How long before plasma exchange works?
AnonymousJanuary 24, 2009 at 6:36 pm
After months of IVIg, with no discernible improvement in my condition, my neurologist consented to try PE. He doesn’t believe that it will help, but he agreed, at my insistence, to try one round. So, I went to Methodist Hospital in Houston for six sessions, three each week for two successive weeks.
It’s been a little over a week since my last PE, and I haven’t seen any improvement. Should I have expected improvement before now, assuming that improvement is coming, or am I being too impatient? Have any of you needed more than one round of PE before any improvement in your condition was noted?
During my last visit, he (Dr. Appel) told me that if this doesn’t work, I may have to accept that I won’t get any better. He feels (and I agree) that because of my demonstrated allergy to IVIg and my high blood sugar, steroids are not an option and immunosuppressant drugs should probably be avoided. I have a great deal of respect for this man and for his experience and knowledge, but, at this point, I’m not even close to giving up.
I’m still thinking positively, but I’m also considering other options, should they become necessary. One option for me is to head up to Rochester, to the Neurology Department at the Mayo Clinic.
I’m open to and will appreciate any and all suggestions.
AnonymousJanuary 24, 2009 at 8:58 pm
[SIZE=”4″]When I had it, iit worked right away. I had 5 IVIG’s & was having a hard time walking. After the PE, I was walking much better. Of course, not stopping there, they started up the IVIG again. I was paralized & bed ridden in 2 months. Then they put me on steroids & within 36 hours, I was up & using a walker. I’ve refused IVIG ever since.[/SIZE]
AnonymousJanuary 24, 2009 at 9:30 pm
It is weird how everyone is different. I am hopeful that you and your doctor do find the right treatment. If I have learned one things so far. That is that as everyone has said. Each person is different and responds differently to the treatments.
Mike got worse with ivig and steroids worked for him. For me steroids made me worse and round one ivig helped alot. others go far beyond and find none of the normal stuff works but hit on something down the road.
It sounds like your Doctor is good. If he is talking acceptance as is already, perhaps you do need a switch. I find it odd he gives up just after the ivig and pe. He may just be preparing you for a longer than normal time to figure out a treatment plan and not that he is giving up. There are many other tricks in the bag. They all just take time. Keep up your good attiutude.
I hope the best for you.–tim–
AnonymousJanuary 25, 2009 at 3:33 am
For me, I usually see improvement during by the third treatment in the round, with effectively full recovery within 10 days after the completion of treatment. However, we are all different, so I would not panic quite yet. I think I have seen some people report that it can take more than one round of plasmapheresis to see improvement.
Why aren’t you are a good candidate for immunosuppressants? We CIDP’ers have four treatment options: IVIg, prednisone or other corticosteroids, plasmapheresis, and immunosuppressants (azathioprine, CellCept, cyclophosphamide, methotrexate, rituxan, and others). Let’s say that the plasmapheresis does not provide improvement. You really only have the immunosuppressants left as an option. Why rule them out?
You might also be one of those people who need a combination therapy. In my case, plasmapheresis alone is not enough, nor is prednisone alone enough. I need both. Further, to try to reduce the amount of prednisone, I take azathioprine (which does seem to be helping). My goal is to eliminate the prednisone and rely only on plasmapheresis and azathioprine. Since steroids are not an option for you, it might be worthwhile to try one of the faster acting immunosuppressants, not that any of them are fast, to see if that route will help.
Godspeed in finding a useful treatment.
AnonymousJanuary 25, 2009 at 4:20 am
I think you need to find someone who is comfortable dealing with complex medical issues and immunosuppressants. I’m with you in not giving up – it’s too soon and you haven’t even touched the surface of all the combinations possible. As you know though nothing is immediate, it has taken me two years of fiddling around to finally get my treatment where it is today. You have to try something, then wait a few months to see how that does, then try something different… try to have a little patience… I know it’s hard, I’m not the world’s most patient person either but there is really very little you can do to speed up the process so don’t drive yourself nuts wishing for wings.
