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Everything posted by dsdmom

  1. @Arizona Girl, I guess I am getting the ivig for 2 reasons - initally it was for (suspected) autoimmune autonomic neuropathy via my neurologist but now that they found low igg and igm the immunologist has taken over. When I was doing ivig before I felt like after a couple years it wasn't doing a whole lot anymore. Today was so incredibly hard - I really don't knwo waht is going on but my orthostatic issues were through the roof this morning. I defintely feel like the last infusion was not a good one. But who the heck knows. What brand are you on now and what were you on before? My #s are not t
  2. @arizona girl, thank you for replying. I am on Privigen - always have been so no change there. We infuse REALLY slowly. 40ml/hr...so 6 hours for 20g really. Premedicate w/ prednisone, benadryl & tylenol. Plus I get 2 liters saline. Really we do it all. Pharmacist suggested we try gammunex but he was going to talk to my dr. She wants me to switch to subq (hizentra) but I need to get on medicare first before I can get that going. How long did it take before you feel like your infection rate dramatically? And if you dont' mind sharing, do you know how low your igg was before you started? Than
  3. Was looking for some other experiences with ivig. I have previously done it for about 2 years - once every 4 weeks. I got into a routine with that where I would feel crappy for a couple days after but then was ok. We stopped for about a year for me to try another treatment that did not pan out. Then this summer an immunologist diagnosed me with CVID (low igg and igm) and suggested we start ivig again. We have been playing around with the dose and frequency to keep me from coming down with infections and right now we are at every 2 weeks. Well I had it on MOnday of this week and have had a real
  4. I developed POTS postpartum after severe hemorrhages and several surgeries. I'm 6 years out and don't post here often - I'd say in some ways I'm better than when I first became ill and others I am worse or not better. Sorry
  5. Let me start by saying that I am well aware of the risks involved with rituxan. I don't have the energy to get into it now but suffice it to say I'm extremely educated on the subject. Also, I agree that plain old POTS does not equal CFS, and gosh I used to think I had plain old pots. But that was before I became more educated about my illness and perhaps my symtoms evolved and i have now seen some top specialists in the country. Mine is immune related for sure. If all I Had was a rise in heart rate on standing then I doubt I'd be looking at biologics. But since my life has been devastated by
  6. I remember asking my dr the same thing with regards to compression hose - if I wore them, would my body not be able to compensate or get better over time? He told me no. And I have to say I now believe him...I still wear hose but I don't HAVE to wear them. What I mean is that I used to have to put them on before I got out of bed and they would be on until I wen tto sleep at night. Now there are days if I'm just around the house I don't wear them and even sometimes if I run errands I don't wear them...I attribute a lot of it to ivig actually. And maybe time...but more the ivig...I guess my poin
  7. Well, CFS patients seem to do well from rituxan. http://www.biomedcen.../1471-2377/9/28 Dr. Stewart found that CFS and POTS patients tend to have similar profiles. http://www.nature.co...pr2000180a.html So theoretically if it helps CFS patients it might help POTS patients? EDIT: Another study. If it works for CFS patients, they should try it for POTS. I will try to see if I can find a doctor who can do this. http://www.plosone.o...al.pone.0026358 Jangle, I just responded to you other thread...but yes, the reason behind the Rituxan for me is CFS but my neurologist is on board because he's seen
  8. I've been taking prednisone for 4 years. Not because I want to but because I CAN NOT get off it - I was put on it for a horrible migraine and that was it..coming off makes me so incredibly sick and all of my dysautonomia/cfs symptoms so much worse. To the point where I can not function. Starting ivig 20 months helped some and allowed me to decrease my prednisone - I got very low at one point but then a tough virus which meant I had to go back up...then I moved to a high altitude area which really did a number on me and I am still stuck on the prednisone. Have talked about trying other things s
  9. I had to use an attorney for my ltd disability appeal and was very impressed with her. I'm not saying anything about the firm you are using but can just tell you about my experience. Any time my attorney communicated with the insurance company, the letters were all legalese speak, citing various other cases, etc... In short, things that I could NOT have done. She was in touch with all of my doctors and got all of them to write letters to her specifications PLUS she had a vocational expert review my case and write a report. My appeal was hundreds of pages long...and took months to do. The attor
  10. I may be trying rituxan soon. If I do I will let you all know how it goes. I have been doing ivig for 20 months but personally would not consider that a biologic in the context of this conversation.
