SWEATING !!

[NannyAlli]

Hello

Im just wondering if ANYONE ELSE WITH VASCULITIS sweats alot ?

Im means dripping of forhead even after a shower or bath?

This is getting me really down now , Thks

[LyndaGould]

I sweated a lot when I started taking steroids, I never really did sweat much before that so it was a real (unpleasant) surprise. I'm off them now but find that I would still get times in the day when I would break out in a sweat. I am however approaching or am at the menopause, so I wouldn't be certain now if my sweating is related to the vasculitis treatment or to my particular life stage...

[lisa-ranyell Vasculitis UK Volunteer]

I suffered badly too when i was on steroids. waking up with night sweats, and hot flushes whenever i got the slightest bit warm. Pretty much stopped when i came off them but still get the occasional minor flush.

[Ziggy]

Yes! unbelievable head sweating! I am not even on steroids!!.. it seemed to be worse with the summer months? at night I have a fan on even now so I do not wake up boiling, I think my general body temp feels higher (I do not have a temperature).I have to take a handkerchief with me to soak it up, which can then be squeezed out. It is terrible, even in a concert hall if it starts to warm up that is it.

[patsy]

I too have this problem, I am told it is down to steroids!!! but my goodness I did not think it possible to sweat so much, even in the coldest of places ( Tesco freezer Dept) I can break out . I suppose it may have its advantages this winter although last winter in my ignorance I thought the menopause has struck all over again. I was then told that as my steroids reduced so would the sweats WRONG!!!!!

Patsy

[John_Mills Volunteer]

John had night sweats long before he was diagnosed or treated for WG. We had to change the sheets 2/3 times a night. We had no idea what was wrong with him. We were told that night sweats were down to the WG (GPA).

Steroids can be responsible for muscle wasting and 50 other side effects but not night sweats. If someone has night sweats it can suggest the WG is not under control or there maybe an infection somewhere.

There is a definite difference between WG night sweats and meopausal sweats. If in any doubt you need to talk to your vasculitis specialist/consultant/doctor but whoever you speak to they must have an understanding and knowledge of vasculitis.

[Theresak]

It is so good to read other posts on this horrible sympton, I can sweat for no apparant reason. The amount and intentsity is very embarrassing. I keep being told it could be the steriods, the menopause or diabetes, but sorrry there is nothing we can do. I find it most embarrassing when eating as dripping into your food is not a pretty sight. Sorry to be be so graphic but need to get it out of my system. I even avoid going to eat with friends.

Enough ranting, now for some things that have helped, wearing tops without collars, because when the sweating stops I am not left with a wet collar. A top sheet on the bed under the duvet so can kick the duvet off but not freeze. in home a small towel for a scarve. If I am out a very thin scarve it I can stand it round my neck. The docs do not seem to be able to help so you have any other tips I would be most grateful

Theresa

[Galaxy2]

Yes, I used to be someone that really felt the cold but since my symptoms started am the complete opposite now and find other peoples houses far too hot (and hospital waiting areas) as I hardly ever need to have the heating on at home and sleep with a summer duvet all year round. I do think predisolone makes the situation worse though and have noticed really sweaty palms since being on it and my face is often flushed to.

[NannyAlli]

Thk you for all ur answers

Im not on steriods atm but i porb have more pills to my dail intake after i ahve been back to se ehim on the 12th dec.

Like you all my head is the worse at night or when i get hot i boil and i mean boil.

Love this site and thk you for ur answering me xx

[carlos1979]

Yes, I am plagued by sweats for no reason if iam shopping and they start i get really paranoid and want to go home.They make me feel really dirty also think everybody is looking at me as the sweat runs down my face.

I have WG and take steriods also Methotrexate. I call them tropicals as it does not matter how cold or warm it is when they attack,horrible.

Carl Shearing (South Yorkshire)

[karenJB]

HI

I've had terrible night and day sweats for about 2 years now and was told it was probably due to menopause and the steroid treatment for Vasculitis. At their worse I would have to get changed at least 4 times a night and during the day I could have them nearly every 20 minutes. I'd burn up then several minutes later I would get the shivers plus I'd often feel really lightheaded and had to sit down..

I've been off all medication since last November but the sweats still continued until recently. I've always been a great believer eating the right types of food and have been following an antiinflammatory diet for a couple of months plus making sure I cut down on potassium as suggested in the Vasculitis Journal/News Letters. I recently decided to cut out milk completely from my diet so no more cereal for me and for the past two weeks my hot sweats have almost stopped completely and I feel better than I have in a long time. I guess it's probably due to getting a better nights sleep, I don't know whether it's just a coincidence or not but I've decided to stick to this for a while to see if it helps in the long term.

Karen (Lancaster)

[NannyAlli in reply to karenJB]

Hi Karen

What sort of food have u given up?

I will try anything if it helps the sweats

many thks for replying .

