December 24, 2013 at 12:48 pm
I am hoping to start treatment soon and would like to hear your opinion of different treatments. Because I am so new, we don’t know which ones work for me yet so any opinion is welcome.
IVIg vs PE vs various steroids? Side effects? Inconvenience? My ultimate goal is to keep a full time (desk) job if possible, and have an as near normal life (bicycling, vacation, dare I dream?) as possible.
Is there anyone for you nothing has worked well? If so, how do you cope? What are the options?
Thank you for helping out a shocked and terrified newbie.
December 24, 2013 at 6:52 pm
It is up to the neurologist to find the best treatment, and, naturally, the insurance company has a big say in it. Treating a serious case of CIDP can be very expensive, so they want to make sure they are getting their money’s worth.
I had all standard treatments. I first had a five-day loading dose of IvIg. This did not halt the progression of my weakness, so I went back to the hospital after flunking out of rehab. I then had a second loading dose, but still did not do well in rehab and continued to decline. Then I got pneumonia and went back to the hospital. By the time I recovered from pneumonia I was paralyzed below the neck. I was then given plasma exchange and had nine treatments. I began to show improvement after about seven treatments.
As I recovered, I was put on steroids (prednisone) and an immune system suppressant (Cellcept). Prednisone can cause side effects, but I had none. The dosage was tapered down to zero over the course of about a year. Cellcept is my long-term treatment and I am tapering that down as well. I have had no side effects from Cellcept. I have not taken IvIg since my early loading doses.
Some people have side effects from IvIg, but I had none. You can read about this in older threads. PE sounds scary, but for me there were no difficulties at all. The catheter was put in under sedation, and the treatments were completely painless. I slept through most of them.
I needed eight weeks of rehab before I was strong enough to go home from the hospital.
My treatment has been extremely successful. I have no complaints. I hope your case is resolved as well as mine was.
December 24, 2013 at 7:54 pm
I started with PE, 5 times in 5 days followed by 3 days of IVIG, as the Neurologist said prednisone was really a problem with its side effects. Did really well for 10 weeks then regressed sharply and back to PE 5 did well for 3 weeks then “off the cliff”. Then we did IVIG 5 loads and moved to every 8 weeks, then 6 weeks then 4 weeks then 3 weeks and I did really well on the IVIG basically symptom free. Now after 19 years we are trying me to see how long I can go without treatment. For me both IVIG and PE worked wonderfully well but IVIG is much less invasive and 1 day per period is lots better for me than 5 days of PE per period.
I wish you well with whatever treatment is decided upon.
December 24, 2013 at 8:06 pm
Thank you both! I pray one of these treatments will work well for me. if not, I will be looking into the NW SCT.
December 24, 2013 at 8:23 pm
Plasmapheresis versus IVIg/SCIg
From my non-medical view, the bad (GBS/CIDP) antibodies are already in your bloodstream while you are being treated with IVIG/SCIg. IVIG stops your auto-immune system from releasing more into the blood stream, but it does little or nothing to kill the bad guys already released. Unlike IVIG, Plasmapheresis will remove (filter out) the bad guys from your blood stream, but won’t do much about stopping your system from producing more. One pass of Plasmapheresis won’t get all the bad guys because some are too deep in the veins at the time. Since the blood is always circulating, the bad guys will soon show themselves again and that is why Plasmapheresis works better after several treatments.
PE can be summarized as the removal of units of whole blood anticoagulated with heparin followed by centrifugation to separate the blood into the cellular elements and plasma. The cellular elements are then mixed with a replacement for the discarded plasma and reinfused.
Plasma Exchange helped me more than IVIG. I had approx 75 PE sessions over about 18 months, mostly outpatient. I noticed improvements 2-3 days after my first PE treatment. I never had any noticeable improvement with IVIG, although it may have helped limit the severity of my GBS/CIDP/MFS when I first came down with it.
The outpatient PE exchange takes ~3 hours, longer if using a PICC line or other slower infusion method, and they replaced approx 4 quarts of fluids during each session, in my case. They will administer 4 to 6 bottles of the replacement plasma, depending on doctor recommendations. The fluids removed from my bloodstream were very gross (dark and dingy looking) when I first started, then changed to yellowish, and then became clearer towards the end.
The PE always made me very sleepy and I was weaker when I left than when I started. I always slept well the night after. I started outpatient PE at twice per week for several weeks, than dropped to once per week. Then every other week, then every two weeks. I stopped for a few months then started up again at every 2-3 weeks.
