Anyone suffering from vascullits noticed 'hot sweats'? if so, any suggestions?

[Angelique11]

just wondered if anyone with vascullitis has noticed night sweats or daytime 'hot sweats'? If so, any obvious solutions? Or anyone with a good endocrinologist who may be able to help? Thanks if so... Happy New Year everyone!

[PMRpro]

Sweats are common in autoimmune disorders and if you are on pred that sometimes causes them too. Keeping your rooms cooler than normal and having layers of clothing and bedclothes means you can adjust clothes and bedding when you get too hot. I had loads of problems a year or so ago because my husband is a chilly creature and always wanted the heating on! This year, after atrial fibrillation being dx'd and being put on a suitcase of BP and other meds, I am the chilly one! I still wake in the early morning feeling far too cosy and have to chuck the (summer weight) duvet off and stick my feet out - that always works I find! In the summer I have a fan in the bedroom overnight - a ceiling fan tends to have less draught and be quieter - and sometimes only need a sheet rather than anything more but a blanket is kept handy in case. I always get a slight warning so can remove a layer of clothing quickly but we live up a mountain, daytime temps are rarely above freezing in winter and you dress for that - so when you go in a shop it is horrendous! Doesn't bother my husband but I feel as if I am going to explode!

[Angelique11 in reply to PMRpro]

Thanks for that ! I also find cooling my feet helps! Problem is I get kidney trouble if chilled so this is a very impractical problem as I alternate between cold and hot, and my kidneys go wrong with nephritis if chilled so I have to cover them and keep them warn at all costs! Hope I find a solution for the 'rock and the hard place', thanks for your advice though ! Lucky for you that you have fresh air on a mountain! The healthiest place to be I reckon Good luck with your own health probs, which sound prety troublesome,best Wishes and Happy New Year...

[HiveMind in reply to PMRpro]

You're not John Boy.....from Walton's mountain are you?

[Angelique11 in reply to HiveMind]

: ))) oh for life to be so simple as for a Walton!! NIght y'all....

[Bools33 in reply to Angelique11]

goodnight granma...x

[anthony01]

Hi Angelique - Yes I have hot sweats which I normally think is Methotrexate? at night are my worst times and have a fan on all nights to get through them. I believe their is a Cool Mattress one can buy which contains a gel, mean to buy one and try!? I know someone else from Vasculitis UK mentioned it.

[Angelique11 in reply to anthony01]

Many Thanks for the info Anthony, sounds like your experience is quite bad, I'm getting the feeling from people's feedback it is a combination of the illness and the side effects of meds- didn't know about special mattresses but will bear in mind for future if I am ever in a position where I don't have to spend so much on my health ! - Good to know about it in any case! Good luck with finding the best solution for yourself, wishing you a Happy New Year, Angelique

[BronteM]

Hi Angelique,

For several years before I was diagnosed the 'night sweats' were put down as my age, and I was told that they would eventually go. They didn't, and two years ago I got a diagnosis of large vessel vasculitis.

But at the moment I think that the steroids are the main culprit...I'd got down to 6 mg a day and the sweats, day and night, were much better. But I've just been back in hospital on IV antibiotics for a series of infections, and while I was there they put me up to 12 mg, and the sweats are back.

So, in my case, it seems that some is the disease and some is the drugs. Can't win, can we!?

[Angelique11 in reply to BronteM]

Thank you Bronte, sounds like the drs came up with the most obvious answer initially- 'must be your age, dear!'- I spoke to a helpline doc who suggested something similar, but I'm pretty young for that and I know it isn't that, as I also feek very weak- and as I understand it, women of a 'certain age' are not 'staggering around' so badly weakened they can barely walk, at onset of these changes! I've been on up to 35 mg a day in a better state without feeling debilitated like this, and so perhaps for me it's the illness I'm noticing rather than the pred- but it's useful to get this feedback, because it would never have occurred to me to link the pred with the sweats, it may be a contributing factor.. By the way was it a long haul for your diagnosis, do you mind me asking, was it done with blood tests etc? All Best Wishes, Angelique

[BronteM in reply to Angelique11]

My diagnosis took about two and a half years. Tried everything, including a couple of alternative therapists, physiotherapy for the pain etc. Finally treated myself to a massage two years ago, and the masseuse was really worried and said that nobodies skin or muscles, had ever reacted the way I was doing and that she thought I should see a doctor immediately. Not easy on December 31! But I collapsed two days later, and the ambulance took me into our local hospital. They could find nothing wrong and sent me home. Three more ambulance dashes and someone noticed that I had no pulse in either arm, and I got a proper diagnosis. Problem is that Takayasu's doesn't show up very well in blood tests and has to be diagnosed mainly by symptoms, lack of pulse, effect on BP and kidneys. All a bit subtle for A and E.

