Plasma Replacement Therapy
Hi everyone
Pete from the UK here - 70 years of age. I've had double vision since 2016 but recently developed ptosis. Finally been diagnosed with MG and now have finger drop of my left hand. The symptoms appear to be getting worse on a daily basis.
I now have a number of symptoms such as extreme tiredness, inability to walk very far, completely closed left eyelid plus a bit more. Mestinon is not working and he doesn't think steroids will help.
The neurologist has booked me in for plasma replacement therapy - next week with a bit of luck - but probably in the new year. He says I will need it about every five weeks with between two and four consecutive daily sessions each time but the intervening periods should be symptom free, albeit it could take a few sessions to achieve this.
My questions are: has anyone been through this treatment and, if so, what was the result and is this needed for ever?
I had five sessions over 8 days. It's quite intensive and took about half hour set up, 3 hour#exchange, and 15 minutes to take the needles out. Over the five sessions I had 20 litres of plasma.
I don't think I actually saw much difference afterwards but they did say it could take a few days to kick in. Since then I've continued with the Mestinon and have been upping the steroids 5 mg every 5 days until today when I reached my maximum and dose of 40 mg per day.
Both of the eyelids are open much of the time now but that causes as many issues as it solves as my double vision is horrendous.
My consultant says I need to be on the top dose for 4 weeks before they see the benefit of everything.
It just so happens that where I live in Southampton on the south coast of England that Southampton General Hospital is a centre of excellence for myasthenia with two of the top consultants in the country working here. I do believe I'm in good hands and hope the things get better over the next few months.
As an aside, it appears to me that, personally, it's the cold that causes the major issues with the muscles.
Hope that update helps.
Hey Pete, we greatly appreciate you sharing your experience with plasma replacement therapy. Five sessions over eight days is quite overwhelming! I struggle with getting needles removed; how was that long of a duration for you to handle? "Both of the eyelids are open much of the time now, but that causes as many issues as it solves as my double vision is horrendous" is a very understandable problem; I bet so many experience the same unfortunate dilemma.
It is wonderful to hear you have an excellent medical care team at your side.
As far as prednisone goes, I would consider a second opinion if it is not you hesitant to try it but your doctor. You can always suggest to a doctor to start on a small dose and work up the amount over time if needed. I can understand their hesitation as prednisone often has many side effects and has the potential to cause complications when weaning off, even if done slowly.
Plasma exchange usually leads to improvement within a few days, if at all. Have you considered discussing IVIG or more commonly used immunosuppressants? https://myasthenia-gravis.com/treatment
-Jodi, Team Member
@Boysie, I wanted to check in and see if you have started the plasma replacement therapy and if it’s been helpful? I hope you have been doing well. Best wishes, Julie (team member)
