Sarah Tee Posted December 31, 2023 Report Share Posted December 31, 2023 As I’m going to be trying it soon, I’ve been trying to find research on hydroxychloroquine (HCQ) being used in POTS* or any dysautonomia, but so far haven’t found anything much at all. Is there a reason that HCQ wouldn’t be considered? I see studies of people being treated with IVIg, which, while often beneficial, has its risks, and wonder why they haven’t been tried on a DMARD first. Is it because DMARDs are useful for treating traditional muscle aches and pains, and POTS doesn’t really come with those? I also don’t see much on biologics being tried in POTS or other dysautonomia. (Please excuse me if this is an ignorant question. I am new to this auto-immune stuff.) * I don’t have POTS but there’s not much research on OCHOS so that’s why I’m looking there. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 31, 2023 Author Report Share Posted December 31, 2023 Ha, well, I just found a comment on another forum about someone with POTS being prescribed HCQ by Dr Grubb. They say they had tested positive for some of the antibodies he has been studying. Of course it’s just a forum comment but it makes me feel a little better. Edited to add: 21 people on this health tracking website report taking HCQ for POTS. If you scroll down, there are positive comments in its effectiveness and reports of side effects. https://www.stuffthatworks.health/pots/treatments/hydroxychloroquine-sulfate I also found that HCQ is sometimes used to treat anti-phospholipid syndrome, also known as Hughes syndrome, which seems to be connected to POTS: https://www.standinguptopots.org/resources/antiphospholipid-syndrome-and-pots Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 31, 2023 Author Report Share Posted December 31, 2023 Oh, and I forgot there are a couple of folks here taking it too, and a couple who have tried it but discontinued. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 31, 2023 Author Report Share Posted December 31, 2023 Just answering my own question: Dr Grubb is hoping to do an immunotherapy trial for POTS soon using Kevzara (sarilumab), a biologic. He talks about it in this lecture, from 2021: https://www.youtube.com/watch?v=P5xSgiwueHw (It’s mentioned right near the end.) Quote Link to comment Share on other sites More sharing options...
Pistol Posted December 31, 2023 Report Share Posted December 31, 2023 @Sarah Tee I was prescribed plaquenil by Dr Grubb. At that time they were trying to do a study on dysautonomia caused by innate immune system problems. Sadly these studies were halted by COVID. I took it for over a year but then stopped it because I did not see a huge benefit from it. I had to pay for it myself because it is not approved for use in POTS. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 31, 2023 Author Report Share Posted December 31, 2023 @Pistol, I’m sorry you had to pay for it yourself and that it didn’t end up helping. I am lucky in that mine will be govt subsidised as I am having it prescribed for “unknown rheumatological reasons” (having had two definite auto-immune diseases and my improvement in the OI symptoms with steroids). I really hope it works for me. I am coming to the end of my options. A few more calcium channel blockers, one of which I would have to pay for myself (nimodipine), and that’s about it, unless a knight in shining armour appears on the scene. I hope Dr Grubb can get his study going again soon. Quote Link to comment Share on other sites More sharing options...
MikeO Posted December 31, 2023 Report Share Posted December 31, 2023 @Sarah TeeI have seen the IVG drips used and have helped some folks but then has been prescribed as a hail mary as well. getting tested for autoimmune issues is telling. Over my time i have seen the body types that are indicative of a immune issues just like type 1 diabetics as well as some suggested POTS folks. I hope you can get some blood work done to ferret out some of this. My endo did look for some autoimmune issues but was not all inclusive. for some reason i get a feeling he still thinks i am more like a T1 and not a T2. he keeps testing me. Best of luck with your trial. don't know what else to say. Not a whole new therapies that are available and most seems to make one feel more ill than helps. been here. Keep working on what bothers you is my best advise. that is what Mayo does if you can even get in there. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted December 31, 2023 Author Report Share Posted December 31, 2023 @MikeO, yes, I have seen a case study in which Dr Novak, who discovered/named my condition (OCHOS), used IVIg on a patient. However, that person had a lot going on and I imagine was much sicker than me (probably hospitalised). I have had basic auto-immune/rheumatological testing, but nothing unusual came up. I’m glad your endo helped somewhat. Hope your insulin and monitoring continue to go well. I will keep on plugging! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 1 Author Report Share Posted January 1 Well, it remains a slight mystery to me why there are clinical trials, small studies and case studies of people with POTS receiving IVIg, but almost nothing on anyone trying DMARDs or biologics. Aren’t these often cheaper and easier to get than IVIg? Just wondering why specialists seem to go straight to IVIg in the immune area. I might email Dysautonomia International and ask. Maybe DMARDs and biologics just don’t target the right bit of the immune system? Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 3 Report Share Posted January 3 On 1/1/2024 at 8:51 AM, Sarah Tee said: Well, it remains a slight mystery to me why there are clinical trials, small studies and case studies of people with POTS receiving IVIg, but almost nothing on anyone trying DMARDs or biologics. Aren’t these often cheaper and easier to get than IVIg? Just wondering why specialists seem to go straight to IVIg in the immune area. I might email Dysautonomia International and ask. Maybe DMARDs and biologics just don’t target the right bit of the immune system? Good question. please post back if dysautonomia international gets back to you. i know the folks in the state i live in get the IVIg infusions and it's not just POTS folks (nOH and OI people as well) They don't get the infusions out of the blue and need to test positive for some immune tests (i see ANA come up frequently). Some folks respond and others do not. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 3 Report Share Posted January 3 2 hours ago, MikeO said: Good question. please post back if dysautonomia international gets back to you. i know the folks in the state i live in get the IVIg infusions and it's not just POTS folks (nOH and OI people as well) They don't get the infusions out of the blue and need to test positive for some immune tests (i see ANA come up frequently). Some folks respond and others do not. Positive ANAs in 2 different ways wasn’t enough for me to qualify for IVIG. My autonomic issues and HYCH didn’t help, either. I had to have a positive SFN biopsy, and I think my abnormal FGFR3 result also helped. I was never offered any kind of DMARD or other biologic, but then I could not find a reasonably helpful rheumatologist, either. It took years to get started, and it’s expensive and not enjoyable, but at least it’s helping my neuropathy. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 3 Report Share Posted January 3 1 hour ago, RecipeForDisaster said: Positive ANAs in 2 different ways wasn’t enough for me to qualify for IVIG. My autonomic issues and HYCH didn’t help, either. I had to have a positive SFN biopsy, and I think my abnormal FGFR3 result also helped. I was never offered any kind of DMARD or other biologic, but then I could not find a reasonably helpful rheumatologist, either. It took years to get started, and it’s expensive and not enjoyable, but at least it’s helping my neuropathy. Glad to hear you neuropathy has improved. Quote Link to comment Share on other sites More sharing options...
mehaller Posted January 3 Report Share Posted January 3 After waiting 17 months for the VA to mess up three blood samples sent to Mayo, I finally got the results - negative. So, no IVIG for me. Awaiting imaging guided steroid injections for L5/S1 stenosis to see if I can get back to exercising - which was showing some decent progress a year ago. If injections don't work, then it'll likely be surgery - which should be endoscopic. Every step through the system is so slow. Oh well. Curious to hear about hydroxy.... Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 3 Author Report Share Posted January 3 I’ll wait until after the holiday period to email Dysautonomia International, but I will definitely report back. In the meantime, I will post a few topics that people might find useful. Low-dose naltrexone (LDN) is a possibility for POTS patients, according to this article from Cleveland Clinic doctors containing six case studies. Three of the patients had a positive response: https://pubmed.ncbi.nlm.nih.gov/37706146/ There is one other case study, but the patient recieved IVIg and LDN: https://pubmed.ncbi.nlm.nih.gov/29326369/ (@MikeO, you might be intersted in this one because the patient was also treated for SIBO.) LDN appears to have an anti-inflammatory effect, plus other beneficial effects, none of which is well understood yet. It is being tried for chronic pain and auto-immune conditions. I couldn’t find any other case studies of LDN for dysautonomia, so this might be a hard sell unless your specialist is at an academic institution or established autonomic centre, or already prescribes LDN for other conditions. This rather ambitious study in Canada might change all that: https://clinicaltrials.gov/study/NCT05363514?cond=Postural Orthostatic Tachycardia Syndrome&term=ldn&rank=1 It is being led by Dr Satish Raj and will have 80 participants with POTS. That is huge for a POTS study! It is supposed to be starting January 2024 and finishing in 2026. The study will look at fatigue and cytokine levels, among other things. I would be interested in trying LDN if my trial of HCQ/Plaquenil doesn’t work out. I don’t know whether my rheumatologist has experience with it or not. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 3 Author Report Share Posted January 3 @mehaller, sorry to hear it didn’t happen, and with such a long wait. Have you felt better generally from steroids in the past? I felt better from my orthostatic intolerance and went into partial remission for three months after a short course of oral steroids. That’s what made me (and some of my doctors) realise my condition was auto-immune. Took me a year and a half to get to a rheumatologist though! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 3 Author Report Share Posted January 3 Also, here is a an article on LDN in post COVID: https://pubmed.ncbi.nlm.nih.gov/37804660/ Presumably some of the patients had orthostatic intolerance and other autonomic symptoms. (I haven’t read the paper.) I note that Mitchel Miglis is a co-author. He has given several lectures over the years for Dysautonomia International. I believe he worked with Dr David Kem on some very interesting research in the auto-immune area. Dr Kem sadly passed away in 2020, but his ideas and research have inspired many: https://dysautonomiainternational.org/blog/wordpress/in-memoriam-dr-david-kem/ Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 3 Author Report Share Posted January 3 IV albumin is another treatment that appears to have an immune-modulating effect, alongside its volume-expanding properties. (I wrote a long thread about this with lots of links that you can find by searching this forum.) It has been used with some success over the last decade or so for refractory POTS patients in Canada in combination with IV saline. Seems to be mostly given to paediatric (teenage) patients. Has to be done fairly frequently and comes with the problems of IV access. Quote Link to comment Share on other sites More sharing options...
