Newbie/looking for answers

Marilyne,

I have not had plasma exchange so I cannot give you any advice there. I was diagnosed over 5 years ago but it has been maganeable with IVIG and Cellcept. I was also on Prednisone at one point but came off due to severe side affects from it. With GBS and especially CIDP they isn’t a rhyme or reason as to who it affects or why it starts. I was not sick before I started having my symptoms. I think this is a lot more common in CIDP. GBS seems to be linked more closely to sickness that will start it. For me, my relapses are like a rollre coaster. I didn’t used to have any numbness or tingling and now that is the first thing I notice. Sometimes I feel it more in my legs and other times I feel it in my hands and arms first. I have even noticed a difference in how fast it progresses with each relapse. I hope that I am helping and not adding to your fears; my point is that it is always changing and there are no constants. But I look at this as a good thing most of the time because there is always those times when it is better than the last one! Good luck, the trick is finding what works for you!

Hi Marilyne, I have not had the plasma exchange yet-my neuro has said at this point for me, no. But everyone here reacts differently-I think they would want to watch you carefully in the hospital during the plasma exchange for any reactions you might have. Good luck to you. Emma

Hi Marilyne,

I too have not had PE but believe you need to be in the hospital, at least the first time. I don’t know if you can get it outpatient maybe at the hospital? You would have to wait and see if someone else responds. I would suggest starting to write down what you are on, when you changed or increased meds, etc. to see what works. It is a definite roller coaster at times. I was really bad a couple of weeks ago, thought I would never recover, and today I feel a LOT better. Everyday is a new experience:) Truly it is, depending on weather, how much you exert yourself, etc. I have a routine that works for me as far as budgeting energy, and if I deviate, I know it. But it took a while to figure that out. Welcome and hope someone answers your PE question. Gabrielle

Marilyne, Welcome!
I was already in hospital for my first 11 pp treatments but was able to get out patient PP treatments after discharge from hospital.
It depends on your Dr., how many treatments and how close together they will be. I saw slow progress weekly after each PP treatment. The treatment itself lasted about 2 to 3 hrs. I got very cold during PP and had as many as 7 warming blankets on me. Had to sleep afterwards for a couple of hours as it drained me. It didn’t make all of the numbness and tingling go away but it did get less for me and I can walk with a cane now. (remember, we are all different.)
Be sure to keep yourself well hydrated with water, water and more water, it helps them get in the veins. They used my arm veins for outpatient and had a line in the neck to use in the hospital.
I have GBS so don’t know if this is something you will have to do over and over. Someone may come on and give you more info to help you.
Hope this helps you a little.
Good Luck to you
Shirley

Well, I too was already in the hospital when I had the first PE treatment. Treatments 2-5 I had as an outpatient. It never did any good though, as neither did 4 months on 100 mgs of prednisone and 4 months of ivIG. I will see a new specialist on the 17th of July and hopefully he will come up with a treatment that will help. I was diagnosed back in Sept 2007 an have been getting progressively worse.

Hi welcome!
What reason does your doc give for going right to pp? Usually ivig is first with or without steroids. If this does not work after a few times, then pp is tried. We have only used ivig for my son, so I cannot offer any help w/pp.
Dawn Kevies mom

I’m confused about the treatment. The normal protocol would be to do steroids or IVIG or both then move onto PP and other immuno-modulators.

What made the dr think that you went into remission? Remission occurs only when you are healed (as much as you can be) & the bad anti-bodies are no longer being made by your body. Seems to me that you didn’t reach remission at all. The steroids modified your immune system enough to keep the attack at bay. Once the bad anti-bodies built back up you had a relapse. Did the dr slowly wean you off of steroids or were they just abruptly stopped? Or were you still on 40 mgs a day when you relapsed?

I’m sorry to say this but since the dr said you went into remission after only treating CIDP for a few months I get the feeling that he/she doesn’t really know much about this disease at all. It’s a chronic illness & may possibly need to be treated for the rest of your life. It’s definetly NOT a quick fix.

There is really no concrete evidence as to how or why people get CIDP. It just happens. I think very few people can truly trace it back to one instance. I think for my daughter it was a combination of mold in our old apartment & vaccines. Remember though that it IS treatable & that remission is possible. Even if you can’t get into remission you can get treatments & most people do go on to live nearly normal lives. I say all the time that it might not be the old normal but the new normal can be just as enjoyable as the old one.

I don’t know much about plasmapheresis but I do know that it tends to not last long and is one of the more dangerous treatment options. The mathematics involved must be perfect or they risk taking out too much blood or putting too much back in too quickly. There is also an increased risk of infection.

You should talk to your dr about using IVIG. It is more expensive than steroids but has less side effects & it certainly must be cheaper than being in the hospital getting PP. You can even do IVIG at home through a home care company.

The dosing for IVIG should be 2g/kg over 4-5 consecutive days. Then you should receive 1-2g/kg as a maintenance dose. The frequency of that should be determined by how long you can go in between relapses. For example, if you relapse after 25 days from your last maintenance dose then you should get another maintenance dose about every 21 days. The idea is the longer you get treatments at the correct dose & interval the better chance your body has to heal & the better chance of going into true remission you have.

Keep in mind that treating CIDP is an art form & can take awhile to figure out. You just need to have the right dr & the right information.

Good luck,
Kelly

Hello Marilyne,

I wrote a long reply about plasmapheresis a while back. Please follow this link and look for my handle (MarkEns): [URL/]http://www.gbs-cidp.org/forums/showthread.php?t=3717[/URL].

To answer the questions you posed: plasmapheresis can be done as an outpatient, even the first time. Usually, it is done every other day, but sometimes it is done every day. As the thread above indicates, yes it does work. In my case, it keeps me living a nearly normal life. While I cannot predict your response, in my case, yes, I will have to do plasmapheresis over and over.

As to how we contracted this disease, nobody knows. As Dawn said, CIDP is not usually associated with a disease, unlike GBS, which often (perhaps about half the time) is.

Feel free to PM me if you have more questions about plasmapheresis.

Godspeed,
MarkEns