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IVIG therapy for vascular neuropathy


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#1 susie54

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Posted 25 July 2008 - 01:56 AM

Hi Everyone,

I haven't been here in a long time. Actually was doing quite well for a while and very busy with elder family and grandaughter. I have been in a flare for about a month now and getting worse. Having alot of inflammation especially in nerves. Neurologists diagnosed me with peripheral neuropathy and it is also affecting my autonomic nervous system.
My legs get tired and have weakened alot in this. The EMG<NVC test revealed damaged to both legs and active , progressed in one year alone. So she wants to treat me with IVIG for the neuropathy which she actually called vacular neuropathy.
Has anyone here had this and had success? And also, did there insurance cover this or was it very costly on your part.
I have MCTD with lupus/sclero mix. Susie54

#2 Sam

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Posted 25 July 2008 - 02:48 AM

I have heard of IVIG but not for the neuropathy though. Let us know how it helps and works out for you. I am very interested in this. Sam
Sam

#3 Peggy

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Posted 25 July 2008 - 05:56 AM

I have the same exact thing as you and just got done last month with a 3 month IVIG therapy. It is very expensive and my insurance company first denied the coverage. Then I appealed it and the appealing doctor who reviewed my case overturned it and allowed the therapy. According to my numbers they went back to normal. But I have yet to see any difference and I still have terrible pain and swelling. I have been told that it takes at least 5 months and my insurance only approved 3. My doctor is going to see if the numbers go up and if they do then she will ask for approval for more IVIG. Email me if you want more information. Good luck to you.

Warm hugs,

Peggy

#4 janey

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Posted 25 July 2008 - 02:54 PM

Susie,
Welcome back! I was wondering where you were off too. So sorry to hear about the neuropathy and the trouble it's giving you. I hope you can get approved for IVIg and that it helps. We do have a page on IVIg and some of the recent studies. You'll see a recent study about IVIg and its success with neuropathies.

I've been getting IVIg infusions for over 2 years now. I'm at every 7 weeks. In fact, I go in Monday for a 3 day infusion. Like Peggy, mine is for polymyositis. Fortunately, I don't have the pain that you and Peggy suffer from but I did have tremendous muscle weakness and fatigue. The IVIg is the only thing that keeps my muscle enzymes (CPK or CK) normal. Unlike Peggy, I did feel the effect after the first two infusions. Now I know when it's time to get another one. I feel great for a good 6 six, then I start getting more and more fatigue and my stamina decreases. That's where I'm at today. By next weekend I'll be ready to get back to the gym. It only takes 2 to 3 days now for it to kick in.

It's extremely expensive so I don't know how much longer my insurance will cover it, but I'm going to take advantage of it as long as I can. BTW - I don't pay a dime. It's considered out patient so I don't even have a co-pay.

Good luck to you Darlin'. Let us know if you get approved and how you are doing. It's good to hear that you did have a good spell for a while. Hopefully, it will return soon.

Big Hugs,


Janey Willis
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#5 susie54

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Posted 25 July 2008 - 04:49 PM

Janey,

Thanks for replying. Also you two Peggy. I have mixed connective tissue disease like both of you and it is good news that the IVIG has done well for you. YOu say you go in to have treatments. Where do you go and how long does each treatment take? I guess I have lots of questions because it is so costly. At this time, the neurologist does not feel we need to do it but there will come a time soon and she wants me to look into it. I would love to feel better in my legs. They are just dead weight by afternoon right now. SO TIRED TOO> After I get out of this flare up I am having surgery to remove my thyroid in August. It has become to large and may on the outside chance by cancerous. I am taking prednisone for flare up now. All these medicines and antibiotics have messed my tummy up. Tomorrow, I come off of the antibiotics YEAH. That will help.
Janey and Peggy , you have been through alot. I commend your spirit of living. I will read everything I can and hopefully my insurance would cover it. It sounds good and not steroid based. Thanks. Susie54

#6 janey

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Posted 27 July 2008 - 08:11 AM

Susie,
Talk about having gone through a lot and still going - what's this with the thyroid!? Goodness Girl! That's probably causing a lot of your fatigue. We just posted a Media article in the ISN newsroom on the thyroid and some of the symptoms it can cause. You might check it out.

The Body's Traffic Cop.

In reference to IVIg, I go in every 7 - 8 weeks (depending on when the clinic can fit me in) for 3 days. Each day is 6 - 8 hours depending on how long it takes to find a good vein. Once I'm hooked up it's not bad. Several hours of reading, working, listening to music, chatting with others getting infusions. I go to an infusion clinic at my rheumatologist's office. They do all sorts of infusions for people with a variety of autoimmune diseases. Remicade for RA is the one they do the most. I'm the only IVIg infusion.

Please let us know how you are doing and how the surgery goes. One thing at a time. Maybe after your thyroid surgery, you'll start to feel better and some of these new symptoms will go away. Good luck to your Darlin'. Stay in touch!

Big Hugs,
Janey Willis
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#7 Peggy

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Posted 28 July 2008 - 04:40 AM

When I went in for my infusions I went in to our hospital who has a special room for people who get infusions like mine or for chemo or blood or whatever go. I get a private hospital room and it takes from 8:30 am to 5:00 pm. They start it running slow and then speed it up if it's OK to do. I have a huge amount to go in so it takes a while and I do this for 3 days a month. Now when I go back to the doctor we will have to decide if I need to do it again and if insurance will pay for it. While I am getting the infusions I sit there and watch tv. I have a lot of family that come and visit and that passes the time too. I also had a port put in before these started and it can stay in for 2 years I think. This makes it so much easier as my veins are impossible to find and they didn't think they would work for as much as they needed to run through it so that's why they wanted the port. I have the muscle weakness like you do but also have pain in my legs all of the time even with the pain patch that I wear. It's because I still have that I haven't noticed any difference from the treatments. The only thing that changed is my CPK numbers went from being extremely high to normal so from that perspective they worked. Good luck to you when and if they decide to do it.

Warm hugs,

Peggy

#8 susie54

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Posted 28 July 2008 - 03:06 PM

Thanks Peggy and Janie,

I will let you know how the surgery goes. Right now , I am not going to have to do the IVIG. So I have time to look into all of it. Thanks for your feedback. That helps alot. Susie54

#9 debonair susie

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Posted 28 July 2008 - 04:37 PM

Hi susie54,

I'm sure sorry that you've had so much trouble with nerve inflammation/flares...I know the trouble has gone on for quite some time and it can't be easy.

I hope that the surgery goes well for you.

Take care of yourself and please let us know how you are doing?

Hugs,

Susie
Special Hugs,

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