No success w/IVIg for 1 year-anyone else?

I don’t believe there is any difference in the efficacy of IVig in sensory vs. motor CIDP. I happen to have both. IVig did not work for me. It doesn’t work for everyone, but neurologists often seemed surprised at that. I know my first neuro was and so sent me off to a neuro-muscular specialist who had much more experience with such diseases. My new guy put me 60 mgs. of prednisone. That seemed to have halted the progression, but did not reverse it. you are right…pred is not good for the long term. my doc’s hope was to give me a massive dose to get me into remission and then begin tapering off to find out the minimum dose required.

Long story short, pred did not work, so we advanced to cellcept. Still no change. I am now going for stem cell transplant.

Here is what I have been able to figure out. Generally speaking, standard treatment (IVig, steroids, etc.) is less efficacious in the slow-moving variant of the disease, as opposed to the remitting-relapsing form. Also, multi-focal is generally more resistant to treatment. Multi-focal means that the manifestations of the disease are not symmetrical/bilateral. This is also known as the Lewis-Sumner variant. So, for example my left leg and arm are far more affected than the right side of my body.

I would find yourself a neuro who specializes in neuro-muscular disorders — CIDP, GBS, ALS, muscular dystrophy.

Best of luck to you.

Welcome. We all have lots of questions.

[QUOTE=thewife]… “greatest doctor/medical facility” you’d recommend../QUOTE]

That one’s easy. Pick one of the 7 Facilities recommended by the GBS-CIDP Foundation. That Post is here: [url]http://www.gbs-cidp.org/forums/showthread.php?t=6629[/url]

Frances, I am sending you a PM.

Sharon

Check top right hand corner of your screen. It should say welcome, the wife. In that box, click on private messages. Et voila!

[QUOTE=thewife]My husband has symmetrical sensorimotor (as proved by the two EMG/NCS studies done 1-year apart), but Dr. Harati claimed (as opposed to our other doctors) that his was more sensory. Given that proclamation, I finally pulled up an article by Angelika F. Hahn, which states: “there are ‘responders’ and ‘non-responders’, and that the efficacy of IVIg for predominantly motor CIDP was … high … but that patients with sensory forms are less likely to respond.” That’s the first published information stating there actually may be a difference in response to therapy, and why. If Dr. Harati is really right, then my hopes for remission are dimmer than they were.

What you say seems pretty accurate for my husband, He has CIDP–MADSAM with primarily motor symptoms (atrophy of rt. hand and decreased strength and dexterity and foot drop of rt. foot). He has IVIG q. 3 weeks and it has been very affective with him getting some strength and usage of the right hand back. Only on occasion will he complain of a bit of numbness in toes.
Laurel

As there are LOTS of opinions as to WHAT he HAS vs how to treat it.
In my case, issues were primarily sensory, but with a noticable muscular affect but it came later…I believe thru self-atrophy as I was not ABLE to even get out of a chair easily for several months after onset. Key to your husband is to get all the tests needed, and some are very, very expensive. IF you have insurance? Talk this over with a doc you are more likely to trust than others.
This is a good basic resource that distinguishes the subtle differences between many CIDP variations:
URL-http://neuromuscular.wustl.edu/antibody/pnimdem.html-URL
To find out about testing? Go to the index at the top of the page and at the top of that are tests that are mentioned in the text.
It IS complicated reading? But it IS a summary of each of hundreds of neuro issues! And, a valuable one! Once I was well on my way to a diagnosis, I’d found this site and everything fell into ‘place’. Also all the tests I’d been going thru were the right ones.
Next? What dosages of which brands of IVIG has your husband been getting? It simply doesn’t work if the dose isn’t at a good recommended amount. Web up the ‘brand’ of IVIG he’s been getting and do the math [computer web sites are great at helping you do the ‘conversions’]. Many docs are [I]conservative?[I][/I][/I] And thus not enuf when it’s needed – can’t do lawsuits on medical opinions tho….just find THE right doc [And I’ll pray that you do?] Makes all the diference.
Lastly, statistics on the ‘effectiveness’ of IVIG are stupidly vague! It varies from source to source…either 40%/60% or 80% who try it find relief.. But the clincher here is the DOSE.
Btw? I don’t have MADSAM. I’ve just got a solid bout of an autoimmune system running amok! It first got the nerves? Then tried to do a number on the muscles! I refused to let IT get me. It’s ‘almost’ controlled now, I just wish it’d give up and go away!
Hugs to you and your husband! It’s a hard fight, it can wear you down, but…It can help you see other more important things clearly? There is beauty in so many small sights, gestures and things! Hugs!

