IVIG for Nerve Pain

[malew/sjogrens]

Hello, I have been experiencing a nerve pain flare since March of this year. It has progressively gotten worse. We have tried Prednisone and a 1g IV of methylprednisolone. This has not worked. I am on an increased dose of CellCept. Rheumatologist says that the nerve pain cannot be slowed down if we wait too long for aggressive treatment. He says that best results for treatment are usually within the first two years of diagnosis of Sjogren's. I am right at two years now. I have an appointment for IVIG on 11/1 which is a 5 to 6 hour IV. If this does not help with the nerve pain then my Rheumy wants to try Rituxan. he wanted to do Rituxan now, but said we can see if the IVIG works first. My nerve pain is everywhere: feet, legs, hands, arams, face and head. I can't feel bottom of my toes and fingers. My chin and lips burn and go numb at times (especially after eating). EMG, nerve conduction tests and MRIs all negative. Neurologist and Rheumy say it is Sjogren's sensory neuropathy. Nerve pain in head and face is Cranial neuropathy. We did a small fiber neuropathy biopsy in 10/2009, and that was negative. neuro does not feel it is necessary to do another one since I hve been through so many tests. Rheumy said that IVIG has mixed results and that it is only effective in about 1 out of every 5 patients. He said that the most effective drug to help slow progression of Sjogren's is Rituxan. Rheumy said if I wait too long that the nerve damage and pain will be permanent and that the drugs will  not work.

Has anyone had any luck with IVIG for nerve pain? What has worked for you for nerve pain?

Here is information on IVIG from the Sjogren's web site:

Q. I have heard some patients have started IVIG therapy for their Sj?gren?s syndrome. What is this?

A. Intravenous immune globulin (IVIG) is an immunosuppressant agent, a type of antibody preparation, made from purified serum of normal blood donors. It is currently FDA approved for treatment of many different disorders including Kawasaki disease, common variable immunodeficiency syndrome, B cell chronic lymphocytic leukemia, and idiopathic thrombocytopenic purpura. It is also used in bone marrow transplant recipients to prevent certain complications. Additionally, it appears to be useful for the treatment of many other immune-mediated diseases including Sj?gren?s syndrome. In Sj?gren?s syndrome patients, IVIG is most often used to treat painful peripheral neuropathy (nerve damage in the legs due to inflammation). IVIG therapy is typically administered over 3-4 days once monthly for several months and usually well tolerated. However, as with any treatment, side effects may occur and include headaches, flushing, dizziness, joint or muscle pain, allergic reactions and, in rare cases, kidney failure. Patients with a deficiency of an antibody called IgA (can be tested in blood) are particularly susceptible to side effects.

[rnathans]

I do not suffer from nerve pain but rather I have a motor neuropathy which causes muscle weakness, predominantly in my quad muscles. IVIG does seem to be slowing the progression. I was previously on IV steroids and whereas thT helped my overall energy level it did not seem to impact my neuropathy.

I hope the IVIG works for you. Keep us posted.

[Still in the hunt]

My nerve pain is to the point where I want to rip my skin off,, I was on IVIG andhad rituxin,, when I told them I thought it was working,, they stopped it,, I;m to the point where my arms legs actually whole body just burns,, guts have stopped working but I am noot getting treated for any of this,, Neuro said since we arent seeing any improvement,, no more IVIG,, so I have no idea what I;m going to do now,, I will tell you this,, I hope they can slow yours down,, mines to far gone, they screwed around to long ,, I have proven small fiber neuropathy,, also like you,, some cranaial nerve involvement at times,,
  Do your hands burn like you were outside in very cold weather without gloves and come into the heat and they burn when they start to warm up,, thats what mine arelike 24/7,, legs that cant tolerate any kind of breeze on them,, or sometimes just touching them hurts,, that scrungy thing my wife uses in the shower,, I tire that once,, it felt like a grinder on my skin,, I dont know where all this is heading for me,, but I hope you have better luck,, sounds like you have a rheummy thats taking action, I tolerated both IVIG and rituxin pretty good,, had a small reaction to rituxin,, they had to stop the infusion when I started to get hives and swell,, steroids stopped it,, goodluck

[malew/sjogrens]

Thanks for your responses. Still in the Hunt, are you currently working? My Rheumy told me to go on three month leave from work so we can get this flare calmed down. If the nerve pain does not go away, I honestly do not know how I can work with the chronic pain, depression and all of the side effects from the medicines. My hands and legs burn but are not sensitive to breezes or touch. My face however burns after take a shower or shave.

[irish]

I have been on IVIG for starting 6 years this November. I get 80 grams of Privigen once a month and it takes about 5-6 hours to infuse. I take it for myasthenia gravis(neurological autoimmune disease causing intermittant weakness) but it also helps some of the other issues that I have dealt with over the years. I have not found it to be of any help with the dryness although I have been on it so long that it may, indeed, be slowly that down.

