Confused

General General CIDP Discussion
1

I have just visited the neurologist for the follow up appointment after 1st dose of ivig. During the ivig I developed a mild dose of meningitis which was horrific and has left me with a severe headache and sickness ever since. (finished it 2wks ago). The symptoms of cidp I have are mostly back pain and down legs, flulike feelings i.e aching muscles, stabbing pains all over. Some soreness and pins and needle sensations in my wrists, fingers, toes and feet (only since ivig) and extreme fatigue.

I have trouble standing and walking for long periods of time (I am a hairdressing lecturer) but this is mostly down to the extreme backache.

The back ache, flulike feelings and stabbing pains have eased since the ivig but I am still extremely tired all the time.

I also have trigeminal neuralgia and I am hoping to have an operation for this before Christmas. The plan then is to come off the carbamarzapine and see if the fatigue gets better and give a true reflection of which symptoms are down to the cidp.

As I will not be having any treatment for cidp until at least January my worry is that my body will undergo more damage during this time without treatment as it was my understanding that the sooner you receive treatment the longer you can stay mobile and when diagnosed my neurologist was keen to start it immediately? He has now said that as I am not that bad at the moment it is probably not worth going through the side effects of ivig and that my nerves will not undergo further damage.

As you can imagine this has really confused me, one minute it was urgent and now it can wait?

I'm not sure now why the ivig was done if the benefits that I have are due to the ivig?

I can understand why he is waiting to see if coming off the pills will help the fatigue but if the fatigue improves in the meantime could it be as a result of the ivig? When I was with him it made sense, but now I'm scared that I won't get ivig again even if it's working as I'm 'not that bad at the moment' due to having side effects.

He has mentioned treating me with steroids (he or I are keen to start those) or medication.

Does anyone know if it is possible to not have side effects of ivig next time or if I'm likely to have meningitis again?

Can anyone offer me some advice please or been in a similar position?

Can anyone shed some light on the different meds available too please?

I'm scared I will lose my mobility because I wasn't treated in time.

I do trust my neurolologist but I think as my case is different to a lot of cidp sufferers he is unsure of what the future holds for me. I hoped to come away with a plan today but since returning home I feel unsure of what's going to happen next. many thanks all, Lisa x

2

Sometimes it takes until the second dose for the ivig to have a real effect. What you may be feeling is the ivig working but not fully effective yet. Ask your dr about adjusting your dose and length of time between doses. My dr shorten my time from 4 weeks to 3 weeks and upped the dose from .4 to .5 before it had a real effect for me. It was working but not as good as now. Be patient and push your dr for help and guidance.

3

Hi.

I have cidp. It's been a week of steroids now but still couldn't feel any improvement. maybe the progression has stopped and hopefully after another week (doctor prescribes 15 days) I could be able to asses my condition whether the meds is working. Your neuro should also explain to you the difference of cidp to gbs. I hope the pdf file could you you more insight.

117-OverviewENG.pdf (1.74 MB)
4

I suspect that your meningitis was incidental - not directly due to the IVIg. I am not aware that meningitis is a possible adverse reaction to IVIg - headaches certainly are.

Treatments? Everyone has a story. The evidence in http://mycidp.blogspot.com.au/ (latest out today) indicates that IVIg has by far the best chance of getting an improvement BUT you have other problems going on as well so you have to try to find one or a combination that works best.

Best of luck and stay positive!

5

I seemed to have improvement after my 2nd and 3rd IVIG. Then my neuro said I was getting weaker after my 4th. I knew he was hesitant to start prednisone but I just started over a week ago and he hasn’t wanted me to schedule my next IVIG yet (it’s been been over a month since my last one). I can say I don’t think I’m any worse.
Hang in there and good luck!

6

You may want to find a neurologist who is more familiar with CIDP. You do not want to be the doctors first trial balloon.

You and your doctor do not need to learn about this disease together, find an expert. Good Luck...

7

I Whole-heartedly agree!! Been there and lost too much while He (the neuro) was learning!! M.G.

8

I think this is the IV my husband had.................he had a really severe headache after it..............which he was told sometimes happens. Although what you are descibing is not nice at all. Will they be giving you any more?

9

First 15 days 16mg x 3 of prednisone /day. 16th to 30th day reduced dosage to 10mg x 3 /day. Just got back from my neuro and again reduced the dosage to 5mg x 3 /day for a month.
Activities:
Starting the 16th day, I hired a physical therapist for a 3x a week sessions. Upper body conditioning (weights). Hydrotheraphy and soft massage every other day.
Supplements:
Omega 3 fish oil, vitamin D (early morning sunlight is a better alternative), Virgin coconut oil, high fibre psyllium (for bowel conditioning).
Condition update: (starting on the 20th day)
I can now use the walker more often than the wheel chair. However endurance is still a concern. Lower back pain persist when tired. leg muscles still weak but better compared a week ago (maybe reduction of prednisone dosage helped). Right leg which was "foot drop" a month ago is now responsive and can be lifted. However water retention remains (an hour in the pool helps in reducing the swelling). Sole still feels grainy when pressure is applied.

Be giving update in a month.

10

First time I had IVIG I ended up in the ER and got sick for about a month. I was tired all the time and was doing worse then I was before the IVIG. I found a new doctor after that and he cut my IVIG amount in half and so far its working slow but working . You may just need to play around with it.

11

hi, i have been having ivig now for 3 months. my treatements are every 4 weeks. i have had cidp since '04, but was only dx in 2010. i was not sure the ivig would even work. i am treating with predisone. the two really seem to be working well. i had tones of menegitis issues, and poor facility issues. ending in 2 er visists. I write about it all in my blog. http: goldengirl55 mylifeisasoapopera.blogspot.com. If the facility infuses the ivig medication at a slower rate your menegitis symptoms will not happen. Also my doctor treats me with 2 tynelol and 2 benedryl before my infusion. Then because I am there for 7 hours and the medication wears off after 3-4 hours. I am given 2 more tylenol and and iv benedryl halfway thru my infusion therapy. This really helps keep my headaches, and menegitis under control. I you want to talk you can reach me at www. ■■■■■■■■■■■■■■■■■■■■■■. I hope you check out my blog as I think it will be very helpful reading. I am battling 8 autoimmune diseases and cidp is just one of them.