Now clinic thinks it's been there for years, and it's only recently that it's gone critical.

Best wishes, Happy New Year, and I do hope you get a proper diagnosis soon.

[Angelique11 in reply to BronteM]

Thanks for your good wishes BronteM, and the same for you, Happy New Year... !

( I am sorry to hear you are so ill- hope you are getting best care)....don't know why I didn't see your reply before; think I've gone a bit squizzy-eyed! !

Your story of A and E is a bit reminiscent of mine before - as I have another rare condition that I was put in A and E for years ago on multiple occasions, and though they used to treat me as they found me (resus, and all the stuff they use for someone who's gone unconscious) they never worked out what it was... subtle is the word! I had to speak to specialists in London to get the best advice for that one. I think my pulse has disappeared before. Not sure why. I had been unconscious and remember waking to a nurse saying extremely loudly 'oh my God I can't find a pulse!' Then apparently (I found out some time later) one of the nurses went to my consultant and said 'she's going to die!' ( Which obviously I didn't... : ) ) But I had a lot of awful experiences of being bashed on the chest by paramedics and nurses before I had a proper document explaining the condition. All of the misunderstandings and awfulness of it all haunts me and it makes the prospect of agreeing to an A and E admission incredibly difficult, no matter how ill I am. That and all of the colds and flus in the hospitals...from the forum I'm finding out how desperate people get with vascullitis, and how they end up as emergency patients because people can't work out what's wrong. I wish I could have gone to A and E recently, the paramedics were keen to take me but I just couldn't agree to go, so they looked after me for a couple of hours. I do miss out on the testing which can show something up when things are bad, because I am now phobic about A and E. Also the bright lights there make me more ill. I won't be able to see anyone medical until I get to a specialist, and by that point, hopefully I'll be improved enough to get there, with the increased doses of steroids. This is why I was looking for an astute specialist who can work with historical blood tests and doesn't have to reply on current ones- they would probably now be meaningless due to the levels of steroids I've had to use to become well enough to get out of my house....

Part of the diagnostic diffiuculty is that because I have complex health issues I can't tolerate anaesthetics well, and so biopsies just aren't an option. That's why I wanted to find the exact right consultant who can work with my blood tests from before and my medical history. If I get full confirmation of the provsional diagnosis, I'll be able to try stronger medications and I'll feel safer knowing that if something does happen, I won't be going through acres of misunderstandings in A and E !

In what way does your condition affect your muscles/kidneys, if you don't mind me asking? ....

[BronteM in reply to Angelique11]

The poor blood supply in my arms, neck and shoulders means that I get claudication whenever I try to use those muscles. So have to rest after getting dressed, changing sheets, doing most things with my arms and/ or shoulders. Kidneys are working around 50%, and I'm waiting for ultrasound scans othem and renal arteries. You can have some biopsies under local anaesthetic...my temporal artery one was done like that. Not that I found it much fun....

[Sarahjh2004]

Hi

I get night sweats. I thought it maybe my preds. I have just seen an endo.... who due to all my meds wanted further testing before I go back. I'll let you know how it goes.

Happy New Year x

[Angelique11 in reply to Sarahjh2004]

Thanks Sarah, was the endo good I wonder... keep me posted! I would travel to see a good one if needed. Thought I could do with endocrinology. Got to do something, as I wake so dehydrated and feel very weak. Also can't sleep in cold temperatures and feel unwell if chilling myself, so can't win! What sort of tests did the endo need? Sorry if that is too personal a question.In any case, please let me know if you get any good results! Happy New Year to you too...!Angelique x

[hsp1]

I have suffered from hot sweats for many years. Only thing I try to do is drink plenty of water during the day and eat lots of natural high immune boosting foods With me it isnt just sweats I actually burn up always have done sporadically but more as i've got older it is NOT menopause

[Hidden in reply to hsp1]

Hi

I'm pleased someone mentioned re. post-menopause. I've been uncomfortable at night as well - waking me up in the middle of the night due to heat.

I often wonder why some of us women are in post-menopause and are suffering from GCA or other autoimmune conditions: and wondered if there are any links.

Hard to say but I also don't think it's PURELY menopause. Autoimmune type flare going on, I also think.

[Angelique11 in reply to Hidden]

yes, thanks for your reply, I think it is what you say, having read everyone's replies. I think the 'menopause' thing is a bit of a fob-off and that it must be due to auto immune problems as well, or even exclusively- not all women get hot flushes through menopause in any case- and as you are not menopausal, this wouldn't seem to make sense... Temperature regulation is an autonomic function, and surely this could be affected not just by female hormonal changes but also by depletion of cortisol etc caused by auto immune issues. I'll look into this more. I don't know much about endocrinology but I'm trying to fit the jigsaw pieces together. A bit of an improvement on pred convinces me that this may well be auto immune. I know I'm weak and depleted as well by all of the related health issues. The less sleep I get, the worse this problem is. And when waking through the night this turns into a vicious cycle. I've resorted to using the supplement melatonin to sleep better through it.