Frances,

I posted on the other thread. I didn’t recognize that you had started this one. My CIDP started out totally sensory in 1989. IVIG did not make a substantial or noticeable difference for me. My neuro told me early on that I could expect to never recover my sensory losses. That was 2000. To this date, I have not. It has gotten worse, but only slowly. It is a shame that you finally got a diagnosis of CIDP and now find out that there are several sub-types that respond better to one treatment or another.

That is the BAD news.

On the GOOD side. Sensory CIDP seems to go much slower than its motor brother. There are things I have to do differently, but I can live with this, and I can do most of the same things I did before. Yes. I am on disability, but I have had this for quite a long time. I cannot predict what course his CIDP would take, but as he manages his life, he will manage his symptoms. If he “burns the candle at both ends” the CIDP will kick him in the butt. If he moderates his lifestyle, the CIDP will not be so severe.
stress = CIDP aggravation.
love = harmony = CIDP relief 🙂

ask me some questions, I will give you some answers.
good luck. we can make it through this

Dick S

Frances,

I am not sure what you know about CIDP and what you don’t. I only hope to help.
CIDP is really about the immune system attacking the nerves. The Immune system interprets the myelin, which covers and protects the nerve axons as a foreign invader and wants to destroy them. When the immune system does enough damage. the transmission of signals from origination to receiver is disrupted, destroyed, or scrambled and the result is dysfunction, pain, or a combination of other symptoms like burning, tingling, shooting pains, etc.

Some treatments like IVIG try to flood the body with “good immune system” to overwhelm the bad immune system and get the body back on a level playing field. Prednisone suppresses the immune system and also is an anti inflammatory, which helps at the point of destruction, the nerve axon. Other treatments are various levels or chemotherapies to inhibit the immune system and slow damage, or they are pain or nerve drugs to help with the symptoms which are on the back side of the damage.

Basically, that is the deal. From there, each one of us is a little different in that way that the CIDP presents itself. Some are more sensory, some are more motor. Some have more muscular pain, some have more nerve pain. Some have little or no pain at all. Some have muscle dysfunction, some have none. Because the place where the attacks vary, the symptoms that each person presents will also vary. Therefore each patient will complain differently. That makes it hard for Dr.s to figure out what works well, because we all progress a little differently from point A to point B.

Hope this helps

Dick S

Frances,

Finally, and I promise to quit until I hear back. Each person’s attitude and actions have a great deal to do with his or her progression.

Let’s take work. I used to work 60 hours a week. Higher stress job. Needed to get the job done. 20 employees depended on me, etc. etc. etc. Budgets, payroll, bills, employees, Board of Directors, blah, blah, blah. I did my job and I did it well. Aftet getting CIDP my neuro told me to retrain and get another job. I said bull#%@*. (to myself of course) This is what I loved to do etc.etc.etc. Well, four years later, I was out. My body could not take the hours or the stress. Two years after that I was on disability. After getting on disability, I have held my own.

Moral of the story… The more I stressed my body past the point. The more I weakened myself and allowed the immune system to damage my nerves more, because I did not allow enough time to heal in between. After I got on disability, I had enough time to heal in between actions to stay level. Example.. If I cut the grass and weedeat, I need a day off to recover. If I don’t I am “a day behind” If I don’t get that rest, I am heading for a problem down the road.

