I was diagnosed with GBS in June. Then in August I got rediagnosed with CIDP. I'm currently doing a plasmapheresis treatment once a week. We've tried extending the treatments to every 10 days twice now. The first time I needed 3 treatments in a row to get back on track aND went back to every 7 days. This last time, the 10th day I noticed increased lack of feeling in my hands and feet. So now I'm back to every 7 days. Is this frequency normal? Arent most people with CIDP able to go longer between treatments? Is anyone seeing a specialist for CIDP?
Usually, IVIG is considered the best treatment. I have been on it for 5 1/2 years and have made great progress. I would ask about it asap. Damaged nerves take a long time to heal.
My understanding is that plasmapheresis is indicated where they have detected specific protein indicators in your blood results. It all depends on the "cause". IVIg is a "better" option that plasmapheresis for most people because for them plasmapheresis is not warranted and IVIg is less invasive (less risky). I don't think anyone selects plasmapheresis where IVIg is an option.
You do not indicate what "caused" your neuropathy (and onset timeline). Usually people diagnosed GBS have an idea of how it started or what set it off. That is a personal interest for me as I had a GBS like onset but by the time of diagnosis it was called CIDP. Cause for me was most likely a minor surgery caused aggravation of what was probably a very minor un-diagnosed neuropathy related to IBD over 20 years previously.
Your neurologist or haematologist (one or both should be very expert in treatments) is the best to ask about treatments and possibilities because we are all different and some of those differences are very important in working out that treatment cycle (even the sort of treatment). Personally I am on 4 week IVIg though soon we are going to try 6 weeks because of the holiday season and that I will be a long way away on a holiday cruise. That could be interesting.
I am certain lots will tell you that they are on different treatment periods. It really is all about how it works for the individual. I would really love 6 weeks to work because I HATE NEEDLES!!!!
If you want to research your condition I always recommend using Google Scholar http://scholar.google.com/. BUT be patient and try all sorts of search terms - takes a long time to find stuff that you can access as a lot is pay for view - too expensive to go there. A great time waster but you might find answers and soon know a lot more than the average GP.
Good luck - keep smiling.
My haematologist says "the grass looks greener looking down than looking up...." think about it....
Steroids, IVIG and plasmapheresis are the first line of treatments. Typically, one of the three helps symptoms. If not, then your CIDP is refractory.
And apparently your CIDP is also relapsing and remitting. My partner’s CIDP is also this aggressive.
Luckily her neurologist HAD previous experience treating CIDP. He consulted his colleagues and told me that trying Rituxan may be the only choice at that point - she had digressed from ambulatory to quad paralyzed in three weeks - where IVIG suddenly stopped working to hold off the CIDP attack.
So, at this point her respiratory system was being effected too so her neurologist and I decided to move forward with the Rituxan.
This was two years ago. She remains in a medicinally induced remission, is ambulatory and independent again.
Wherever the weakness, paralyzation, spreads, the nerves are damaged. So clearly in my partner’s case, her entire PNS was effected and she is now experiencing a lot of painful healing.
So there is a method to my blabbering madness.
Take out the big guns. Now.
Her neurologist followed the JRA protocol for administering Rituxan to start. There is plenty of material to read on the internet now about its effectiveness.
Basically, if your CIDP attacks your B cells, Rituxan will be effective. If it is your T cells, Cytoxan.
A regimen every six months keeps the medicine in the system, and keeps my partner alive. Without it, she would have been dead two years ago.
Please message me privately if you need to. CIDP this aggressive is not common, but definitely not unheard of.
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PS - Receiving PE once every seven days is not okay. It is indicative that it is not working for your disease, not that you may have the wrong diagnosis.
tperri said:
Steroids, IVIG and plasmapheresis are the first line of treatments. Typically, one of the three helps symptoms. If not, then your CIDP is refractory.
And apparently your CIDP is also relapsing and remitting. My partner's CIDP is also this aggressive.
Luckily her neurologist HAD previous experience treating CIDP. He consulted his colleagues and told me that trying Rituxan may be the only choice at that point - she had digressed from ambulatory to quad paralyzed in three weeks - where IVIG suddenly stopped working to hold off the CIDP attack.
So, at this point her respiratory system was being effected too so her neurologist and I decided to move forward with the Rituxan.
This was two years ago. She remains in a medicinally induced remission, is ambulatory and independent again.
Wherever the weakness, paralyzation, spreads, the nerves are damaged. So clearly in my partner's case, her entire PNS was effected and she is now experiencing a lot of painful healing.
So there is a method to my blabbering madness.
Take out the big guns. Now.
Her neurologist followed the JRA protocol for administering Rituxan to start. There is plenty of material to read on the internet now about its effectiveness.