Any hints on how you manage these temperature changes in public? Think I'd really struggle with the 'chill' factor if sweating and then being in drenched clothing once I cool down, if not in my own environment where I can change and be warm again. I guess taking extra clothing to change into, and layers? I'm currently weak and housebound... so not very active anyway.. but if I get to the point where I can go anywhere, it would be useful to know how people cope with this.

All best wishes for the New year .....I really appreciate everyone's feedback and yours has made something 'click into place' for me...

[hsp1 in reply to Angelique11]

Hi again, yes the burning up seems to be with me as long as I can remember certainly from when I was in my twenties and before during pregnancy I remember it along with the exstreme pain in my fingers and wrists to the point it made me cry. Swelling feet during summer all part of the course. However, its been in later years the hands and fingers got worse. This could be contributed by a number of factors, my former job working in the food and drink sector worn out joints etc, accidents and damage to my shoulders arms and neck causing possible nerve damage in later years. I've had extensive tests and they simply wont give me any definate answers. Depending on which consultant I see It seems to suggest its because of my former history of hencoh schonlein as a child. My parents backed up that theory as remembered me always having problem with hands they seem to think because of guinea pig trial drugs I was given in 1961. My GP said it might be true. The burning up feeling in bed all ties in with me waking up in bad pain most nights my hands I simply can't move. From research papers I've read about vascular diseases and indeed hsp it does make sense as the body is at its lowest during the night when we sleep if there is difficulty in blood pumping around the joints for whatever reason then it would probably I would think cause these other symptoms.

[Angelique11 in reply to hsp1]

Hi there, thanks for your reply ! Yes I've noticed lots of water is essential otherwise drowsiness and dehydration takes over! What kind of foods do you find useful ? I like things like blueberries but find them expensive. I guess you mean fruit and veg? Any ideas on this? By the way, how do you manage this situation when in a public place?

I get the 'burning up ' thing as well and am too young for menopausal symptoms. As this 'sweating and burning' is improving a bit on higher doses of pred, and since so many people said they have the same thing, I'll conclude until I get to a specialist, that it's most likely systemic vascullitis symptoms. Also as I've had a lot of other symptoms going on and feel very weak. If I was always hot it wouldn't be such a problem, but I'm alternating between cold and hot.....don't know what to wear of how warm to heat my house! But thanks, I am so encouraged that people have answered my questions! I am learning a lot from this forum. Happy New Year ! x

[Phill66dirt]

I was diagnosed with systemic vasculitus about 6 months ago I was revering and was having severe night sweats to the point I was hospitalized and three times a night they would have to change my bed clothes. It was miserable My drs put me on 60 m of steroids a day and now down to 20 a day but it seemed to take care of night sweets and I guess a lot of other things. I hate being on them but got to do what u got to do. I was 175 running marathons a year ago and now 230 hope mg to get back to that. Good luck with everything !

[Angelique11 in reply to Phill66dirt]

Hi Phil, I'm impressed the nurses changed your bedclothes 3 times a night! I'd be terrified of being hospitalised with this- we don't get that kind of service here in our local hospitals! Yes it is truly a miserable problem, I've been waking with it several times a night too. Did you find the source of your problem through blood tests?

What about long term bone health with steroids? do you or anyone else have advice on that? Your answer is interesting as I believe 20 mg may be my solution and I was better on this in the past, but I afraid to take this amount continually due to the risks, and also now that my resp consultant is gone, I only get 15 mg prescribed which means I have a deficit in terms of what I need to control systemic symptoms.... Guess I do need a specialist to move things forward.... Thanks for your good wishes : ) Good luck with your running!

[hsp1]

I am not on any medication as they say they are unable to give me any because I am allergic to many due to some condition or other and because henoch schonlein is rare also, allergic to pencillin. I am unable to control it despite sleeping in any kind of room. Its like I've got a raging temperature. My husband used to say it was like sleeping next to a red hot hot water bottle at times. It was totally unexplained when it happens

[Angelique11 in reply to hsp1]

