Rate of Response to IVIG

General General CIDP Discussion
1

Hey all,

I was diagnosed with CIDP at the beginning of September after a few months of increasing symptoms. Luckily I saw a doctor with a lot of background with GBS/CIDP and got an immediate diagnosis after only a few weeks. I was immediately prescribed a monthly dose of IVIG and 3x week physical therapy.

For the moment, it seems like the symptoms have stopped getting worse, but I can't say for sure that they've gotten better; I still walk with a cane (albiet a cool one - replica of the one from Dr. House), and numbness and tingling remain with a serious amount of muscle atrophy. I'm unable to lift my feet (dropfoot) and after a few blocks of walking my muscles become very weak.

I was wondering what people's experience has been with IVIG treatment in terms of how fast they responded. The only scientific papers I've read on the subject measure responsiveness to CIDP in the hands, not the feet/legs. I feel like if I had CIDP in my hands I would have noticed the numbness and atrophy much earlier and wouldn't have passed it off as simple muscle weakness for as long as I did.

So... who's primary treatment method has been IVIG, and how fast (if at all) did you respond? Did adding other types of drugs, such as immuno-suppressants, make things better or worse?

Scott

2

Well I've had CIDP since 2005 and never noticed the atrophy in my left arm and hand until two years ago. The IVIG hasn't made me any better, but the good part is I haven't gotten worse. The muscles in my left hand have started to recover and hopefully with continuing physiotherapy, I'll be able to play my guitar in a few months. Also I haven't fallen in five months, my doctor calls this stable, I call it lucky that I was diagnosed before I ended up in a wheel chair. For myself I'm just thankful I retired when I did. Gary

3

Hi Scott- I was diagnosed at the end of June and didn’t notice much change after my IVIG loading dose. After the second 2 day round the neuro said he saw some improvement but I couldn’t really tell. After a total of 4 treatments my neuro said I wasn’t improving so we added prednisone about 7 weeks ago. He waited for my 5th round of ivig so he could see how I was responding to the prednisone. I definitely gained a lot of strength from the prednisone and began tapering the dose down now due to potential side effects. I have been fortunate and have not suffered any bad side effects yet from the prednisone. I’ll be scheduling another round of ivig before the holidays.
I also had physical therapy when I started on steroids which really seemed to help with strength and a little bit with balance though my balance is still pretty bad.
I can say I didn’t seem to get worse with IVIG but alone didn’t feel like I was improving. I’m drealizing and accepting the fact that this will take quite a long time to improve and that I will now have a new normal life where things take just a little longer to do and a little more energy.
Everyone’s different though and there are people who have done well on IVIG.
Good luck and keep us posted.
P.S. I love the house reference!

4

My son has 2 days of IVIG every 3 weeks which immediately disappears all his symptoms. They return 2 week later and he has them for a week before his next treatment.

His symptoms however are in his hands arms and shoulders. he becomes gradually weaker until he cant lift his arms up. he also has stiffness aching and tingling.

He has tried steroids in addition to IVIG but they made no difference - if fact added the shakes to his symptom list.

The good news is that we have been able to reduce the number of days every 3 weeks from four to two with the same benefits.

Hope this is helpful,

Brenda

5

I HAVE HAD A SIMILAR EXPERIENCE ONCE I FOUND THE NEURO THAT IDENTIFIED THE PROBLEM....BEEN ON IVIG NOW SINCE LATE AUGUST.....ROLLER-COASTER RESULTS....HE SAYS 2-3 YEAR TREATMENT.......HIGHPOCKETS

6

I also was lucky to have a neurologist who was familiar with GBS/CIDP. He initially diagnosed me with GBS (very reasonable) and gave me IVIG immediately. It only took a few days for me to get dramatically better, and I thought I was done with it. He did warn me at the time, though, that there was a slight chance I would have a form that was chronic, and that if I had further weakness I should come back.

Several months later I had a relapse, and then he changed the diagnosis to CIDP. He tried me on prednisone at that point, and it did nothing for me. Eventually, I wound up on IVIG every three weeks. At first, I would be much better after each IVIG session, then gradually get worse. By the time my three weeks were up, I was really ready for my next IVIG! At that point, he also started me on Imuran, an immune suppressant, but warned me that it would take months for it to have an effect.

As time went on, I felt myself getting better, and was able to stretch out the interval between IVIG to four weeks, then five, then six, and so on. My last interval was 12 weeks. Don't know if this is the Imuran finally taking effect, or just the disease 'burning itself out,' as they say. Anyway, I am about to take the big leap, and try to get off IVIG entirely. I'm kinda nervous about this, but eager to give it a try. My doctor is very good about getting me in quickly if I need it, so it is not too big of a risk.

So, I guess the answer for me is that IVIG worked very quickly, but that may be because I was fortunate to get a quick diagnosis and quick treatment.

