Hi again, finally finished my 10th plasmapheresis yesterday. Got my neck catheter out too. Yay for that. Feeling stronger but this morning I have a droopy eye and my voice is nasal again. Has anyone else had this after 10 plasmapheresis? I am on 60 Mg prednisone,since my catheter is out I am starting 150 Mg azathioprin today. On iron for my aniema. 60 Mg of pyridostigmine 3x a day. Doctor will be mad I started my aza so late but I was afraid with the side effects and having that catheter in my neck. Also does prednisone delay monthly cycles? I haven't had mine since I was in the hospital with a crisis and phemonia and collapsed lungs. That was in march. Many questions but that's why I titled plasmapheresis eft... Lol. Thanks

Lisa

Hello Lisa, Plasmapheresis can be very tiring, indeed. It's quite an assault on our poor bodies. Make certain you eat well. Directly after treatment, many find a bottle of liquid meal replacement works wonders. I certainly do.
MG is a whole bunch of "hurry up and wait..."

As to your Imuran, I "graduated" from this medication in November, having been on it since the fall of 1999. Your blood will be
tested regularly for the first few months. Please don't be afraid of side effects
because for most, they disappear. Do give it a chance, though. You sound like a strong lady to me!

Nice to meet you,

Hi, you graduated from imuran? Did they put you on cellcept or something else? And wow 1999. That's a long time. Did imuran help you being on it so long it must of. I'm praying that I can continue to swallow and eat because for a year I could not eat food at all good without mestinon and even then it was hard. Plasmapheresis has been a miracle. If I had to ge more someday I would gladly get that catheter in again and get more. Despite the risk. How long does plasmapheresis last? Its my first 10. And its new to me so curious. It was vary nice meeting you. Hope you continue to bless the group.

Lisa

Hi Lisa,
To answer your question (how long does PLEX last?), you have to understand the plasma exchange process.
It removes the circulating antibodies from your blood but all antibodies are not circulating, some are bounded somewhere in your body.
The filtering process is a continuous one, one cannot thus achieve a 100% efficiency, it depends on on the total volume of plasma exchanged, in France they exchange 1.5 times the plasma volume corresponding to your body characteristics.
The production of antibodies is not stopped, your blood is thus continously re-enriched in antibodies right from the end of the exchange.
Finally, not two patients are alike...
In my case, I have one exchange every 7 weeks...and I started by one every 10 days. I feel the change after 2 or 3 days.
Maurice.

Hello Lisa, and thank you! I was able to stop Imuran, cold-turkey, with absolutely no problems. No, I am not on any medications. After all these years of treatment, since 1996, I still can't believe I'm saying that, so there is always hope.

It's very difficult to know what helped, but given statistics, I'm going to suggest that it was the Imuran, the thymectomy, two magnificent doctors.....and time!

I also weaned from plasmapheresis in January, having had 4 runs, every 8
weeks, for years and years, graduating to every 10 weeks, and off! Like Maurice, I started to feel better after a few days, and better and better,
and then downhill for about a month. I had a couple of constructed fistulas so I didn't have to have lines--much easier.

If you have swallowing issues, off/on, have soft foods on hand so you can switch at any time. The key to all of this is to work with your physician and give things time to work.

I have had plasmapheresis off and on since February. I got a catheter in my neck in March and it is still in place. I get good results immediately after the treatment, but find it wears off for me after several days. I have not had it for a week now, but can definitely tell a difference in swallowing, neck weakness and pain, breathing and overall strength.
I am trying to stick it out as long as I can between treatments, but will probably have to get more this coming week.

Fortunatos, What were your thymus scan finding that made your doctors decide on a thymectomy? Where there nodules, hyperplasia or did they do the thymectomy with a normal scan?

Can you separate how much improvement you obtained from your thymectomy compared to the other treatments?

I have a normal thymus scan. I was hoping for a thymectomy with great hopes of a remission.
thanks
kathie

Hello Kathie, My thymus appeared to be normal, and I had a thymectomy. The concensus for this operation being, the sooner the better. There is a very small population of neurologists who prefer the "wait" approach. Given the stats over the last 30 years, I'm with the "It's gotta go" team... I very
much believe in this.

Unfortunately, it is almost impossible for me to say with certainty, the percentage of improvement resulting from my thymectomy. What I can report is that directly after the surgery, I never again had liquids go through my nose, never again lost my speech, and never again, had a high degree of difficulty chewing food. I did continue with some other problems.

My neurologist said, "At least the thymectomy is a chance!" Knowing my personality, and the stats, I suspect I would have regretted not taking that chance.

Keep hoping...no matter the treatment. We are what we think!



I wish I had a better answer for you...

Thanks, It sounds like you had great improvement with the thymectomy. My scan came back normal and the neuro said come back in 3 months. From everything I have read, a thymectomy gives the best chance for remission even if the scan is normal.

I am with you. I want the thymectomy, I want a chance of a remission. I am going to push the neuro on this subject at my next visit.

Thanks for the info,
kathie

You are very welcome, Kathie. It appears that your neuro has not
discussed the thymectomy with you. Did he have an opinion, or did you feel the doctor might discuss this at your next appointment? Often, doctors have to do a little "brushing up" on this condition, which is certainly understandable. I am interested in what transpires at your next appointment.
Cheers...