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ICLori
07-19-2006, 04:21 AM
We get asked frequently about the side effects of CyA, so here is some information about that and about CyA in general:

Neoral
Active Ingredients: Cyclosporine
Representative Names: Gengraf, Neoral, Sandimmune
Available Product Images:

CYCLOSPORINE (Sandimmune®, Neoral® Gengraf™) is a medication used to decrease the immune system's response to a transplanted organ, which the body would otherwise see as foreign. Cyclosporine is used to reduce immune responses and prevent rejection in patients who receive organ or bone marrow transplants. Cyclosporine is also used to treat severe rheumatoid arthritis, psoriasis, Crohn's disease or ulcerative colitis. Make sure you always use the same brand of cyclosporine unless your prescriber tells you to switch brands. Generic cyclosporine capsules are available.

What should my health care professional know before I take cyclosporine? They need to know if you have any of these conditions:
•gout
•high blood pressure
•infection
•kidney disease
•liver disease
•previous coal tar, PUVA, ultraviolet, or radiation therapy
•recent vaccinations
•an unusual or allergic reaction to cyclosporine, alcohol, corn oil, castor oil, other medicines, foods, dyes, or preservatives
•pregnant or trying to get pregnant
•breast feeding

How should I take this medicine? (Back to top)
Take cyclosporine capsules by mouth with a glass of water. Swallow the capsules whole; do not chew or break the capsule. Follow the directions on the prescription label. Take the capsules in a regular manner at the same time each day and at the same time in relation to meals. This will help you keep a constant amount of cyclosporine in your body. Do not take with grapefruit juice. Do not take your medicine more often than directed.

What if I miss a dose? (Back to top)
If you miss a dose and if you are less than 2 hours late for your dose, take the dose immediately. If you are more than 2 hours late for your dose, call your prescriber or health care professional for advice. Do not take double or extra doses.

What drug(s) may interact with cyclosporine? (Back to top)
•acyclovir
•antibiotics and other medicines for infections
•antiinflammatory drugs (NSAIDs, such as ibuprofen)
•bosentan (NOTE: bosentan should not be taken with cyclosporine)
•entecavir
•female hormones, including contraceptive or birth control pills
•ganciclovir
•grapefruit juice
•hormones such as prednisone or cortisone
•lovastatin
•male hormones
•medicines for diabetes
•medicines for fungal infections
•medicines for high blood pressure
•misoprostol
•omeprazole
•orlistat
•other medicines that suppress the immune system
•pamidronate
•probucol
•red wine
•seizure (convulsion) or epilepsy medicine
•sertraline
•St. John's wort
•sulfinpyrazone
•vaccines
•water pills (diuretics)
•warfarin
•zoledronic acid

Tell your prescriber or health care professional about all other medicines you are taking, including non-prescription medicines. Also tell your prescriber or health care professional if you are a frequent user of drinks with caffeine or alcohol, if you smoke, or if you use illegal drugs. These may affect the way your medicine works. Check with your health care professional before stopping or starting any of your medicines.

What side effects may I notice from taking cyclosporine? (Back to top)
Side effects that you should report to your prescriber or health care professional as soon as possible:
•confusion, depression
•high blood pressure
•irregular heartbeat
•increased urge to urinate or frequent urination
•numbness, tingling in the hands and feet
•problems seeing or changes in vision
•seizures (convulsions)
•signs and symptoms of an infection such as fever, chills, sore throat
•stomach pain
•wheezing or shortness of breath
•yellow-colored skin or eyes

Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome):
•acne
•bleeding or tender gums, overgrowth of gum tissue
•diarrhea
•excessive hair growth on the face or body
•headache
•leg cramps
•loss of appetite
•nausea, vomiting
•tremors

What should I watch for while taking cyclosporine? (Back to top)
Visit your prescriber or health care professional for regular checks on your progress. Your prescriber or health care professional may schedule regular blood checks. Do not change the brand of cyclosporine unless directed by your prescriber or health care professional.

Cyclosporine can increase your blood pressure. Your prescriber or health care professional will want to monitor your blood pressure and you may have to take another medicine to keep your blood pressure under control.

Cyclosporine can cause birth defects. Women should use effective birth control methods while taking cyclosporine. Women who become pregnant should discuss the potential risks and options with their physician.

