Polymyglia reumatoid arthritis

I was diagnosed with pmr 2 months ago, severe pains from neck down to ankles. I was put on 15mg prednisone and after 4weeks, the pain completely cleared, about 2 weeks ago I decided to lower it to 12.5mg and I notice that I am perspiring a lot . It seems like my body temperature control has gone bonkers. Is this normal with reduction of prednisone ? I would be much obliged if someone could tell me that reduction of prednisone does cause this severe perspiring and I also have gained 20 lbs in weight.

48 Replies

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  • I am so glad you have got rid of the pain. Unfortunately weight gain and sweats are side effects of the pred. I used to tell people I had been swimming as I was always dripping wet!

  • Thanks Piglette, I now know what else to expect. I suffered with pain for a year, and all they gave me was dihydrocodeine , I was in the hospital and a doctor examined me and took my blood and told me that I had pmr. Until then,my local docs surgery never diagnosed my fault. Unnecessary suffering for a year. I thank you for your reply.

    Warmest Regards,

    raptorabz

  • I had exactly the same problem I was almost unable to function physically ,just worked when I could(self employed ) and slumped around depressed to death thinking it must be me .Getting very fearful of what was wrong with me because it was so painful and debilitating by the time I got diagnosis and some help .No one else seemed to think it was as bad as it was .Doctors kept increasing the painkillers to no avail .How a doctor can just ignore such a decline in a healthy person and leave them feeling like a hypochondriac for over a year when all it took was a blood test from a doctor to diagnose .I have the sad feeling that most doctors will not take ownership of anything and are more concerned with protecting themselves from being blamed for any thing than they are in protecting the patient from harmful illness . I sweat a lot but not all the time my hair is very often wet and dripping ,embarrassing , its a bit like menopause .Yes I don't think we have a thermostat !!!! Catches you out when you really don't need it to dosn't it ? . I have found this site more helpful and informative than my doctors who dole out prescriptions and NO advice . Rheumy is ok though they have a help line for advice where I am which I seldom use but it is really good if you need it . . Keep reading this site its soooo helpful .Not everything is the same for every body but the information you can read often put's your mind at rest when you are thinking Who do I ask who is there to mull things over with ? Try to watch your weight it's hard with so much else to deal with but necessary .Funny how my doctor showed no interest in what the heck this was but picks on my weight every time they see me ,easy that one no responsibility for them is it .That one is your own fault . .I am heavy to start with but I have realised The steriods don't PUT weight on you but they do make you hungrier and that's where the problem lies .At least that,s how I see it . Sorry this is so long just wanted you to know what a great place this is for for giving you some confidence in yourself when you feel down or curious or even miss informed elsewhere .Keep your chin up .

  • Dear PJRW, yes, I know that feeling when the docs don't listen to what you have to say. I was a very active person, I worked outdoors from 1974 to 2012 when I started getting mild pain which later on led to severe pain, so much so ,that I would not want to get out of bed as the pain was bad even when you turned in the bed. The docs started me on dihydrocodeine and later on went to tramadol . Slowly, all these meds. did not work on me..Yes they thought I was a hypochondriac until hospital blood test. Since I have been on prednisolone , my pain has disappeared . It is a good medicine, but side effects are bad.

    All the best,

    Warmest Regards,

    Raptorabz

  • Raptorabz, unfortunately perspiring is a common side effect of both steroid treatment and can also be due to the inflammation of PMR. My head was the most severely affected by overheating, and some people say they need to wrap a towel around their heads to absorb the perspiration to stop it running down their necks and foreheads. I found the most comfortable solution - and somewhat cooler than the towel - was to wear a headband a la Wimbledon! Interestingly, you ask whether reducing Prednisone can cause this reaction, and strangely I used to find the problem was at its worse immediately following a reduction in dose. Bizarrely, I also noticed it happening after eating a large meal.

    You may find it will help if you resort to wearing only cotton clothing so that the heat can escape from your body rather than being trapped by artificial fibres.

    With regard to the weight gain, it will help if you cut as many refined carbs from your diet as possible, and try to include plenty of known diuretic-type foods such as asparagus, celery, melon and fennel to reduce the steroid-induced fluid retention.

  • Just read your reply and was interested in the bit about diuretic food. Tx for that info. I do eat asparagus now as it's in season but didn't know about celery, melon and fennel. Will try.

  • Thank you Celtic,

    I have the same problems, head is the worst,it fills my spectacles, I also noticed perspiration after meals and immediately after a shower. I will take you advice on diet to loose weight around the upper belly and am starting to get moon face. These things made me want to reduce the prednisolone to 12.5mg for a month and then to 10mg , followed by 7.5mg etc , taking this through a 3 month period.