I would not be afraid to try that IVIG and see how it goes. I don't know that one IVIG infusion will do the trick though. Some people get them for several days in a row when they are a one time thing.

When you get the IVIG be sure to drink plenty of fluids the 2 days before, day of and 2 days after the infusion. This is the best way to help prevent all the side effects, it, headache, etc. If we don't drink enough the high protein in the IVIG can pull the fluid out of the spinal cord causing the headaches/aseptic meningitis.

I would think that the Rituxin in a "must" to stop that nerve damage. I don't know if they do the IVIG every month or so when a person is on the Rituxin. Talk to the doc about the specifics of his plan. I have heard some good results neuropathy wise from the Rituxin. Remember that everyone reacts differently to these drugs and everyone has a different tolerance concerning what is a "horrible" side effect. Depends on the person. Good luck. Irish

P.S. Take the 3 months off if you can do it. EVen a couple of weeks with the family leave act cause you will probably feel like you have been hit by a truck with these treatments--need to rest and get over the drugs and the flares.

[malew/sjogrens]

Thanks for the advice Irish.

[soycoffee]

I have had one round of IVIg that worked very well, about six years ago. I held my own for about three years. The first round was in the hospital for an overnight stay, with the dose separated by a night, if I recall correctly. No bad effects; I felt very good after the first infusion of the overnight split into two doses, and continued to feel great with the second half of the IVIg infusion.

My neuropathy improved; my use of Neurontin/gabapentin decreased by half, from 3600 mg/day (max) to 1800 mg /day for about three years. Then the use of Neurontin/gabapentin started climbing, and again I got to 3600 mg/day, legs wooden, arms getting affected.

At that point, 1 1/2 years ago, I faced another round/rounds of IVIg, in my doctor's office (which would be grim -- an inner room, no window, a couple of days again). I had just learned of an alternate treatment for neuropathy, primarily with Methyl b12 sublinguals. I started that, and the effect was almost as dramatic as IVIg.

It is a slow start up, over a week, and then working up to a very high dose -- the dose that removed the symptoms. The pain left, my legs were no longer sticks of wood, I didn't fall anymore.

I don't know how to convince a rheumy; it was actually my neurologist, who specializes in neuropathies, who mentioned sublingual b12, but he hadn't made the distinction to use methyl b12 rather than cyano b12, the reigning form.

Starting methyl b12 initially brings on symptoms, so it is a slow gradual startup, with 1/2 or 1/4 tablets taken sublingually. Best brand is Jarrow methyl b12, best source is iHerb.com, use the SIG531 code and get $5 off the first order.

Some medical support: hospitals do use methyl b12 -- or hydroxocobalamin -- injections (as I understood the nurse who told me this) with patients who have cancer, and need b12 because of gastric bypass. That's a long way away from rheumatology, conceptually.

---
Go for the IVIg, now, since it's all set up. I think it will work just fine! Then get your blood level of b12 tested, then start sublingual methyl b12. When you do, give it about a month to see results, as you increase the amount of b12 over a the month -- gradually. There is a book, "Could it be B12" that is well-researched, but overly insistent on the "B12 deficiency" hypothesis, and covers many problems, not just neuropathies.

Malew/Sjogrens, I do know the pain of neuropathy, though not to the extent you describe. I hope and believe your treatment will be effective, guided by your doctor. I offer the alternative of methyl b12 because it worked for me and many others -- and so did IVIg. I hope you have the best possible outcome.

All the best,
SoyCoffee

[gurs]

I have all these symptoms too...its amazing isnt it on how many of us have these CNS issues with the SS....yeah right, just dry eyes and mouth!!!! wish they would do more  research etc and maybe they would find out just how severe and debilitating Sjogrens really is.
All my nerve testing, MRI's, also come back fine, yet I have all the MS symtpoms too...

I tried IVIG a few times and I had bad reactions to it...didnt seem to help, but I never tried different manufacturers, etc. I also have
Low Immuno G & M, and hardly no t-cells, so maybe it helped with that? My doc wanted to try another form of IVIG, but Im just too scared
of the reactions. Ive also had Rituxan a few times and its very hard on the body. The most important thing that Ive learned is on no matter what type of Infusion you try, have the drip done very SLOW.....I mean SLOW....it makes a HUGE difference in the reactions you will  have.
A usual infusion time for example is 5 hours for Rituxan, I made mine go 9 hours...sure, it was a long day, but not like I had any plans anyways?
As soon as they would speed the infusion up, I felt extremely ill and noticed more side effects after the infusion..this goes for IVIG too. Just have your orders written for the time doubled..if that makes sense. Tell your doc about this.

Good luck though. I guess I would try the IVIG first, and see how you feel? then, maybe try the Rituxan?