Cyclosporine will decrease your body's ability to fight infections. Call your prescriber or health care professional if you have a fever, chills, sore throat or other symptoms of a cold or flu. Do not treat these symptoms yourself. Try to avoid being around people who are sick. Discuss whether or not you should receive vaccinations with your prescriber or health care professional.

After you stop taking this medication, some side effects can continue and some may not occur until years after the medicine was taken. These effects can include the development of certain types of cancer. Discuss this possibility with your prescriber or health care professional.

Cyclosporine may increase your risk for certain types of skin cancer, especially if you have psoriasis. To decrease your risk, were protective clothing, including hats, and use sunscreen with a high protection factor when exposed to the sun. Avoid using tanning beds.

Cyclosporine can cause unusual growth of gum tissue and can make your gums bleed. Practice good oral hygiene, and be careful when brushing and flossing your teeth. See your dentist regularly.

Avoid drinking alcohol while taking cyclosporine. Do not drive or operate machinery until you know how cyclosporine will affect you.

If you are going to have surgery, tell your prescriber or health care professional that you are taking cyclosporine.

Where can I keep my medicine? (Back to top)
Keep out of the reach of children in a container that small children cannot open.

Store at room temperature below 25 degrees C (77 degrees F). Keep doses in the original packaging. Throw away any unused medicine after the expiration date.

IcyAngel23
07-20-2006, 12:47 PM
Awesome. Glad you posted this. I read it and even I was overwhelmed by the side effects. If some of you don't know I've been on CyA for 13 days. You can look at my other posts to see what I experienced. So don't let all of this info scare you. It is risky but your dr monitors you so closely that if something occurs it can be delt with right away. The kidney and liver failure can be reversed soon after you stop so you can get off of it is that occurs. Most of these side effects are rare and don't happen to patients taking a low dose like us. It is still a possibilty so make sure you know what to look for. The most commom side effects for ICers are:nausea,stomach aches,acne,mouth sores,hot flashes,rapi heart rate, tremors,high blood pressure and fatigue. I had most of these the first two weeks but quickly subsided. Not the nausea but it's managable. Just so you know we (ICers) take a way lower dose than it is normally prescribed for transplant patients. So the risks are lowed dramtically. Hope this helps. Good luck to all who are thinking about taking or are currently on this
Kristin

ICLori
07-21-2006, 04:37 AM
Kristen (what a pretty name you have!) thanks for letting people know that the side effects can be pretty intense (to say the least, the worst side effects I ever had with any med were with CyA) but that it can be worth it if it beats the IC back and gives you back your life.

Plus a lot of times the side effects do go away after the first several weeks.

I had side effects again when I increased the dose, and I've been struggling with nausea, diarrhea, extreme tiredness, but now (today) I am feeling much better. No more nausea and diarrhea, and I'm still more tired than usual but not as bad as before, so I'm betting that will fade with time too.

The best news of all is that for the past several days, I haven't had hardly any bladder pain at all - mostly just a little bit at night - last night it was so slight that I only needed 1/2 an Ultram - I'm starting to think this med might just work on my bladder pain after all, it might just work for me! Woo hoo!

Anyway, I hope you continue to get better and better, too.

Blessings,
Lori

IcyAngel23
07-21-2006, 02:48 PM
Yeah!!! Lori.
I'm so jealous. I have been pain med free most of my IC life. My dr didn't want me to get hooked or cause other problems. At the begining of taking CYA I would've given my left leg for drugs. I just felt all crappy but hey today I'm so much better. My bladder was out of control and now I'm back in control. I used to call my bladder my misbehaving child and now it doesn't even register on my mind anymore.
It took me a longtime to actually like my name so thanks for the compliment. I think it's so weird that the other two on it are named Lori/Laurie. How cute. Well hope you can really enjoy this weekend with the lack of pain. Take care
Kristin

ICLori
07-21-2006, 06:18 PM
Oh, Kristen, I'm so sorry. I think it's barbaric that your doctors let you suffer so much when there are meds that could have helped you to be comfortable at least part of the time. I have seen this happen so many times - and many docs have refused to help me with my pain, too. It just all depends on the doctor. And what is sad is that if you try to go to another doctor for help, you might get accused of doctor shopping.

I understand now why things like internet pharmacies are so popular - where you just get the meds without a doctor, or with just an "interview" via the internet with a doctor. Sometimes people get desperate and they will do anything for some relief from the pain.

