dsdmom

@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.

@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!

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?

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

What doctors are you referring to here?

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.

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

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

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...

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?

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.

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

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.

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?