Basically, if your CIDP attacks your B cells, Rituxan will be effective. If it is your T cells, Cytoxan.
A regimen every six months keeps the medicine in the system, and keeps my partner alive. Without it, she would have been dead two years ago.
Please message me privately if you need to. CIDP this aggressive is not common, but definitely not unheard of.
My son was diagnosed with cdi and has done immunoglobulin infusions (already done weekly, monthly, ...) for two years. He feels many, many leg pain, but not weakened. These pains diminish over time? Now he began to subcutaneous infusions because it is faster. The result is the same?
was diagnosed with CIDP
miriam said:
My son was diagnosed with cdi and has done immunoglobulin infusions (already done weekly, monthly, ...) for two years. He feels many, many leg pain, but not weakened. These pains diminish over time? Now he began to subcutaneous infusions because it is faster. The result is the same?
I was diagnosed with CIDP in May. I started with weekly plasmapheresis treatments. I was feeling so much better! I had surgery in June to get a fistula. The fistula started off working well but unfortunately that was short lived. My treatments were painful so I started to do treatments every other week. This is not working I have lost feeling completely on my right side. So the doctors have decided to put a perm tunneled catheter in my neck again on Tuesday. Then on Thursday I am having major vascular surgery on my fistula. I will not be able to use fistula for five months, and the neurologist has increased me back to treatment every week. According to my neurologist as my body reduces symptoms we can try to decrease treatment slowly. However my body may need weekly treatments, ultimately my symptoms will dictate the treatment.
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I have just been diagnosed with CIDP. If that's what I have, it's hard to say. Yes, I have neuropathy, and it does seem to be creeping up my legs. I also have stiffness in my hands. But I've had slight neuropathy for years and it never really bothered me. I was also recently diagnosed with sleep apnea. I tried the sleep apnea machine and it didn't help me sleep at all. I think those machines are quite horrible. Right now, I get about 4 hours of sleep at night and then lie there trying to get rest. Most of the time, that works, but I don't know if the sleep apnea is contributing to my issues or not.
The worst part of my condition is what I started with: dull pain in my abdomen. This started in September 2015 after I had a doubt of traveller's diarrhea in Mexico. It has become ever more chronic. No one can seem to figure out what it is, and now the entire concentration is on the neuropathy,
So I have sleep issues (which started in about January 2012, before the Mexican diarrhea incident), the abdominal issues (starting September 2013), the increased neuropathy (starting January 2014 and increasing all the time), the hand stiffness (starting July 2014). I have noticed that my metabolism has decreased significantly and I'm trying to eat less but I do not lose any weight (and I have been exercising as I have since age 40). I am 71.
I am just wondering whether I really have GBS, CIPD, or something else. I can live with the neuropathy and sleep issues, but the abdominal problem on top of it is really crushing. Any suggestions? Ideas? Thanks.
Your neurologist should be able to up your dose and spread out the frequency. Owens from 35 grams weekly to 7o grams every two weeks I also was told by my doctor it has a 1/2 life in my system . I use a c-pap as well . It’s not perfect and it took awhile to get used to but it helps. Mine has progressed into my autonomic system . I don’t feel temperature. I also get cramps in strange areas. I would try a banana or two
I am trying to reply to you, Robert Martin. I am not sure what you are replying to. I have not been given any dosage. I am having problems with temperature. I do eat lots of bananas. What is the autonomic system?
Robert Martin said:
Your neurologist should be able to up your dose and spread out the frequency. Owens from 35 grams weekly to 7o grams every two weeks I also was told by my doctor it has a 1/2 life in my system . I use a c-pap as well . It's not perfect and it took awhile to get used to but it helps. Mine has progressed into my autonomic system . I don't feel temperature. I also get cramps in strange areas. I would try a banana or two
plasmapheresis did not work for me, IVIG did. Perhaps they need to try that on you.
I did try IVIG. It didn’t work for me at all.
mamabear said:
plasmapheresis did not work for me, IVIG did. Perhaps they need to try that on you.
My GBS was brought on by a vaccine shot I received after having my daughter. I was started out on plasmapheresis but I did do a round of IVIG after my second relapse. I’ve noticed that most on this site prefer IVIG. However, IVIG had no effect on me at all.
Michael C Stark said:
My understanding is that plasmapheresis is indicated where they have detected specific protein indicators in your blood results. It all depends on the “cause”. IVIg is a “better” option that plasmapheresis for most people because for them plasmapheresis is not warranted and IVIg is less invasive (less risky). I don’t think anyone selects plasmapheresis where IVIg is an option.
You do not indicate what “caused” your neuropathy (and onset timeline). Usually people diagnosed GBS have an idea of how it started or what set it off. That is a personal interest for me as I had a GBS like onset but by the time of diagnosis it was called CIDP. Cause for me was most likely a minor surgery caused aggravation of what was probably a very minor un-diagnosed neuropathy related to IBD over 20 years previously.
