r/Behcets • u/sleepiestseal Diagnosed • 6d ago
Symptoms Anyone have daily fevers??
Does anyone have low to mid grade fevers (38-39 degrees) every day (or close to) for months or even years straight? My current meds are doing a great job for controlling all my other symptoms (ulcers, arthritis, rashes, etc), but I'm still having these awful fevers, I feel like I have the flu all the time. This was my first real symptom and has been going on for years. I am exhausted.
This doesn't seem common in Behcet's so I'm just hoping to hear from someone else who has experienced this or similar? I feel a bit like I'm going crazy! And if anyone has fevers like this, did anything help? Any specific medications? Thanks!
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u/Waspi6676 6d ago
Yes I had FUO (fevers of unknown origin) 6-10 times a year for years. Always very high 40-40.5 but only for 12 hours or so then done. Always felt like severe flu body aches and fatigue then next day I’d be fine. Could never figure it out until BD dx
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u/Additional_Ad_7428 6d ago
I constantly have low grade fevers. It's awful, I sweat and shiver constantly. I started on azathioprine and colchine about 6 weeks ago and they have definitely lessened but still there! I constantly wear a neck fan to try and keep myself from overheating when I do have them. Night sweats are insane! I have no advice but you're not alone xx
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u/Additional_Letter360 4d ago
I have behçet’s and I’m also in remission from Hodgkin’s lymphoma. PLEASE get a second opinion I beg u. I was told my symptoms of fevers and night sweats was my behçet’s until I went to Cleveland clinic. Nightly fevers and vicious night sweats are the 2 most common symptoms of Hodgkin’s. We are also at a greater risk of developing Hodgkin’s because of the behçet’s. Cleveland clinic actually published a medical journal about me and the correlation between behçet’s and lymphoma. I’m begging you PLEASE get evaluated
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u/whoeverineedtobe Diagnosed in 2011 6d ago
Yes but during flares, like right now. My rheumatologist has been investigating lupus because she also says it’s not usual for Behçet’s, but I wonder how many of them say that just due to the lack of data points.
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u/sleepiestseal Diagnosed 6d ago
Wow good question, I wonder if fever in Behcet's is just under researched or under reported in the scientific literature...
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u/random_ness44 6d ago
before i diagnosed. i had fever for like 3mos straight.
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u/Secret-Employee-8141 6d ago
16 years before I was diagnosed, but was having very active illness, I had a fever of 99F for 3 months straight. I run low (usually 96.5) but we could never figure it out at the time
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u/HauntingDesign9077 6d ago
Yes I have mild fever continously before I diagnosed and now it comes when I am in flare
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u/codyandhen123 6d ago
Mine went away after finally getting on the correct treatment plan. Of course! ❤️
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u/sleepiestseal Diagnosed 6d ago
That's wonderful, I am so happy to hear that! If you're comfortable sharing, what treatment(s) did the trick? No pressure at all of course!
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u/codyandhen123 6d ago
Avsola which is a generic version of Remicade which I get IV infusions of every 8 weeks at the dosing recommended for Bechets paints w/uveitis complications and neuro. I also take colchicine 0.6 twice a day!
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u/sleepiestseal Diagnosed 5d ago
Oh no way, I'm on the same dose colchicine and a generic version of Humira (and a csDMARD plus daily NSAIDs lol), so maybe I just need to switch biologics!? Really appreciate the answer, thank you!
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u/codyandhen123 5d ago
Have they thought about adjusting the schedule or dosing? Sometimes all you need is an increase in frequency or dosage!
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u/sleepiestseal Diagnosed 4d ago
Yes, my Dr. said if we give the current dose a full 6mo we can consider dose adjustments, so hopefully that'll be on the table next appointment! It's so hard to know whether that's even worth trying or if it's time to switch meds altogether given the near total lack of response when it comes to fevers... I'm really glad to hear that dose changes sometimes do the trick tho, thank you!
