CIP/CIDP symptoms worsening from IVIG
June 21, 2020 at 9:46 am
Hi, Can CIDP or CIP be worsening from IVIG? I am new to IVIG. I have been diagnosed with CIDP which is still mild, mainly nerve pain, partial numbness in legs, feet and arms, muscle twitching, increasing weakness in all limbs, exhaustion after mild exercise. I had it for about 2 years, with symptoms steadily increasing. After 2 years I was diagnosed with CIDP, very low elevated protein in spinal fluid.
After the second day of my first 5 IVIG loading infusions my symptoms started to get worse and still continue to get worse after 3 weeks. More widespread than before and getting worse by the day. Muscle twitching and slightly more difficulties to coordinate movement of right arm and right leg. I never had it go worse so intense and so quick ever before until the second day after I started treatment. The specialist says he has never heard of a neuropathy getting worse from IVIG. I have no idea what is going on and neither does the Neurologist. Has anybody else heard of worsening of CIDP or general Peripheral Neuropathy upon starting IVIG treatment?
I got 32 Grams of Intragam 10/ a day for 5 days in a row, so about 160gr all together (83kg body weight) as a loading and am supposed to have the next dose in a few days. No serious side effects during infusion, small rash was treated with Cortison and disappeared in minutes.
I would like to hear from other people if it is common or even possible for symptoms to get worse immediately after starting treatment. I am sure that whatever it is, it was triggered by the IVIG and it is quite intense compared to what I had so far. Not sure if that is part of a healing process or what is going on.
I would really appreciate to hear about your experience!
June 21, 2020 at 4:12 pm
Sorry the link I posted doesn’t take you straight to the info so copied it.
From a reply by Jim-LA a moderator to this site.
I have no doubt that a few have gotten relief from CIDP just from IVIg or PE, but I think that would be the exception.
CIDP is an Autoimmune condition whereby our systems make cells to attack invading organisms. Each of us has had encounters with foreign antigens over the years and have built up defenses against them. These experiences make all of our Autoimmune systems a bit different. As a result of CIDP and related diseases, some of us have ended up with “T” cells that don’t properly recognize “self”. A discussion of the cell types that may be involved is here:
New- CIPD and Central Nerves/ Cranial
Another discussion thread which addresses key treatment options and how they might work for some of us can be found here:
Your top signs that your CIDP is coming back/getting worse
Please look into treatment with Rituximab to help rid yourself of the chronic form of CIDP, it has worked for me. The threads linked in the following discussion may be worth your time to read:
June 21, 2020 at 4:15 pm
July 13, 2020 at 6:52 am
Due to all of my experience and what I have read throught the years, the answer is a clear NO.
It is possible, that you feel more exhausted after the treatment – yes. This is because of the process which has been triggered in your immunesystem.
CIDP has no specific progress. It might be, that the “boost” of the sympthoms, just overlapped the treatment. The success of the treatment should be noticeable from the 5th day on.
One more experience I’d like to share, is the efficiency of the IVIG “makes”.
I know a lot of people, which got “KIOVIG” and don’t notice any success from the therapy but a lot of side effects and, when compared to people, which got treated with “PRIVIGEN”.
July 16, 2020 at 7:53 am
Thanks to everybody for your replies!
I now read a number of the other posts and yes have not come across another story of anybody complaining about worsening symptoms from IVIG.
I am still very convinced though that my “symptoms” have been getting worse from he second day after the start of IVIG and now about 7 weeks after my last treatment I find that progression of symptoms has been slowing down for the last 2 weeks which is in line with the IVIG slowly wearing off. This brings me closer to the state where I was before starting IVIG but overall worse, and certainly no sign of improvement whatsoever.
Sometimes when I get a flu my neuropathy symptoms get worse and nerves hurt a lot and it feels like with every infection I am degrading a bit further. IVIG so far felt like I had one very strong huge long flu infection.
I mentioned Rituximab to my Neurologist and he said he cannot describe it to me and it would not be the right medication but recommended Prednisone.
I suggested plasma exchange but he was not ok with that either and wanted to try the Prednisone first.
I guess it will be a trial and error scenario….
August 18, 2020 at 8:15 am
I started Prednisone a bit over 2 weeks ago with 50mg/day.
After 10 hours I started feeling better than I felt in a long time.
Steady gradual improvements of most of symptom over the following week.
Pain reduced by 50%
Muscle twitching reduced by 50%
Energy level up by 200%
Impairment in movement and loss of sensation (both minor at this stage) almost unchanged.
