Immunoglobulin Iv As Treatment?

[Kathy_Ireland]

Hi Everyone

I have POTS , CFS , NMH,(neurally mediated hypotension) and neurocardiogenic syncope for 7 years. After being intollerant of every medication I've now tried, my Dr has suggested I try immunoglobulin IVs as treatment for the falling blood pressure and dysautonomic aspect of the illness. Just wondering if anyone here has any experience of it either good or bad. After so many bad experiences with treatments I'm very nervous of trying anything that will make things worse. I'd be very greatful for any replies or any insights anyone might have. Thanks for reading

[dsdmom]

I believe there is one person on here (MNSue if you do a search) who has tried ivig. I am waiting to get tested for a specific antibody (AChR) that would indicate whether my doctor would recommend ivig. I know it can be tough but to be honest I would welcome any chance at a therapy that might help me feel better in the long run!

Let us know how it goes if you decide to do it.

[Megan]

I have no insight, but I did want to wish you luck if you decide to try the treatment.

Meg

[Kathy_Ireland]

Thank you both so much for your replies. I did a search as you suggested Dsdmon and I have found some info on it alright. It seems to be refeerred to as IVIG here which is probably where I made the mistake in my previous searches!

You're both so good to reply though. This is such a great site. It's so nice to have somewhere so friendly to come where people understand what you're talking about and are willing to reach out to you. Particularly so when you're feeling bad and are confused. You both made my world a bit brighter today

[Sunfish]

hi kathy -

i've been VERY quiet on the forum for the past month or so & haven't "met" you yet but i'm actually someone else who gave the treatments you're referring to a try....almost exactly two years ago. my body ended up disliking the IVIG pretty drastically, though not in a way that my symptoms worsened; essentially my liver responded as if the IVIG was a toxin such that continuing the treatments would have put me into liver failure, but i don't have any residual trouble/ problems (liver or otherwise) so am still glad to have been able to give it a try. but rather than give all the details again now with my memory not as fresh, if you search my screenname &/or IVIG (which you may have found by now anyway) you'll get the whole scoop on my experience. i posted before, during, & after receiving the treatments so you should find quite a few of my posts.

IVIG is VERY pricey & isn't without risk so not generally a first line of treatment but something that - for certain people - is worth considering. it's more specifically indicated (more quantitative evidence of its efficacy) for those who test positive for a particular antibody; i didn't have the antibody but the theory amongst the docs was/ is that some people may have a not-yet-identified antibody that the IVIG would work against as well. i would be curious to know if you have the antibody (or if you have even been tested for it)? my health was at such a point of deterioration that we didn't have much to lose by trying the IVIG & despite it not working for me i'm still very thankful to have had the opportunity to try it. my doc(s) didn't have trouble getting my insurance to approve it but for me they were able to present it as a chance at being able to stop other life-sustaining treatments (IV nutrition) that are extremely expensive as well so that may have made the rationale a bit easier (b/c if it had worked it would have in fact been much less expensive for my insurance within a few months time).

if you have trouble finding my past posts and/or have additional questions for me don't hesitate to let me know as i'd be happy to chat with you further.

melissa

[LindaJoy]

I may be all wet here, but I'm thinking that this IV treatment that you're talking about here is something that was considered for me back in February, when I was in the hospital for a month, and the doctors opted against it since I wasn't even tolerating IV vitamins, so they Knew I wouldn't tolerate this treatment.

I have an IgG subclass I deficiency, and they said that this treatment is what I need, but they wouldn't risk it. They said just to watch me and see if the deficiency affects me enough to risk the treatment. Apparently, they didn't see the need. I wasn't disappointed. I'm like you--I fear anything new.

If you do try it, please do let us know how you do. I do help it helps you and that you start to feel a lot better!!

Lindajoy

[Megan]

I posted earlier, and then I realized that while I have no personal experience, I do know some about it. My sister has Lupus and has had a handful of ivig treatments. Different disorder, and they weren't all that helpful for whatever reason, but it can cause nausea and headache as side effects. My sister had to be put on morphine while getting the treatment for the pain, as well as nausea meds before and during. I don't know if these side effects happen for everyone, and I have a distant cousin who has benefited from the treatments. I just wanted to let you know that I had a bit of brain fog but I do actually know something! Good luck with it!

Meg

[dsdmom]

Meg, the side effects you mentioned are things that I have read about and what makes me nervous to try it - IF my doctor suggests it.

Melissa - did you have a rough time with it?

[Kathy_Ireland]

Thanks for all your replies and thank to Mellisa for taking the time to tell us how you got on with IVIG and to you too Meg for mentioning about your cousin and sister. It's good to be informed about these things before you go for them. I'm afraid the thought of pain and the initial side effects kind of scare me too. I feel so unwell at the moment that I just don't know if I could bear to be much worse. More so it's the fear that I'll be in a much worse state coming out of hospital and that it will take me years to recover from as has happened to me before. Lately I have really found the idea of being so sick in a world where no one really seems to know whats going on with us pretty frightening... it usen't bother me nearly as much before now. I think I'm turning into a big wuss