Same thing with stress. The emotional and mental and chemical aspects that stress does to your body does not allow recovery and/or seems to make the CIDP worse. Ask anyone, when they are stressed, the CIDP gets worse.

So, if we take care of our bodies, not too bad stress, work, but not too much work, exercise, but not too much exercise. You get the drill. The biggest thing is state of mind. When you are happy. you are in less pain and all of your symptoms are at bay. when you are sad, everything is worse.

In this you have a choice.

Dick S

Two great posts Dick–both well worth saving.
Laurel

Has the doc tested for charcott marie tooth?

Dick S,

Your life sounds just like mine with the 60 hour work week, board of directors, and other responsibilities of running an organization. In April I started to really struggle — getting foggy, cranky and less able to process information and act decisively; by May there was a rumor that someone was going to speak to the board about my decline in performance. That gave me the kick in the pants that I needed. Fatigue is a huge problem — caused by the disease certainly but also likely attributable to the meds. And you are so right about the role of stress in fatigue. I knew if I didn’t slow down and get the rest I needed I would simply fall farther and farther behind. It was scary to fully disclose my situation to staff, but of course those closest to me knew something was wrong anyway.

So now I am in the office 3 days a week, work from home 1 day and am off 1 day. With the blessing of my board, I am putting together a management team and am training someone to take my place as acting ED when I start stem cell transplant treatment next month in Chicago. I am hoping that this will be the magic bullet that enables me to get my life back … or most of it. Sharon

Have him, no make him read this board and learn that HE IS NOT ALONE! When you first get this? You DO feel alone and that not one other person is as miserable as you are! I felt that way until I met people with other immune issues during IVIG infusions. That and reading about others on IG Living! I realized that there are many different kinds of problems and that IVIG can help ever soo many. Also to learn about the other options. There is a lot to learn. And in this whole process? You, the caretaker, are alone to many degrees as well! You have to start doing things for YOU so you can be well enough and strong enough to hold his hand when/if he want’s to FIGHT IT!
Most important for you and your husband is to learn to sort of speak ‘doctor-speak’ and be as articulate as one can be about what you do and don’t feel. Then how it affects your life!
BUT? Only HE can speak up for himself! And he better learn to do it soon.
More bluntly? There can be paralysing misery or limited functional misery. I’ll take the latter any day. I chose to get outta my misery and try [at least] to be a bit assertive or aggressive in getting help and treatment! It’s mostly worked, but it’s not always perfect. I think he can too, once he really LEARNS about ‘IT’ and what can and can’t be done. Then what’s cooking in research for the future!
If you were nearby to me? I’d visit you both and give HIM a lecture!
IF I can still speak in almost complete sentences after having: Cataracts [both eyes]; dead thyroid; cancer and CIDP? Not to mention a few ‘suspected’ other goodies? I think your husband can beat me to a pulp any time he chooses, IF he chooses!
There are times for pity parties? But they have to end and life to begin again.
PP’s are really good to have at times, but not all the time!
I hope and pray that you can get him to read this board. To pick and choose what he wants to learn and how he can learn about it!
Keep some of your strength in reserve, never know when you’re gonna need it! Hugs and hope and super good things, and SOON! You both are overdue!!!

hi

I thought I weigh in on this subject as my 21 year old son Ryan has been dealing with CIDP since Oct 2008.

Ryan has tried IVIG for 9 months did not do a thing for him, high doses of prednisone-helped a little but not enough, Plasma Pheresis which did not work at all for him. he declined through eat of these treatments.

