Hi
IVIG for 6 month did not help a bit.
I'm advised to start cyclophosphamide for 6 month.
Anyone tried it ?
I read a lot of side effects on that.
Thanks'
I did IVIG,s for 15 months and they did not help. Any new treatments that is available without severe side effects sounds interesting. Thanks.
Kobi and Secondopinion, I am in the same boat as you guys. Finished 6 months of IVIg in March without much ,if any, improvement. Decided to get a 2nd opinion on what to do going forward, not really liking my options too much. I would be interested to hear what course of action you guys take, and how you respond to your treatments. Please keep us posted.
Thanks
I will update for sure
But I think I will ask for 2nd opinion , I'm too sceard from this threatment.
Btw , before I had series of 5 Plasmapheresis threatment.
Since no improvement the Prof' decided to "jump" to 2nd line of threatment cyclophosphamide
Making lemonade said:
Kobi and Secondopinion, I am in the same boat as you guys. Finished 6 months of IVIg in March without much ,if any, improvement. Decided to get a 2nd opinion on what to do going forward, not really liking my options too much. I would be interested to hear what course of action you guys take, and how you respond to your treatments. Please keep us posted.
Thanks
Sorry to hear that neither IVIg or Plasma Exchange has been effective for you. How long have you been battling with CIDP?
I was diagnosed in 2003, though my symptoms have been mild until last year. I too, am reluctant to go the immunosupressant / Chemo route unless I feel I have explored all of my options.
Cyclophosphamide seems to have quite a number of risk. Its hard to know what to do, especially when this disease starts relentlessly attacking our bodies.I wish you success in finding the right answer for your best health.
Kobi said:
I will update for sure
But I think I will ask for 2nd opinion , I'm too sceard from this threatment.
Btw , before I had series of 5 Plasmapheresis threatment.
Since no improvement the Prof' decided to "jump" to 2nd line of threatment cyclophosphamide
Making lemonade said:Kobi and Secondopinion, I am in the same boat as you guys. Finished 6 months of IVIg in March without much ,if any, improvement. Decided to get a 2nd opinion on what to do going forward, not really liking my options too much. I would be interested to hear what course of action you guys take, and how you respond to your treatments. Please keep us posted.
Thanks
I was diagnosed with Guillain-Barre 12 month ago.
After few month with no improvements (got worse) I was diagnosed with CIDP.
As I learnd CIDP is a name of wide varaiety of peripheral neuropathy / symphtoms ... for me it affects "socks & gloves"
TJ here from mod support
For CIDP 2.0–3.0 mg/kg/day administered orally as a single daily dose. A test dose of 50 mg/day may be given for the first week. When you read about it in the internet, they are talking about a dose of 40 to 50 mg/kg and that's often given IV. You can expect far fewer side effects. (I said fewer not none)
Here is my question - 6 mos???? Numerous studies have shown that it takes up 12 mos or more for the immunosuppressive effects of this agent to occur. This is not unusual for any immunosuppressive agent not just cyclophosphamide Including IVIG. I guess I'd be asking why he thinks 6 mos will do? A consult with a doc used to using these agents (a rheumatologist) might help you sort it out INCLUDING the side effects.
I have seen docs give up on PE pretty quickly too. Presumably PE works by the removal of pathogenic humoral factors, such as circulating immunoglobulins, auto-antibodies, pro-inflammatory cytokines or complement. A single exchange removes 3–5 liters of plasma and reduces intravascular IgG by approximately 45%, such that three to five exchanges are required to remove approximately 90% of circulating IgG. Four exchanges seems to be the magic number.
Now I'm not questioning your treatment by any means. Its just that those of us with Autoimmune disorders using these types treatments have learned that the number one thing leading to success is patience. Starange thing to say say to someone on average that waited 7 years for a diagnoses (on average)
The other thing we have learned is it is darned rare for the side effects of ANY of these meds to be worse than what the disease does. Yet I have seen far too often people deny themselves life changing treatment because of fear of side effects. Forgive me for being blunt (and I am not directing this to anyone specific) There is a big difference between being forearmed about treatment and being stupid about it. All of us tend when something is out of our control (like a disease) tend to rgain control by controlling what we can. Often it is meds/treatment. WAY too often that leads to self fulfilling prophecy (my granddaughter is not allowed on the internet anymore) or worse really poor decisions so we can show ourselves (and frankly way too often stoooopid friends and family members who just don't get it) we are in control. Problem is we have let ourselves be defined by our disease and lost all control to it when we do that.
Best of luck. BTW here a piece of trivia that is likely not comforting but interesting. Of the major "treatments" for CIDP, they all have 70% - 80% of success. In terms of medical treatment (pharmacology) that is almost too high to believe. a "good" treatment is 51%...... YOU WILL FIND THE RIGHT ONE. Just remember that patience thing, and lets help each other remember it as well.......... keep in mind half of us have docs that graduated in the bottom half of their clas, but they have to be pretty darn good to do even that.....................
Take your time with each med before jumping to other
My doctor informed me that he wont jump from a med to other so he do not run out of options because treatment is arround 9 med
So wait be patient and increase dosage a little bit more
Need patient
Hi Fozi
Thank you.
After discussion with several people who done Cyclo I have canceled the treatment a day before scheduled 
.
I spoke with six people.
4 reported no improvement.
2 reported short time improvement
Sorry for delay in response. Been off this forum for a while. I finished 6 mos of cytoxan (cyclophosphamide) in Dec 2015. Did not help, but left me with an accelerated heart beat and now a possible lymphoma. My bone marrow, and thus my bloodwork, is a mess. Docs are reluctant to say all caused by cytoxan, but never had any issue with these before. And, these are all known side effects. All new baggage on top of CIDP. Now I’m being considered for Rituximab (Rituxan). No assurances that it will help, but it’s kind of like there are not a lot of options with proven success. Chemo is last resort stuff. Despite my experience with cytoxan, I will probably go forward with Rituxan. Very few alternatives. Youight want to ask your docs about Rituxan. Some believe it is a better choice than cytoxan for CIDP, and may have fewer side effects. Good luck. Sounds like you and i may be at a similar point in the progression of CIDP. Not sure how to communicate directly on this site, but I would love to share how we are doing going forward. Best of luck. Mike (secondchancer).
Hi Mike
Thank you for sharing.
I decided not to be test subject and not do the cyclophosphamide a day
before scheduled , I’ve consulted with 4 people who did it , only one of
them had improvement for few month.
My Prof. didn’t like it .
I’m doing IVIG every 4 weeks , and doing well.
Take care.
- Kobi