[Sunfish]

kathy et al -

my prior posts detail my posts more specifically, but i didn't have any horrible side effects during the treatments. i had a few minor issues but nothing that i couldn't tolerate nor anything particularly worse than what i deal with on a regular basis in the first place. But - quite honestly - my health had/ has declined to a point that I would have been willing to put up with a LOT if it had any logical chance of it offering improvement

re: nausea, i have some degree of nausea regularly with higher "spikes" including vomiting at least several times a week (my GI tract is severely impaired to the point that i get no oral hydration/ nutrition & require gastric drainage 24/7) ; i still had nausea during/ after my IVIG treatments but not any more than what i have "normally".

i did, on the other hand, deal with some headaches. in total i had five 5-day IVIG treatments, the first in the hospital & the second at home through home nursing about a month later. i had a bit of a dull headache during the last 2 days of the first month's treatments and during most of the second block as well as a few days after. after my first treatment week i was just the same as just before; after my second week of treatment i was back to my pre-IVIG state within 48hrs or so, & not horribly worse (just the minor headache) for that time. the headaches were more of annoyance than bad pain...nothing like migraines that i get at times nor like the GI or neuropathy pain that i deal with regularly. i may have taken motrin and/or tylenol a few times but can't recall for sure. truly nothing too bad, though i have been told over the years that i have a pretty decent pain tolerance.

the liver reaction that i mentioned in my other post was the only "side effect" that caused me to stop the treatments. if i hadn't had that problem we had planned on doing at least 4 more of the 5-day treatments on a monthly basis (total of 6 treatments over 6 months). but the liver reaction made it too dangerous to continue. it wasn't anything that i had any physical symptoms of though but rather something that showed up on my bloodwork just after my second week of treatments. i was already on TPN (IV nutrition) at the time too though which puts a HUGE amount of stress on the liver so that may have been part of the issue for me as well. the IVIG was definitely the biggest factor b/c i was on TPN for some time before the IVIG & have been for most of the time since & only during (& just after) the IVIG treatments did my liver function numbers skyrocket to dangerous levels, but the two things combined may have had a synergistic affect that wouldn't factor in for most people.

i'm guessing you're mostly looking for info rather than advice, and obviously it has to be a choice between you and your doctor, but IF it's something that your doc recommends & you trust your doc & your day-to-day health is truly poor, i'm one who would definitely encourage you to give it a go.

i'm still curious though if you've had the bloodwork done for the specific antibodies? if you find out that you have the antibodies then you have a lot higher chance of improvement with the IVIG treatments so if you're on the fence about your decision it might help you to have the test done.

hope this helps,

melissa

[Kathy_Ireland]

Thanks a million for clarifying that Mellissa. That doesn't sound nearly as frightening as some of the things I've read about IVIG before and I would take your advise to heart as you are someone who is severely affected also. I am feeling pretty awful and bed bound but I haven't been as severely affected as you thank God. I'm able to eat again now. I'm really sorry to hear you are so unwell. I will say a prayer for you.

I haven't had any antibody tests yet. I heard from another Dr who had been speaking to my neurologist that he was very keen to try this treatment with me in the next few weeks. My blood tests don't indicate a need for it but I live in Ireland and as far as I can tell our blood testing is quite limited compared to testing in the US. There have been a few tests now that I have thought and other Drs have thought might be important for me but we are told that they are just not available in Ireland. I have a feeling this antibody test you refer to might be the same. I will certainly be asking about it though!

Your replies have really helped. Thank you again and I hope you'll improve .

[MNsue]

I have worked with a neurologist and an immunologist for 2 and 1/2 years to get my neuropathy and POTS under control. I am happy to say that I am stable. My only markers for an autoimmune disease is a strong family history, high thyroid antibodies, vitaligo and a progressive neuropathy that looked a lot like MS.

I started with high dose solumedrol (1,000 mg IV 1x per month for 6 months) It seemed to help, but the side effects were not good. We then moved to IVIG 75 grams 1x per month. I will be honest, this was very difficult. I became very sick from the treatment. Luckily I have a good doctor that moved me to the Sub Q form (Vivaglobin) in January. I now inject 20 mg 5 times a week. It is a big shot, however I feel pretty good, and my neuropathy is in remission. I have regained full use and strength in my left side, however I still have times when the weakness will return for a short period of time. My POTS has improved, however it has not gone away.

I know that the treatment is very expensive and am lucky that my insurance company is covering the drug. I live in fear, that someone will decide that I am not eligible for the drug. Without it I was losing more and more mobility and strength.

I hope this helps.

Wanda

[dsdmom]

MNSue,

So did you not test positive for the AChR antibody?

[MNsue]

No I did not test positive for that antibody. I should add that I was in remission for about 2 years while being treated with steroids for chronic sinus infections. Once I had sinus surgery and did not need the anitbiotics and steroids, I started to go down hill fast.

I think the neruological symptoms propted my doctor to look for additional answers.

[DancingLight]

Interestingly, my friend just received IVIG treatments during pregnancy for low platelets.

She is an otherwise perfectly healthy woman. However, she needed the IVIG to deal with the low platelets.

She had an allergic reaction which they controlled using benedryl. She was not able to take steroids b/c she also had gestational diabetes.

Otherwise, it seemed to do the trick for her and she delivered a healthy baby and she is healthy post-delivery.

Obviously not related to POTS, but it was interesting that she just received this treatment.

My doctor has suggested watching my immunoglobulin levels while undergoing tx for chronic lyme and keep IVIG in the picture if they go low.

Melissa is certainly the 'expert' when it comes to topics like these!

Emily