Desperate to get help for these terrible hot flushes that happen every 30 minutes with excessive sweating on 30mg steroids will it improve?

[Healthhopes]

These temperatures and sweating are making my life a misery -Has anyone found that by lowering the steroids that this problem improves - I can't sleep as I am up at least 5 times with sweat trickling down me and the roots of my hair soaking. I see the Rheumatologist next week. Grateful for any hope or help you can give me till I see her.

[Celtic PMRGCAuk volunteer]

Hello Healthhopes

I did have experiences of moments of massive sweating whilst on steroids, strangely every time during a meal, often following a reduction in dose and was frequently pushing off the bed covers even in the coldest winter nights.......and then within minutes getting freezing cold again!

I gave up caffeinated drinks, in fact I gave up coffee altogether - even decaffeinated drinks have a certain amount of caffeine in them - and I tried (not completely successfully!) to give up chocolate! I did have decaf tea and still do. But rest assured that these sweats will definitely reduce as you reduce the steroids.

[Healthhopes in reply to Celtic]

Thank you for responding so quickly to my cry for help Celtic - I will try decaf to see if it can help also interesting what you said about chocolate.- since being on steroids I eat a lot of chocolate (hence having put on 2 stone since I got the GCA). Will try to resist the chocolate! Thanks for your assurance that these sweats will subside as the steroids are lowered. It means so much that other people care and your not on your own - this has been such a long road for me having every symptom for GCA. Now I know that there are other people out there with this disease I will find the courage to beat this. Wishing you and all with this disease a pain free happy day!

[Celtic PMRGCAuk volunteer]

Hello again Healthhopes

You'd be wise to really cut down on eating "a lot of chocolate" as apart from the caffeine which could contribute to those hot flushes, the sugar won't be doing your adrenal glands any favours, added to which you run the risk of steroid-induced diabetes. Our adrenal glands get suppressed on high dose steroids and both coffee and sugar should be avoided as they can place further stress on those adrenals. Even more important to remember this as you reach the lower doses as the adrenals will then be trying to get going again. If you're a coke or soda drinker, then I should mention that they also contain caffeine. I felt that I'd lost all control of my life when in early stages of PMR and GCA and decided that if I could control only one thing, it would be my diet.

[Green_girl]

Wholly agree re diet. I would never have believed the difference until I took the plunge. Have to say I was not looking forward to all the hassle - especially if out. But now I would say I never want to go back to things with processed sugar in (chocolate is a no no, as it excites the adrenals as much as caffeine), or caffeine, even when I've kicked this horrid condition!

Leaving out sugar will help your weight too - but don't forget to add in good fats, loads of great veggies, protein. Low fat live yoghurt and cottage cheese, plus slow release carbs are really good too - and eat little and often.

I get hot flushes too - in fact they've never gone away since the beginning of the menopause over 15 years ago - but got much worse when PMR struck. So the condition itself, especially in the early days, will induce horrid, awful sweats. This is because the body is attacking itself. Then add in chemical drugs which help the adrenals and the side-effects start.....we can't win! Rest assured that the sweats will subside as you improve. I understand that's not much help while you are going through it, I know, but they will get less - honestly. The best thing is to 'work' on de-stressing and allowing yourself to accept, just for the time being. Stress will not help anything.

Hope our responses will have helped towards de-stressing for today. Hang on in there! And a timely reminder to me not to stress either

[Healthhopes]

Thank you Celtic and Green Girl for your advice and encouragement - My excuse for eating so much chocolate is that I was 9 stone when I got GCA early Feb this year, so felt that there was room for special treats (and an appetite that I had never known or thought possible). Getting up at 3a.m. and eating a massive bowl of crunchy nut cornflakes was just the start! I had not considered the adrenal glands as there is so much that I do not understand about this illness. The steroids have given me so many problems - depression (and I have never been a depressed person, as I love life and have always thought that there are so many folk out there who are far worse than me and just get on with it). I also have an underactive thyroid gland which I take a tablet for and also high blood pressure and take 100mg tablet (shake me and I rattle) my stomach is always swollen and bloated (I look 6 months pregnant, but can hide it quite well with the right clothes) is this a usual side effect with taking the steroids? I probably have been more up tight than normal as my appointment that should have been in August with the Rheumatologist got cancelled and was told there were staff shortages. The good news is that the new appointment is next Thursday (if they don't cancel it!). I will let you know how I get on and hope that I can get information that I can help you with too. I have my blood test the day before with my GP who will send through the results to the Rheumatologist for the ESR (last ESR was 58). Wishing you all a pain free week-end and sounds like we may even get a little bit of sunshine this weekend - best medicine ever combined with laughter - magic!