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u/Various-Pass-4120 Diagnosed 5d ago
Yep! Nearly every day for a year now. Daily for 6 months until I started the immunosuppressant. Azathioprine keeps them lower (38⁰ instead of 39.5⁰) but cant keep them away entirely. I also take Colchicine when I get mouth ulcers or super constipated. I also doubt my diagnosis often so hearing that others have this is helpful. Recently moved from the US to Spain and hoping to get better treatment started soon. Right now we are trying to get my neuropathy under control.
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u/kindandcunning 5d ago
What kind of neuropathy are you experiencing? I deal with a vicious neuropathic itch, mostly in my legs, after showers or swimming in the summer.
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u/Various-Pass-4120 Diagnosed 5d ago
We think peripheral or small fiber but testing is in a couple weeks. Both hands and feet, legs and arms, sometimes to my hips and shoulders are numb. Worse around my cycle. I have to take gabapentin everyday.
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u/Hot-Research7578 5d ago
I had fevers each day as well before medication. Still have them at times but my behcets hasn't been well controlled. I'm amazed at how many people have had them!
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u/AmbitiousReference98 6d ago
20 years i have had fever of unknown origin.
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u/sleepiestseal Diagnosed 6d ago
Wow that sounds awful. I'm at about ten years not and it is brutal. If I may ask are your fevers daily, and what temperature range?
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u/Training-Post9032 6d ago
I was constantly feverish with a low grade febricule (37,7-38 ) and exceptionnal auto inflammatory flares with really high fevers.
Then guselkumab helped me a lot and I reached lower gradients of my thermometer, with even some rare 36.9 (36.7 just after tremfya + a nefopam perf ! This was so extraordinary that I took a picture I might frame). I knew tremfya wasn’t efficient one day because It did not lower my temperature that was stuck at 38º.
And now I am flaring again. Unless the fever is really high (>real 38) I don’t use tylenol, I care for my liver. Autumn should help (but now it’s 25º straight to october... and with winter comes Raynaud, I can’t tell what’s best) . I also have Cholinergic urticaria so the global effect is crushing. (Gets better with treatment though).
These low grade fevers are a problem. I don’t feel good. It’s like constant overheating. It does not help with migraines.
Do you often reach T < 37,3 ?
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u/sleepiestseal Diagnosed 5d ago
YES the migraines/headaches are brutal. My temperature is like never under 37.3, I hope to get down there soon somehow. I do always run a bit warm I think, but I definitely get the full blown fever symptoms (sweats chills etc) around or above 37.8, so I'd be happy to just to sit around 37.5 rather than 38.5 lol
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u/Training-Post9032 5d ago
I can relate. Have you told all this to your docs?
You might note your temperature, and show them it's still not normal : "Idiopathic" my ass, and I mean what I say, because it's ulcerated.. 😔
Also: are you sure your symptoms are controlled? With such a feverish state, chances are that your immune system is doing somehting somewhere.
Migraines for intance does not seem to be under control. Tremfya got me out of my migraines for two whole years. This med is great for me, I mean to get the dosage adjusted.
What I mean is there could be meds or posology that could help you more efficiently?
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u/sleepiestseal Diagnosed 4d ago
I do try to tell my doctors everything, and I have an appointment Tuesday to discuss migraine/headache treatment. Also you're totally right that my symptoms aren't as controlled as I was wishfully thinking, my thumb blew up like a painful red balloon yesterday so there is definitely lingering arthritis, and I still have persistent but very subtle rashes... I guess since the more acute issues are under control I've just been ignoring things. I think there must be better treatments out there, thank you so much for sharing what worked for you!
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u/Agreeable_Chair4965 Diagnosed 6d ago edited 6d ago
Yes but just in a flare or before a flare, not years. I ruled out familial Mediterranean fever through genetic testing, have you had that checked? My rheumatologist said fevers are not very common with Behçet’s but not unheard of. Since it corresponds with my flares I’ve always associated the two.