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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 that bad so I don't know what i want to do. I don't feel like it's helping w/ my illnesses. I get a lot of sinus infections and I seem to catch everything that goes around. Seriously I am pretty much always sick. LIke will get over something for a day or two then will get something else. It really is wearing on me. But if the ivig isn't helping that I don't knwo that I want to continue. The only thing is that I have had pretty severe reatctions to almost all antibiotics so they are pretty mcuh off the table unless it's an emergency situation. I have to say though that you are not the first person to tell me that it took them about 6 months - 1 year before they felt the ivig helped w/ infections, etc.
  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? Thanks!
  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 really horrible week. Tons of pain, neuropathy, orthostatic issues worse, fatigue, etc... trying to find out if the batch was different than what I've used in the past but really trying to decide if I want to keep doing this. Talking about switching to the subq version but maybe my body isn't super excited about it this time around. The other thought I had was if the ivig is starting to do what it is supposed to and my immune system is suddenly recognizing all of the viruses I harbor and working away at them which is making me feel so icky. Anybody have any thoughts?
  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 an illness that includes dysautonomia as a major symptom I'm here to post about my experiences. Jangle, I've had to search hard for good docs...a lot of it is trial and error, even after researching who might be best to see. No one doc has all the answers...right now I'm dealing with a team of a great pcp (essential I think), a neuro for dysautonomia (prescribes ivig), an endocrinologist and a CFS specialist.
  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 point is that I think that you should do whatever you can to make yourself feel better today - and I have had the experience (not just with ivig) of some medication sort of reminding my body how to work then I've been able to get off the drug and my body still worked the right way. So I guess I would say don't suffer horribly if the ssri helps you live better today. Just my two cents on enjoying life the best you can
  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 it help one of his patients before who had horrible dysautonomia but then was treated for lymphoma. I'm just saying lots of prayers that this works out
  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 such as methotrexate with the idea that what I'm dealing w/ is in some ways like RA or other autoimmune issues...with the hope that I could get off the steroids. But it looks like (fingers crossed) I may be trying Rituxan soon prescribed by my neurologist for my dysautonomia and am praying that helps. Time will tell...
  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 attorney also had my family & friends write affidavits as to how my illness affects my life. Did you receive good referrals for this attorney that you are using?
  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 w high achr tigers who experience improvement from rituxan. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2963144/#__articleid1177702aff-info
  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 friend! I found relpax way too strong and felt horrible heaviness in my arms for days.
  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 doing ivig for over a year now and it did help me get lower on my prednisone dose initially but i then got sick and had to go back up on my dose. So I'm waiting to hopefully start a new treatment soon but please do not play with this drug. In my opinion it is so not worth it. As a side note, before I became ill with dysautonomia/cfs I had taken short courses of prednisone for allergic reactions and the like and NEVER had problems coming off. So I know it is related to whatever is now going on in my body.
  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 the fellow I saw told me I just needed to start running. I explained that I had cfs - IMMUNE DYSFUNCTION - and that I had lots of abnormal immune function issues (as tested by a well-known cfs doctor) and that exercise was proven to make things worse. According to him - ha! I just need to run. The dr also told me to stop taking mestinon, which novak prescribed and really has been the only thing I can a) tolerate and that has helped. Novak is pretty good - just a head's up that his office is notorious for not responding. So if you need things in between appointments it can be trying. Just try to get things done @ the appointment.
  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 packs on the head 4 - does she see a chiropractor? If you can find a good one - they really can help. You may have to go through a few though to find one who works well for her. I see someone who solely uses an activator on me because actual adjustments make me worse but regular chiropractic care really makes a difference. 5 - drugs: I use fioricet and imitrex nasal spray (tried just about everything else out there - nortriptyline made me so tired I couldn't function) 6 - cutting gluten & dairy out of my diet COMPLETELY makes a difference. Have her try it for a few days - it can take a bit to take effect - but for me it makes a big difference 7 - I tried botox - actually made me worse As far as the fatigue goes - I'd be careful with the stimulants. I tried a couple different ones but they ended up making me feel worse. And it's false energy really - so she could be pushing past her energy envelope and then crashing from that. Unfortunately the fatigue piece of this is not easy to solve - not that any of it is - but I think it's the hardest piece and thre's really not any answer for it
  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 every 4 hours and no longer take that. I do have some painful neuropathy and the ivig has definitely taken care of that. sometims I can feel it wearing off and can't wait to get it again. I wear compression hose but I used to HAVE to have them on from the second I got up until I went to bed. Now I can hang out a lot longer (sometimes all day if I'm home) without them. My bowel movements have also improved since being on ivig - I attribute this to the suspected autonomic neuropathy in the digestive tract. I used to have to take miralax every day. I don't take it at all anymore unless i take a lot of zofran for nausea. I expect to be on this until we figure out something that might help even more! Which means it could be a while....insurance usually approves it for 6 months at a time and then you have to get it reapproved. I am switching insurance in january and am terrified that they won't cover it....fingers crossed!
  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 sure they are giving you saline with it - that can help with symptoms as well. I get 2 liters over the entire infusion. Good luck! ETA: I pre-medicate with 25mg of benadryl, 650mg tylenol and 30mg prednisone. I continue tylenol every 6 hours for a couple of days post-infusion to help w/ inflammation which can cause the headaches.
  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 imitrex. Other than that not a ton of side effects other than fatigue. I actually do get a little grumpy at some point though which is funny. If you think your dysautonomia may have an autoimmune component then it might help. My doc got it approved for neuropathy.
  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 fatigue' by supplements and vitamins and hormones. While all these things may help, they do not address the underlying issue of immune dysfunction. The top docs in the US for this are: Dan Peterson (near impossible to get in with), Incline Village, NV Nancy Klimas, immunologist, Miami, FL Paul Cheney (extremely expensive), NC somewhere Dr Enlander - NY I think Lucinda Bateman - Salt Lake City, UT Charles Lapp/Dr. Black - Charlotte, NC I may be missing a couple of others...but maybe if you can read up on these docs and their treatments then maybe you can find a doc to work with you? Personally I took the plunge and traveled to Miami to see Nancy Klimas - my pcp has taken her suggestions and works with her on follow ups, etc. All these docs offer some sort of immune treatment - either in the form of antivirals or immunomodulators or antibiotics or the such. Do your research at: forums.aboutmecfs.org - a forum that is light on the science but has many members so good patient experiences mecfsforums.com - an intensely scientific forum that also works on advocacy. Just an FYI - big personalities on both of these boards.
  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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