Have been preparing info to see consultant on Monday. I want to ask him about plasmapherisis, as it might be good for at least one of the autoimmune disorders that have recently been diagnosed with and might be useful if turns out have APS and/ or scleroderma (which consultant is investigating). Here is a recent review that I came across which seems pretty interesting.
I really dont know if plasmapherisis is a good idea or not but it looks like it coud make a big difference and is generally safe, though complications have occured in some cases. My feeling is that it should perhaps (after more research and if that research is promising)be regularly available on the NHS for APS, SSc etc but that its not on account of being labour intensive and therefore expensive. I think its something that maybe charities could campaign on? Just an idea.
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That report summary says more research should be done, not that it would be effective.
Sometimes theoretical research reaches licenced medication level quickly, but other times it can take years - presumably for a number of reasons including requirement, cost, complexity and alternatives.
It's promising to see there could be a new method at some point, but I wouldn't get too excited yet.
But the review does suggest that it is relatively safe - "Both treatment forms have good safety profiles although reactions to blood product replacement in plasma exchange and procedure related complications such as bleeding or catheter-related infections have occurred."
And it reports that beneficial results have been obtained in refractory cases. eg "There has been a large
number of case reports and case series reporting favourable outcomes
following treatment. Moreover, several larger observational studies corroborated
positive effects."
However, it looks like the randomised studies have had conflicting results, and there has been less research in relation to plasma exchange and SLE than APS.
So definately more research seems to be needed. Im just looking for answers I guess, as symptoms are getting quite quickly worse eg vision and hearing declining and being replaced with visual intrusions and tinnitus.
Looking for a miracle I guess but know that it might not be there.
Hi Charlieab. I think it's great that you are researching your illnesses and what could be of benefit to you. After all you have the final say in what treatments you think could be of benefit to you.
Let me tell you a little about my experinces of plasma exchange. I have had plasmapherisis twice. The first time, in 2012, I was very near to death. I had been diagnosed with CAPS. I was in Intensive care and put into a medical coma to try and control the clots that were in all of my major organs. It was then followed up by an intensive course of chemotherapy. The second time was last week. I had a five day mega dose of steroids via IV and then a five day course of plasma exchange via IV. Again I am receiving chemotherapy as a follow up - one infusion a month for six months PLUS a mega dose of LMWH twice daily for six months. This is to ensure that I do not have any ischemic attacks in the spinal column which can happen with plasmapherisis and Transverse Myelitis, which is the diagnosis I received in July. They say it is associated to Lupus. Each time if have been treated I have been in Intensive Care. The risk of infection is very high. Also each time I have been given it they have told me that the risk of rejection of the plasma is very high too.
There are always advances in medical research and treatments being tried to stop advances of autoimmune diseases. But at the moment it is just that, research. I can only comment from my experiences here in Spain. However, I know of two other people here who have received plasmapherisis, with a diagnosis of Lupus/APS, and they were both at deaths door too.
My advice would be to do more research yourself before plunging in at the deep end. Be guided by your medical team. Plasmapherisis is not a pleasant experience and should not be entered into lightly. I have had it twice as it was a do or die situation for me. I had nothing to lose.
Thanks for your very informative reply. It has certainly given me pause for thought. I guess, like I touch on in reply above, Ive been feeling a bit desperate and want to try and halt the current rapid progression of symptons. In particular, my vision has deteriorated rapidly and it is getting harder and harder to read. Im looking for a miracle "cure" short of HSCT (which seems to risky atm) and Ive read some great success stories about plasma exchange.
But, like I say, you have usefully made me sit back and think about it a bit more carefully.
Im sorry to hear that you have had such a tough time with CAPS. I hope things are going as well as possible atm.
Plasma-pheresis is a technique by which blood is ‘cleansed’ of potentially damaging products such as certain antibodies. The method is, in theory, simple. Blood from a vein is taken through a tube to a machine rather like a large spin dryer. By centrifugal force, the blood is spun into its various components. The patients red and white cells are returned to the body but instead of the “bad” plasma, a substitute is returned. The method is safe and, apart from the discomfort and boredom of a couple of hours sitting with a blood transfusionline attached to the arm, relatively free of discomfort for the patient. Although this lupus treatment (like the related treatment of leucopheresis, or removal of white cells) is theoretically beneficial, to date the benefits have appeared short lived. This lupus treatment is attractive and has received attention in the world press. However, it has not yet received the benefit of widespread trials and experience.
I guess my layperson's view is that assessments of the efficacy of plasmapherisis are using an additional criteria which is not applied to immunosperesants, anti-coagulants and most other treatments i.e. how long the treatment works for before being needed again/ topped up.
As I understand it, from a guy who has been in remission from scleroderma for 22 years as a result (it seems from his journal article) of plasmapherisis, plasmapherisis needed to be repeated about 4 times a year (but Im not sure about that figure). That is a lot of times but it has meant that he has been in remission for 22 years and did not have the side effects that can come with sclerodrema drugs. To me that would be worth the time. Whether NHS/ NICE thinks its worth the money is another question of course!
In essense, that the benefits are (as Professor Hughes notes) short-lived really means that the benefits from each plasma-exchnage session are short lived and counted in months. The benefits of plasma exchange can maybe be long term if repeated at appropriate intervals. Its also worth noting that it has been argued I think that the benefits are not just from removing auto-antibodies, inflammatory cytokines etc but also or principally from declumping blood. This is why ESR and CRP go down after plasmapherisis.
Though I know Im sounding a bit monomaniacical about plasmapheresis. I shoudl strees that I dont have any shares in teh company!
I don't think that there is anything wrong in looking for a "cure!" I'm sure that there are many of us out there that want a cure too, me included!
I think that this forum is great for bouncing around ideas, and listening to the experience of others too. Ros has given you more food for thought with some very helpful comments from Professor Hughes.
Good luck in your search. Do remember to keep us posted.
I've read numerous articles on plasmapheresis and it's my understanding that due to both costs and risks it's reserved for those who have extremely severe disease (i.e. CAPS) and isn't used generally.
I'll be interested to hear what your doctor says about it though.
Thanks Kelly. I'll be interested to hear what he says as well. and will report back. Hope you doing OK today.
Funny thing is that Ive been exercising like crazy in last two weeks in a kind of experiment to see how it affects the livedo, headaches, raynaud's etc. So have been popping out for a short run like evry hour. And symptoms seem to have noticeably improved. I know this is in part the result of anti-inflamatory effecst of exercise but just wondered (having read your and Ross's posts) whether exrecise could also play a role in declumping platelets and blood cells. Though now I know I am really becoming obessed!
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