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  1. Today
  2. My ESR and CRP are normal too. I'm going in with an open mind and will bring any recommendations back to another one of my many doctors. I kind of had a hunch he might know dysautonomia because patients with AI diseases do get it. Of course lately I have severe rib pain that is restricting my breathing both in and out... I hate having something additional going on to muddy the waters, but the rheumatologist may be interested in it. Thanks!
  3. Yesterday
  4. Hi ladies. I found that Plaquenil hasn’t lowered my wbc except for cases where I am flaring or have had a cold. It’s more a DMRA drug than heavy biologic. @PistolI was pleasantly surprised that my rheumatologist knew about Dysautonomia. He explained that a few patients have it because AI and dys strike the same population. He wasn’t keen on IG therapy but my neurologist shared the recent research and is very persuasive. On the SCIG my recent wbc was the highest it’s been since I got sick. Like others have said he’s open to letting me experiment with steroid dosage. I have hydrocortisone which does cause tachycardia but haven’t needed it since I started the IG.
  5. Pistol thanks , I am content with whatever is ahead. I get another ct in 3 months, then 6 months. You hang in there too!!
  6. @RecipeForDisasterI am in the same boat. I have to see a rheumo for the first time since I had a severe AI reaction from a recent double ear infection. I had general AI symptoms for years but ANA and CRP was always OK ( ESR elevated though ). I am very concerned about seeing another specialist that is "just" educated in his filed, but may not realize about all the nuances of dysautonomia. I am scared that they may not realize the degree of medication sensitivity we have - so I will ask the rheumo to check with my autonomic specialist before starting any big-gun meds. I also get very bad from infections, so I understand where you ae coming from. I - in my case - have decided to hear what they have to say and then go from there. I hope you will find the rheumatologist to be kind, experienced and knowledgeable!!!
  7. @Pre - https://ww2.mc.vanderbilt.edu/adc/38932 this is the proper and current parameter for POTS diagnosis
  8. @freewill45 - I too recently had a CT scan and they found a nodule in my pleural space ( not the usual lung nodule ). I also have to wait 6 months ( October ) until they will recheck the CT. Just be positive and hang in there!!!!
  9. I as well have been diagnose with a positive N-type antibody. I had the test done twice and came back positive both times. My Neuro did EMG checking for Lambert eaton he says they were negative .So he schedule a ct of the chest. Turns out a 6mm nodule was found in the right lower lobe of the lung. Pulmonolist wont say its cancer till he sees if it grows. So now its the waiting game.
  10. Is it a heart rate increase of more than 30 BMP after 10 minutes, by comparing the pulse you have lying down and the pulse you have after 10 min of standing, or is it the comparison between the pulse when you first stand up and and the pulse you have after 10 min of standing?
  11. Keto makes me so fatigued now. I need some sugars or I'm crosseyed, fatigued and useless. But fructose spaces me out, gives me tremors and fatigues me. It's like walking a tightrope to keep the show on the road as best I can. I think I'm going to start monitoring my blood sugar. When I come out of an attack I'm craving salt and sugar. I think we also retain a lot of fluid at times due to the salts, dehydration, and general body confusion. When I'm bad my fingers feel swollen and fluidy - maybe that is something to do with your weight changes.
  12. Phew. Thanks guys. I guess I'm bringing the IV kit on public transportation in case they draw all that blood! I really don't want to be on the floor of a subway car. I do have mouth and nose sores.... usually achy in many places, but part of that is frequently falling and getting hurt. Malaise, absolutely. I used to have my ANA measured often and it never came up positive until about a year ago(consistently positive since then) . After a bit of a workup, and it "only" getting as high as 1:160, I was told not to worry about it. Then my Mayo test said I had immunofluorescence and to look for non-neurological autoimmunity. Suddenly I needed a stat rheumatologist referral. Sigh. I'm very hesitant to use immunosuppressants.... I do so poorly when I get any infection at all. I will do so if I have a reason to, though!
  13. Last week
  14. Ditto what @toomanyproblems said. My doc gives me a script for steroids and I take as much as a need when I need them. He trusts me to figure it out day to day. Autoimmune diseases with hyperPOTS is tricky. Buy a BP machine just to keep an eye on things. What happened with me (usually), is that the better my autoimmune disease is doing, the better POTS is doing. Maybe that will happen with you. I ended up on DMARDs for autoimmune so that I don't have to use steroids as much. Hopefully you get good results from the steroids and they can move you to DMARDs with steroids for flares.