MikeO Posted January 3 Report Share Posted January 3 @Sarah Teethanks for the posts. yes i have read this even my daughter was treated with LDN and it did not work. my take is i am not waiting for a miracle drug to help just like diabetes has no miracle cure. what one can do to make there life or try to make their life better works. for sure i am not waiting for a year or two to see a autonomia specialist just to be told to drink more water. been here... In the meantime folks should be working to help themselves. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted January 3 Report Share Posted January 3 I think LDN has made the biggest difference in my case. Thankful neuro was willing. It at least got me from housebound to be able to occasionally leave the house now. Still having significant problems with exercise though. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 4 Report Share Posted January 4 23 hours ago, MikeO said: Glad to hear you neuropathy has improved. I’m glad I am not doing further damage to my nerves. But this one was not in my top 10 problems, and the IVIG isn’t fun. I don’t feel like I have a choice, though. I’m too young to have this kind of progressive nerve damage. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 4 Report Share Posted January 4 19 hours ago, MTRJ75 said: I think LDN has made the biggest difference in my case. Thankful neuro was willing. It at least got me from housebound to be able to occasionally leave the house now. Still having significant problems with exercise though. That is so great! I hope many others get to try it. It didn’t help me, but that was about 8 years ago. I tried all different dosages. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 5 Author Report Share Posted January 5 @MikeO, I agree, we have to work on this individually, and also get help from other patients. I know that’s true to some extent for all medical problems, but I do find it hard having no medical support to speak of. I now have three medical conditions that are rare and are only able to be treated properly by a handful of specialists in the US or Europe. I can read their research, and watch their lectures, but the specialists here in Australia appear to be less educated than I am. Sadly I can’t do my own bowel surgery, write my own prescriptions, or order my own neurological testing. Too bad because I know exactly what the research recommends! (Okay, the bowel sugery would take practice. But there is a robot-assisted version in the Netherlands!) Quote Link to comment Share on other sites More sharing options...
mehaller Posted January 6 Report Share Posted January 6 On 1/3/2024 at 1:48 PM, Sarah Tee said: Have you felt better generally from steroids in the past I've only had an in-clinic steroid shot - basically injected me in the neighborhood. No results for the radiculopathy - at all. Next week I will get the long awaited steroid injected directly at the nerve location, CT guided. First time. I know it works for some - sis in law has had it twice for severe stenosis, each one lasted her about 3 years. Fingers crossed. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted January 7 Author Report Share Posted January 7 @mehaller, I do hope it helps. Fingers crossed for you! Quote Link to comment Share on other sites More sharing options...
Caterpilly Posted January 12 Report Share Posted January 12 On 1/1/2024 at 9:51 AM, Sarah Tee said: Well, it remains a slight mystery to me why there are clinical trials, small studies and case studies of people with POTS receiving IVIg, but almost nothing on anyone trying DMARDs or biologics. Aren’t these often cheaper and easier to get than IVIg? Just wondering why specialists seem to go straight to IVIg in the immune area. I might email Dysautonomia International and ask. Maybe DMARDs and biologics just don’t target the right bit of the immune system? I’ve been wondering the same thing! I’ve been growing worse for almost 30 years now. Still test negative on antibodies, even though I have signs of autoimmune, but it’s so hard to get access access to try anything. I know these drugs have serious side effects but when you’re doing so poorly it gets to a point where you need to try something. I finally have a rheumatologist who wants me to try plaquenil. And so I’ve been wondering all the same questions as you! And I wonder if this could have a somewhat similar effect like those in the small studies with IVIG. I also wondered if Biologics could ever help as well, but still can’t find any answers. Quote Link to comment Share on other sites More sharing options...
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