IVIG worked for me

[hoping]

IVIG worked for me!  I was having severe burning all over and was actually suicidal with the pain.  I received IVIG, equivalent of 5 treatments rolled into 3 days.  I did not see immediate relief, but noticed a day or two after finishing.  I was able to just toss the walker and cane aside and walk about without any difficulty in the house.  What a relief that was.  THe only downside is I aquired more severe burning in hands and feet and without meds (Cymbalta, Lyrica, Tegretol) the burning again rears its ugly head.  So the IVIG restored sensation that was missing in lower legs and feet, and hands.  And restored strength so I can move about easier.  Now if I could just get rid of the burning.

But I am at least hopeful now that IVIG works and doctor said I could get monthly infusions.  All this came about through once again careful deliberation on my part.  I showed my rheumy a recent article from the CLeveland Clinic on Small Fiber Neuropathy, a neuropathy affecting small pain fibers which are not myelinated and usually do not show up on EMG.  He wanted me to get into univ. neurologist for consult on this.  I told him I couldn't get in for 6 mo.  He said he'd be contacting my old univ. doc. as he'd spoken with him in the past.  He called me later that day and told me I had an appt. in 2 days.  From there I continued to get the ball rolling.  Some days I really don't want to advocate for myself, but it's more frustrating not to.  My rheumy is so great about letting me show him things and taking them seriously. So nice to have a doctor that is so not above you.

Karin

[Katybarstool]

Karin

That's wonderful news, I'm very pleased for you. Your doctor sounds a real treasure too. Well done you!

Kathyx

[irish]

Karin, You were using your head to tred softly and carry a big stick. Yes, the sjogrens does affect small nerve fibers and I think there is info in the Articles section on this website.

IVIG seems to work fairly well with neuropathy. However, I don't think it always works because if that was the case everybody would be on it. I still have some issues with my sjogrens and I have been on monthly IVIG for almost 3 years plus I am on a very high dose.

I guess if it was me I would continue taking my meds as listed below. Youo may find some improvement over the months with the IVIG but I guess I would not want to suffer from the burning if I had meds that would help.

Also, not everyone reacts the same way to the IVIG. I am on my third product and finally am getting more improvement. The improvement I had before was slight but still improvement and now with this new product I am really noticing that I am not as weak, etc. I take my IVIG for my myasthenia gravis. Good luck. Irish

[gurs]

IVIG didnt help with my neuropathy at all,,,,I only had a few treatments. When the doc doubled my dose, they ran it very fast and I got deathly ill. Scared to try it again, glad you had some good results...maybe you just need more infusions and more time...do you know what kind of IVIG they used?

[Scottietottie]

Hi Karin 

I'm glad it worked for you!  Well done getting the ball rolling like that. Sorry you're still burning but it must be great to be off the walker! Your rheumatologist sounds fantastic! It would be good if they were all like that!

Take care - Scottie 

[hoping]

If they run it fast, you can get deathly ill or get asceptic meningitis.  I got this the first time, they ran it in 2 hr.s without adequate hydration.  The infusion nurse says to drink 3 quarts of water 2 days before, on the day of IVIG, and 2 days after the IVIG.  She says the IVIG without adequate hydration causes stress on the kidneys leading to the bad reactions- headaches.  She says she can run it in 2 hr.s on most people.  I had it run for a long time, ave. is 3 hrs., but mine went in over 6 hr.s.  Still had headache, but not unbearable.  Don't know the brand used.

I will keep trying the IVIG monthly because I do think it does a decent job suppressing immune system and allowed me to walk without difficulty again.  I know it won't rid me of the burning, wishful thinking I guess.  In the past, the burning will sometimes burn itself out and abate, so maybe that'll occur.  Just glad to be up and about.  And maybe the continued IVIG will help with the burning also.  I would not go without meds ever, notice when I miss a dose.  I am on high levels of Tegretol but right now it helps so don't dare come down.  Also on max doses of Cymbalta and Lyrica.

Am sleeping better and that helps tremendously.
Karin

[irish]

Anyone who gets IVIG should be aware that running the product fast is not good. The dose is different for everyone. I get 4 bottles that contain 200 cc's each or about 3/4 cup. I have been getting it for almost 3 years and the administration schedule never changes.

The first 200cc goes takes about 2 hours, the 2nd bottle takes about 1 1/2 hour and the last 2 bottles take about 1 hour or so. It usually ends up being about 7+ hours that I am there. I get my pre drugs and after the last bottle I get 100cc of normal saline flush.