In my long medical mystery tour before finally ending up at Hopkins I was told by at least five doctors at private practices, Georgetown and Hopkins that the Mayo clinic is well known for team work. Neurologists work with Endocrinologists who work with Rheumatologists etc. I think if you are looking for a team approach this is the place to go – however as with most major medical places you will get in much faster if you have a recommendation from your doctor. It sounds like he might be ready to do this for you since it appears he is giving up himself (idiot) so be prepared to ask him for his help in getting an appointment. I found the easiest way to do this is to call the appointments line at the Mayo and ask them what it takes to get an earlier appointment – kinda cheating but it works. At the least you probably want to send a letter describing your situation and what treatments they tried. You should also send all your EMGs, NCVs, lab reports, hospital records etc. so they could look at it the entire picture before deciding who should see you. And then call them. Give it a couple of weeks to circulate and then start calling them to see where you are in the process. 🙂
Good luck Rod – I like your spirit!
January 25, 2009 at 1:51 pm
My initial reaction to IVIG was much like yours. After 4-5 months, we switched to a combination of PE, IV solumedrol and Cellcept. I had almost instant response the the initial five days of PE. Since that time I have been on and off PE to try other treatment protocals and have ultimately returned to some schedule of PE. I have gone as long as six months between exchanges and as short as weekly. PE has kept me active and functional for over 12 years now.
Like everyone else, response is different for each of us. The key is to have a physician willing to work with you and try different treatments and or combinations, until you hit on the one that works best for you. You know your body better than anyone.
I find it helpful to keep a diary and base line to measure the results of each treatment. For example, can I get up from a chair without a push, can I stand without support, can I pick up a dime off the counter top, or open the squirt top on the mustard container, etc. Then after a few weeks, I repeat these tasks to see if I can do them better, about the same, or not as good. This gives me an objective way to measure the effectiveness of the treatment.
Hang in there and keep after it. Best of luck.
AnonymousJanuary 25, 2009 at 2:37 pm
I had slow, steady gains from Plasma Exchange. I had about 50 treatments over a two year period. At the beginning, I was having a lot of trouble with falling, and had just begun using a walker. I could see improvements, but the changes were only measureable if I looked back over a 4 – 6 week period.
For me, the real change came when I switched from steroid sparing (prednisone + imuran) to cyclosporine. The PE was enough to keep me from getting worse, and gave me some limited, slow gains, but it wasn’t a very stable improvement: any time that we tried to reduce the frequency of PE treatments, I would get worse. For me, PE + an immunosuppressant (cyclosporine) was what worked. I am still on cyclosporine, but I haven’t had any other treatment besides that for about a year now.
Your rate of improvement will depend on a lot of things. Different people benefit from different treatments; as well, some of us (like me) improve only very slowly.
AnonymousJanuary 25, 2009 at 3:26 pm
I found the following website yesterday and think that the discussion of treatment options is very good. [url]www.cidpinfo.com[/url]. The medical monitors of the site are active in the GBS/CIDP foundation. Look under treatment for options and recommendations.
Two other comments. On of the neuromuscular specialists at the GBS/CIDP meeting is a very strong advocate of pulse steroids and has recently published a paper on the use of oral steroids in CIDP. Pulse steroids have a lot less effect on control of blood sugar than daily or even every other day steroids. In the article, it said that the treatment was tolerated okay by one diabetic. In a pervious article with more patients and using IV steroids, the incidence of diabetic concerns was 6% with pulse steroids as opposed to 17%with sustained steroids. So this is worth considering especially if your diabetes is not “brittle”, there is not a lot of organ problems already from diabetes, and if you are willing to be extra careful in monitoring sugars for the day or so after the pulse of steroids (often given weekly at first and then less frequently) until you know how your body acts.
My second comment is that it might really be worth it to go to one of the neurologists on the GBS/CIDP board rather than just to a place, even one as famous as Mayo. One difference is it seems to me at the Symposium that the physicians there tried to listen to the real experiences of people with CIDP. It has also seemed to me that sometimes neurologists try to tell people what they ought to be feeling with CIDP rather than listening to what they are feeling. The biggest point to emphasize this is how many people argue that fatigue is not part of GBS/CIDP because it is not in the textbooks.
