cell transplant.
Any help or ideas will be greatly appreciated.
TY Christine, wife and caregiver