Night sweats (and day sweats)

[Pink75928]

Morning! Just a quick question. I’ve noticed since I’ve been on methotrexate (4 weeks) I absolutely cannot tolerate heat whatsoever. Having been a sun worshipper all my life this is really strange to me. Shopping with a mask on in what I would usually call moderate temperatures like we’ve had is unbearable. My hair ends up soaked through. Is this a common side effect anyone else has had? I usually don’t mind wearing a mask at all, but wondering if this would qualify for exemption? Xx

[medway-lady]

I don't know if this is the same but MTX made me feel like I was on fire inside and it spread from the tummy to my head. Very strange as it wasn't hot nor a flush etc. I told RA consultant as my hair fell out in handfuls and it was stopped. So might be worth keeping an eye on and talking to RA team. I was told super sensitive to it and other medications were better for me so went onto LEF and remission.

[Pink75928 in reply to medway-lady]

My hair is falling out at a rate as well. The rheumatology nurse advised me to cut my MTX dose by half for a couple of weeks to see if that changes anything as I get really bad headaches too, but I hadn’t mentioned these side effects to her. Maybe I’ll call again tomorrow.

Ps. I presume you’re in Medway? I am too x

[medway-lady in reply to Pink75928]

Yes I am ! On the Hoo Peninsula so the MMH as well. Your welcome to pm me. x

[Hidden]

Yes I get these . Over time I’ve come to realise they coincide with disease activity. If my disease is active then the sweats are a nightmare also I’m incredibly hot too touch . I blame the inflammation . When my RA behaves everything settles down. I too use to love the sun but no tolerance for it now . I went undiagnosed for years and suffered with the heat so I don’t blame the MTX. I too lost some hair . I started to take high dose biotin and marine collagen it really made a difference for me . X

[Pink75928 in reply to Hidden]

Thank you. Perhaps it is the inflammation. I’ve had this for at least 3 years untreated and I haven’t experienced low inflammation levels yet. So I don’t really know what that feels like. The hair situation is quite humorous to me and my daughters at the moment as my blonde hairs get everywhere. But I should probably take a supplement

[Deeb1764 in reply to Pink75928]

I did Biotin and Marine Collagen capsules and within 3 months my scalp and bald patch were back to normal and now take it daily however I drop hair everywhere too and hubby always moaning hair is everywhere.I too have soaked hair and night and day too just rages thro the body but they say RA has a low garde fever so assume it is to do with this as well.

[Mmrr in reply to Hidden]

Similar to J1707, the uncontrolled RA makes me hot and sweaty, unbearable at times. It might be worth mentioning again to rheumatology.

[RAMumm in reply to Hidden]

Hi, Can I ask which brand you take of marine collagen and biotin please? I’d appreciate it!

Thanks

Rach

[Hidden in reply to RAMumm]

Hi. I take marine wild caught collagen. It comes in both tablet or powder form. Biotin I just go for maximum dose no particular brand . I like the spray but can’t get it at the moment. X

[Summerrain14]

I have had awful night sweats too and now wondering if MTX caused them as I had to stop MTX in December last year and no more sweats even though my RA is far from controlled at the moment but no longer have sweats. 🤷‍♀️ xx

[Wobbies in reply to Summerrain14]

Great to hear from you Summer, how are you? Progressing well, I hope. That heat thing really gets to me. IN my case it is the Rd, as i had it before MTX. Went the whole winter with just a blanket and bedspread on my bed and now just a sheet. Have to keep covered in case of mosquitos. 😂

[Summerrain14 in reply to Wobbies]

I’m on the road to recovery thanks lovely. So sorry your RD is the cause of your sweats. I think you are very right along with anyone else who has this as part of the RD. I think I have an element of this but MTX seemed to make things worse for me sadly. Wouldn’t blame it on the MTX altogether though as that wouldn’t be fair and MTX is such a good medication for some many people. xx

[Neonkittie17]

I’ve never had any sweats from Mtx day or night and I’ve taken it for years, but not sure if current night sweats since end of 2014 are Rituximab (night sweats posted as a side effect) or fentanyl patches (also states this too) or post meno. Docs can’t fathom it either. I can get overheated during the day easily but not sweating. I just think the combo is the collective cause for me but thought worth mentioning some pain relief on a higher level can cause sweats too. Seems to much of a coincidence for you for it not to be it Mtx? Hope it passes and it’s temporary.

[AgedCrone]

If you can bear it……give it a few months…the early side effects like overheating…especially your head….can take a good while to settle down…& if Mtx suits you it really can control your RA very well.

I had a good few very well controlled years on it & at first just my head did perspire …..especially at night…..but that settled & I hardly knew I had the disease.

It seems if you change a Dmard after just 4 weeks …it could start a trend of chopping & changing that doesn’t bode well….it’s certainly not easy…..but it can be worth it.

Do discuss it with your rheumy nurses…they are very good a working out how to proceed.