I had many side affects after Prednisone took my immune system off-line. I got the typical puffy face plus diabetes, pneumonia, shingles, thin skin, cataracts, and a very rare fungal infection that required neurosurgery to remove (left me with vision loss in one eye).
Other folks report tolerating Prednisone well. I recommend you discuss alternate immunosuppressants and cortisteriods like Imuran, Cellcept, etc. with your doctor before deciding what is best in your particular situation.
December 24, 2013 at 8:53 pm
GSLM, If you become serious about SCT, you may find Alice’s website of interest: http://www.alicedicroce.com/index.html
I saw you signed up at the CIDP Survivors group. Its great that you are diligently educating yourself about the disease!
I wish you the best!
December 24, 2013 at 11:50 pm
Jim, thank you for the kind words. I truly appreciate your help.
I would love to try the sct but I know I won’t qualify by a long mile. I don’t even have a firm diagnosis yet, very frustrating. I hope the sct will be a success and the treatment becomes available eventually.
December 25, 2013 at 9:38 pm
I have been reading this site all day today. So many helpful posts.
However, reading the posts, I also realize most CIDP people are struggling and declining despite of treatments. It is scary but I hope I will be strong.
December 28, 2013 at 6:09 pm
I have been on this CIDP journey since February of this year, and would like to give you a ray of hope. I am at this point in my treatmnet at about 95 to 97% of where I was pre diagnosis. Walking without aid, (even over snow banks) and working a full time job. (I have a little fatigue, but it is manageable) I am one of the lucky ones from the posts I read here. I happened to be assigned a Neuro that was familiar with CIDP and had a diagnosis in only days. My treatment was started inpatient, 5 days of IVIG.(No side effects to date.) I was on FMLA leave for three months, returning to work full time after easing into it for two weeks. My Neuro was worried that I was returning to soon, but I have done very well. I responded after my “first” IVIG treatment and with P.T. (until June) have been improving steadily since, with two minor relapses. When these occurred my Neuro just repeated the loading dose and then increased my IVIG from one to two days. I am being slowly eased off of the IVIG and the pulse dose of prednisone. We are trying to find the sweet spot, to prevent further relapse. I would be remiss if I didn’t mention that at this time we are exploring alternatives to the prednisone, but this is because I have another medical condition. I am looking forward to a future where I may be able to use nothing. I currently get my IVIG from a Home infusion service. The nurse comes to my home and I recieve my IVIG over several hours. It has now worked out that I recieve my treatments on weekends, so it does not disrupt my work schedule. I am however covered under FMLA, for intermittent leave. If I need to be gone from work for doctors appts. IVIG treatments or if I relapse again, I do not have to worry about being fired for absence from work. (Something you might look into, If you haven’t already, so you don’t worry about a job loss.) I know this whole process is scary, but I find that I do much better when I stay as positive as possible. I still believe that I will recover fully. I can’t speak to other treatments at this time, because I have no experience with them. That is not to say I have not done my own research into possible alternatives. I do know that IVIG has worked wonders for me. I hope this helps. I wanted you to hear from someone who is doing well, making steady progress to a “full” recovery. Good Luck, I wish you well.
December 30, 2013 at 12:10 am
Bob, thank you so much for your post. How I hope I will be able to have some normalcy again.
I would love to know when phase 3 clinic trial of the stem cell transplant will begin. Anyone has any insight?
December 30, 2013 at 1:18 am
Both clinical trials are for Phase II. Chicago presently has a “study completion” date at end of 2014. Seattle has a “primary completion” date of mid 2014, the “study completion” would probably be a year later.
I don’t think either trial will schedule a phase III until after they have sucessfully completed the phase II.
December 30, 2013 at 2:21 am
Jim-LA, thank you for the info.
From what I heard, the nw sct is doing very well and I think a phase 3 probably will happen. Just a matter of time. What do you think? Am I being too optimistic about it?
Btw, do you have a link to the Seattle trial? I wasn’t aware of it.
December 30, 2013 at 3:12 am
Learn about the Seattle trial here: http://www.seattlecca.org/clinical-trials/transplant-2260.cfm
I think one of the keys is longevity. If the SCT demonstrates long-term permanent success, it will go to phase 3. I think the Seattle trial has a better chance of this due to its wider treatment criteria.
I still plan to enroll in the Seattle trial if I can get past the financial blockades. 2014 should provide me with some answer$.
December 30, 2013 at 2:31 pm
Jim, I sincerely hope you can get into the Seattle trial and the roadblock$ are removed.
BTW, could you elaborate why you think the Seattle trial is more promising?
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