I should also comment that I have been going to a gym three days a week, for about a year. I make careful notes of everything I am able to do. Progress has been very slow, but I am gradually improving my abilities to do exercise, and regaining some of my muscle tone, which was just about gone after a year of being almost totally inactive. I am convinced that this is an important part of recovery. It is very difficult and frustrating because I am still much weaker than I was previously, but gratifying to see some improvement, even if it is slow.

Good luck!
Bill

7

I would also like to reinforce the idea that everyone is different. I was diagnosed with CIDP 5 years ago and was started immediately with IVIG. My symptoms were principally leg weakness. Improvement was immediate; my legs got stronger after the first infusion. I have continued with IVIG over the past five years. I typically get better after each infusion and then deteriorate slightly before the next. I still function reasonably well, although the time between infusions has been reduced from five weeks two weeks.

8

I've had CIDP for about 5 years. I was told that the IVIG would help about 90%. I went into NY Cornell-Weill and started with 2 treatments per week, back again for 10 more treatments and had to have another 5 more treatments. When I confronted the doctor he backstepped saying not 90%, maybe 60%. Nothing has changed. After all of the treatments and a different Neurologist I found out if it's Genetic nothing can be done. I now have to go for a blood test to see if that's the case. As per the nurses at the hospital, everyone is differrent. However, they said most see some progress 3 to 6 months after. I would recommend getting the blood work done that way you have an answer.

9

Your results sound similar to mine, except that my time between infusions has gradually increased, not decreased. As I said, my neurologist started me on Imuran, and maybe that is the reason. The effect of Imuran is so slow, that it is hard to tell if it is doing anything, so you have to be really patient. Have you talked to your doctor about an immune suppressant?

roserider said:

I would also like to reinforce the idea that everyone is different. I was diagnosed with CIDP 5 years ago and was started immediately with IVIG. My symptoms were principally leg weakness. Improvement was immediate; my legs got stronger after the first infusion. I have continued with IVIG over the past five years. I typically get better after each infusion and then deteriorate slightly before the next. I still function reasonably well, although the time between infusions has been reduced from five weeks two weeks.
10

Hi Donna,

I'm going to NY Cornell-Weill as well (Dr. Nealon). I don't have any family history of CIDP or other auto-immune diseases, so I hadn't considered a blood test as a necessary option. However, I'll ask my doctor about it the next time I go for my infusion.

Scott

Donna45 said:

I've had CIDP for about 5 years. I was told that the IVIG would help about 90%. I went into NY Cornell-Weill and started with 2 treatments per week, back again for 10 more treatments and had to have another 5 more treatments. When I confronted the doctor he backstepped saying not 90%, maybe 60%. Nothing has changed. After all of the treatments and a different Neurologist I found out if it's Genetic nothing can be done. I now have to go for a blood test to see if that's the case. As per the nurses at the hospital, everyone is differrent. However, they said most see some progress 3 to 6 months after. I would recommend getting the blood work done that way you have an answer.

11

Scott, I was told to get that blood test because I did not respond to the IVIG infusions. The best time for those infusions to be administered is 18 months from the onset of symptoms. My systems were on and off for 3 years before I even went to a doctor or was given the infusions. Who knows had I went to see a doctor and had infusions given right away results would have been different. Once I get the blood work I'll know for sure. My doctor in NY was/is Dr. Norman Latov.

12

I was diagnosed with GBS in Feb this year - spent 5 weeks in hospital doing physical rehab therapy. Had a 5 night IVIG treatment that seemed to get me up and about quite well.

I then went home and had 6 weeks in-home rehab therapy followed by 6 weeks out patient therapy. Therapist then said - you know what you need to do to keep getting stronger and discharged me. I have been carrtying a pedometer ever since and spend 20 minutes on the treadmill plus 35 on my recumbant trainer.

Neurologist says I now have CIDP.

I am working and I am able to function fairly well as long as I take my neurontin every 6 hours. I have my good days and my bad -- but I just keep on keepin' on -- I refuse to consider the alternative.

I have managed to take a vacation to Mazatlan and will attend the office Holiday party on Saturday night -- I think I will drink, eat, and converse. I don't think I will dance.

13

Last October when the results of my EMG indicates that I have CIDP which my neuro concurred, I ask my doctor about IVIG but based on his experience from some of his patients with CIDP/GBS, results were not so promising to some. Anyway I was given the prednisone treatment and it did stop the progression in a couple of weeks. After tapering the dose down to 30% for the next 2 weeks, I felt quite an improvement. Before I started treatment. I couldn't walk, started to have bowel and bladder problems, and not to mention depression. On the 3rd week I could stand and walk using a walker but still get tired so easily. I started Physiotherapy and regularly exercise in the swimming pool (helps a lot shrinking my swollen foot(water retention) due to prednisone's side effect. At the end of the month. my prednisone was again tapered down to 50%. I am now practicing walking using a cane. It will be the end of 2 months tomorrow and once again a visit to my doctor. I'm sure he'll taper down my prednisone. I took medical cannabis to ease my pain during the first month and it works better than pharmaceutical anti-inflammatory drugs.