These infusions are very high in protein because they are taken from the blood of donors. Each bottle is made from the gamma globulin of 2000 throuogh 20,000 donors. VEry, Very high tech stuff to manufacture this. Yes, You do need to drink lots of water the day before, day of and day after your infusion. Reason being that if you are dehydrated or low on fluid when the infusion product hits the blood stream it will draw fluid from your body(especially the spinal fluid) to try and thin out the infusion product. This is a osmotic process where the water is pulled from less concentrated to higher concentrated fluid to make them equal in concentration. When this happens the spinal fluid is lowered some and you get the terrible headaches that mimic meningitis.

I have never been really ill from my product but I am a big drinker of fluids. I take a cooler with an ice pack in it along with several ziplock bags full of ice. I also take a bag to carry my kleenex and several bottles of water and pop.  I have watched some people sit through their whole infusion and not drink more than one can of pop. I can't believe they don't get ill.

My first product was Gammagard and I was on that for over one year and then I had a huge allergic reaction from it during the infusion. We thought at first it was from a bagel and sour cream I had just eaten with walnuts in it. Soooo, they had me come back in a couple weeks and try again and in 1 1/2 hours(same as the time before) I started itching with the hives.

The next product I was on was called Gammunex and that seemed to work a little better. Doc then changed me to a new product called Privigen that is working really well with most people and has much less chance of allergic or an reactions. The one thing I do get is occasional flu symptoms the night of the infusion. If I take tylenol as soon as it starts it helps. I usually end up taking another tylenol before I go to bed and the next day I am fine.

I also have to tell you that I usually watch my infusion very closely even when they put me on the IV pump. Just moving an arm can change the way the IV goes in plus it can get restricted in some way. Things happen. One day half my first bottle went in super fast because I moved my arm and was not on the pump that day. It just got away from us. The nurses are great but they have a lot of people to keep track of. Irish

[hoping]

Thanks Irish for adding what your experience has been with the IVIG.  I used to be up on the names of the IVIG long ago, but haven't had it in years.  I will hopefully get another infusion set up soon and will stress the need for me to have it go slow.  More like 6-7 hours vs. 3.

Do you get the IVIG for neuro problems? 

Karin

[irish]

I get the IVIG for Myastheia gravis which is a neurmuscular autoimmune disease. I am unable to take the Imuran or other DMARDS due to my low t-cells so the IVIG is my only option. The IVIG should help with my infections also but I still get them and the last year I have had more than usual. The only thing is----I have no way of knowing how many infections I would be having if I wasn't on the infusions.

My doc thinks that my low t-cells are a genetic/hereditary thing and because of the low t-cells my body has turned on my and I now have the myasthenia, sjogrens, AI thyroid disease, bullous pemphigoid(AI skin disease) and asthma. Feel like I forgot one!lol Does't make much difference cause they all can give me problems. My myastheia is better on this new infusion. Irish

[hoping]

Oh Irish,
My heart goes out to you.  So many AI conditions.  Seems like too much to bear.  I hope the IVIG keeps them in check.  Glad the new brand seems to be working better.  Does the MG give you a lot of stamina problems?
Karin

[wordnerd]

I've heard something about how IVIG isn't an option if you have an IgA deficiency (which I have).  Does anyone know if this is the case and why?

Irish - that's interesting that your doc thinks your low t-cells triggered all you AI.  I wonder if my very low IgA did the same thing.  I have multiple AI diseases also (Sjogrens, AI Pacreatitis, AI Hepatitis, and Hashimoto's thyroiditis plus asthma and a several life threatening allergies). I know my docs think that my labs are mostly normal because the IgA throws everything off in my bloodwork making the "normal" values irrelevant for me.  Anyway very interesting...

-Lauren

[irish]

Lauren, I can't rremember the way it goes but I do know that IgA problems happen with infusions and it seems like they have to use special products that don't contain any IgA. You would have to do a google on that one.

Also, I have the most awesome, intelligent immunologist and am so lucky. He does a lot of thinking and figures out a lot of issues about patients problems and how to treat them. He really does think outside the box, but he doesn't do anything "risky" on his patients.

He doesn't research also and is involved on an internation level. Also does some teaching at the U plus is pedicatric oncologist with hematology training. Worked on the bone marrow transplant unit at the u for 7 years. He understands more about this stuff than a lot of those other docs have forgotten. His experience is so vast. He deals with kids who have a ton of AI diseases and who end up having bone marrow transplants, colostomies, etc.Just a really talented man who is extremely kind and has no ego. That is right "no ego". Tells his patients if you say this is bothering you I believe you cause it is your body. Can you tell I think the world of him and his staff??Irish