[Neonkittie17 in reply to AgedCrone]

Yes, agree re the possibility could have a different side effect, from other meds you change to and may be told to try get through them and then the med should work well. I had sickness from oral Mtx but no side effects from sub cut. I’d say too try and see if they subside. I’m hoping they subside for Pink, just as they did for Summerrain. 🤞🏻

[AgedCrone in reply to Neonkittie17]

Yes…..If you read back over the years on here it does seem those who come off their first DMards a bit quickly…that encourages coming off the next & the next quickly too & before you know it the cocktail that has built up…..confuses everything.Twenty years ago when there weren’t the choices we have now,I think we were encouraged to try to cope a little bit longer.I think back then too…..maybe we had more Rheumy staff to talk us through than are available now?

I remember throwing up every day for 12 weeks on SSZ….it never did work..but I felt I gave it a good try.

I still reckon if my present meds give up on me…..I’d give the next offering at least that time to make really sure it wasn’t for me….I wonder is it better toughing it out on a 3 month try, than ending up changing too often & still not finding a successful drug?

No one seems to have worked that out yet.

[Neonkittie17 in reply to AgedCrone]

Yes, when I was diagnosed with RA in 1995 there was much less choice of meds and I started on SSZ. I felt nauseous but I felt so bad anyhow due to uncontrolled RA, I stuck with it and rode it out. It wasn’t a severe reaction and my rheumy said the same thing about moving through meds too quickly if you didn’t see if a non severe side effect wore off. A few months after I started SSZ and before bloods were behaving, my rheumy nurse (who was a senior research sister in rheumatology) asked me if I wanted to be involved in a trial in Leeds with Professor Emery for Enbrel. She worked with him many years before her transfer to my local hospital. She said I know it’s a big jump from a first line RA med to this but ....

I said no but thanked her as it seemed too big a jump. Too scary as I’d only been diagnosed a few months. Many years later I was offered Enbrel as an anti TNF when SSZ had waned and MTX alone not holding RA back enough anymore. Enbrel worked like magic within 2 hours but lasted only 6 weeks before it stopped working. Huge site reaction too all the time.

So you can go through some meds very quickly in that way with them not doing enough. Humira was the same but I persevered and got awful finger joint damage and crazy inflammation levels. I was conscious of Enbrel and going through two anti TNF’s within 6 months and felt the ... What if I speed through all is available to take? There weren’t the amount of meds we have now even 15 years ago. We have a much better range of meds today.

[AgedCrone in reply to Neonkittie17]

Although we didn’t have the choice of drugs all those years ago, I don’t think Rheumatologists were as keen on throwing multi drugs at us as fast as they are now.I’m convinced taking too many drugs together too quickly often makes things worse…but rheumy appointments are so few & far between these days….to stand your ground & proceed slowly is often impossible.Personally I thought it was all a fuss over nothing…& “all my symptoms would go away as soon as Rheumy prescribed the right drug”…at which point the dreaded Pred entered my life…& thank goodness it sent me loopy..so I never fell into that trap…..

I have been very lucky with my rheumatologists..& have never been prescribed more than one drug at a time… as my first rheumy said I appeared to “have stamina but a delicate constitution” I felt like telling him “there is nothing delicate about throwing up every day for 90 days”!

But I accepted his advice & stayed on most of the prescribed Dmards for at least a few months……I then took to Mtx like a duck to water for years …..until it just stopped working…& now have ended up very successfully on Rtx…for the last 5 years….but from previous experience I’m not complacent & know that it could suddenly throw up problems too.

I accept I’ve got RA for life…..for me it’s a case of making the best of a bad job…& living life to the full….. …for what’s left of it !!!

[Neonkittie17 in reply to AgedCrone]

I’ve been lucky with some excellent meds and doctors but joint damage happened before proper diagnosis. I think they like to give double or triple therapy more these days and I know many on here have that successfully. I’ve been fortunate that 3 meds have lasted a total of 24 years.

[Soundofmusic52]

I to get hot flushes so came off methotrexate for a while and I still have them so it could be the Benepali I’m on but I won’t give that up for nothing so I have to live with the sweats or the pain !! I no what i choose were all different hope you get over the sweats good luck

[Neonkittie17 in reply to Soundofmusic52]

Could it be strong painkillers like opiates contributing to the sweating?

[skinnycappuccino]

Heya Pink75928,

I'm the same, I can't tolerate heat anymore! And it doesn't have to be "heat" as such, I used to be drenched in sweat when I went to the hospital because the heating there is too warm for me.

I've never really made the link to my meds but reading your post I'm wondering! I used to have bad night sweats on Prednisolone - I'm back on steroids now after 7 years off them and so far no problem, thankfully. I'm not on MTX but I suppose all kinds of meds could cause excessive sweating. I don't sweat as much as before but I still can't tolerate heat well - makes me feel quite dizzy.

My work place doesn't have air conditioning so in summer it's easily 35°C in there...I dread working in these conditions with a mask!! I'm so glad that our summer so far is really rainy and not very warm at all In a heatwave, I'd definitely ask my GP to write me an exemption - I'm vaccinated anyway so it's not like I'm a huge danger to anyone (plus we have plexi glass at work as well).

