New member, 3rd round of IVIG

Kathy L

Welcome to our group. I also have CIDP and walk like a duck!

I was getting IVIG every three months until it was pointed out to me that IVIG only lasts for about 21 days before the effect starts to wear off.

With advise from others here I approached my doctor and now I get IVIG every month.
It seems to be working better!

I am not getting a ton of electrical zaps!

I still have pain and take Gabapentin for that.

As to how and why you got CIDP may remain a mystery.

Have you had any vaccinations just prior to getting ill?

Docs are pretty sure I got mine from a flu shot!

Just something to think about.

If you have questions just start asking away and the group will try to answer you and help you move forward.

Welcome again and take care

Rhonda from Canada

Usually, docs will try a 3-5 day ‘loading dose’ and then do it monthly [with lots of blood tests to check your immune levels -every week to ten days?] and then decide how much and how often of which IVIG brand you need.
You have to get enough IG into you to FIGHT inflammation then taper off or up the dose to what you need to keep things from getting worse?
Some neuropathies can be a result of chemo? But from the little you’ve indicated, I’m just guessing that it’s not your case. In my case tho it mite have been the ‘hatching’ cancer that started the CIDP [along with a good pneumonia] long before the cancer was actually found -that IS the normal sequence of what they call ‘paraneoplastic neuropathy’. It was one of the few things I was NOT tested for during or after the CIDP testing.
All in all? The two issues CAN be connected? OR NOT. Once we’ve got both? It can’t be determined unless comprehensive testing for both is done at the same time…..and they usually don’t OCCUR at the same time.
No harm, no fowl. No difference in how we’re treated actually…?
But in your case? I’d ask your doc why you’re not getting the ivig more often and WHY? Maybe it’s an ‘afford’ aspect? or problems with your insurance-don’t know where you live and what your plan is….that can make a BIG difference!
Check out the e-zine [on-line magazine] at IG-Living and sign on…read the issues on line and save paper. It’ll widen your horizons about IVIG and how so many need it to LIVE normal or semi-normal lives. You won’t get any junk mail and if costs are a problem? Their staff can help you find resources! They won’t get back to you right away? But they DO get back to you and are very HELPFUL!
My heart goes out to you! Standing soo long? With the ‘duck-walk’ to boot? I’d last about 15 minutes! Can I say: OUCH! Hugs and hope!

[QUOTE=homeagain]…Some neuropathies can be a result of chemo? [/QUOTE]
My son’s wife’s cousin has a severe form of neuropathy which he says is due to, and apparently proven to be due to, a result of chemotherapy he received in the past. I do not know the medical history, but do know that CIDP has been ruled out.

An on-line search gives loads of links. For example,

[url]http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Peripheral_Neuropathy_Caused_by_Chemotherapy.asp?sitearea=MBC[/url]

Which is an American Cancer Society web page with this excerpt:

“What is chemotherapy-induced peripheral neuropathy or CIPN?

Chemotherapy-induced (chemo-induced) peripheral neuropathy may be called CIPN for short. It is a set of symptoms or problems caused by damage to peripheral nerves. Peripheral nerves are nerves that control the sensations (feeling) and movements of our arms and legs. They also control the bladder and bowel, though these are affected less often. Chemo-induced peripheral neuropathy is caused by the chemotherapy drugs used in cancer treatment.”