  15. I've been in the categories of undifferentiated connective tissue disease and mixed connective tissue disease for decades. Lots of symptoms. They told me people usually definitively develop lupus or RA eventually but I have not. My mom has RA and I'll sometimes have synovial nodules and swollen joints but still not RA positive. Nevertheless, my last rheumatologist did treat me with both plaquenil and when that didn't help enough, imuran, which is a pretty big gun. The imuran really helped. I felt close to normal for a long time. Unfortunately, when I acutely developed more POTS symptoms along with CRPS, gastroparesis and a few other problems, the imuran did not help them. I don't take it now. There's just so much wrong, and the risk with the imuran is not worth it given the total state of my health. It was my choice. I just wanted to let you know there's a wide range of willingness to treat based on the rheumatologist. My guy was the head of a large dept at a large well respected facility. I think he just had enough experience and confidence that it was the right thing to do. Sadly, he's since moved away. Good luck to you!
  16. I was sero negative for any autoimmune disease for thirty years before my ANA came up positive although I suspected AI for all of those years. Nobody would treat me until I had a positive one. I had a number of low level results but nothing positive enough for a definitive diagnosis so am labeled UCTD or MCTD depending on what my rheumatologist feels like calling it. I started on Plaquenil and that helped with fatigue, malaise, joint pain after about 6 months. Not tremendously but certainly noticeable. It has done nothing for BP/hr. My advice for the first visit is bring up every ache, pain, low grade fevers, mouth sores, malaise, dry eyes, joint pain, foot pain that you have. I never realized that the foot pain that had me buying new, expensive shoes was because my joints were swollen. I wasn’t terribly aware that my finger joints were swollen either but I knew I couldn’t get certain rings on my fingers anymore which was also a clue to him. In my experience rheumatologists are generally conservative and don’t want to treat without positive labs. I also have a positive on the Celltrend panel and my neurologist convinced my rheumatologist to allow SCIG. My choice of SC over IV because I already have migraines and am afraid of the aseptic meningitis. That’s helping a lot now too with AI symptoms but like Plaquenil, it’s taken several months. Still little effect on BP/HR but I am blood pooling less and BP/HR are reasonably stable. They will likely take blood unless your blood test results are recent. I had a number of tubes taken to rule out anything else and to test for further AI disease. It wasn’t the 24 I had taken by my neurologist to rule out everything for my diagnosis of dys but maybe 10-12. In my experience it seems that they make money off the blood work so everybody orders new tests. Please let us know how it goes.
  17. JimL


    No I haven't. Prior to my issues, I was doing Keto for 16 months and lost over 160lbs. 170+ at one point. Funny thing is since about 6 weeks after my neck surgery, I've put on 10 lbs, maybe a bit more. According to the HIGI machine at the supermarket, I've also gained about 6lbs LBM since my neck surgery. I am starting to wonder if my cervical issues have caused all of this. Doesn't explain the diplopia though.
  18. Yep. I am at my best when I am snacking every 2 hours. If I leave it any longer than say 4 hours I hit a wall and that's it for the day as I am totally faint, tired and exhausted.
  19. @JimL and @misseb: have you tried to cut down big meals and do 6 small snacks a day? This has helped me greatly for my dysautonomia related GI issues ( nausea, fatigue, post-prandial hypotension and syncope, hypoglycemia ) and I have even gained weight with it!!!
  20. Interesting. Unlike most POTs sufferers I am safer with what I eat earlier in the day than later. It gets more dangerous as the day goes on too. Last time I ate a large evening meal it put me in bed for two days. I have also observed that sugars are a problem, fruit especially, it's as if I am collecting fructose and sugar as the day goes on making me awful by the afternoon. My SIBO test was negative. Have you looked at SIBO ? Also something is happening in the night. I have read that mast cell activity is increased by the chemicals our bodies admit to aid sleep. I get really bad pains and cramps in my legs and huge adrenaline surges when I sometimes lie down. I have MCAS too. I had an MRI scan today on my small bowel for gastroparesis.
  21. @Clb75, @toomanyproblems: thank you so much for responding, you have given me a lot to consider before talking to my doc tomorrow. I truly appreciate your Input!!!
