Well I've successfully reduced down to 15mg pred from my starting dose of 20mg at the beginning of feb without too much trouble (via 17.5mg for a couple of weeks) GP has told me to have 6 weeks before dropping another mg at a time.
What I'm wondering is if anyone out there has had/is having problems with sweating? I started with the menopause a year or two ago & had hot flashes which had started to improve, but these are far more intense & prolonged, my hair is dripping & my face drips & I feel exhausted & pathetic. Working in a 30 degree environment (physical work too) is nigh on killing me! It's almost a claustrophobic feeling that makes me panic. Along with the insomnia & fatigue I am becoming such a grouch with everyone & getting annoyed with myself. Just hoped it isn't just me...........I'm fed up.
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PamOakes
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I started on 20mg and I could not understand why I suddenly started feeling boiling hot and dripping in sweat as it was the middle of winter. On telling the rheumy he just laughed and said oh yes that is a side effect of steroids. Very unsympathetic. I have found that it has improved as I reduce the pred dosage though, thank goodness. It is much worse than menopause in my opinion. I just get warm glows now. Initially i had it when I woke, during the day and when I went to bed ie virtually the whole time. I think it was the worst side effect initially.
Hi Pam. . . Wow you are describing me. . In that post. .im really struggling at work due to the sweats, I'm a care assistant and we wear purple tunics which show the wet patches terrible it's so so embarrassing I have bought special deodorant a roll on that blocks the sweat glands which helps, but my back and chest also get damp and like you say my head and face Start to drip and I'm constantly wiping my face esp my top lip area.. .
My work environment as you can imagine is WARM. . I go around opening all the windows with out anyone noticing but somehow they soon get shut!!
I too was told by the GP oh that the steroids. . .
So no help really here Pam but thought it might help to know there is another sweaty grumpy person out there. . . X x x
Oh a fellow care assistant!! We have pale blue tunics that show all the sweat too 😣 if you lived close by we could share grumps & sweaty tired stories! Sorry but I am glad there's another sweaty, grumpy insomniac of a care worker out there..........& it's not just me. Thanks for responding x
Bless you Pam, no your not alone. . I go around work keeping my arms down where ever possible. . . It's amazing how all this affects us isn't it. . But I try to keep smiling and when I'm not smiling I have to say I'm crying, I find having a good old cry helps. . And yes it's a shame we don't live near each other, I would be lovely to compare notes. .
I'm in Devon by the way no idea where you are . . Keep smiling Pam take care . . Lisa x x
Aww thanks! I wish I was in Devon! I'm south Staffordshire/ Shropshire border & I don't know anybody around here anyway having just moved here......or anybody with this weird illness! Good to know you're all out there though & thank you x
I certaily had menopause-like symptoms with prednisone so as others note, probably not uncommon! The good news is that such things tend to lessen and then disappear as the dose decreases. The general guide is that below 10mg pred symptoms start to disappear. So stick with your reduction schedule and things should improve. I know, it is hard at the beginning and we all want to rush off the meds. But slow and steady reductions for me, gradually got rid of symptoms and I've been off preds for two years now
Nice to hear that there is light at the end of this tunnel, I'm in no rush to get off the steroids as the pain is still quite fresh in my memory & I'm happy to reduce very very slowly.
It's reassuring to hear that you succeeded in coming off the pred & are better! Lovely to hear a success story! Stay well & thank you
Hi pam. I think most of us have had this dreaded side effect in the early days but it does diminish as you reduce the preds. I'm On 10 mgs at present and haven't had the sweats for a few weeks now. (Thank God) so perseverance is the key and slow down a bit.
I have GCA so started on 40mg slowly going down started18mg today. I have found a couple of things help wear as much cotton next to you skin as you can I ended up going to asda for multi packs of cotton knickers then M&S for unwired cotton bras best £30 I spent .Drink lots ,eat often.Above all tell people its the drug's thy will understand
Hot flushes are one of the possible many side effects of Prednisolone and some of us experience them more than others. In the early days on the high doses (I started at 40mgs) my head was constantly bathed in perspiration - forget keeping a good hairstyle! The frequency does lessen as the steroid dose is reduced, although strangely I used to find it still bothersome immediately following a steroid reduction and often during mealtimes.
I found it helped enormously to cut out coffee and caffeinated tea. I echo Olive's advice to wear only cotton clothing - the perspiration then dissipates more easily rather than being trapped under man-made fibres and holding the heat in for longer. It will improve.
Hi, l asked this question about a year ago as l thought l was the only one and the replies l got were great, l wasn't alone! I am now on 6mg and still get the sweats, maybe not so often but still look like a wet mop after doing something a bit more excessive than usual. My godsend has been a fan by the bed in the summer otherwise l get very little sleep. My husband isn't a big fan but l did offer to swop places, he didn't like that idea very much either. Thankfully customers at work and work mates are used to it now (as this has been going on for a couple of years) l tend to have a break and dry off for a few mins drink a cup of water, let myself calm down, then start again. Hopefully hearing other people tell their stories you will feel less alone, good luck!!