I’ve got to ask? What tests are they or have they been ‘doing’ on/to you? At times, the one, might/can be related to the other? At other times, not… It’s all in the ‘sequences’ and how good the tests were from initial diagnosis of cancer on thru! Get copies of every and ALL Blood work done by different docs? And put it into a chronologically organized file! Word of warning? This will give your next diagnostic doc a ‘history’? BUT HE/SHE is going to want a vampire’s worth of blood NOW to see what IS now. If the labs are done by quality companies and in a consistent manner? They can see differences in either key or adjacent relative test results.
Don’t know about you? But I’ve timed my blood tests to either 1-2 days before my next infusion…ergo? I get the orders and have them all done at the same lab! And I’ve done that for at least 4 years to date? Why? Because the info is going to be all on the ‘same standards’ consistently, AND, It’s in one consistent format for each test. That helps when YOU are trying to make sense of any numbers. IF there are ‘special tests’? Make sure that you won’t ‘play’ UNLESS you get a copy? Getting your own copy of some abstract specialised test? Could save your life. Now or in the future.
Now Chemo does cause some neuropathies? But not necessarily GBS or CIDP! Usually they are due to other immune problems, which may or not be related to cancers. IT IS HARD TO PROVE! Do keep in mind? Treatments are the same for our problems. Ostensibly? Research says once the ‘irritant’ is removed? The ‘problem’ will go away. Yeah, sure, NOT! You know what I mean, and heaps of hugs and good things! I just hope you find some RELIEF somewhere! Bad enuf the other stuffs? But this isn’t icing on the cake. I guess that’s why I prefer dark chocolate? Munch, munch! Glurp? Chocolate is GOOD! No doubt about it! Fattening, but used with prudence, Well? Superior than many drugs! 😎 – Hope and good things again.

Hello welcome to your GBS/CIDP family. You are not alone! Maybe it doesn’t really matter what causd it although I can understand if we knew the cause, we could find the cure. I have not had cancer & radiation, I did get bitten by a spider 30 + years ago. It was never seen, the Dr. said it was a brown recluse. In my oppinion you really should have had a loading IVIG of 5 in 5 days, then one every 3-4 weeks. And lots of B-12. We are all glad that you can walk like a duck. By the way do you also have hair loss, difficulty swallowing, metal taste in your mouth, loss of appetite?
You are in my heart & in my prayers.
Love, smitty

The people on the forum, like usual, have given you wonderful advice. The life of ivig is like 21 days and so you do not have enough of it in your blood to keep you going. When my daughter was diagnosed, she was like you and not getting enough. When we finally saw the right doctor, he had her get ivig once a week until she came back to baseline and then he started spreading it out. He is well known in the cidp world and he told us that 50% of adults eventually overcome cidp. SO THERE IS HOPE. Also, it took the wonderful people on this forum to help me to realize that I was at a turning point and that I needed to find a new doctor for my daughter and i did and i am so grateful. I really believe that they are the experts because many heads are better than one. Best Wishes.

If your neuro doc doesn’t change your IVIG schedule, you need a new neuro doc, someone who cares. Your Drs. & medical teams are one of your first lines of defense. Take my advice with a grain of salt.
Love& gentle hugs, smitty

I agree with the other posts that you need more treatment than you are getting. Try a 2nd or a 3rd opinion and make sure the neuro is familiar with CIDP. Many neuros and specialist have never seen this disease in their lifetime.
There may be different causes for CIDP and there are variants of CIDP also.
GBS and CIDP have been associated with flu vaccinations and other vaccines, but nothing has been proved.
Some people do not respond to IVIG, Prednisone or Plasmapheresis and need Cellcept or other immunosuppressants. Cytoxan is a cancer drug that can arrest the disease in other people. Stem Cell Therapy is also an option.
Keep posting and asking questions. There are so many knowledgeable and helpful people here that someone is bound to come along and head you in the right direction and give good advice as some already have.
Prayers and Blessings for you.

How are you doing, what’s happening with you? I haven’t seen you posting & wondered. Did you find our advice helpful?
Love & gentle hugs, smitty

KathyL,

Or you could just apply to the stem cell transplant program at northwestern. There are guidelines — you have to have first failed a course of IVig (sounds like that is happening) , a course of prednisone and one other immunosuppressant or chemotherapeutic agent. Don’t forget, all of the above only can halt/slow the disease. And the pred and other immunosuppresants/chemo have major side effects. SCT promises to provide long-term remission (OK, nobody says cure, but there are folks who have undergone this procedure and are doing well WITH NO MEDS years later).

I am going having the SCT done in a few weeks, and though I am sure the treatment is pretty yucky, I am looking at long-term benefits and quality of life. For me, a life time of screwing around with meds that ultimately don’t work and cause horrible side effects is not an option if there is something better out there.

Sharon

I grately agree with Sharon! Love, smitty