cyclosporine

• By DJIndiana
• Posted October 7, 2008 at 9:45 am

I am on week 4 of cyclosorine 125 mg and 10 mg of predinose. I have had weakness, a feeling of warmth thoughtout my body, tingling in my hands and feet. I have also been nausated and so weak and tired that I didnt think I could move. But these symptomns come and go. And like you I have good days and bad days and there isnt any rhymne or reason to them. My Dr. didnt discuss any side effects with me. So I have had to do all the research on my own.

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• By lriso
• Posted October 7, 2008 at 11:08 am

I am on 300mg of cyclosporine per day. I was relapsing (diagnosis: MCD) every 2-3 months. I have not relapsed since starting cyclosporine and it has now been nine months and my 24 hour protein is miniscule. My protein is now one hundreth of a gram after being about 12 grams at its worst. I have very few if any side effects. No weakness or throbbing. I did not think cyclosporine caused weakness. I thought it was only prednisone that caused weakness. The only side effect I have is occasional GI distress maybe once per week. Have you checked your thyroid function (TSH levels)?

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• By evag
• Posted October 7, 2008 at 3:35 pm

thanks so much please keep me informed on your health and well being.

God bless
EvaG
xoxoxox

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• By evag
• Posted October 7, 2008 at 7:32 pm

Thanks this is what I need , so that I wont be too alarmed. Even more so, when I am having a rough day.


Be blessed not stressed
Eva G

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• By smk
• Posted October 8, 2008 at 1:02 pm

I was on 90 mg prednisone daily for 3 months (MCD) and now have tapered off to 5 mg every second day. I started cyclosporine during the tapering off process with 100 mg twice daily (total 200 mg) and that has been reduced to twice 75 mg daily. The cyclosporine gave me a gout episode in my big toe, which was cured by a 'hit and run" treatment of 50 mg prednisone daily for three days and then for a second three days. The tiredness is not caused directly by cyclosporine IMHO, but is a result in my case of the kidneys not getting rid of toxins in the blood as efficiently as before the MCD. The toxins build up as a direct result of body/brain activity. So, after activity, toxins build up,and I feel tired, I rest, sometimes nap, with my legs above my heart, and after about an hour I am ready to go again. I think that the tiredness would occur no matter what medication I take, as long as I am active and build up more toxins than my kidneys can process during the activity. BTW, the prednisone gave me diabetes, which has disappeared now that I am on cyclosporine, so there is a silver lining...
All the best.

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• By smk
• Posted October 8, 2008 at 1:05 pm

I mentioned in a previous post that I rest and nap with my legs above my heart to ensure draining of fluids fron my lower limbs. I should have mentioned that I achieve this in comfort by lying on my stomach and placing my ankles and feet on a cushion at the bottom of the bed. Try it, you might like it. I also wear compression stockings during the day.
Cheers again.

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• By evag
• Posted October 8, 2008 at 8:49 pm

Wow I dont think I slept on my tummy since my first pregnancy. So I need to work out to rid toxins.
I walk a lot , but never break a sweat. Thanks so much. Please keep in touch
Eva G
xoxoxo

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• By kshearer
• Posted October 9, 2008 at 9:11 am

Dear Evag,

My daughter was put on Cyclosporin early this spring. The doctor told us that if was possible that she would have some legg cramping and abdominal distress. Increased hair growth (especially on the back).The biggest side effect being that she would have a decreased appetite. She does complain that her leggs and arms hurt, especially in the morning. A warm bath usually clears it up enough for her to feel comfortable. All and all the cyclosporin has worked much better than the prednisone. We have not had a relapse sine being established on the cyclosporin. She has lost the moon face caused by the prednisone and seems to have MUCH more energy. Since it decreases appetite she also has lost much of weight that she gained while on the cyclosporin, since prednisone creases your appetitie. Now we battle with her to get her to eat.
I wish you all the blessing in the world and pray for a quick recovery.
kshearer

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• By popsycle
• Posted October 9, 2008 at 3:35 pm

I am on Cyclosporine, I started with 100mg twice a day but my face would burn about half hour after I took the pill and last atleast a few hours. I also couldn't always feel the differance between cold and hot on my hands and feet. My dr had never heard of these symptoms but took me down to 50mg twice a day. This is working great for me and my protein just keeps going down. However he is very surprised that such a small amount is working so well. I have read on here before that these symptoms do go away after a while. I am only in the first stage of fsgs so I don't think mine is as agressive as some. Good luck everyone!

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• By evag
• Posted October 15, 2008 at 9:05 pm

thanks for your helpful advise may god bless you both.

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• By Drkevorkian
• Posted October 16, 2008 at 4:18 am

I´ve been taking cyclo for almost 10 years. Those synthoms that you have are quite normal in the beginning but they tend to disapear with time.

Just a little advise. Never take cyclo with empty stomach.

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• By evag
• Posted October 16, 2008 at 12:33 pm

Thank you so much


Eva G

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• By Nash
• Posted November 15, 2008 at 9:36 am

Hi

I have been taken cyclo (100mg a day) for over a month now and initially found it really helpful. My protein levels went right down and I started to feel so much better. I was also taking 50 mg of pred at the time too. The only side effects that I have are the odd leg cramps and more prone to infections. The leg cramps have settled down a lot.

Definitely agree about not taking cyclo on an empty stomach. I eat every 3 hours and find that this really helps too.

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• By Nads
• Posted November 16, 2008 at 3:55 am

I took cyclosporin for 3 Months. I was constantly vomiting and generally feeling dreadful. They eventually gave me the liquid form, along with anti-nausea drugs which helped a little. I also had excessive hair growth and weight gain. Consequently, this did not put me in remission

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• By MacLean
• Posted November 16, 2008 at 11:43 am

I have been on cyclosporine for seven years now and am thankful that this drug exists. I tried prednisone and cytoxan for three months to no avail. The prednisone was continued and cyclosporine and cellcept were added. After a period of time the prednisone was dropped and I continued with the cyclosporine and cellcept. I experienced the awful cramps, increased hair growth on areas I didn't like, great eye lashes and strong nails. Over the years the cellcept was dropped and today I am only taking 25 mg BID of cycosporine to keep me in a "drug induced" remission from MGN. When diagnosed the MGN was at stage III/IV so I am a supporter of cyclosporine despite it becoming nephro toxic and destroying some of my kidney function. The way I look at it is ... without this drug I would have lost my kidney function anyway. Today I feel fine but there were many awful days in the first year or two of this struggle.

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