Your neurologist or haematologist (one or both should be very expert in treatments) is the best to ask about treatments and possibilities because we are all different and some of those differences are very important in working out that treatment cycle (even the sort of treatment). Personally I am on 4 week IVIg though soon we are going to try 6 weeks because of the holiday season and that I will be a long way away on a holiday cruise. That could be interesting.
I am certain lots will tell you that they are on different treatment periods. It really is all about how it works for the individual. I would really love 6 weeks to work because I HATE NEEDLES!!!
If you want to research your condition I always recommend using Google Scholar http://scholar.google.com/. BUT be patient and try all sorts of search terms - takes a long time to find stuff that you can access as a lot is pay for view - too expensive to go there. A great time waster but you might find answers and soon know a lot more than the average GP.
Good luck - keep smiling.
My haematologist says “the grass looks greener looking down than looking up…” think about it…
My wife also gets plasmapheresis treatments once a week. IVIG worked better but she had a very bad reaction to it that landed her in the hospital twice. She has several other auto-immune diseases plus CF so she has lots going on. Plasmapheresis treatments are keeping her stable but not actually improving symptoms the way that IVIG did. Once a month she goes for 2 treatments in a week. That extra treatment has made a difference. Her doctor said that most of his patients get treatment once every several weeks. There is some concern over side effects of too many treatments but so far so good. She is getting them for over a year now. The bigger problem is the darn catheter that gets infected every once in a while. I wish they could make a machine that requires less blood flow so she wouldn't need a permanent catheter.
I hope this helps. Be well.
There isn’t a dosage with plasmapheresis. I get Albumin to replace the volume of plasma I lose.
Robert Martin said:
Your neurologist should be able to up your dose and spread out the frequency. Owens from 35 grams weekly to 7o grams every two weeks I also was told by my doctor it has a 1/2 life in my system . I use a c-pap as well . It’s not perfect and it took awhile to get used to but it helps. Mine has progressed into my autonomic system . I don’t feel temperature. I also get cramps in strange areas. I would try a banana or two
I have been on both treatments. I was on IVIG longer, however. Back in August, 2011 I was given Plasma exchange, because I was not improving to my doctors satisfaction. I was on plasma exchange for about three months. When I went back on IVIG in 2012, the treatments went from 8 hours in a infusion center to two hours at my home. The last time I had IVIG was in August 2012. The treatments were creating problems for my kidneys, decreased function, so the IVIG was stopped. I haven't had anything other than neurotin and cymbalta, since.
If I do too much, I get muscle cramps, too. I use CRAMP 911 and potassium supplements. I saw a specialist in CIDP at the Center for Excellence in Detroit, at Wayne State,
In 2013, I started falling down and lost sense in my arms/hands. Was diagnosed as CIDP, given 5 days of IVIG, a few weeks of rehab and sent home. All feeling came back except for weak legs. A few months later I went to a CIDP specialist who said I didn't have CIDP but probably had myositis (specifically Inclusion Body Myositis IBM) A muscle biopsy confirmed this. I didn't have nerve damage, I had muscle damage! If you are not certain what you have, PLEASE get a muscle biopsy to rule out myositis, symptoms can be very similar. I am 77, still walk climb stairs, etc. No cure for IBM
charterbooks said:
I have just been diagnosed with CIDP. If that's what I have, it's hard to say. Yes, I have neuropathy, and it does seem to be creeping up my legs. I also have stiffness in my hands. But I've had slight neuropathy for years and it never really bothered me. I was also recently diagnosed with sleep apnea. I tried the sleep apnea machine and it didn't help me sleep at all. I think those machines are quite horrible. Right now, I get about 4 hours of sleep at night and then lie there trying to get rest. Most of the time, that works, but I don't know if the sleep apnea is contributing to my issues or not.
The worst part of my condition is what I started with: dull pain in my abdomen. This started in September 2015 after I had a doubt of traveller's diarrhea in Mexico. It has become ever more chronic. No one can seem to figure out what it is, and now the entire concentration is on the neuropathy,
So I have sleep issues (which started in about January 2012, before the Mexican diarrhea incident), the abdominal issues (starting September 2013), the increased neuropathy (starting January 2014 and increasing all the time), the hand stiffness (starting July 2014). I have noticed that my metabolism has decreased significantly and I'm trying to eat less but I do not lose any weight (and I have been exercising as I have since age 40). I am 71.
I am just wondering whether I really have GBS, CIPD, or something else. I can live with the neuropathy and sleep issues, but the abdominal problem on top of it is really crushing. Any suggestions? Ideas? Thanks.