I'm so glad you are getting better, though, and that you don't have as much pain. Hopefully you will get better and better each day (although we have to be prepared for bad days, I've always heard that you kind of go back and forth as you get better) and eventually hopefully you will be in total remission forever.

Isn't it the greatest thing in the world when your bladder leaves you alone for awhile and you don't even feel it? Other "normal" non-IC people have that almost all the time - they probably don't even realize what a blessing that is.

Oh, wow, you have a really beautiful name. Kristen. I like that name a lot. You know all of the women I've known named Kristen have been really pretty, too. That's neither here nor there, I just thought I'd mention that, that Kristen to me is a pretty girl's name.

Well, today my bladder started bugging me again. It started in about 2:00 P.M. I have no idea why.

Actually, I'm beginning to wonder if it's tied more to the Minocycline I'm taking for my rosacea...when I skip a couple of days, the bladder pain comes back way stronger and joint pains too....hmmm...minocycline is one of the drugs used to treat Lyme disease...I keep turning that idea around in my brain, that maybe I have Lyme disease....I just don't know. But I think I'll be taking my minocycline faithfully from now on...sigh. But then I won't know if it's the CyA helping me or the antibiotics...

Hope everyone has a pain-free weekend.

Blessings,
Lori

IcyAngel23
07-21-2006, 10:08 PM
Thanks again Lori. Before my IC totally took over I was total hotty. I miss that. So hopefully CyA will help me turn it around. I'm getting my flity self back. I keep seeing guys on the boards and I just want to flirt. Oh well, now I know I'm getting better.
I was really mad at first about no pain meds but then I decided that if I could do it then I should try. I did pretty well with it but there were times when I couldn't so my dr gave me some Ultracet,Vicodin or Tylenol 4. So he wasn't totally unfeeling. He really watched out for me like I was his daughter.
Too bad cause he is a hotty. He's maybe 36 but a hot 36.What's 12 years? I've been so lucky that all of my drs are very young and willing to try new things. Even though he didn't want to give CyA to me at first I could just run up and kiss him for the relief it has given me. Ok so enough about my hot drs. I haven't seen this side of me in years and I love it. I feel like I'm 18 all over again and ready to go out and have fun. Now all I need to do is get the extreme fatigue to go away. Ok so 18 was like 6yrs ago but still in my mind it was a lifetime ago. So here is to us girls... who are hoping this year will be better than the last!!!!Enjoy and let yourself have fun. You'll never get these days back.
I always liked my middle name better than my first. I always wanted to change my middle name (Emily) to my first. I'm sure all of us go thru that when we are little. So I've really started to like Kristin.
Take care
Kristin

ICLori
07-22-2006, 04:58 AM
Hi, Kristen, you ARE feeling better! That's wonderful! The sex drive comes back when we are feeling at our best - that's good proof that CyA is helping you! I had a crush on one of my doctors, it's completely normal, LOL.

I feel like your life is going to be given back to you now, and you can do all the things you have been wanting to do but couldn't because you were hurting so much all the time!

I'm feeling well today, after a mini-flareup last night. I guess it's going to kind of be back and forth for me, for awhile at least.

I'm so glad you are feeling good!

Blessings,
Lori
P.S. I know what you mean about the stinky pills. Skunk pills I call them! Blech! I have to breathe through my mouth when I take them, and for a minute afterwards, or I gag. Never smelled such stinky pills before in my life!

louise
08-14-2006, 12:40 PM
Hi Lori,

I Just Read Some Of The Info You Posted About Cya. Can You Please Tell Me Where This Is From. Thanks Very Much.

Louise

ICLori
08-14-2006, 01:25 PM
Hi, Louise, it was some on-line medical site, don't remember where now.

Here are some links to places that have similar information on the side effects of Neoral (Cyclosporine-A):

http://www.netdoctor.co.uk/medicines/100001817.html
http://www.medicinenet.com/cyclosporine_microemulsion-oral_solution/page2.htm
http://www.rxlist.com/cgi/generic4/neoral_ad.htm
http://health.yahoo.com/drug/d00079a1

The best source of information is your doctor, of course, but these sites and this information that I posted above, is posted just to give general information about Cyclosporine-A. It's not meant to substitute for talking with a doctor - just something to help a person decide whether or not it's worthwhile to talk to a doctor about trying Cyclosporine-A.

Blessings,
Lori