[cait24]

Anybody take Tacrolimus as an immunosuppresant for MG? If so, how well did it work and did you have side effects?
I thought they were going to switch me to Imuran. But they want to switch me to Tacrolimus.

thanks
kathie

[AnnieB3]

Wow, Kathie, that drug, in my opinion, would not be good for you (considering the kidney situation). You have had signs of kidney dysfunction, right?

It's a very strong drug. If it were me, I'd wait until seeing rheumatology before making any kind of decision. What if whatever inflammatory condition is going on is a larger concern? And what if it is making MG worse?

I honestly think that you have to figure out what is driving the sed rate before you take on any more drugs. I'm frankly quite concerned about what's going on, as I'm sure you are.

More isn't necessarily better. Smarter would be, in your case.

But that's only my opinion!

Whatever you do, I hope it goes well.

Annie

[cait24]

Thanks Annie. I was concerned about the side effects. I think they choose that because it is very fast acting and my mobility and pain has gotten much worse since coming off steroids. I was left a message and still need to talk to the doctor first. Before they put me on any more immunosuppresants, I want a muscle biopsy and complete antibody panel to figure out what else is going on - ANA, SSA, SSB, SM etc. I am willing to try this for a short time as long as there is a bigger plan. But I am in need of immediate relief. I am thinking of asking for IV steroids with the IVIG. I can't take oral - nausea, vomiting and GI bleeding.

I will keep you posted,
kathie

[AnnieB3]

Don't forget C3 and C4.

If you don't have lupus or something similar, I'd be really surprised.

You don't have asthma, but Flovent would bypass the GI tract issues. It goes systemic, just as the tablets do. It's just as hard to withdraw from, though.

I'm so sorry you are in such misery. Is it muscular pain?

I think that taking time to think before taking a drug is really smart. Not to compare you to a drug addict, but that's what it feels like, doesn't it? That you need a fix and you need it NOW! At that point, you are so desperate for relief that you'll try anything. I've had that kind of pain and it's not easy.

Put those docs to work!

Annie

[cait24]

I have muscle pain, joint pain, tendon pain, electrical shocks, it hurts right to the bone. Since coming off prednisone, my arm muscle have gotten so weak, the legs were always weak. If I get a good nights sleep the pain goes away and then gradually build as the days goes on. It is unbearable at night.

I think my other symptoms fit Lupus or dermatomyositis, Both effect all organs, give lot of pain and give the face rash and livedo reticularis rash. I am leaning towards dermatomysitis because I have the rash on the eyelids and swelling of the eyes before prednisone. Dermatomyositis is much rarer than MG only 1,000 cases in US. So a lot of dermatomyosotis have MG, but not a lot of MGers have dermatomyositis because it is so rare. I just want to be thorough tested and diagnosed before they put me on more meds.

I am going to go to my local Rheumy or one at John Hopkins before I start new meds.
kathie

[AnnieB3]

I remembered this info, which you might want to consider.

http://www.nature.com/bmt/journal/v2.../1702223a.html

If you have trouble with Azithromycin/ZPak or Clarithromycin/Biaxin, you might have trouble with Tacrolimus.

Annie

[JimInMI]

Kathie, do a search here on ProGraf (tacrolimus). There are several related threads. I'm on imuran and yes, it does take some time for it to kick in.
Jim