Plasmapheresis

Myasthenia Gravis
#1

On Oct 11, 2007 I returned from the hospital after having plasmapheresis. My treatment consisted of five treatments, every other day. I was in the hospital 15 days in total. The first 4 days in ICU with a fluid-on-the-lung MG crisis, got in the room late one afternoon, started the treatment the second day after. Each treatment took about 3 hours total and some improvement was noted the day after each treatment. Real improvement noticed after the third
treatment. I was released from the hospital about 4 hours following the last treatment. I’m currently on Mestinon 4 times a day and 60 mg prednisone once
a day. Started physical therapy today to try to get some strength and tone back.

The “pheresis” team said the treatment should provide continued improvement for several weeks. Re-treatment, if necessary, usually occurs six to twelve months out. They didn’t provide any stats on how many returned or what the chances were. I hope never to have to return!

#2

Hi!

I was glad to read that plasmaphersis worked for you! I went into the hospital on December 11 in crisis and sent to the ICU. I was seconds away from being put on a respirator, but my breathing stabilized. It was determined that I should have plasmaphersis. Unfortunately I was unable to lie down and have the catheter implanted. Besides, I just felt the procedure was too much at this point. I argued for IVIG (which I’ve had before with success.) After consulting with my neurologist’s partner, she agreed with my assessment and we went the IVIG route. I took the 5 day treatment, started on Mestinon, Prednisone, and Imuran. The results were astonishing! The droopy eyelids (mine were both drooping!), the double vision (which was horrendous), the muscle weakness - all gone.

BUT, its been replaced with nasty side effects of the meds. Fluid retention in my feet, ankles and legs and terrible (I mean TERRIBLE) leg cramping. My hands also cramp. So, what to do??? I am going to take some advice and eat more potassium rich foods and drink more water. I am also taking a calcium suppliment, which the docs suggested during my last crisis.

Any thoughts? Have you come across any other home remedies that might help?

Hope you are doing well. I see my neurologist on the 23rd for follow-up.

Jennie (Jenzinc@bellsouth.net)

P.S. I did mention that I first had a thymoma (invasive) which required chemo and THEN found out I had MG? I’m told that is even rarer than the rare orphan disease that is MG.

#3

That’s quite a response with the treatments, congratulations! It’s unfortunate that the side effects are so bad, I’ve been VERY lucky in that regard but my MG symptoms still persist! Weak, easily fatigued, droopy eyelid, double vision, I guess I have a little of all of it! Nothing debilitating but very annoying!

I’m afraid I don’t have any advice on how to stop the cramping. Have you read any of the MG email groups? There are two groups that are especially active, someone there might have some advice.

I started a 3 round IVIG treatment today. I have IVIG every 4 weeks for my NHL and my neurologist asked my oncologist to up it to 3 days every 4 weeks for a 4 months and then 2 days after that. I hope I have as good of a response as you did!

She also tweaked my meds a bit to try and clear up the eyelid droop. I was taking Mestinon every 4 hours while awake, she added another dosage of 1/2 to a whole tablet between the current doses. So, now I take a dose every 2 hours, alternating between a whole pill and a half. And I still take a time-span dose at bedtime. The additional Mestion seems to help the droop but I think I need to have my glasses checked, I don’t think they are right and the additional strain exacerbates the droop and DV.

Seems it’s always something with this stuff! One thing for sure, it’s taken my mind off the cancer!

Take care and keep in touch!
Steve
sbrown@pobox.com