It feels the inflammation in my spine and whole body has stopped but so far no healing has commenced. Inflammation was my my main complaint every time I went to see a neurologist the last two years but nobody seemed to take me serious enough to prescribe Prednisone.
This highlights what others on this forum already mentioned, it is vital to find a specialist with the right experience.
I shall update when I know more.
August 18, 2020 at 10:22 am
That’s good news! Now, are you also going to be taking an immunosuppressant drug like Cellcept so you don’t have to stay on the Prednisone forever? That is key. Prednisone is great, but our bodies cannot take it for a very long term. I took high dosage for 6 months. Also keep in mind that although you are feeling relief now, you may feel not feel perfect every day. Your body will be trying to heal itself and that will be likely 6 months. Based on your description, you unfortunately progressed further into the disease than me. Hopefully, you can get a good outcome.
My Stats, 200 lbs, 6’1″
80 mg prednisone 2 weeks
70 2 weeks
60 2 weeks
100 4 weeks, 60 seemed to little at the time.
90 2 weeks
80 2 weeks
70 2 weeks
60 2 weeks
was feeling much better
50, 40, 30, 20, 15, 10, 5 all about a week or so.
6 months total, take Cellcept twice a day. Never did IVIG. Gained 25 lbs. Once I stopped Prednisone, I started working out again about 2 months later. I was on the treadmill for the first time a month after that.
Best of luck!
August 19, 2020 at 6:43 pm
Thank you David!
It is very good to hear your story and it helps me understand the whole situation much better.
I have also read your story here:
I learn the following:
You seem to have taken an active role in your treatment and not only relied on your doctor.
Ultimately this lead to your recovery.
It seems important to find the right Dr. who believes and supports a patient with his suggestions.
It is good for CIDP sufferers to read about other peoples stories since it tells us more than our doctors tell us.
It is inspiring to hear that you can work out again and you seem to be getting back into your old shape.
For myself I cannot recommend to go back to physical exercise too early since it has caused relapses for me on a number of occasions.
Before the start of my CIDP I was about 55 and working out 4 hours a day, cardio and weights. This all stopped from one day to the next when I did not have the energy anymore.
I had buzzing and twitching muscles in my left leg with minor coordination issues on he left side and was diagnosed with peripheral neuropathy, also had nerve conduction test done showing some damage. I stopped drinking alcohol, started eating less carbs and took “Piracetam” and vitamin B. For 6 months was almost symptom free until I felt so good and went back to the gym. After one week I felt the progression of the neuropathy setting in again.
I had to stop all exercising or sports activity now almost 3 years ago.
Ever since, when I feel really good and start doing more physical work the neuropathy now diagnosed as CIDP is flaring up badly.
Someone getting back to his old routines is blessed however, one must individually find his own limits.
I would also throw this question out there:
How are extreme physical exercise or burnouts related to the occurrence or relapses of CIDP???
I have read about anecdotal evidence that it could be related in some cases.
August 27, 2020 at 9:21 am
Hi. I stumbled across your post trying to find anyone who felt symptoms were worsening on IVIG. I’ve had the same/similar experience. I began treatment on IVIG for a slightly tingling and slightly weak arm. Those were my symptoms for 8 years prior to getting IVIG. My symptoms never worsened during that 8 years. After I started IVIG I began noticing I lost function of my arm a few days before treatment, continuing to days after. By the 4th – 5th day I would go back to my before IVIG state. Then again a few days before treatment the process repeated over. After months of this happening I voiced my concerns to neurologist. He upped my treatment cycle. However the same thing happenig still. Few days before treatment losing use of my arm continuing to days after. I had to miss a treatment once due to surgery and began falling 8 days out! If you remember I mentioned in the beginning I only had a mild issue with hand/arm for 8 years! I believe the IVIG has caused something to flare and worsen my symptoms.
August 29, 2020 at 8:21 am
You say you lost function of your arm a few days before treatment.
If this is correct then I believe it is unlikely that it was caused by IVIG.
I read comments from other people that their symptoms start to worsen a few days before the next IVIG treatment is due because the effect is slowly wearing off.
It would then be the standard procedure to reduce the time in between treatments.
Please tell us more about why you started treatment only after 8 years.
It looks like your symptoms have worsened and you have then been prescribed IVIG?
What other events can you remember in the weeks or months before your symptoms worsened?
Any changes in your lifestyle, eating, exercise or other habits?
What other medications have you tried now and during the last 8 years?
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