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I know, lol. I’m on several, so it’s been inconvenient when I’m trying to get my meds all at once. They did say that you can fill it earlier with a doctor’s authorization, I just haven’t tried it yet. 

I’ve been on gabapentin for years, but it’s prescribed by a neurologist for a separate autoimmune disease I have that causes neuropathy. The only issue I have had is that the pharmacy will now only let me refill it every 29 days, where as before I could fill it a few days or even a week ahead of time. 

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I’ve been on acebutolol for several years now and have had a good result without any side effects. I tried atenolol and betaxalol before that but had problems with both. I agree that it’s definitely trial and error, hopefully you’ll find something that works.

Wow, sorry it’s been so difficult for you. I hope you find a solution.

Hi,

I’ve had a port for a few years for ivig due to CIDP. I don’t have any experience with home infusions, but the port has been really helpful and made the infusions easier. My veins were getting bad, before I had it placed the nurses had to stick me around 7 times before they got a vein that would work. 

Have you considered a picc line? If your doctor won’t go for a port, maybe they would consider a picc line instead? Though I think it’s easier to get an infection from a picc compared to a port. 

Another thought...have you tried looking up journal articles about saline therapy in pots? Maybe if you come across several articles justifying saline therapy, it could help change your doctor’s mind. 

Hi,

You can make a new post by clicking on the start new topic button at the top of the page. A new screen will come up and you will see the subject line along with the area for writing out your post. Just click submit when you’re done and it will post to the site.

Thanks for the heads up. I’m sorry this happened to you, it’s a shame what some practices will do in order to get more money. Do you have any way to fight this? What about the state department of health or whoever accredits hospitals in your state? You can maybe report them for unethical billing practices. It seems that they shouldn’t be able to charge you the uninsured rate when you do in fact have insurance. 

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Yes, I think losing blood volume is very important to consider! My neurologist doesn’t think plasmapheresis would be a good idea for that reason. Plus it’s very invasive, he told me you have to get a catheter placed plus the first treatment is on an inpatient basis for about 10 days. You’re right about this being a new avenue for pots patients, I’ll be very interested to see how this develops, especially now that the antibody test is available from Germany.

Hi,

I have CIDP, it causes motor and sensory neuropathy. I had it about 2 years before I got POTS, and I suspect the small fiber nerve damage from it along with it being autoimmune in general may have been a trigger for my POTS though I don’t know for sure. Ivig has been working great for CIDP , it just didn’t do anything to prevent the onset of pots or help me now that I have it. Ivig is very hard to get insurance approval for, I think it’s smart to get the test for the antibodies so you will have more evidence to push for a reason to try Ivig. 

I’ll check out the link, thanks! Hopefully the shipping is sorted out, Good luck with everything!

Would you mind posting an update once you get the results? I’ve been curious about this lab, and would love to hear about any positive results they may find and how the experience was trying to ship everything over there etc. 

I’m also curious to hear about the next step people are taking once they find out they have the antibodies. I’m already on ivig for a separate autoimmune disease, and it has done nothing for my pots symptoms. I’ve been housebound for 4 years now, and had ivig for 2 years before I even developed pots. Maybe the dose would have to be increased or maybe it’s just not a fit in my case, not sure! Anyway, I would love to hear about your experience with all of this. Thanks!

Have you looked into gabapentin for neuropathy? It’s commonly used for it and may be helpful. 

Glad the forum has been helpful, it’s always nice to connect with other who understand what you’re going through!

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I’ve been on it for 4 years now, no one has mentioned a time limit , I wonder what the reasoning is? I was told the same thing about it being a “different” type of steroid. I forget which is which, one is a glucocorticoid and the other is a mineralcorticoid. Florinef doesn’t typically cause the problems regular steroids do such as diabetes, weight gain, osteoporosis etc. 

Maybe the doctor is concerned that it replaces the natural ability to produce aldosterone? It’s a shame that once you find something that works they want to take it out of the mix. Your daughters have been through so much already. I don’t think the doctor understands that finding a new med could really destabilize what little stability they have and upset such a delicate balance. I hope they reconsider.

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I posted this in a similar post several weeks ago so forgive me if I’m repeating myself  . Dr. Raj from Vanderbilt has written an article on this. He refers to it as “dependent acrocyanosis”. He states that it is due more to poor blood circulation under the skin rather than blood pooling per se. You can google his name and the term dependent acrocyanosis, and the link to the article and pictures of peoples legs come up. 

I know it’s frustrating and can be quite the balancing act. I’m glad you found the site and hope you find some relief for your symptoms.

Welcome, glad you found the site!

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