Gursie

[malew/sjogrens]

Thanks Soycoffee and GURS. I found out today that it is three infusions every 4 weeks. So 11/1, 11/2, and 11/3 at 5-6 hours each time. Should I see any improvement in my nerve pain after the third infusion or will it take more than the three to see any improvement? My Rheumy is saying that if no improvement, we move onto the Rituxan.

[gurs]

I think each person is different...you may not feel any changes right away, or at all. When you get your infusions, remember, if you start
feeling ill, have them slow it down...its amazing how much better you will feel.

Gursie

[Still in the hunt]

Get the IVIG,, see what it does,, now as for Rituxin, I have had it as I said before,, just be warned this is heavy duty stuff and will smash your immune system, fortunately witht eh IVIG your immune system levels will increase and hopefully offset any infections that might occur from the rituxin,
  I just found out today that my new (conversion) plan will not cover IVIG treatments,, and I do know my rheumy wants to do it again,, so it looks like I am not going to be getting any better treatment other thne tylenol

[soycoffee]

Thanks Soycoffee and GURS. I found out today that it is three infusions every 4 weeks. So 11/1, 11/2, and 11/3 at 5-6 hours each time. Should I see any improvement in my nerve pain after the third infusion or will it take more than the three to see any improvement? My Rheumy is saying that if no improvement, we move onto the Rituxan.

My polyneuropathy neuro had me take two infusions over two days. I think (but in no way am sure) that as Gurs implied, a single infusion can be spread out. That was the message I got froovm my neuro. That is, the first was done in the hospital over two days, spreading out half the usual amount over eight hours the first day, and the other half over fewer hours the second day.

I had a wonderful reaction to IVIg. What put me off, was the idea of eight hours in a closed room in my doctor's office, and going to the restroom through the office and waiting area in a backless gown and pushing an IV pole. That does lower the cost, but the circumstances put me off. Now I never ually asked the polyneuropathy neuro¹ if that was how they planned for me to take bathroom breaks. I *did* know the room where I would be cooped up and hooked up for hours, and the room alone did not appeal.
I
It is possible to feel the effects of IVIg within two to four hours of the beginning of getting an infusion. Note I said *possible.* I did. I liked the effect. It seemed to fade a liitle after a while, and the second day was neutral, no big whoop. Overall, the two/three infusions do really help neuropathy. You could feel something similar, or nothing much over the three days, and still find that the IVIg helps a great deal, a few days or weeks out.

On the cost of IVIg, and insurance coverage for it, I think it was covered by Medicare, before the Medicare modifications of 2009. I don't know what the results of the legislative changes were, but the Neuropathy Association lobbied to restore/improve access to IVIg -- particularly for rare diseases.

See http://www.neuropathy.org/site/PageServer?pagename=IVIG_Access Watch both videos about the fight to maintain sane rules and reimbursement for IVIg through Medicare == because most recipients are disabled and qualify for Medicare.

The positive experiences on IVIg that run alongside the YouTube videos from the Neuropathy Association are a counter to the downbeat prediction of your doctor, Malew/Sjogrens, and more in line with my experience. You do need to discuss the specifics of the infusion you are getting, and the doctor's experience with that particular brand.

Wishing you a good experience, and less pain, with IVIg,
Soycoffee

1. I have two neurologists, and have had them both for ten years, so I have to distinguish them. The "polyneuropathy" neuro diagnosed my CIDP, suggested that I try Vitamin b12 -- and then I found a couple of forums on it, tried it, tried it again, and found it effective, equally effective to IVIg, for me.
    The other neuro is my neuro ophthalmologist, who has been seeing me to follow a third cranial nerve injury sustained when I was a pedestrian hit by a car -- in a cross walk -- in 1989. He gets ecstatic (funny!) when I show up and he can demonstrate the funny ways that my right eye and left eye interact -- called paradoxical regeneration (of the third cranial nerve). Mostly his fellows and his interns used to be clueless. I finally took pity on them and told them what they were seeing. Then this last time, the Fellow who examined me was really good. When the eye neuro came in, he reported everything I had told him in a "bullet" type summary that was very exact and precise -- and nailed the dx as paradoxical regeneration from an old injury, as well as Bell's Palsy -- an autoimmune disorder, like Sjogren's and CIDP neuropathy, but a time limited one due to swelling of the seventh cranial nerve.

[malew/sjogrens]

Thanks for all of your words of encouragement. I am optimistic that the IVIG will work. SoyCoffee, I am not worried about Medicaare right now as I am only 46 yrs old. My major med should cover it.

[irish]

I would call and check with your insurance company as not all insurance companies cover IVIG and people have had some terrible shocks when they get those big bills. Irish

[malew/sjogrens]

I really do not have an option. I need the treatment regardless who covers it. If it is not covered which I don't know why it would not be (as it is medically necessary) then I will have to pay it. Right now getting better is what I care about.