    Warmest Regards,

    raptorabz

  • Once you get down to 10mg you will need to slow down in your reduction, rule of thumb is a max of ten per cent at any one time. I reckon half a mg a month works well although some people try one mg. PMR is not a short term disease, most people have it for at least two years before it goes into remission and many for a lot longer. You cannot just work down to zero pred and the PMR will magically go away. The pred does not cure you, it merely takes away the inflammation and thus the pain.

    You will also find that side effects reduce as you cut down. I cut out simple carbs and gluten when diagnosed as I heard that it stopped the moon face. It worked but it may just have been luck on my part of course.

  • Thanks Piglette,

    I shall cut down slowly on pred, it's the weight gain on upper belly and starting of moon face made me reduce it to 12.5mg. I have been watching my diet with weight watchers diet and am still putting on weight and severe perspiring at most times of the day and night.Thank you.

    Warmest Regards,

    raptorabz

  • If you reduce in too big steps you run the risk of a return of symptoms in the form of steroid withdrawal rheumatism. If you reduce too far then you run the risk of PMR symptoms returning because the dose isn't adequate to manage the inflammation that causes the symptoms.

    Having had PMR for 5 years without pred and 7 years with and having put on a lot of weight first because of the PMR and not being able to exercise and then it redistributing because of the pred, I have had nothing due to pred that was worse than the PMR.

    Cutting carbs seems to be a better way of managing the fat around the midriff than most dietary approaches - it is slow but does seem to work.

  • Good morning PRMPro, I said I would update you on my mums situation following her appointment with the rheumy in Bexhill.He gave her an injection in the bottom on her previous visit which has resolved her prm symptoms in her upper arms/shoulders, for the moment. He has not firmly diagnosed prm however at this time.

    He has identified serious degeneration and spondilitis in her lower spine and recommended a tens machine for pain relief. It is this which is limiting her mobility sadly. Thank you for your help and I hope you are feeling well and thriving. Dave

  • ThanksPMRpro, I shall reduce it gradually by 1.5mg over a monthly period to the next stage. I'll try to do it in a 6 month period. I'll also make an appointment with the surgery to talk to them over the reduction .

    Warmest Regards

    Raptorabz

  • raptorabz - I am glad to hear you, too, are still gaining weight - even while dieting. I have tried the reduced carbs, gluetin free and on and on. Already take diuretics for bp. Have done it all. I did notice that in the beginning I had the increased appetite which was hard because I fight my weight even under normal circumstances. I have been on prednisone 17 months now and after 10 months that increase in appetite went away and I am back to no cravings and can easily stay on track. However, my weight gain has NOT stopped improved or changed so it is not just the appetite! I now own complete wardrobes in 3-4 different sizes. It is very depressing. It's that upper belly increase that everyone describes. Not usually my body type so nothing fits right. One thing I've found from experience and heard from others is that 10mg is the hardest to decrease from. I've been stuck on 10 for a year! Am now on 9 but barely covering my aches. Every night I pray for sleep. Hate this medicine but there's nothing else. GOOD luck ! we are all on the same journey and are good companions.

  • Dear alison12345,

    I know, I lost my appetite for food 3weeks ago when I was struggling with the upper waist ballooning and increase of waistline by 3". Nothing fits proper as you yourself know. As for you, you are still aching with pain and have to continue with pred. I have no more pain, but weight gain, severe sweating, and body thermostat not functioning as it should.L am still on diet food and now doing more walking hoping to loose weight. I wish you all the best in getting rid of the pain first. If I do find a way of getting rid of upper waist ballooning, I shall write it down for the community.Take care,

    Warmest Wishes,

    Raptorabz

  • When I cut carbs drastically it was the midriff fat that went first.

  • Thanks PMRpro, I shall do that. Thanks.

    Raptorabz

  • Hi, I was put on pred three months ago and yes I can't seem to control my body temp. One min I'm baking hot and clammy and the next I'm freezing cold. So yes I really think it does effect temp. Sorry to hear about your weight gain. It's hard at first when you get food cravings, I've tried to eat very low carbs, fruit and veg and very high protein and have managed to loose one stone. I've also done exercise when I've felt well. Good luck. 🌻

  • Thanks Zellamze, YES, the temp. control of body has gone haywire, hot and cold, I was unable to do any exercises early on on the course, the only reason the hospital put me on preds was because I refused to get up from the bed as I was in a lot of pain from neck to my ankle which looked like I had elephantthisis. I have been exercising for the last 2 weeks and been controlling my diet but I think I am still putting on more weight.

