Hi Mike,
I"m currently not on either drug but my neuro wants to put me on
tacrolimus.
Would love to hear what the other's know about the 2 drugs.
Good luck with your treatment,
Sherry

Hi Mike, welcome to the forum. I don't take any of the immunosuppressants at this time but keep my eyes and ears open for the experiences of others. I'll be watching as tacrolimus is one that I've just started hearing about. Can I ask why you are having to change your treatment? I assume you are not having good results on your current treatment?
Cathi

Hello Sherry and Cathi!

I am changing from cellcept as the prednisone at 15mg and cellcept at 2g(standard dose) is not supressing my immune system enough to keep MG in the closet.

15mg on prednisone is the MAX I want to go on prednisone anymore. The side effects amplify at 20mg for me.

Ultimately, I'm an optimistic person. I am willing to take certain amount of risk to possibly find the "Holy Grail" immunosuppressant for my body. Speaking of which, where is our MG antibody specific T-cell immunosuppressant!!!!

Mike :)

OK!!! New "cocktail" of meds :)

Currently 15mg Pred. & 2G cellcept daily + IVIG 100G/mo.(split over 2 bags/days)

to

25mg prednisone & 10mg Tacrolimus daily + 160G/mo. IVIG (split over 2 bags/days)

Then with some luck, after I move in august, to taper down, way down on prednisone).

Lets go tacrolimus!

:)

That was fast! Can't wait to hear about your experience on tacrolimus.
What is the blood lab protocol on this drug? What did your Dr. say to look for as far a side effects?
Hoping the is the perfect "cocktail" for you.
~sherry

Sherry, I hope the new cocktail works as well!

My neurologist said we are going to monitor kidney function every 3 mo. with labs, in addition to cbc and basic metabolic panel.

I will try to keep a log of progress for people curious on tacrolimus. It is fairly new to the U.S. From what I have read similar to cyclosporine, slightly more "potent" and possibly less harmful to kidneys.

:)

mike

Hi Mike I hope the tacrolimus ( generic for prograf ) helps. I know of a few people on prograf, and my neuro was going to try it on me if cellcept didn't help. That was 5 years ago, so it isn't a new drug for MG, just another immunesuppresent .
I see you are from west virginia, beautiful state, I used to hunt deer there, in fact the last time I hunted there was in coopers rock.
oh yeah, I have found that ridin the harley is one of the better drugs for MG.
Take care & good luck
Terry in PA

Thanks Terry.

"Less commonly used" I should have used, based on my experiences. I have been to coopers rock many times. small world!

Terry,

How have your friends experiences been with tacrolimus? Very Curious.

Thanks!

Mike

Hello Mike, I used to be on Cyclosporine for a year, but due to high blood pressure issues, it was changed to Tacrolimus 2 month ago. too early to tell difference, but I have noticed on monthly blood test report that it does have the note" decreased kidney function" but no alarm bells have been going off yet with my neuro. Hard to say difference in oveall function. In February I was in hospital again for plasma exchange and tests to see if there were no other causes for my overall weakness (I look like I had a stroke on weak days,my whole mounth falls) It has been a year since diagnose/removal of benign tumour on thymes, but I have not been getting better at all. I was back on Prednisone 100 mg alternate days since February as I ended in intensive care again (where they check your vital signs every hour even through the night, which of course really helps a MG patient..!) I have now been approved for Rituximab to take over al l other meds. as nothing has been working so far....I am also on Azathopine 250 mg a day. Tacrolimus is 6 mg a day and prednisone 50/5 mg. Plus 3 weekly IVigs. Therefore I find it hard to pinpoint which side effect is from which drugs...the only thing which seems to work for me is Prednisone, but that has given me diabetes now...

BCCanada,

Im sorry to hear about how bad MG is getting you, and prednisone too boot!

Thanks for the post as well, hopefully the tacro will do amazing things for you!

Mike

Hi Mike,
Wondering how the tacrolimus is working for you.
~sherry

Sherry,

I am doing better on the new set of meds, but I ended up..... "cheating"

I bumped to 25mg of prednisone the same day I started tacrolimus.

So, for disease control, I am on 25mg Pred, 10mg tacro(5mg x morning/night) and 160g of IVIG/mo.

I am though, stronger,have less double vision and general fatigue 3 weeks later after starting tacrolimus. Is it from the tacro? More than likely not, too soon for it to kick in.

As soon as I feel confident I will begin tapering the prednisone....yet again(more than likely not until ive been on tacro for at least 2-3mo.

Side effects of tacro: For me, I notice my hands and feel are much more sensitive to changes in temperatures. For instance, I was working outside on my car in about 50 degree temps for a few hours. Came in to take a shower and my hands felt like they were out in 20 deg temps and then put them under hot water.

Thats about it. Falling/Staying asleep is becoming a challenge again. I feel if I do not weight train, go running, etc. I will have to take something to knock me out. I account that more to the 25mg pred though.

I look forward to the future months and possibilities this drug might provide. I still have yet to go get my kidney function checked. I have the script, but have put it off. I will report back with that!

I hope all is well with everyone today.

Mike

Thank you for the update Mike.
Hoping this ends up working for you. I know it is so frustrating---finding what works for you, learning to live with the side effects. I need to make a decision on what I am willing to try.
Take care and keep us updated on your progress,
~Sherry

HI Mike and all on this discussion
I am in a month or so going to see my Neuro about my longer term plan (immunosuppresents). I have just finnished a Radiation Therapy course and they were waiting for that to be done before starting the next thing.
I must admit, I am still confussed regarding what is desease control and what about symptoioms. I am currently on 20mg prednisone a day, and then 80mg Mestinon every 4 hours. In general my sysmptoms are much better than they were 6 weeks ago (after my Thymectomy) but I still have bad double vision.
Will reducing my Prednisone worsen my double vision, or could increasing my Mestinon improve it. I really dont know what affects what.
Will still talk to my Neuro about this, but very keen to hear from you guys that are experienced in this, as I am starting to believe that untill you have MG, you dont quite get it!

Thanks and keep all the great posts coming, I learn something new each day.

Regards

Christo