Ivig
 

Hi Everyone,
I haven't been on in the past few months. I started IVIG is the spring. I started with 1 treatment a month. I think it helped, I was sick for 3-4 days after but then had a pain level of 3-4 for about a week to 10 days which is great for me. They just recently increased the treatments to twice a month. They wanted to start me on another drug too but I refused.
I am wondering if anyone else here is getting IVIG. It would be wonderful to have a connection to someone who is. I see alot of people on the MG site who get it but I have not been dx'd with that.

Actually, as some of you now, I have had a positive nerve biopsy for small fiber neuropathy. Then went to Hopkins and they said possible sjogrens. I think I have had every blood test and catscan imagineable to no avail. I have seen neuro and rheum and I am considering immunologist or genetic testing. Does anyone know of someone who is good at diagnosing. I think this is all a guessing game for them. I was just going along with the "we may never know" answer from doctors but I think I really need to know. Any suggestions?

I have begun to feel weakness in my muscles but they told me it was because I did 20 minutes on the eliptical and treadmill instead of 15 mins each. I think that answer is nuts. By the way I went to the gym because I feel like I am really losing strength in my legs. I continue to work full time but don't know how I can keep it up.

Well sorry for the long note. Just looking for some support and someone who understands.
Thanks,
hopeful:(

Thank you for the update.

We have had some people here on IVIG... but not many.

If you search "IVIG" in our search engine those posts will be listed. If you do the search on the PN forum, the search will confine to that forum only. The search bar is on the upper right of the first page.

Improvement is good. Sometimes it takes a while. Go slowly on your exercise until you feel stronger, to protect yourself from falls. You can try some isometrics in bed. I learned this in physical therapy and it helps strengthen muscles and stretch with minimal risk.
One was a modified "walking" in bed. Lying flat flex the leg so your heel drags lightly on the bed. Bring it up and back down,
10 times on each side. Doing contraction, hold to a count of ten and release of the glute and thigh muscles in a sequence also helps while lying down to move blood and lymph around.
I always flex and relax my feet every night, since most of my PN foot pain comes then.
Perhaps you could ask for a PT referral? I also had some exercises PT supervised that strengthened lateral movements to help with balance.

example:
http://voices.yahoo.com/isometric-ex...s-1918762.html

Ivig
 

You may want to contact the Nueropathy Foundation. The founder has had his condition reversed from this. I contacted him a couple of years ago and that seems to be their focus. he told me he went from not being able to walk to I guess full recovery. Of course he also said that after much testing they finally found some rare condition that was not easily found. I don't remember the details. They also assist in getting insurrance companies to pay for those expensive treatments.

Thaqnk you. I will give them a try. I appreciate the information. hopeful:)

Thanks for the suggestions I am going to try the isometrics and I think I will ask my Rheumo for PT referral. I also have a question for you. I remember you suggested awhile back using grape seed tablets. At the time I had started the R lipoic acid and wanted to do one thing at a time. I brought the grape seed but never started it. Can you tell me what it is used for I can't remember.
Hopeful:)

The grapeseed extract is an antioxidant free radical scavenger.

http://en.wikipedia.org/wiki/Grape_seed_extract

It seems to dampen allergic reactions for both my hubby and I, during allergy season. Some people on RSD forum found it helpful over the years to prevent RSD spread in the body.

This link gives new information about grapeseed extract's effects on liver metabolism of drugs:
http://www.webmd.com/vitamins-supple...%20%28GRAPE%29

I don't take it all the time, only when allergic symptoms are bothersome. Neither of us have ever had side effects from it.

I think getting some professional help from PT would be very beneficial for you. They can teach you stretching safely, and exercises for balance, and strengthening muscles in just a few short visits.

I am receiving IVIG treatments every 3 weeks for CIDP. Which is a demyelinating polyneuropathy. The major issue for me is the relentless tireness I feel at doing the smallest of chores. It seems to help some. I've had this for 3 years before just recently being diagnosed with it. They thought I had CRPS or RSD but my EMG showed slow nerve conduction. I have an appointment with the Mayo clinic. I don't know if this sounds anything like you have or not.

Wish you the best of luck

Hi Hopeful

I also get IVIG every three weeks although I am dipping at two and I am back to square one the third week,on going fight with my neuro, my pain level is also about a 4 which is great and takes the cramps away completely(heaven) .

You mentioned Sjogrens have you had bloods, shirmer test and lip biopsy done? I have had bloods and schirmer done which came back negative although lip biopsy can be positive I get mine done next week.

I see you are taking Mrs D's advice on slowing down and taking things at a gentler pace, I have weakness in my legs and arms with added osteoarthritis I had to give up my job as it was to phyisical for me.

Anyone with PN knows exactly what you are going through so you are not alone, hope you get some answers soon keep us posted how you go.......Marie

Hopeful, you might want to do some mild resistance machines for your legs. The leg presses, with slow mild weights, will build muscle faster than the aerobic machines, which are more for cardio. Don't put too much weight to start, and do only 5 or so reps to start. Have someone help you to begin if possible, who understands the leg presses. You lie on your back and push a plate and this is like squats but easier.

If you have some whey protein in a shake each day you do your gym, you might see some improvement faster.
The branched chain amino acids in the whey really help build lean muscle.

Hi Marie

I also get ivig every 3 weeks for small fiber neuronopathy/ganglionopathy.

Hi Hopeful,

I will be starting IVIG next week due to a positive hit on paraneoplastic panel and review of my case by a neuro at the Mayo clinic who specializes in Immunology. I will let you know how it goes.