Strangely my excessive head sweating coincided with the GCA symptoms 2 yr ago, the same evening the temple pain & jaw cramping started. After I wsxstarted on Azathioprine, particularly when I reached high doses they subsided. I have never had the high dose steroids for GCA yhats another story.
However over the festive season I stopped my Azathioprine, and 12 days later flare with all the GCA symptoms & the excessive head sweat. I have to carry a flannel and fan in my bag at all times. Even a 1/2 mile stroll on the seafront has me drenched, drawing some strange looks when the suns out and your not jogging. At work I have a hairdryer in my office, often after giving patient care I have to disappear to make myself respectable. Eating meals also triggers it like Celtic says. It's embarressing, I just feel dirty. Good to know your not alone though. X
Both PMR and pred will cause the sweats - mine were "wetter" with PMR alone, I could feel sweat trickling down my back. With pred they are more sort of mega glows but have become less mega with a lower dose.
Has anyone else noticed that their "glow" is heralded by feeling as if you have just been punched in the solar plexus? I used to just get that feeling but now it is also a feeling of an electric shock down arms and legs and then this gentle feeling of warmth spreading all over. Don't sweat any more though.
One GCA lady used to sit with a towel around her neck - which was where her sweats were worst. I often wake at night and can feel my neck is sort of damp - and it was a sweat that woke me.
Like someone else - a fan onto the bed in summer, cotton bedding and clothing and layers you can cast off all help. And accepting very curly hair is the way to go!
Oh yes - they have all improved greatly since I was put onto a betablocker and an angiotensin II receptor blocker for raised BP. Before I was permanently hot and needed windows open in the depths of winter and couldn't even wear socks. Now I need socks and a sweat shirt as well as the t-shirt that was enough before. And it has been a very mild winter by our standards!
Yes I'm in t shirts all the time, even in very low temps........& getting used to having "big hair" every day. It's that claustrophobic panicky feeling that really gets to me.......just have to suddenly get up & go outdoors at all times of the day or night!
I've had PMR for a couple of years and have reduced pred to 4.5mg, which is great, but am still bathed in sweat the whole time. It IS embarrassing, and my head is the worst place as it drips off my earrings! I feel dreadful if someone greets me with a hug or a kiss.... And I have to put a towel on a cushion to rest my head in the evening. I'm guessing that getting warmer when eating a meal is simply to do with taking in extra energy, but it's awful to sit in a restaurant and drip!
Now I feel pmr normal & not alone in my current sweaty condition.
I have also noticed the last couple of weeks that I am having extreme dizziness & a strong pressure pain between my breastbone & throat.......I thought I was having a heart attack! I think though that it is a side affect of alendronic acid as it hits on the day that I take this drug & for a couple of days after. Has anyone else had this?
Have had to change doctors last week as we moved house & I'm waiting for all my records to be transferred so can't make appointment with new doctor yet. Feel a bit stranded & alone right now
I get that kind of pain about 10days after a reduction over 3months I became great friends with ECG machine at GP surgery . Had blood tests to check for markers for stroke all clear so we have put it down to pred withdrawal
I haven't reduced my pred for 5 weeks now (still on 15mg) but I really don't like the way the alendronic acid makes me feel, I'm not even sure I need it as I've never had a bone scan. I was hoping that just taking the adcal & plenty of calcium rich food would suffice?
Insist on a bone scan - and if insisting gets you nowhere, Southampton General does private ones for £55, a clinic in Bristol £75. There will be other places that do dexas privately. But make sure it is a DEXA scan, not the portable screening things that use heel readings - they are useless.
If the decision is you do need something and AA is causing you gastric problems, first of all are you taking it EXACTLY as the instructions say? First thing in the morning, with a large glass (200ml) of TAP water and then waiting, sitting or standing upright, for 45 mins before eating or drinking anything else? If so - and you still have the chest pain, tell your GP and say you wish to try the next option on the list and why. There is a ranking of substances, obviously starting with the cheapest and easiest. If that is unacceptable for any clinical reason, you get to try the next and so on.
I have been on pred for over 5 years, most of the time at above 10mg. I had a dexa 3 months in which was fine, no AA needed. After 3 1/2 years I had another which was, to all intents and purposes, unchanged. They were done on different machines so can't be compared directly. I have taken adcal plus some extra vit D the entire time and nothing else.