Hi there again Nwaseu ...that sounds bad, not to be able to take medicines! Thank you for your feedback. I really empathise with that problem. Did you ever experiement with alternative/complementary medicine at all? I used to have to use those and diet almost exclusively long ago when I was intolerant/allergic to most medications... wouldn't be able to do without pharmaceuticals/steroids nowadays, but used to survive on anthroposophical medicine,homeopathy, herbal medicine, acupuncture etc (not as successful as steroids but certainly a whole lot better than no treatment!) and personally I still find some alternative ones quite useful as a complement to my steroids etc. Not for everyone I guess, but it sounds from your previous message as though you do the 'natural stuff.' Your message is thought-provoking for me and really feel for you being in that situation of not being able to use medicines.. even now there are many medicines I simply can't tolerate, and I have to use supplements and alternatives to replace some of the recommended treatments for some of my conditions.... I've tried getting acupuncture for the sweats yesterday, with anti-inflammatoires and increasing my steroids. It's gradually improving but I have a way to go yet. The weird suddenness of the heat sensation, as you describe, is shocking. I reckon I'll continue with getting acupuncture whenever I can afford it. It seems to have made a bit of a difference, along with other things. Take care... x

[molliecatone]

Hi

yes I get the hot sweats and find the best thing to do is stand on the tile floor in the bathroom or kitchen and cooling my feet not sure why but it helps.

[Angelique11 in reply to molliecatone]

Hi Molliecatone, thanks for the tip, yes I agree that getting cold feet is a good way of cooling down temporarily I guess the old 'summertime' trick of running cold water on wrists could be good too..

...... the number of replies I\ve had here is really amazing- and has convinced me that my sweats are inflammatory/autoimmune - as they are getting less vicious on higher doses of steroids and this experience seems not to be unique- .. I am now looking into autonomic function , as the sweats/heat sensations just seem a nasty and unnecessary part of a day! I've just found a good holistic article on dysautonomia. It seems that temperature regulation 'gone wrong' can be a form of dysregulation of the autonomic nervous system which can be triggered by autoimmune probs -apparently there are a few self-help bits and bobs that can be done other than steroids, things that support the body's cortisol levels. The sheer number of replies to my question has provided some clarity for me and I'm grateful for everyone who's answered! . so thanks : )

[SadiaC]

I am sweating a lot especially at night and then get chills from the sweats…. I have had this my child hood and i think it is my bodies way of telling me i have inflammation, and then usually get very sick before i get better but that is me. I am holding out going to the doctor as this cold/virus has not affected my breathing yet but both my daughter and I are very croaky and chesty. All my symptoms have been fobbed off by my GP as over 40 malarky.

If I take steroids which i do try and avoid this seems to regulate the sweats after a few days but again that is me. I think getting ZEN with your body and understanding why it is doing what it is doing is a really good thing. Persist you know yourself best, especially if you have TA it is really hard for them to diagnose

[Angelique11 in reply to SadiaC]

Thanks SadiaC, this is great advice (ie being 'zen' with your body- I'm into the 'zen' thing!) and mirrors my experience over the last few days. I've had to attune myself to what's helping and what's not.

Sorry you've got a nasty bug ... I find personally that they can trigger my autoimmune symptoms badly, almost as if my body is allergic to viruses! (I think there is an immunologist somewhere out there who has discovered a link such as this). I find that when feverish I have to cover myself - at least the middle of my body- even if hot, otherwise the fever will worsen and I get very weak. And then the clothes changing thing to prevent chills. I'm now thinking the source of my autoimmune flare-up was an infection that I thought I'd fought off weeks ago- a doc has prescribed antibiotics - and along with my increase in steroids, anti-inflammatories and acupuncture, and a few other strategies, there is the beginning of a reassuring improvement. I couldn't carry on as I was- with the awful sweats I I was dehydrated, exhausted and very weakened.

There is definintely an inflammatory process I can feel going on. I don't 'buy' the over 40 thing, I think that is over-simplifying a complex inflammatory and/or endocrine problem arising from a serious health issue- and that 'over 40' chestnut could also be dangerous as it could stop a woman from seeking medical attention for a lingering infection.

How did you get your vascullitis diagnosed, if you don't mind sharing ? If not, I understand. Good luck getting over your cold...x

[DBH1969]

Hi all after reading all the comments I suffer with hot sweats then becomes cold sweats several times through days and nights. Not forgetting lack of sleep because of that, I thought I must be going through a change which I'm only 44!! Now I realised it could be down to pred whiich I'm on 10mg and had 5th cyclo, it really getting to me . Diagnosed with WG last September 2013 I will mention this with my consultant when I see her on Wednesday.....Thank you guys Diane

[Angelique11 in reply to DBH1969]

hi there Diane, looks to me like some people are putting the sweats down to pred but just as many to the vascullitis itself. Maybe it messes with our temperature regulation. Mine are decreasing after increasing pred/anti-inflammatories. Still not sorted but better than it was for me a week ago. Good luck at your appointment. Thanks again for everyone's replies...if your consultant throws any light on this issue, could you please let us know? Thanks if poss...