HOTLIKEFIRE Posted April 22, 2021 Report Share Posted April 22, 2021 19 hours ago, Pistol said: @HOTLIKEFIRE - have you been checked for Viral infection like Lymes disease etc? My test came back positive ANA , they tested for lime and others and was negative however my doc is convinced it’s an auto immune ,in my area I was referred to a neurologist and rheumatologist and I won’t be able to be seen until September, so I must sit and suffer like it appears so many on this forum have. I have constant low grade fever , trouble sleeping, trouble eating,sore throat,lost smell and taste twice ,always very tired and weak ,nauseous,blurry vision,headaches , etc... On top of all that was diagnosed with leukemia this year also, however my blood numbers are good and my oncologist is positive this has nothing to do with my cancer. Everyday is miserable just praying for the day I get some relief ..... Quote Link to comment Share on other sites More sharing options...
p8d Posted April 29, 2021 Report Share Posted April 29, 2021 @JFBMight The rheumatologist Be willing to let you try plaquenil for a few months (it takes that long to work) or a short course of steroids to see if it helps? If it does it should indicate an autoimmune disease and then they might treat for sero negative autoimmune disease. Some Drs will do this, many won’t. Quote Link to comment Share on other sites More sharing options...
JFB Posted May 3, 2021 Report Share Posted May 3, 2021 @p8dthat's so interesting and a great idea! Definitely going to ask my doctor about it if I don't have any improvement with the current treatment. He did have me try colchicine while we were waiting for my genetic testing to come back in case it was FMF. It didn't work, but hopefully that means he'd be willing to try this. I have such a hard time comprehending how I've had these fevers daily for over a year - I feel like my thermostat is broken 😂. I really appreciate your help! Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 4, 2021 Report Share Posted May 4, 2021 @JFB - yes, I agree with @p8d. I hve been on Plaquenil for 5 months now and have seen a definite improvement of joint pains and fatigue!!!! Quote Link to comment Share on other sites More sharing options...
Goldfish Posted May 5, 2021 Report Share Posted May 5, 2021 Hi! I have low grade fevers (98.7-100.3) all the time; almost weekly. They typically present themselves as 24hr colds but make POTS symptoms worse for the following 2-5 days after. Pre-POTS-diagnosis in 2019, I got sick often but not as often as now and symptoms were closer to that of a typical cold. I wonder if this is something that is related to POTS and if there is anything that can help with it. Like many of you, I have had many a tests preformed, all coming back negative which is SO FRUSTRATING when communicating symptoms and issues. Looking forward to finding resources and connecting with people on this forum! Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 5, 2021 Report Share Posted May 5, 2021 5 hours ago, Goldfish said: I have low grade fevers (98.7-100.3) all the time; almost weekly. They typically present themselves as 24hr colds but make POTS symptoms worse for the following 2-5 days after. @Goldfish - it can be caused by POTS but it also can be caused by underlying inflammation or viral infections. Many people have ongoing problems after certain viral infections such as Mono, Flu etc. These days of course there is the possibility of a previous COVID infection. Sometimes viral complications can be seen in blood work and sometimes they cannot. Low-grade fevers such as you describe can have immune causes. The fact that you get sick often is also indicative that there is an immune problem, not necessarily auto-immune in nature. It may be a good idea to see an immunologist or rheumatologist, they are most knowledgeable in this area. There is also a chance that you may suffer from allergies - have you ever been checked for them? If your body is constantly fighting allergens it can cause ALL of the symptoms you experience. Quote Link to comment Share on other sites More sharing options...
Roxy Posted May 5, 2021 Report Share Posted May 5, 2021 What about mcas, that is also another possibility for the fever Quote Link to comment Share on other sites More sharing options...
JFB Posted August 19, 2021 Report Share Posted August 19, 2021 On 5/3/2021 at 7:22 PM, Pistol said: @JFB - yes, I agree with @p8d. I hve been on Plaquenil for 5 months now and have seen a definite improvement of joint pains and fatigue!!!! @Pistol & @p8d my doctor decided to put me on plaquenil (yay!), which I started about 6.5 weeks ago. I’m currently taking 200mg 1xdaily but it seems like I could probably be taking more for my weight. Do you recall around what point you started noticing a difference with the medication? I keep reminding myself to be patient, but it’s hard not to feel desperate sometimes. It’s been about 19 months of the low grade fevers and other symptoms. I wish someone could figure me out! Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 19, 2021 Report Share Posted August 19, 2021 @JFB - It took a long time before I noticed something, at least 3 months. I was told it would take at least that long. Today it has been almost 9 months and I am still doing great. I don;t even have ANY joint pains or swelling at all anymore, and I was able to decrease my beta blocker as well. --- Give it time, some people say it takes a lot longer than it took me to feel a difference. Quote Link to comment Share on other sites More sharing options...
p8d Posted August 20, 2021 Report Share Posted August 20, 2021 It took me many months, 6 or so because I had to very slowly taper up the dose due to digestive issues. I think we started at 200mg twice a day and I weighed about 105 pounds. I am now at 300mg/day after the swelling and pain went down. That was after about 2 years I think. I still get flares of pain and swelling if I overdo it so be aware of the possibility. The half life of Plaquenil is incredibly long, in the order of months so it takes a long time and usually dosage changes to see the benefits. I know it’s hard to wait! Quote Link to comment Share on other sites More sharing options...
likdscole Posted September 16, 2021 Report Share Posted September 16, 2021 i was recently diagnosed and i’m experiencing the same symptoms. looking online for anyone relating. not finding much info but i do know that body temperature deregulation is common in pots Quote Link to comment Share on other sites More sharing options...
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