Annaliese Posted January 9, 2016 Report Share Posted January 9, 2016 Hi, Has anybody on here had IVIG to treat their dysautonomia/POTS? Of so, did it help? Quote Link to comment Share on other sites More sharing options...
Clb75 Posted January 9, 2016 Report Share Posted January 9, 2016 I developed another autoimmune disease called cidp (which causes nerve damage in the hands and feet) during pregnancy, then postpartum developed blood pooling in my legs. I also had an emergency c section and another surgery during my delivery. I was on ivig two years when my pots symptoms developed rather suddenly. I have now had it for 2 years am am housebound. In my case, ivig did nothing to prevent the onset of pots nor has it done anything to help my current symptoms. It may be in my case I don't have an autoimmune form, or maybe it is and ivig isn't the correct treatment for it, just as there are many other autoimmune illnesses that don't respond to ivig but can be treated with other meds. Do you have an option to try ivig? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted January 9, 2016 Report Share Posted January 9, 2016 I just finished a 5 day course of IVIG last month. I have already seen some major improvments, especially with my BP fluctuations. I have gone from around 15 syncopal episodes a day to around 3-4. It has opened up many new possibilities and I have been able to start living life again. Yeah! I even was able to walk a few yards without passing out, which is really amazing. Due to some hip and feet issues I have not done to much walking but hoping that will improve. My gastroparesis seems to have improved as well since I am consistently being able to take some food in orally. I'm looking forward to not needing a feeding tube anymore!After my first round of IVIG I went from unable to stay conscious when seated to only passing out about twice an hour when seated. I also stopped passing out when supine. My response was somewhat unclear because the central line they they placed for the infusion got infected and I became septic about a week after the infusions. (I would like to note that I did recover much faster than any of the other times I had sepsis.) My heart rate also began to come down on bpm avg.This is my second 5 day course, I had one in February 2015 and then December 2015. My neurologist's plan was to do a 5 day course followed by twice a month for 6 months and then go from there. Unfortunately my insurance has denied the request and the appeals my dr has written. So in December they went ahead and infused the drug I already had. My neurologist believes that I have an underlying autoimmune cause for my dysautonomia. (I have non specific positive autoimmune blood work.) I have a great neurologist, though not a dysautonomia expert, he does a lot of research and that was how he decided to pursue IVIG.Although it does not look like I will be able to get any more IVIG infusions approved I am grateful for what I did have. It really turned things around for me! Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 10, 2016 Report Share Posted January 10, 2016 My son had autoimmune antibodies that were making his POTS condition worse. He tried IVIG but his POTS symptoms got much worse. He did have a low IgA and many patients don't tolerate IVIG with a low IgA.. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 10, 2016 Author Report Share Posted January 10, 2016 Clb75 I'm so sorry to hear that you developed such terrible problems in pregnancy. Being housebound totally *****. Were you healthy prior to your pregnancy? I was, well mostly-I had a bit of chronic fatigue and IBS but that's all. I'm not approved for IVIG but will try to get it if I think it will help. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 10, 2016 Author Report Share Posted January 10, 2016 Ancy, wow, what an amazing response. I got a bit excited reading that. Did you develop dysautonomia during pregnancy? Have you stayed at your new and improved health levels despite not continuing the IVIG? I'm sorry to hear that your insurance won't cough up, especially since you've had such a great response. Do u mind me asking what your nonspecific markers of autoimmunity were? ANA/CRP perhaps? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 10, 2016 Author Report Share Posted January 10, 2016 Looneymom, thanks for replying. Sorry to hear your son got worse on IVIG. Has anything helped for him? Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted January 10, 2016 Report Share Posted January 10, 2016 No I have never beeN pregnant. My dysautonomia started following a series of infections. It has only been about a month since I had the IVIG so I'm still seeing great benefit. The first time it helped a lot for about 3 months and through exercise and really pushing myself I have continued to progress and overcome much of my decondioning. I still saw some benefit for up to 9 months. I do not remember exactly what blood work since it's bee almost 4 yrs although I know ANA was one of them. Right now my records are packed but when I find them I'll try and let you know what the others were. My CRP and SED are always crazy high I have not had them tested in a while im curious wether there is any change since IVIG. Couldn't tell the first time as pretty much all my blood work was crazy with the blood infection.Are you and your Dr pursuing IVIG? The trouble we ran into is ivig is not a highly recognized treatment for Dysautonomia. What doesn't make sense is they approved the initial 5 days and then denied the rest as it was "not medically necessary" really baffles my Drs and I why they approved it in the first place... My nurse case manager was excited to see how much I've improved in just 3 weeks so she is going to see if there is ANYTHING she can do to try and get fruther treatment but I'm not to hopeful. We are considering trying to figure out more with the autoimmune stuff in order to get the IVIG through a different diagnosis possibly, but that's a big undertaking... If you dont mind What are your worst symptoms that you are seeking to have resolved? Hope you can find something that can make a real difference for you. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 10, 2016 Author Report Share Posted January 10, 2016 Ancy, I'm going to try to research first then pursue if I think it will help. I understand it's super hard to get so I don't want to go through that process unless I'm sure I want it. I've been sick for 6 years. Initially I was bed bound for most of 3 years. I get about a bit now but I need help to look after my kids, I don't do housework except for the washing and I can't work. My worst symptoms are OI, hormonal probs, chest pain and diarrhoea). I have standing still times of 5 mins. I don't faint but get terrible chest pain and diarrhoea if I persist in standing. I also have a lot of visual system and ear problems. I can't look at things unless they are directly in front of me and have problems with screens. The the rest I'm pretty much common dysautonomia symptoms ( sound and light sensitivities, anxiety, polyurea etc) with joint pain. I'm also having trouble fighting infections but my immuno can't find a deficiency. I'm not sure I'd want to have IVIG if I would have to continue having treatment forever. If it got me slightly better with a few sessions and I stayed that way I'd be very happy with that. When I search for articles though they only ever seem to talk about short term outcomes. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 10, 2016 Report Share Posted January 10, 2016 My son tried IVIG for 3 months but after each treatment his symptoms kept getting worse.. His doctor was able to get plasma exchange for him since his testing was positive for autoimmune antibodies.. He did this treatment for year and his symptoms have improved. His POTS symptoms are not totally gone. My son was totally recliner and wheelchair bound before this treatment. The autoimmune antibodies that were found in his brain were making POTS and neurological problems much worse. He stopped the plasma exchange in July 2015. In June 2015, he was finally able to ride a stationary bike without his legs shaking. He has gradually been able to increase his biking and do more physical therapy exercises. In November 2015, he finally was able to stand up by himself and a week later started walking. His blood pressures are more stable and instead of taking 30mg of midodrine 3 times a day, he is down to 20 mg 3 times a day. His POTS condition was part of an underlying autoimmune condition. He is 75% percent better. He still has a ways to go but without plsama exchange, he would have never gotten this far. He needed the plasma exchange to remove the autoimmune antibodies that was making his POTS condition worse. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 12, 2016 Author Report Share Posted January 12, 2016 What a terrible ordeal you and your son have been through. I'm so glad to here he is now 75% better now. What an improvement. Thanks for letting me know that IVIG made your son's POTS worse. That's good to know. It's hard to make decisions on treatment when there's so little info. I really hope your son continues to improve Rachel. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 12, 2016 Author Report Share Posted January 12, 2016 Rachel, was your son's POTS getting worse at the time he started IVIG? Ie, do you think it was the IVIG that made him worse or was he getting worse anyway? Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 12, 2016 Report Share Posted January 12, 2016 He was getting worse anyways but the IVIG sped other things up.. I think because he had the low IgA and the hospital pharmacy would only use one brand of IVIG was part of the problem. You can get some forms of IVIG with very low formulas of IgA but our cardiologist could not order another brand. It was the only brand the hospital would order and Tyler had to have a very slow infusion. He would have to stay overnight just to get the dosage the doctor wanted him to have. After the third infusion, I told the doctor we were not seeing any improvement and things were worse for Tyler. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 13, 2016 Author Report Share Posted January 13, 2016 Rachel, so does your son have a genetic IgA deficiency ? Sorry to ask so many questions. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 18, 2016 Report Share Posted January 18, 2016 AnnalieseI don't don't know if he has a genetic IgA deiciency. His is considered low. On his test it was 42 and the normal range is 60 and up. To be considered deficient, it would need to be below 10. However, this might be something I need to look at later on, if he does not continue to make progress. He has been to an immunlogist and had all that testing. The autoimmune antibodies were found through a test called the Cunningham Panel. These antibodies have even been found in adults. Did you by any chance have trouble with infections like strep, ear, sinus, or pneumonia? If so, I would be happy to post an article that talks about these antibodies found in adults. Keep asking questions and digging through research. Find a doctor that's willing to dig through the research with you. Quote Link to comment Share on other sites More sharing options...
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