WithHope for a cure of these diseases
AnonymousJanuary 25, 2009 at 9:37 pm
I think Withhope brings up some good points for you to consider… i’m on the pulse steroid treatment plan and am currently weaning off the ivig with very good results overall to this point… Jersey Mike , your getting blood clots scares me.. Did you get these while in hospital or outpatient.. And was this direct cause of the ivig.. I have been told that there is an increased risk of clotting.., wish you the best….
AnonymousJanuary 25, 2009 at 10:37 pm
One thought that keeps nagging at me is that I may not have CIDP; that my symptoms (foot drop, neuropathy, muscle weakness, loss of balance, poor nerve conduction) may be due to nerve impingement in the lumbar or/and cervical spines. I’ve read a number of studies and papers on patients who presented with my same symptoms, where these symptoms were caused by nerve impingement or by Myelopathy and were surgically relieved.
As I mentioned in previous posts, I’ve had arthroscopic spine surgery (laminotomy, foraminotomy) on levels L3-S1, all on my right side. The possibility remains that there may be nerve impingement on the left side at these levels or/and problems in the cervical spine. Logically, one would not suspect either of these causes because my symptoms are bilateral. However, in an effort to eliminate these possibilities, the surgeon who performed my earlier procedures is in the process of ordering MRIs for my cervical, thoracic, and lumbar spines. If those MRIs don’t show any problem areas, perhaps I can get rid of that nagging thought.
By the way, WithHope, I’m not a diabetic, although my blood sugar is high enough to be considered pre-diabetic. Dr. Appel’s concern is that steroids may push me over the line. Your point about the difference between daily steroids and pulse steroids is well noted and I will discuss that with him as an option. Thank you.
AnonymousJanuary 25, 2009 at 11:08 pm
I think Withhope brings up some good points for you to consider… i’m on the pulse steroid treatment plan and am currently weaning off the ivig with very good results overall to this point… Jersey Mike , your getting blood clots scares me.. Did you get these while in hospital or outpatient.. And was this direct cause of the ivig.. I have been told that there is an increased risk of clotting.., wish you the best….[/QUOTE]
[SIZE=”4″]I was home when I got a stabbing pains in my back.It was caused by the IVIG. I was told to keep moving. I was in a wheelchair !!!! How much moving could I do?[/SIZE]
AnonymousJanuary 26, 2009 at 5:22 am
I think its hard to differentiate between what is “normal pain” , and medicine induced pain.. I’ve had back pain on and off, and this is another concern I try to be aware of as far as kidneys etc., while being on the ivig…. I had thinners when I was in the hospital, and I think they were close to giving me them again… I was on baby aspirin, due to genetic lydin (sp) in blood and history of stroke.. Hope things are getting better for you……
Rod: As usual, yours sounds like a unique situation, and I think it might take awhile to get the right combo of meds in you…. Hoping for the best outcome……. Hey- the economy is tanked, so you picked a good time to be sick——————————————————–deano:)
P>S> On the bright side/truth… I have not been sick with a cold/flu/sinus or anything since being on ivig…
AnonymousMarch 14, 2009 at 7:30 pm
Plasmapheresis doesn’t work well for me on its own. I sometimes see very slight improvement, but within a week or so I am back on the brink of paralysis from the throat down. My docs have found that my body has a very fast turn around time with regard to producing whatever it is that attacks my nerves. What works really well for me is to get plasmapheresis every thursday & ivig every friday. I too tried the steroids, rituxin, cellcept, etc., but the only thing that works is this regime of pheresis & ivig. As others have said, everyone is different & you just have to find doctors who are willing to try different combinations until you come up with something that works for you. My nephrologist just came back from an international conference & he said that doctors were all over the board when it comes to treatment regimes for CIDP. He even said that some doctors were still having their patients use central lines & hadn’t even thought about graphs & fistulas for patients who get maintenance pheresis. That just goes to show that the doctors treating CIDP are very diverse. Some are aggressive, progressive & innovative and others are willing to give up when they hit a wall. Hang in there & keep advocating for yourself!
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