Nerves pain pins and needles

[tazmoe]

Hi

I wrote the other day 9n here about this topic and I was asking does anyone how takes a dose off mmf 3g a day as I spoke to the doctor how said it maybe a sign off side effects off raking mmf she didn't tell me to stop or said about running it passed the rhymuy other other out there get any off the same probs? Any advice would be gd

[Samisntverywell]

Hi,

I'm taking mycophenylate too. I had lots of nerve pain, sensory loss, and motor weakness before I started it. At this point in time (6 months on mycophenylate) the nerve symptoms continue to progress, at the same incremental rate for the motor symptoms in my hands and arms, the sensory loss is in distinct nerve territories now, rather than what seemed to be odd random patches. Since I've been on the meds I've also developed a feeling of shakiness, wobbly, trembling in my front of thigh muscles, which in addition to motor probs in feet and ankles has really brought me to a stop.

I've always had nerve pain with this, so my baseline isn't the same as you. I've had more electrical flashes type nerve pain since being on the meds, but the deep pain that's really debilitating has stayed the same. I'm also getting pins and needles more in my 'good' hand.

So, with the same concerns as you really (are these meds working or making me worse?!) I had the chance to discuss it fully last time I went. I was told that the meds can take up to a year to start to work, (though they usually work quicker than that) so that wasn't a worry for them. The flashing nerve pain may be the meds, disease progression, or nerves that are regrowing can be painful too, and the shaky legs can be a side effect of mycophenylate rather than disease progression. They didn't comment on the pins and needles. I've got my next nerve conduction study early January to monitor progress against the baseline one they did before I started the meds.

I've found it quite a tough medication to be on, it's taken its toll on my body. But I do feel I am with a neurologist I trust at last, they've been totally honest with me about the treatment plans, their reasoning, I feel that I am being monitored well, and that they'll change things if needed. So, given the rubbish I've been through, this seems a sunnier place... Even though nothing is actually getting better or slowing down... Yet!! (I put 'yet' on the end of everything, it's a discipline!!!).

I've come to think of mmf as a slow motion drug, and I imagine it to work by cunning and stealth, creeping around slowly in my dark innards, making adjustments, calibrations, which amuses me. I think because it deeply affects the very nature of how your body works its a bit of a free for all with side effects.

Maybe there's something helpful in there?! X

[tazmoe in reply to Samisntverywell]

Thank you I didn't suffer no side effects to begin with but I've been taking mmf for about 3 yrs now on top off everything else I have to. Take, I hope side effects cause it took and long time to get into remission and with this disease chemo 6 sessions drips only the last few mths have I felt normal touch wood I will run. It passed the consultant as it was the gp I spoke to

Thanks for reply

[Samisntverywell]

Sorry, forgot to say, when you mention doctor did you mean GP? Because they are 'in up to their neck' with this stuff. If you haven't mentioned this to consultant then you do need to, same for almost everything except odd bits of normal stuff. (bossy me)