Each time I have a plasma exchange, I crash. My blood pressure goes so low that they sometimes cannot even take a reading and its horrific. Doesnt matter how slow it is done or taking lots of fluids - it still happens.

Does this happen to anyone else?

I am trying to get my neuro to try me on IVIG to see if this is any better?

Would love any feedback on either the plasma or IVIG

Thanks - linda

Hi Linda,

sorry you have such a bad time with plasma exchage. I've never had it.
I have had ivig, and think its wonderful, the only side effect I've ever had is a migrane, but if I'd taken a few painkillers early on I don't think this would have developed, as I did drink lots during the whole process.
take care
Kate

Sorry I can't help here. Last time I had Plasma exchange was 18 years ago and I really don't remember much of it as for IVIG, I take something simular and my blood pressure also drops 60/30 so lots and lots of water is what I drink and it helps. Good luck

Hello and WELCOME to the best site on the net for MG! You are going to LOVE it HERE! EVERYONE is so kind and always willing to lend a sympathetic ear.......

As for the plasma exchange - I am not a big fan. My blood pressure drops low 80/40 last week - nurses woke me up in a panic....and I don't get the BUMP that I get from IV IG. That (for ME) is the best of the best.

THe first time I had IV IG it was like a MIRACLE! I felt so amazing that I cried and cried! It is truly great stuff! Gives you a boost like nothing else!

That being said, how often do you have the exchange? If it is often, you MAY want to consider a PICC line for IV IG - long IV that reaches just above your heart that casn stay in for a year - per my dr - as our veins havea tendency to "blow" when we are on meds.........

I would pick the IV IG anyday over the other. I just had the exchange done last week and am only now starting to feel the effects......

Hope this helps!
Erin

Hi Linda,

Welcome to the group! I'm sorry to hear you are having this problem. I had plasma exchange and didn't experience that problem. It took a few days, but I sure felt better and stronger. Do you feel better after having them? I haven't had IVIG so I can't comment on that except to say a lot of the good people here have them and could tell you about their experiences. Take care.

Hugs,
Pat

Linda,
I have never had a plasma exchange but have been having IVIG since Oct 08 and it works for me. I had five treatments the first week in Oct 08 and after the 3rd treatment, I was outside cutting a tree down in my yard where before I could barely walk and pick anything up. What a boost in strength. I don't advocate cutting trees down though, as I paid for my heroics, but I had amazingly more strength after just 3 treatments. Maybe your neuro will try the IVIG's for you. Keep the faith and let us know how you are doing.
Hugs,
Simon

Thanks for all your feedback. I have just come back from hospital after having two lots of ivig. It definitely was easier than plasma exchange - at least my blood pressure stayed stable but cant say I have got the amazing lift that plasma gave me. In saying that i am at least now able to breathe, swallow and talk to people but really arent ready to even walk around the shops. I am being patient and hope it will kick in soon. I do feel a bit flu like but at least the headache has one now - but I can cope with those symptons easily.

If I am right it seems to take a few days for most people to fill great ???

My neuro said that he wont do ivig on a maintenance basis but only when I really need it as its too hard to get approval for it on an ongoing regular basis - bummer. Still he is prepared to do ivig instead of plasma as he has now admitted that it is too dangerous for me to crash so badly - there are some times when they machine wont even register a blood pressure it goes so low

Again thanks for the information - reading about ivig really helped when i was in hospital and i made sure that the nurses did it really slow and knew exactly what symptons and side effects that would happen. I also drank a load of water which I think helped tremendously. Amazingly if it wasnt for you guys I wouldnt have known to do that - not one doctor or nurse told me to hydrate!!

I am going to put up a new thread about blood pressure as I dont know if this is an mg sympton???

Welcome to the forum! Everyone here is incredibly wonderful and so supportive.

I have not had plasma exchange but have been having IVIG treatments for 2 years. I have had them anywhere from once per month to once per week, which is what I'm doing now. As you mentioned, it is very important to have the solution go in slowly to avoid side effects - also to hydrate before and after.

The only problem I've ever had with blood pressure and the IVIG is for it to spike high if I have a double treatment (1000mg). I can't do those anymore because of that problem. I am on blood pressure medicine but I don't think it has anything to do with MG.

I couldn't make it without the IVIG treatments. I take Mestinon, sustained release Mestinon and CellCept in addition to the IVIG. I can't be on Prednisone because it make my blood pressure spike really high.

Hello again! Isn;t it mind blowing that no one in the "medical" profession told you to hydrate? That is one of the many, many reasons that I love this site!

My first exp with IV IG was nothing short of a miracle, but then again I was almost gone by that point - really and truly! Now it takes a few days b/4 I feel my BIG boost - still love that feeling, but my neuro is advocating plasma exchange.....we'll see!

Are you getting any pre IV IG meds? People are usually given benadryl and tylenol just in case....I don't take mine as I don;t have side effects from IV IG other than being really thirsty!

Can't wait to hear from you!
Big hugs!
ERin