vasculitis, memory and plasmapheresis

[PrincessPea]

Hi,
I am having increasingly serious problems with my short term memory and some of my speech. My Rheumy has me seeing a neuropsychologist for evaluation. I also have RA and Raynaud's Disease and CVID. The neuropsych thinks that I have vasculitis.
Any info or advice about what that means in concert with Sjogren's? He also has been talking about plasmapheresis. Apparently it has helped some of the patients with my medical scenario. As I understand it, you have 1 IV in the arm and 1 in the foot. Blood is taken out, cleaned of antibodies. The other blood cells are combined with a plasma substitute and returned to your body. The idea scares me and gives me the creeps! Have any of you done this? How rough was it? Did it help?
Thanks,
PrincessPea

[navydad]

theres a recent thread about this,, might be on page 2

[gphx]

Here's one relevant thread of many: https://sjogrensworld.org/index.php?topic=10122.0

[anita]

I can't imagine they would use it this purpose.  It should be a last result for urgent situations only.  it is not a long term cure/treatment.  Certainly not worth the risks for memory/speech problems  I think there are new meds for cognitive problems that have some success.

BTW, when I got it, the IV wasn't arm & foot.  It was a (multiple lumen) surgically placed catheter in the neck.

Yes, read the other thread titled plasmapheresis

Good luck

[PrincessPea]

Thank you all for the response to my inquiries. I don't know if I'll go this route or not. I am already on Straterra for my cognitive problems. I take Plaquinel, Quinicrine, Methotrexate, Arava, and IVIG and my autoimmune issues just get worse. I also take other meds to address the symptoms of all of it, too. I went and looked at the discussion thread y'all suggested and found it really helpful.
Thanks!
PrincessPea

[irish]

I have not had the plasmaphoresis, but it is possible that he feels your symptoms are bad enough that you would benefit from this treatment.

However, I would ask him about the IVIG also. IVIG is given for vasculitis also but it takes a long time for it to really kick in. Are you on Prednisone at all. It is possible that you could end up with steroids IV to get a rapid attack on the autoimmune problems that are causing the vasculitis.Also, the plasmaphoresis might also be used the one time to get rid of the antibodies while starting the IVIG.

It is not unheard of to do this combination. I have been on IVIG for another neurological autoimmune disease and have talked to several people at my infusion center who have had plasmaphoresis. It is not comething that they do on the spur of the moment. They have to have good reasons to do it. It is much safer and more easily done than many, many years ago. It has been around for a long, long time as a treatment for the more hard to treat autoimmune problems.Good luck and keep us posted.

Also, sjogrens can cause vasculitis and it is generally in the smaller vessels. Vasculitis needs to have aggressive treatment as it can cause havoc with the body. Irisih

[PrincessPea]

Thanks, Irish! I've been on IVIG for 3 years (3 YRS. ON 10/1/10). I guess it's had time to kick in, it helps a lot with my CVID. I was thinking they would probably give me some IVIG right after the plasmapheresis. I worry about how big the needles for that are and if it will hurt? My infusion guy has a really hard time getting my veins. He is a fabulous 'sticker', but my veins are tiny, they roll and they clamp down and won't give or receive anything. I'm going to see a surgeon on 9/16 to see about getting an IV port installed. I'm anxious about surgery because I am also colonized with MERSA (staph). This weekend I had trouble with my fingers turning very red and swelling up. They'd also be cold. This was different from my usual Raynauds deal in my hands & feet because they never actually turned blue. It came and went several times over the past few days. Is that a vasculitis thing?
thanks again,
PrincessPea

[gurs]

Princesspea,

Im sorta in the same boat as you..nothing helping me..tried the IVIG and Rituxan, didnt help and had some bad side effects, and doc's also think I have vasculitis...I also have
lupus and raynaud's. Last year, a top doc I saw recommended the plasmapharesis to me..said it was a good option since nothing else is working, and I have
reactions to everything, and the plasmapharesis, nothing foreign going into the body. I said no way...Now, Im getting worse and I actually am seeing him tomorrow. He was referred to me by my rheumy. He will prob recommend it again, but not sure I will go there. I know they use it as a last resort, but I seem to be growing worse day by day.
I think I will have a biopsy first to see if anything shows vascular wise, if it does, I may seriously consider it. I would trust what your doc recommends, as it seems you have tried other things. I understand everything is a big risk, but in order to slow down the progression of the disease, sometimes risks are needed right? If you can function pretty
normal, then No...I wouldnt take the risk.