Ok thank you for that info, I think I might ask my new doctor if I can come off it until I know I need it, medication I can take if I have to but dislike taking anything I don't need to as the side effects can be unpleasant & I feel there's enough to cope with right now. Thanks again
For several years I wore a Nike headband most places because otherwise I just couldn't stand the sweating. Church organist wearing a headband earned me the nickname of Olivia and spontaneous singing of 'Let's get physical, physical.'
I did grocery shopping with a headband too. Small children and all ages would look a bit strangely but you know what? I didn't care because it was so much better than dripping and mopping and dripping and mopping. I am 65 so comfort is everything these days
When I first had PMR my Rheumy stated I did not need a Dexa due to my age, 47 at the time, and having already become menopausal. I arranged a private one in Maidstone which showed I was close to Osteoporosis. The specialist who reviewed the results recommended AA. I've taken it for 3 yrs and went last week forcemeat scan on same machine. The T score has improved since last scan, so for me AA is helping. I take it exactly as prescribed, and other than the first 2-3 weeks feeling light headed and having to lie down, I have been fine. This side effect soon passed. If you don't dtay completely upright as stipulated it can track back into oesophagus and cause burning pain.
Yes my doctor stressed the importance of how to take it when she first suggested protecting my bones. Every Thursday morning I take one with a pint of water & sit/stand up straight for 45 minutes before having my breakfast & pred, it just makes me so dizzy (usually in the evening/night) after I've taken it. I've had 3 tablets in total so far so maybe it will settle.
So nice to know there are other "sweaters" out there. Like others one of the defining symptoms of my PMR/GCA was severe hot flushes, so I was disappointed to find that the pred also caused it too. I've always been a hot body, typically outdoors in a t shirt when my husband is in coat, hat and gloves, so I am dreading anothe hot summer.
Hi I started Jan 2014 on 60mg now down to 5mg, had to go back up to 30mg this Jan as had pneumonia. Saw consultant on Friday and had one of my famous hotties, he said it was definitely the steroids making me sweat day and night. Know how you feel, I also have a auto immune liver desease (non alcohol related) that makes me sweat too. If only other people knew how hard it is for us. I am fortunate with a wonderful husband and family. Hope you feel better soon. My lounge fan is on all through the winter. Sending you gentle hugs xxxx
Aww bless you & thank you. I'm afraid I lack an understanding husband (he suffered from compassion fatigue about a week after my diagnosis & wanted me back at work!) he doesn't cook or clean or do laundry (can you tell I'm bitter? Lol) so sometimes feel a bit alone but at least I have so many kind & understanding people on here thank goodness
Good luck & hope you're soon over the pneumonia & back on track as you were doing so well!
You're not alone there either Pam! In fairness to mine he does appreciate I have a medical problem that makes a lot of things difficult! He used to cook in the UK because his favourite food are steak pie, bacon and burgers with chips - available ready to use there. Not so here in Italy!
Clean? Laundry? No, eat out, if I'm not there ring me for step by step instruction on how to load the washing machine when he's run out of underwear. Or he has been known to buy more...
Thank you Pam, I know I am one fortunate lady. I really feel for all of you that do not have family support. I will pray that you start to feel better very soon. Where abouts are you? I am in Essex.
Oh .... thank goodness I have read all replies.... This extreme sweating has been driving me mad .... I have been on 15mg for 5 weeks and just reduced to 10 .... and spend my time in front if a fan when at home .... I don't feel so bad now that I know it is a common side effect .... and sympathise with everyone . . especially people who have been taking them for a while .... thank you x
I have taken my first 10 mg today ... I saw the doctor on friday so ... I will keep a check on my symptons. ... he did say if I had any problems to arrange a phone consultation and I can increase the dose again. I have also taken my first Alendronic Acid 70 mg today ( just once a week for this ).
Top experts have said for years that reductions of pred, especially in PMR should not be more than 10% of the current dose - that was 33%! Some people struggle with 2.5mg at a time!
Yes, that is the sort of reduction you can use in other illnesses where pred is used and tapers done. PMR is NOT the same. For a start, you are not reducing to zero willy-nilly, you are reducing looking for the lowest dose that manages your symptoms as well as that starting dose did. PMR is a chronic illness that usually lasts between 2 and 6 years for some 75% of patients - for some of us it takes longer. Pred is not a cure, it just manages the symptoms until the actual disease process burns out and goes into remission.
In the early days it is likely to be much higher than it will be later on - and sometimes initially it may be as much as 11 or 12 mg - dropping straight to 10mg means you have missed it! If the symptoms return - you may be very lucky and be fine and I do hope so - don't hang around: letting a flare of the symptoms get going often makes it far more difficult to get them under control again. I did a taper of 2 weeks each of 15/10/5 and stop - I was fine all the way down but within hours of missing the first 5mg tablet I was in a worse state that before - and it was years before I got down below 10mg again.
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Sweating
Extreme tiredness
