Weakness

[adrienneioannou]

I am on week three of mycophenolate. I have been experiencing the feeling of my legs being weaker and my hands shaking. Anyone else experience this?

[Purpletop]

Yes, it isn't uncommon - I'd give it a week or two, it takes a while for the body to settle down. Obviously if it gets worse speak to your prescribing doctor but this usually settles.

[magSLE]

Hi, I've been on mycophenalate for 9 mths now & I'm functioning ok, except the 1mth of Shingles & 1.5 mth of Anaemia straight after (still recovering). If you've just started taking it, maybe your body's adapting & it's just getting into your system. Do you have regular blood tests? I had to at first to monitor body reactions.

[adrienneioannou in reply to magSLE]

I do have regular bloods tests. I aM introducing it slower as when I did it quickly it made me feel awful.

[magSLE]

Adrienne, great that you have regular blood tests because if your symptoms get worse, it just might not be the med for you but I think it tAkes 2mths to get into your system properly so I hope you get your strength back soon x

[diane1428]

Im not on the medication but I do have weak legs, arms and shaking hands. I also have a peculiar sensation in my head that occassionally feels like it is being shaken in a food mixer though my head doesnt move. Does anyone else have it. YUK. IM SLE and APS. Regards Diane

[adrienneioannou in reply to diane1428]

Diane I also have slept and aps. I am to see my rheumatology doctor on Tuesday so I am going to ask about this. My legs are especially shaky going down stairs.

[diane1428 in reply to adrienneioannou]

Best of luck on Tuesday.

I dont see my Rheumy again until August. My problem is my doctors just dont know what to do so ive just stopped going to them.

I have several problems such as pain in every joint and a pain in my lower bowel region that three months ago I tried to get them to deal with but after 10 weeks I gave up especially after my doctor said there was a test come into the surgery, he didnt know what it was for but I may as well have it as the surgery hasnt tried it on anyone yet.

Hows that for confidence.

I do find problems coming down stairs especially in the mornings. Come to think of it going up them isnt much better.

Best of luck

Diane

[Hidden in reply to diane1428]

Hi diane1428

Yes I have that very strange feeling in my head and the way you describe as 'being shaken in a food mixer,' is spot on. I saw a neurologist last Wednesday for this as well as minor 'seizures,' temporal pain, numbness and pins/needles and even more difficulty thinking than usual! I also have severe shaking in my hands and legs, especially on the right side. They have referred me for a scan but she didn't think it would show anything. I don't know what they do in that case. I take it you have not had a scan?

[diane1428 in reply to Hidden]

Hi,

yes I have had a scan three in fact all coming up with nothing and the neurologist being most unhelpful stating more or less I didnt know what I was talking about and I must be putting on the symptoms.

if any one can throw light on it I would be most grateful. It is a terrible feeling and the minor seizures are horrible. Since ive been on the warfarin and they now let me do my own amounts I dont get the pins and needles so much.

Finally the doctors, (my local gps) are so throw with the illness they dont know what to prescribe or say other than it is very interesting. The Haematology department made an appointment with me and I spoke in depth to the haematologist who said she had never had anyone who knew first thing in the morning how bad my INR's were and so has left it to me to self medicate. Since doing this last 4 weeks my INR's have been spot on. I have to have it between 3 and 3.5. This may sound high to some but I revert back to seizures etc if it goes under 2.9.

Best of luck with you scan part of me wants them to find something to diagnose for you but also I certainly wouldnt want you to have anything else. This is bad enough to cope with.

Good Luck Diane

[Hidden]

Here is the link for side effects:

drugs.com/sfx/cellcept-side...

"weakness or heaviness of the legs"

[adrienneioannou in reply to Hidden]

Thanks, for the info. I didn't know there were so many side affects and I seem to have a few of them.