Alli ( wiltshire uk)

[karenJB in reply to NannyAlli]

Hi NannyAlli

I've also cut out alchohol, chocolate products, sweets and cakes appart from the occassional piece of dark chocolate and started to drink herbal teas especially ginger and lemon and I also try to add ginger, turmeric and cinnamon to my food when possible as they act as an anti -inflammatory.

I also take Sage and Red Clover capsules, plus cod liver oil capsules everyday. As I'm not currently on any medication and HRT is out of the question this was an option suggested by my doctor for the hot sweats.

Please check with your doctor before following any of my diet because it might not be suitable for everyone.

Karen

[Jackie29]

I have terrible night sweats, these only started in the last few months when my steroid dose changed to 5mg one day and 2.5mg the next, and so on. At the same time I am being weaned off Cellcept so unsure if both of these are causing them or not. It is not menopausal, and I am being tested for TB. I hardly drink any milk or have dairy products due to my stage 4 kidney failure however I too would be very interested to learn more about what foods you have changed to see an improvement.

Alli - where in Wiltshire are you living, I live in Bristol?

[karenJB in reply to Jackie29]

Hi Jackie

I've listed some information about my food changes in the last reply.

As I explained to NannyAlli my diet may not be suitable for everyone and the supplements may not be appropriate with you having stage 4 kidney failure and with your current medication. Please do check with your doctor or online to see if these diet changes would be suitable for you.

My diet has been a little bit of trial and error but I found one online

Dr Weil's Anti-Infammatory Food Pyramid which I've been following for a couple of months, it's basically an healthy eating diet which has made vast changes to my health, improved my sleep patterns, increased my energy levels and helped with the hot sweats. I hope some of this has been helpful to you.

Karen

[NannyAlli]

Jackie29 Hi

I live in westbury wilts. home of the white (not so white) horse.

Thk you karenJB for ur advce on foos ect. will deffo try and give it a go

Sweats havent been to bad this week but i have a raging ear ache and feel so tired also had a very bad head ache

Been to the docs who thought i had had a mini stroke . But thats wasent the case( well he cant rule it out as yet cause i need mra done but to be honest i dont think i did . but we wills ee.

Hope everyone is having a good d ay xxx

[karenJB in reply to NannyAlli]

I hope it works for you NannyAlli and thank you I'm fine today, hope you're well too.xxx

[Hidden]

Hi, I too suffer with awful night sweats waking up wet through and shivering so I take a big towel to bed with me. Also in hot weather I constantly sprout water from everywhere but especially my forehead which drips - most embarrassing. I am well past the menopause but I am also on steroids (5mgs now) and cell-cept (1,000mgs) and have WG (GPA) same as some of you with this sweating problem. Hey ho at least I've lost a stone in weight since May, having dropped down to 5mgs prednisolone, so back to normal weight!! I shall look into the dietary plan as I'd like to stop sweating!

[karenJB in reply to Hidden]

Hi Sheila Good luck with the plan and cutting down on your steriods, I know how hard that is. I'm finally off them, i've now lost weight and my face no longer resembles the moon xx

[Hidden]

Hi KarenJB, how did you get that smiley face on the end of your message? I am a truly dinosaur antedeluvian person. So glad youcould come off the steroids and have lost weight etc. When I was on 40mgs/day I could not stop being hungry. So I ate the most inappropiate foods. Now I have no appetite and have lost a lot of weight in the past 5 months so I am 5.4 in height and weigh 8.8stones. I feel ok but I don't feel well?

[karenJB in reply to Hidden]

Hi Sheila

If you press colon followed by the right bracket it should pop up.

Yeah! I remember eating so much when I was on steroids, I 'd sneak downstairs and have a bowl of cereal most nights, it would drive my hubby mad. I'm so sorry that you're not feeling too well, have you mentioned your weight loss to your doctor? I went through a similar stage when I was on a lower dosage but now my weight has stabalised and with my healthier eating plan I do feel a lot better. I don't think I'm ever going to be the same as I was pre-vasculitis, I still have lack of energy days and then good days so I try to fit my life around it, but I know this can be difficult especially with work.

Hope you feel better soon.

Karen

[jen02]

Am so glad to read this - I have Wegeners and have had the most terrible sweats ever since I was diagnosed 16 years ago - but only my head - but as some of the rest of you have said this gets to the stage where my hair is dripping wet and I really hate it, its so embarrising. This only happens in the day. I have asked many many doctors about this and have been told a variety of things, menopause (Im 43) steriods and inflamation but no-one seems able to do anything about it!! Absolutely delighted to hear I am not the only one who suffers from this!!

[Hannah-Joy]

Like jen02 I am SO pleased to read this!! I had horrible sweats (more in the early days than now) it was so embarassing and i had no understanding of why or anyway to control it. I slept most nights with a fan on full blast!!

I got to the point were i was really worried that the cyclophos may have been sending me into early menopause (very early as im only 26!!).

I am pleased to say though that since my pred came down to 5mg they have all but gone. I very occasionally get them but i know now just to whack on a fan and ride it out!