The only treatment that has worked for Ryan has been cytoxan which is chemo therapy. he received 2000mg through an IV infusion every 3 weeks. it has been a miracle for Ryan. he went from being paralyzed to walking within a few weeks of starting treatment. he just finished 6 months of cytoxan and he has his life back. Thank you Lord. he is going back to college next month. he still has a ways to go in his recovery but he is no longer in a wheel chair full time. he is no longer getting worse. he is getting better. but like I said he has a ways to go as his right foot still has foot drop and he has to wear a afo on it.

as for the cytoxan (chemo) treatment Ryan has not had any bad side effects that we can tell. the only thing he has had to deal with was nausea but they have lots of anti nausea pills and he took them around the clock for the first 3 days after a treatment and then he was fine. Then his skin is really dry. he uses lots of lotion. but other than that none. so don’t be afraid to try cytoxan (chemo) its not as bad as people might think. the doctors will tell you about all the bad side effects cuz they have to disclose it but our oncologist told us that the dosage for CIDP isn’t even close to what they use for cancer and its the cancer patients who get the super high dose of cytoxan that will more than likely see those bad side effects. but they do have to disclose the side effects cuz everyone reacts to the cytoxan differently. some lose their hair but Ryan did not. which suprised the oncologist. at first he thought he was losing it so he shaved his hair off but it grew back. lol it was kinda funny.

well good luck I hope your hubby finds a treatment that helps. I thank God everyday for cytoxan it has been Ryan’s miracle. nothing else worked and he finally talked his neuro into do it. he is so happy.

email me if you have any questions.

Rhonda (Ryan’s mom)

Dear Francis,
What a wonderful wife you are I had to say that first. I am a wonderful mother, my daughter I don’t think, even at nearly 35, appreciates that I don’t have to be taking on this monumental problem (her) that has landed on me over the last 2 1/2 years.

While we were never given a sensory/motor diagnosis, my daughter could not walk, use her arms or hands, and after IVig, could not breath on her own. That final stage happened right at a hospital. She also could not feel a pin ***** her skin or tell the difference between hot and cold. These symptoms came over a 6 month period. She felt nothing on the initial EMG and had just a little reaction on an EMG about 16 months after Dx. The medical care has been less than good, although the hospital that kept her for 2 months went above and beyond. Once she left there they did not want anything else to do with her, I was on my own again seeking medical help. She had no insurance although eventually I was able to obtain at least Medi Cal for her.

That being said, the one thing she responded to was Plasma Exchange, which involves having a perma cath. The really effective PE is done over a 10 day period, 5 times. The perma cath is just that, permanent in her right shoulder. It’s not a pick line, but specifically for PE. She now receives PE 1 time every 3 weeks for what is called ‘maintenance’ but she has reached a plateau in recovery and we are now at a standstill. She was walking with a walker and had to have on AFO’s, then fell out of her wheelchair which is still very much a necessity, and broke her ankle in two places, so no walker again. Another huge issue is PAIN, even with ms chontin and other opioids.

To answer your questions though (just trying to demonstrate by experience that IVig does not always work and no one knows why it does nor do they know why it does not work), your husband is not getting enough Ivig. The time my daughter had it she had 5 days in a row, it took 8 hours each time, so since she was already hospitalized they did it at night. But, IT DID NOT WORK AS SHE NEARLY STOPPED BREATHING A DAY AFTER THE LAST INFUSION.

Your husband is only getting enough to keep the symptoms at bay, just barely. Not sure where you are if you are anywhere close to any of the facilities listed recently by the website, try to get him to one of those, at least for a workup. You seem to have a handle on what has been done,maybe they can get a handle on what has not been done. Another person on this Forum goes to Scripps in San Diego.

Wish I could be more help, but some docs will listen to you if you tell them you communicate with others with this ‘disorder’ and what has happened to others. The more sensitive ones will understand that they have very little scientific info to fall back on. Case studies of 38 people are not case studies at all.

Will watch for your progress. Hopefully your husband can be more proactive in getting treatment for himself. I was married to a Type 1 insulin dependent diabetic, he did not help himself at all.