Please let us know what happens....im very curious about this as well.

Gursie

[navydad]

I dont think or look at this as a cure,, it may slow the progression,, I said MAY slow it,,, I have went the route of pulse steroids,, IVIG,, and even though Plasa,,,, has not been mentioned yet,, I think it may be,, I see the rheummy tomorrow,, I see a battle,, he knows Mayo says no SS and he says otherwise, i am just going to tell him, I dont care what anyone says,,, al I want is for someone to get me back on IVIG,, neuro aint gonna do it,, and he was good at getting my dose raised before,, said I wasent getting enough,, so we;ll see,, I;m going to get there tomorrow even if it means starting to walk to Pittsburgh tonight,,

[irish]

gurs, I am sorry that you are having such a hard time with all this. Life can be tough that is for sure. I know that you are struggling with your antibodies in spite of the IVIG. It sure sounds like the plasmaphoresis might be the answer. I guess if it was me I would go for it.

The reason I say that is because of this terrific gal that I met at the infusion center that has myasthenia and has been hospitalized 10 times now for the myasthenis crises. This is where the diaphram gets paralyzed and you have to be intubated for about 2 weeks or more. She has had plasmaphoresis every time I think she said. Her antibodies were so high. They finally put a trach in her so they would be able to intubate her more easily.

She is doing better. She is about 40 and got sick soon after her last child was born 6 years ago. She has been through more than almost anyone on this board. Spent a lot of the last 5 years in bed or hospital. She would get better on the plasmaphoresis and now it seems that her IVIG is starting to help her. She is just like me diagnosis wise as she has the myasthenia, sjogrens and the low t-cells. Our doc has 2 of us who have same diagnosis but she is far sicker. She was seeing our immunologist once a week cause no one else is able to deal with all her illness. He will call her every day on the days she doesn't come in. How is that for a caring doc? See why I like him. He talks the talk and he walks the walk.

Please let us know how you are getting along cause you have struggled a long time with this. Good vibes and many prayers for the correct decision. Irish

[gurs]

Irish,
Thanks for your support...what would we all do without you on this board!!!! Anxious to see what the doc has to say today. I think they are more concerned with my falling t-cells and IGG-IGM's.. I think I want a biopsy done to rule out vasculitis, or SFN. Wish I could tolerate the IVIG, as I know it has helped so many people. I keep watching Mystery Diagnoses and they all seem to have autoimmune diseases (go figure), and they get that for treatment and all seem to get so much better. Maybe a different brand like Privigen or something?
Im so scared to try anything at this point. I think us SS people do have the super drug hypersensitivy because it seems alot of us cant handle much.

But, what alternatives do we have? we have to keep fighting and trying to keep this horrible disease at bay..if we do nothing, it only seems to get worse.

gursie

[gurs]

Ok, saw the hematologist who works with my rheumy, said i need to do something now, that I really cant put off trying any treatments..just getting too sick. Said prob vasculitis..
ANA too high, no t-cells..blah, blah, blah

Suggested another try at IVIG...said he is using new product with better results..asked him the name and is checking,,might just be the privigen. Will do
me at very low dose to start with plenty of pre-meds..the dryness is so bad right now, not sure how i will deal. Not sure what choice I have either....will wait a few
weeks.

He also highly recommended plasmapharesis next step, then another round of rituxan...he wants me off all these steriods..not until after the treatments of course.

Also going to try some thyroid hormone first. I have so much dental work-surgery in my mouth..getting this done before any of this. So tired of all this...

[navydad]

Hang in there Gurs,, just ang in there,, I know its hard and you just want it to all end,, but its not going too,,, your on the merry go round of medical insaniety,, just try to hang in there