  22. JimL


    I have the most problems during and after my third meal. I wonder if I have some sort of gastropareisis. Not full blown, but slows stuff down enough to cause problems.
  23. I hear you on the reacting to everything you eat. I've had 5 weird heavy heavy fatigue unable to move attacks in 10 days, all food triggered. I am down to oatmeal too, and some white fish and salad. And small amounts or over the edge I go. Been looking for meal replacement drinks but there's so many triggers and gums in them I'm at a loss. Also unable to eat after 4/5 pm or the next day is a brain fog, light sensitive, in bed heavy fatigue right off. Pushing to see another GI specialist as can't get anyone to take me seriously.
  24. Even if they don't connect them, it seems like something else is wrong with me overall, so I'd really love them to find it. My expectations are pretty low, but I don't really know where else to turn for help with diagnosis and treatment (and I really don't love having autoimmunity going on unchecked). Thank you!
  25. I should add that some steroids have less mineralocorticoid activity than others. The ones with less will probably affect your BP less. However, the ones with less are stronger and last longer like dexamethasone, so there's a trade off wrt to weaning time.
  26. I have Sjogren's syndrome along with several other autoimmune conditions. Because one of them is Addison's, I have to do my own steroid merry-go-round on literally a day to day basis. My Drs just give me plenty and cut me loose and trust me to manage myself. I've been doing this over thirty years. Your individual response wrt BP will be dependent on many factors so it's really hard to predict. I likely have hyper POTS and my BP can be either too low or too high seemingly completely unrelated to external circumstances. I'm currently in a too low BP phase and I've been taking either increased Pred at about 20mg or injecting extra hydrocortisone at 10-30mg (and sometimes 50mg) depending on how I'm doing. Sometimes it raises my BP, sometimes not at all. (I'm taking the increased steroid for other symptoms not the low BP; they just happen to be accompanying the low BP.) I also get IVIg every three weeks, which, that alone tends to raise BP because it's very viscous. I also normally increase steroid around that time due to brain swelling I get as an adverse effect. Sometimes the steroid as IV before infusions (though it's still just my solu-cortef which is not as strong as the dexamethasone the above poster might be getting), sometimes oral (pred), sometimes injection solu-cortef as needed. Again, sometimes all of it causes increased BP for days sometimes not. Like cycle before last right after IVIg my BP was usually 140 something over 100 something first thing in the morning and the diastolic went higher as the day went on. This went on for days. This time it's 100 over 60 type of BP first thing in the morning and can drop to cause presyncope and SOB as the day progresses. When my BP decides to drop, it doesn't fool around. I've had times where I've gotten numbers like 50's over 30's and this is once I've made it back to the bed from a syncope episode so who knows how low it actually was. And more recently was passing out and managed to catch it at 52 over 40 while still standing. Sorry, I'm rambling, but my point is, my BP can vary wildly and extra steroids may affect is at times and at times it does nothing. Even extra florinef does nothing at least not for days. Another point is my Sjogren's waxes and wanes too, irrespective of steroid dose. Because of this, I don't know if I could tell if the steroid was affecting it or not. Mine may be improving because of IVIg but I became very symptomatic and peaked while on IVIg so IDK. Good luck with your decision. I'm not sure trying it would throw me into anything bad for a long period of time. Maybe it won't do it to you either. The Sjogren's symptoms can certainly be way more serious and debilitating that just dry eyes and mouth like you read so I understand.
  27. I have high plasma NE on standing and I'm on a high salt diet, too. I think the important point is why your NE is high. Is it high because your body is trying to compensate for low blood volume or excess veinous pooling? That is a different situation from primary hyperPOTS, where your body just makes lots of NE for no reason.
  28. I don’t have hyper pots but do have labile BP. Certain meds can send it through the roof as you say. I get a dose of IV steroids after my ivig infusion. The first dose I started at half the regular starting dose but it still shot my BP up by 20 points and stayed elevated for hours. It took 3 months for it not to react and to titrate up to the regular dose. I just started an oral steroid before the infusion but didn’t react to it, probably because my system was already used to it. Granted an iv dose is more potent than an oral dose, but I would be careful. Can you start at a lower dose and taper from there? My oral dose was supposed to start at a 40mg taper over 4 days but I started it at 30mg the first time, then went to 40mg the next time.
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