Have a nice Sunday and all the best,

Christine 🌧️

[Pink75928]

Thank you all for your replies. I think I’ll mention it to my rheumy team, but say I’m keen to keep trying the MTX. I’m due to go to Harry Potter Studios next weekend and I don’t know how I’ll manage to get round without melting, but where there’s a will there’s a way. I’ll be the one hobbling at the back while eating ice lollies 😂

[Hidden in reply to Pink75928]

Enjoy . I loved it when I went . It’s not a hot place in general. There’s always butter beer😁 I just bought a a neck fan from Amazon . Honestly the best thing I’ve ever bought. A God send x

[allanah in reply to Hidden]

And a magicool spray worked well for me

[SlothSandpit]

I'm not on Mtx but I do get both day and night sweats - particularly my head and neck. It definitely gets worse when I'm in a flare, sometimes I can be sat down when it's not even warm and my face starts dripping 😅 I will often wake up in the night with a drenched head and neck too.

[Tatiana13]

I think night sweats are common among RA sufferers I have had it for many years I keep a battery operated fan handy most of the time

[Pink75928]

So this definitely seems to be RA rather than MTX then. I’ve just got up and started work. And remembered I have a blood test at 10.30 and I’m not going to have chance to wash my sweaty hair 😩

[allanah in reply to Pink75928]

Yes , magicool spray and hand fans work . Mine settled as my RD improved

[RheumST]

Fortunately I have not had this problem after using and still on MTX for over 1.5 years, so I don't have anything to add that would be useful for you. Sweating is not listed as a side effect, but individual differences exists so the only way to find out would be to stop the MTX for a week or two and see what happens to the sweating. Of course this may not be a safe thing to do esp since MTX takes a while to wear off and to start having an effect - so such a test may not be practical at all.

After looking at some of the replies to your question it appears that some others on MTX also have sweat issues. So an important question for them and for those that do not is how well MTX and anything they take in addition is handling the inflammation (meaning how normal are the lab results for Sedimentation, C-Reactive Protein, and any other standard Rheum lab tests. It would be interesting to find out if uncontrolled RA issues are more likely to correlate with sweating issues.

[Sheila_G]

Hi. You may find this settles down. It is only 4 weeks and in dmard terms that isn't long. On saying that, I would still contact your rheumy team and let them decide what you should do. Good luck.

[Flipper12345yellow]

Exactly the same for me. Absolutely cannot bear to be in the sun now and the slightest bit of exertion leaves me soaking. I actually dread it if I wake up and it's sunny. After 16 months of methx I am still the same. Its a shame as like you I was a complete sunworshipper.

[Pink75928 in reply to Flipper12345yellow]

Horrible isn’t it. I used to be such a girlie girl. Always with my hair done and heels on. Now I don’t even bother brushing my hair because it just falls out and I’ve resigned myself to comfy shoes. Long gone are my glam days. However, I’m learning to embrace being a homely person and doing some gardening at the weekends as opposed to cocktails and dancing 😂

[allanah in reply to Pink75928]

The hair loss will settled down too xx

[PSAWarrior28]

I've definitely noticed i sweat profuse since restarting methotrexate. I literally have water pouring down my face.

[Batteria]

It does in my book but you know what the powers that be are like! You could wear a light headscarf around your face tied loosely. You could press it closer to your nose and mouth at crucial moments. Buona fortuna Bx

[madme1]

Yes it happens to me Pink, but they do begin to settle down, though I do find that some days I'm either very hot or very cold. I take wet wipes with me or have the cooling sprays as well and if you are on sulphazaline they are the culprits as well!

[Pink75928 in reply to madme1]

Yes I do get cold as well. I’m looking forward to “sweater weather”.

[Lovetodanceto in reply to madme1]

Well hey there madme1 and thank you all for these replies I am on SSZ and I have extreme sweating especially in the day where the sweat pours down my face and neck, well I was putting this down to the peri-menopause well maybe it is the RD or SSZ as mine isn't under control yet, take careX

[madme1]

I have all cotton clothing as don't seem to tolerate wool, it makes my skin itch and I get too hot.

[Hidden]

I also have really bad sweats, mostly in the day time. The slightest thing that I do makes me sweat so much that it runs down my neck and back, my hair looks like I have just got out of a shower and the sweat drips off my onto whatever I am doing. In fact it is dripping off me as I am writing this. It is a horrible and an embarrassing thing to have. I was on Mtx for years and thinking about it, the sweats started whilst I was on them. However, I have now been off them for 6 months and am still getting all these sweats so I have no idea what is causing them.

[allanah in reply to Hidden]

Rd I think, it was better for me when mine got more controlled

[Durrell]

I’ve struggled with the sweating & always over heating & now use the 5 min cold shower morning & night & this is helping me so much to slow calm it all down. Not sure if I’d put mine down MTX or the RA as mine started before MTX so could be a combination but the showers help immensely, worth a try..