  11. I think there is absolutely a subset of patients with an autoimmune pathology To their dysautonomia/me/cfs. Howver, these antibodies are just one that thy have been able to pinpoint. It is probable that there are other autoantibodies at work as well, so if you don't test positive for achr antibodies, it does not mean you don't necessarily have an autoimmune process going on. This is part of what underpins the recent rituxan studies - the hypothesis that an an unknown auto antibody is being knocked out by the rituxan and thus makes the patient feel better. Here's a case study of a dys patient
  12. I take it. Relatively often. I use the nasal spray version and I was nervous taking it the first time. I find if I use it on an empty stomach I feel more side effects - occasionally I have gotten extremely nauseas but usually if I feel side effects it is a weird feeling of tightness/heaviness in my jaw and arms. And there could be a feeling of uneasiness but it usually all goes away within 20 minutes. And then other times I feel nothing weird. Overall it's my rescue drug for headaches and if I don't take it soon enough it might not work as well. Use it judiciously and it can be your best frie
  13. I dont' know that they would do them together. I started w/ nerve blocks and they did help somewhat but they do not last long ( a few weeks at best) so the idea is that botox would be a longer lasting measure. have you noticed a difference w/ the botox yet?
  14. Just a note on Botox. I tried it twice and both times it made me dramatically worse. I know I am in the minority so I truly hope that it ends up helping you! Daily migraines are no fun. Good luck!
  15. If I were you I wouldn't take this drug!!!! I don't post here often but saw this and felt compelled to warn you. I was given a five day dose almost four years ago and have been unable to get off it. It's been really awful and is the bane of my existence. I now have osteoporosis at 35 years old and it is so hard to deal with. The problem is that we don't know what exactly the prednisone is treating but my endocrinologist believes that the reason I can't get off it is because it is treating some underlying neuroimmune issue. And until we can treat that with something else I'm stuck. I have been
  16. I have used mestinon - started w/ the pills but really felt weird on them. switched to the liquid version (which I think they make for pediatrics) which allowed more precise dosing and I bulit up slowly to about 25/30mg 3x day. Since being on ivig I have not used it much but I did think it helped. But I did not like the pill version at all.
  17. I see Dr. Novak. I've seen another local group but had a bad experience. They are quite misinformed about some aspects of dysautonomia and DEFINITELY KNOW NOTHING about chronic fatigue syndrome. The guy I saw had the arrogance to tell me one thing to my face and then write something completely differently in my notes - when I got the notes and showed them to my pcp she about lost her mind. He had the balls to say that I did not have dysautonomia - despite extensive previous testing - and this was also before he did his own testing. Once he did his own testing he said I did have it...but then
  18. Just wanted to add...when I tried the stimulants, one of them (adderall) gave me an enormous headache. So much so that I couldn't take it any more.
  19. The poor thing - i totally sympathize with your daughter with both the fatigue and the headaches. Why won't they let her try something more for her headaches? I have horrible horrible horrible headaches and they are always there - sometimes they are horrific and I can't get it under control but over the last 5 years I've tried a lot of things and have slowly learned what helps. 1 - is she taking magnesium? If not - get her on that asap. 500mg / day 2 - is she taking riboflavin? I couldn't tolerate it stomach =-wise which stinks because it definitely helped my headaches - 400mg/day 3 - ice pack
  20. Hi naomi - yes, insurance approved it for neuropathy. Even though I would say it is probably more autonomic neuropathy, my dr put it through as neuropathy. I do take steroids w/ the ivig but really probably only b/c I'm already on steroids (a lower dose) so on the day of ivig I jump up to 30mg. I also pre-medicate with benadryl and tylenol and continue with tylenol for about 48 hours post infusion to help with headache. I think it has helped with a lot of things - again though it has NOT cured me. I think it's helped w/ standing (so maybe blood pressure stability?). I used to take mestinon eve
  21. I've also been doing ivig for over a year now. I use privigen as well but infuse MUCH slower - 50ml/hr and sometimes even slower. When I started I also did 5 days in a row - 500mg/kg. Now it's every 4 weeks @ 500mg/kg as well. I did 400mg/kg for a while but had break through neuropathy and other symptoms so we upped the dose. I'm small though so I still only get a small amount - 25g. Anyway, I got a horrific headache that lasted a while after the 5 day course - it's a lot of ivig. Also make sure you build in rest time for a couple days post-infusion because it can really exhaust you. And make
  22. I've been doing ivig for a little over a year now - the first treatment was 5 days in a row, now it's once a month. It has definitely helped my dysautonomia symptoms although has not cured them. But it helps enough that Ithink the few down days a month are worth it. It takes me all day to get the infusion because we go so slowly and then the day after I sleep a LOT and then the day after that I am almost back to normal... I do get a headache with it but it's not horrific as long as I keep myself treated with tylenol for a couple of days. Although last time I did have to step it up to an imitre
  23. If you truly have Chronic Fatigue Syndrome and not 'chronic fatigue' you are limited in who to see. ME/CFS encompasses much more than just fatigue - but if you are here on a dysautonomia board, I suspect you also suffer from dysautonomia/orthostatic intolerance. The hallmark symptom of true ME is post-exertional malaise - do you get sick or become bedbound after too much activity? Can you handle aerobic activity? If not - then you could have ME and not 'chronic fatigue.' There are very few docs in the country - or world - who specialize in true ME/CFS. Most docs will try to treat 'chronic fati
  24. Great find! Must be why my neurologist mentioned that he thought droxidopa would be approved next year. I'm looking forward to this one...he thinks it will be a good one (he's participating in the studies).
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