    Thank you.

    WarmestRegards,

    Raptorabz

  • It's the carbs, sadly! Steroids apparently alter the way that they are dealt with by the body and turn straight to sugar and then to fat! It's hard to give them up but it seems it's the only way. It's not about calorie control or smaller portions etc, we have to bite the bullet and cut them severely back. You have to watch out for the sneaky carbs that come in fruit and some vegetables, but it's been proved on here that if you take it seriously you can lose weight even whilst on Prednisolone.

    The other comment I would make is that I wasnt able to stick to a plan when reducing. I have ended up just listening to my body, no more than 10% down to 10mg and staying on the reduced dose long enough to make sure it had mopped up all the inflammation. So the time on each dose varied a bit. I want off steroids as much as anyone but not having a flare became much more important.

    I am currently moving down from 5.5 to 5mg using the dead slow nearly stop method and it's successful so far. I slowed even that down last week because I had stressful things going on, but back on track now.

    Good Luck! I hope you have an event free PMR journey. Lots of very experienced people on here to help. Way more helpful than most GP's.😉

  • That's quite a few of you who have said low carbs for people with pmr taking steroids. I am careful to watch my weight but follow mainstream nutritional advice of controlling calorie intake within a balanced diet. Am I doing something wrong?

  • Not if it is working for you!

    I did that, including lots of anti inflammatory foods but the weight still piled on and my face changed completely! Cutting the carbs made a difference for me. Eating carbs means an increase in weight for me but then back to taking more care and it comes off again.

    The thing is that we are all different and our PMR and the steroids affects us differently. Some people don't get the weight gain at all!

  • Dear Sheilamac, I think you are right, As far as I could remember, for the last 45yrs, I have never exceeded 10stones 8lbs, now in 2 months, I am 12stones. I am trying my best to avoid the fattening foods and am on weight watchers food now.

    Regards,

    Raptorabz

  • This is the great thing about this site ,the information you don't even know to ask for .I know nothing about carbs and such but this will make me think . Thanks I may look at my diet differently now and try another route ;-)

  • Yes, you are right PJRW, I myself don't know much about carbs, but I am now eating weight watchers meals and I haven't lost weight in the last 1 week, it's still at 12stones. Hope it starts to shed some lbs soon.

    Regards,

    Raptorabz

  • That's what most people have found with the normal slimming plans hence the low carb diet which does work.

    I would never have done this in my pre PMR and steroid life. Thought it was important not to cut a food group from the diet, just eat a balanced diet. However, this new steroid life has changed a lot of things including what we should eat....

  • Thanks Sheilamac, I'll follow you low carb diet and eat a balanced diet.

    Regards,

    Raptorabz

  • Poor you 🙊 Sorry to here that. Take care. 🌻

  • Hi

    I have only been diagnosed for a couple of weeks and I am coming down from 15 to 10 mg . Yes I am perspiring a lot too was very uncomfortable last night . Hope that helps .

  • Hi Hilmae,I thought the same as you, as I have been on Preds just for a short period of time ,4 weeks on 15mg, then down to 12.5mg for 2 to3 weeks and now at 10.5mg. I know I am perspiring a lot more than usual, this terrible hot and cold flushes and an uneasy feeling. Nevertheless , I will see the doc next week and talk to him about reduction, weight gain and moon face.

    Warmest Regards,

    Raptorabz

  • Why are you reducing from 15 to 10 so soon? Too big a jump and way too soon.

  • Drs orders ! Waiting to see a rheumatologist maybe it will all get a bit clearer then cos it is clear as mud at the moment .

  • Ah... So they think you don't have PMR? Oh dear, I hope you don't suffer too much. I suppose you weren't on it very long though.

  • Dear Sheilamac, I did think about it and am going to reduce it slowly as everyone suggest. I am going to 12.5 mg for a month and then lower it to 10mg. Today with the heat, I decided to stain the new fence and I ended up with severe cramps for well over 3 hrs.Looks like pmr also brings in cramps.I wonder if others also suffer from cramps.

    Warmest Regards,

    Raptorabz

  • Try magnesium supplements - and also ask your doctor to check your electrolyte and calcium levels. Pred makes you lose more of several things in your urine and a low level of any or all can lead to cramps, in the case of calcium and potassium that can be dangerous if they get too low. But magnesium is the most likely and you can easily get supplements for that. You can't really overdose as excess is just lost through the bowel - and too much will give you diarrhoea!

  • Thanks PMRpro, I read your post earlier and went to Boots the Chemist and bought calcium and potassium supplement and also Rehydration Treatment. I have taken them and all holding well now. Thanks very much,

    Warmest Regards,

    Raptorabz

  • I totally agree!!

