Side Effects of Cellcept?

[steve]

Hi, newbie here.

Just wondering if anyone knows of any side effects from taking Cellcept?

I've been taking 2000mg a day for 3+ months now and my hands/fingers started to "freeze up" like a cramp? But they stay frozen unless I massage or pull them back to "normal".
Lately it's starting to affect more of my body like my forearms and biceps.

Really wierd.

I'm taking less and less steroids(prednisone) so that shouldn't be the problem, right?


Thanks in advance.

[lashy]

hi and welcome steve. I am am sorry I have no answers but i am sure someone will be along soon with some answers
emma x

[rosa t]

Hi Steve

I was on ellecept for 6 moths - vile stuff!

The information leaflet is frightening!

4. POSSIBLE SIDE EFFECTS
Like all medicines, CellCept can have side effects, although not everybody gets them. Some of the more usual problems are diarrhoea, fewer white cells and/or red cells in your blood, infection and vomiting. Your doctor will do regular blood tests to monitor any changes in the number of your blood cells or changes in the levels of any of the substances carried in your blood, e.g. sugar, fat, cholesterol. Children may be more likely than adults to have side effects such as diarrhoea, infections, fewer white cells and fewer red cells in the blood

CellCept reduces your body’s own defence mechanisms to stop you rejecting your transplanted kidney, heart or liver. Consequently your body will not be as good as normal at fighting infections. So if you are taking CellCept you may therefore catch more infections than usual, such as infections of the skin, mouth, stomach and intestines, lungs and urinary tract. As can happen in patients taking this type of medicine, a very small number of CellCept patients have developed cancer of the lymphoid tissues and skin.

General unwanted effects affecting your body as a whole could include hypersensitivity (such as anaphylaxis, angioeodema), fever, lethargy, difficulty in sleeping, pains (such as abdominal, chest, joint/muscle, pain on passing urine), headache, flu symptoms and swelling.

Other unwanted effects may include:

Disorders of the skin such as acne, cold sores, shingles, skin growth, hair loss, rash, itching.

Urinary disorders such as kidney problems or the urgent need to pass urine.

Disorders of the digestive system and mouth such as constipation, nausea, indigestion, pancreas inflammation, intestinal disorders including bleeding, inflammation of the stomach, liver problems, inflammation of the colon, loss of appetite, flatulence and mouth ulcers.

Disorders of the nerves and senses such as convulsions, tremor, dizziness, depression, drowsiness, numbness, muscle spasms, anxiety, changes in thinking or mood.

Metabolic, blood and vascular disorders such as weight loss, gout, high blood sugar, bleeding, clots and bruises, change in blood pressure, abnormal heart beat and dilation of blood vessels may be seen.

Disorders of the lungs such as pneumonia, bronchitis, shortness of breath, cough, fluid on the lungs/chest cavity, sinus problems.

If any of the side effects gets serious, or if you notice any side effects not listed in this leaflet whilst you are taking CellCept, please tell your doctor or pharmacist. However, do not stop taking your medicine unless you have discussed this with your doctor first.

I ended up having symptoms from each of the categories! It di however reduce the proteim leak but unfortunatley for me it damaged my kidneys!

Swings and roundabouts!

Hope the cramps to lessen - qinuine may help wither in tonics water or tablets.

love

rosa

[steve]

Thank you all for the messages here and elsewhere.

I guess I'm lucky that these muscle spasms haven't really occured until now, my 15th week. I only have a week and half left so I'll be glad for the end of all these meds. :whew:
I read my prednisone thingy and it says I'll have muscle loss/spasms as well. Plus I actually got "fat" on the sides of my head along with my stomach and chest. Anybody got a "manzaire"??? -lol
Strangely enuff I only gained about 10lbs during this even though I eat 4 meals a day... strange.

It's weird but last time we did this I didn't as much of a dosage and it seemed to help for about 8 months. It didn't fix me but it cut my protien loss in about half and I could actually work part time.

This time I am actually getting stronger during the intake of this higher dosage but these muscle spasms are getting to me:whine:

I can't wait to stop being "tired" and at least get back to last Summer when I could work(be useful) and work with free wieghts.


Thanks again to all!!!


:cheers:

[bluemoon]

Hi Steve,

on a positive note I take cellcept 1,000mg twice a day and pred 7.5 once a day. Taken for the last five years and mainly side effect free. My immune system is fairly crap, always picking up coughs and cold but I think is how it is with anti rejection drugs. But mainly it works OK and lets me get on with things.

Hope it works out for you. James

[Rachel]

Hi well i,ve been on cellcept for almost two yrs and i,m glad to say apart from having abit of a dodgy shomach for the first few months i,ve had no side effects .I think it just shows how different drugs effect us all

[Doolally]

Hi Steve, Its really hard when you've got chronic illness, then you're put on a load of drugs, then you get funny symptoms and you can't pin-point the cause. Everyone reacts so differently too.

Its annoying as well cos some of the symptoms can really effect your life and be really debilitating. If you had a similar problem and you weren't ill or on drugs the GP would probably look into it and do tests. But when you're ill anyway they just dismiss you a bit because its just another symptom of many. Even though things are bad enough to have to give up work, its just left for you to deal with on your own.

What you describe is something like I've had, although I think mine is from the steroids rather than cellcept. When I first started cellcept I also started high dose steroids so it was difficult to know what was what. I found not getting cold helped. I got it in my legs too and I like putting my feet in a bowl of warm water. Its more uncomfortable than painful. Is that the same? And it can last for ages and ages. It helps to massage and stretch, but doesn't always go away.

It really is swings and roundabouts. My quality of life is actually worse when I'm on the high dose medication, even though my kidneys improve. But when I'm on less meds and have worse kidneys (high protein leak) things aren't much better! Its a vicious circle!

I hope it wears off as you reduce the meds.

[steve]

Man, this is an awesome board!!!

I just reread every response I got and it is helping me immensly.

Thanks to All those who responded!!!!!!!

I hope I can help someone here sometime in the future.



:cheers:

[wandablack]

Hi Steve

I had a kidney/pancreas transplant in November last year. I had been on Cellcept 2000mg per day. The only side effect I had was a constant upset stomach.

Two weeks ago i was put on myfortic (i think the same as Cellcept but made up differently). I have had no problems since.

Are you on tacrolimus? Could that be causing your probs?

Good Luck

[Mike]

Hi,

Yeah upset stomach was my only side effect on mmf too, you can take it after food unlike tacro which really helps that

MIke

[SteveUK]

Hi Steve, welcome!

I've hads many side effects from my medication but I think it's impossible to pinpoint which side effects are caused by which medication I'm taking, although reading the Cellcept/MMF leaflet lists diarrohea, tiredness/change in sleep patterns, stomch upset and some others which I can't remember but I have suffered from all of the above on and off.

Take care,
Steve