I haven't been on here for quite a while. Originally thought I had only PN but since diagnosed with CIDP. Prednisone initially was encouraging but every time I tried to wean off it I regressed. Starting IVIG on Monday. I hope I respond favorably to it. I will let everyone know how it goes.

Hi R182,
Good luck on Monday. I hope it goes well for you. Keep me posted. I pray it helps you. Can you tell me how you where diagnosed with CIDP?
hopeful:)

Hi Hopeful,

I am having a lot of trouble getting IVIG approved by the insurance due to incompetent office staff. Hopefully I will start IVIG this week or next week.
As soon as I know something I will let you know.

--nervous1

CIDP diagnosis
 

My GP and Neurologist, after basic initial blood testing, thought it was PN. After about 8 months I noticed a loss of strength in my lower legs. Since I ride both road bikes and mountain bikes, I am very aware of my fitness level and how fast I ride up hills, etc. Long story, shortened, after my GP and Neurologist were a little stumped, and I requested further testing, I went to another specialist who did an EMG, thorough manual strength test in all muscle groups, spinal tap, and more specific blood tests. I also had an MRI on my lower back.

Results came back with an elevated protein level in CSF, and along with the strength tests (being more weak in certain areas and lacking reflexes) the doctor was pretty sure it was CIDP. I say pretty sure because, as you probably know, these things can be very tricky to diagnose. There are a lot more autoimmune conditions than I realized, which doesn't make me feel very good nor do I wish on anyone.

So, since I can't stay on a high dose of prednisone (60mg daily) we are trying the IVIG. We will evaluate and go from there. I did listen to a doctor from John Hopkins and he diagnosed in exactly the same way as my specialist. Apparently, there also is a doctor at California Pacific Medical Center in SF that has done quite a bit of research on CIDP and similar autoimmune conditions so that is a place you might look into. I can probably get his name if you are interested.

Rich

Hi Rich, I live in PA so I really couldn't afford to go out to California. I did look up CIDP and said to my husband the symptoms really do seem to be what I have. My neuro has told me several times though that my reflects are somewhat hyper. I don't know if that would rule out CIDP. What type of specialist gave you the dx?
I agree with you I would not wish this on anyone. I also was shock to learn how many autoimmune disease there actually are.
Thanks,
Kim:)

Hi,
I had to try for almost two years to get it approved. Be sure to request that your doctor call the insurance company and speak with them directly if they deny it again. From what I understand it depends on what they put down as a diagnose. Your doctor can fight them to get it for you. Good Luck!
hopeful

Hi Kim:
My doctor is a neurologist who specializes in these types of disorders. It has been 9 days since my first of 4 IVIG treatments, which were 4 days in a row. I was told that it could take 1 or 2 weeks to notice a difference. So far, I am not really feeling a difference, but I know that it takes time for the nerves to regenerate if, in fact, my system is not still attacking itself.

I don't know if the fact that your reflexes are good, it would rule out CIDP or not. I don't think these autoimmune disorders are cookie-cutter type dx's. There are just too many unknowns and individual variations. We kind of become experiments to see what medications might work as it relates to our individual symptoms. I will continue to seek alternatives which might be beneficial but not knowing a root cause makes it very difficult. Well, we all have our issues and hopefully one day we will have more answers!

don't expect ivig to "kick in" within 1-2 weeks after 1st infusion....it may take longer to "notice" any difference, so be patient even though that's hard to do...I know, I've been there...if ivig will "work" for you, you should be able to tell within 120 days

had my 200gm loading dose (50gm daily x 4 days) in April 2012

50gm "maintenance dose" 3 weeks later....another 50gm 3 weeks after that

it was only AFTER my 6th dose (and 6 weeks after 1st) that I noticed any significant difference

now 15 infusions total later, my sensory "numbness" has decreased by about 50% (subjective) and my grip strength as measured by a hand dynamometer has improved (objective)

I have the CIDP/Madsam variant...aka lewis-sumner syndrome....affects my hands more than my legs...knocking on wood that I will continue to improve

prayers to all who have recently started on ivig (or will be) that it will work for you as well

Hi, I wonder why some people get a loading dose of IVIG. I did not. I started with 1/month. I agree that we become experiments. (Not to down doctors most do the best they can) It is really difficult to find alternative treatments when you don't know the underlying cause of you SFN.

I thought protocol was to do a loading dose of 3-5 days. This is what I had (years ago) and others I've talked to both then and recently. It takes a while to be effective and I would guess not doing a loading dose would mean it would take even longer. I would ask your doctor next time you see him, just to get his position on why he didn't do it.

enbloc....I agree with you

ivig dosing protocol (at least with CIDP) is 2gm/kg loading dose over 3-5 days, then 0.5gm-1gm/kg every 3-4 weeks thereafter

hopeful....dunno why your neuro did not give you an initial loading dose to start with...maybe your sfn dx?

I went thru 3 years of it, and frankly, it didn't change the course of my disease and I got extremely bad headaches from it. I started to freak when my kidney function started to deteriorate. I nixed it. I don't think they know enough about how the body works. I am done being a guinea pig. I am hoping it cleaned my brain out tho, so I don't get Alzheimers.

general question to anyone

is ivig FDA approved for "pure" small fiber neuropathy?

This link has FDA approved uses, and off label uses:

http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

In this link is a short statement about using IVIG to prevent Alzheimer's progression...a new study published in 2012.

I am going to ask my doctor when I see him again. It seems to me that everyone I have spoken to said they had a loading dose. I was wondering if it had anything to do with insurance. I'll find out.:)

Given the way my head felt after I had an infusion, it probably cleaned my clock pretty well.

I'm in UK and started IVIG nearly a year ago and I got started with loading dose over 5 days.