  • Good to read your pains have gone. Weight gain and sweats are sadly some of the side effects as has been answered before. Personally I have avoided the sweats, but the weight gain is an issue, 3 since since diagnosis seven years ago. It's a battle for sure and with type !! diabetes as well it's difficult to know what to eat. Here on the forum I often read that carbs must be avoided at all cost. Yoy have to find out what suits you and your body.

    Wish you all the best.

  • Thanks Gosingen, I am not only fighting weight gain and sweating, I felt good this morning and decided to stain the new fence put up after winter and 1 hr into the job, I started to get severe cramps in my fingers and toes. I abandoned the job and tried for 3 hrs to calm my cramped hands . My toes eased off quickly and I have never suffered from cramps on my fingers. I was an aircraft engineer for 39yrs and I used my hands all the time , never suffered cramps. Looks like pmr also brings in cramps when you sweat a lot with the heat today .

    Warmest Regards,

    Raptorabz

  • Prednisone makes me very hot, but relieves the severe pain. It also causes weight gain, however I have been able to lose weight by eating vegetables and chicken. Good luck to you.

  • Thanks alice58, yes, prednisolone does make the body temperature control crazy, I sometimes feel cold and sometimes very hot, there is no in between control. It's the weight gain and starting of moon face has me worried. I do eat a lot of veg and chicken, and also fish. I am hoping that I will be able to reduce the terrible upper belly first and the moon face.

    All the best,

    Raptorabz

  • Ah thanks- I know of no one with familiarity to PMR- my doc is a "less is less" kind of informant of side effects. It's been a blessing to have this site provide connection, as the pain I experience under my right rib cage had me so fear filled at its on set. Along with othe aha moments of clarity.

    The seizing up of joints was a shocker, when I was at my "I have the worse flu ever" diagnosis, I could t bend my wrist nor fingers, so I am sorry for your experience. I wish you continued freedom of pain and ease of Movement.

  • Thanks klairvOyant, I myself am new to this illness and to this site. They only diagnosed me with pmr after I refused to get out of the hospital bed as I was in severe pain. My health surgery gave me dihydrocodeine and tramadol for over a year with this pains and the painkillers stopped working on me. I am now feeling good with NO pain. With your high dosage, most of the inflammation and pain should go away soon. I stay away from anyone who has got the flu as I can't handle flu either. Do you suffer from cramps on fingers and legs and toes?, I am , just found out today when I did some painting of the fence.

    Take care, wish you all the best,

    Raptorabz

  • The side effects from the PMR OR PREDNISONE aren't clear to me. I've been diagnosed for 2 1/2 months; what a weird ride. I'm no stranger to disease, surgery (11 of them), but the inability to get pain controlled is anxious making. Yes, sweats - I NEVER perspired before this, soaking even with light working, heart racing and manic. I was put on 60mg at 1st, now down to 20/30 alternative days. I've tried to go with 20 mg, ouch. I am on 25mg fentanyl/dilaudid for chronic pain from other health issues. Hard to decide how to move forward . So I understand your situation.

  • Hi klairvOyant, I am sorry to hear that you are on a very high dosage, the perspiring is crazy, you body temperature thermostat has gone crazy, just like mine, constant perspiring for the smallest work load. I am not suffering from a racing heart but am suffering from cramps on fingers if I use my hands to do anything. This is also diving me nuts and the severe weight gain and now appearance of moon face.

    I wish you all the best,

    Regards,

    Raptorabz

  • Absolutely. Sadly very normal response to lowering dose. I have just done the same for the umpteenth time & The pain came back so I have decided that it's better to have a fat face & weight gain etc than pain. Good luck!

  • Hello Cemmein, the pain I had has gone with prednisolone after 4 weeks at 15mg, and now I am at 12.5mg, no signs of pain, except cramps on my fingers today after trying to stai the new fence.

    Wish you aim the best,

    Raptorabz

  • I also have experienced cramps in my hands. Sometimes just from holding cutlery. I assume it is because we are overusing the muscles in one particular area and blood supply is not good because of the pmr. Our muscles are intolerant to exercise and that includes those in our hands. Hope this helps

  • Thanks Cjval, I earned my living before retiring as an engineer and used my hands daily. This sudden cramps just after staining a few panels on my new fence caused severe cramps and I was shocked initially. Now I understand that with pmr and prednisolone , we do end up with cramps if we over use or do repetitive movements with our hands. And also the severe sweating is not helping as PMRpro said. Thanks again,

    Warmest Regards,

    Raptorabz

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