[Celtic PMRGCAuk volunteer]

Yes, Healthhopes, "looking 6 months pregnant" about describes me too when on the very high doses, plus the buffalo hump and the hamster cheeks! No wonder it's tempting for us to want to turn to comfort eating - better just to turn all the mirrors the other way round! I also had an appetite 'to die for', and Green Girl's advice to eat little and often can really help, but obviously not high fat or calorie laden. I used to eat lots of casseroles and save a very small dinner from the previous evening and reheat it late morning the following day, and have something like a bowl of home-made soup later to keep me going until my evening meal (home-made because the bought ones are too salty which can add to the steroid-induced fluid retention).

Oh it's so frustrating when your well-needed appointments get cancelled and I really hope there isn't a repeat of that next week. You mention ESR blood test and I wondered whether you have CRP tests as well - the latter is said to be more specific especially where GCA is concerned. Also, if you haven't already had one, it would be a good idea to ask for a Vitamin D blood test. Many of us have been found to be deficient and one of the symptoms of Vit D deficiency is muscle/joint pain, plus many other possible nasties. If deficient, a 3-month course of high dose pure Vit D3 is need to boost the levels to within the normal range (75 to 150/200, depending on your local PCT area). I was found to be deficient with a reading of 36, and a 3-month course of 2,000 a day boosted it to 89. You may have been prescribed a Calchew plus Vit D pill at diagnosis, but, if deficient, this is generally not sufficient to boost your levels to within normal range.

I hope the promised sunshine will materialise and help to lift you'rs and everyone's spirits in the next couple of days - a daily walk, no matter how short, can also boost the feel-good endorphins. Chin up, Healthhopes, better days are around the corner and you will be pain-free again.......and back to 9 stone!

[Healthhopes]

Hi Celtic - your encouragement and advise is so welcome - I think I may have found my guiding angel, it helps so much to know that others care and you really seem to know even better than the Rheumatologist. Thank you for explaining some of the medical jargon as I am still trying to understand how it all works. Off to get the fan (not the chocolate!) Kind regards & hugs to a special person!

[polkadotcom]

Oh, Healthhopes, the weight gain was my major problem and I weighed only 7.5st when it all started. I've just managed to lose 2st, but that still gives me a lot to dispose of somehow. At my heaviest I was 11.4lbs but on a bad day I still look 6 months pregnant! I just wish I could shift some of this flab round my middle, but right now exercise is difficult as I have leg problems.

As Celtic says, it does get better gradually and I am hoping for a little sunshine tomorrow so that I can go and potter in my garden. I have to get started on putting-the-garden-to-bed routine.

[Green_girl]

Hello Healthhopes - and anyone else reading this thread...

I get HUGE depression on steroids - in fact I don't tolerate any chemical drugs well, - so much so, I was considering going to Swtizerland.....keeping on breathing in and out has never been so unwanted. Fortunately I had a tiny sliver of self left and realised it was not all 'me'. Doc has put me on a small amount of anti-depressant. It does help enormously. This angle of my health is looked after by the GP. I also have my Pred by jab (depo medrone), as that does not give big side effects (if you discount bone and muscle being attacked...!) - and I'm now fine.

I had to give full reasons for not being able to have tablets, but if your depression is really big and your life is at risk, then that is a medical reason for going down the jab route. Depo medrone will not be given often, because it is far more expensive to administer and means the patient has to do more - blood test before each jab, more appointments with Rheumy nurse in hospital where the jabs are done. That's a great pity, as not having any 'visible signs' of being on steroids is better both emotionally and physically - it would really help people who are ill not to also have to struggle with weight-gain, hamster cheeks, etc. on top of everything else.

I want to get off the anti-depressant, but know I can't until the risks of flares has gone. Still, my fighting spirit is back and I'm happy to be around, so that's fine by me for the time being! I also take lots Vit D, as that is good for depression too.

So, if you are depressed please, please go to your GP and discuss. Don't let it fester in you. You don't need much anti-depressant to feel good enough to cope. You may even be offered CBT or talking counselling - I paid for my own talking counselling as CBT was not right for me, I had gone too far down the depression route. I consider it a good use of what money I have.

Medics must not miss big depression. If necessary write everything down before you go, so that you are not so stressed in the surgery - your written record can also go into your notes, which is a good thing. In fact I write things down for medics all the time now, as it makes sure you really give your side of things. If the doctor then doesn't take notice and something doesn't go right - you can point to your written record that should have been taken into account.......at least it gives you a sense of doing something to help yourself!

Hope this helps you - getting depression makes us feel useless and weak and of no use to man nor beast.......do not ignore it!

Every best wish for you

Green_Girl

[Healthhopes]

Hi Green Girl - Thank you for responding - You are very astute in recognizing my depression which I struggle with since losing my darling Dad 10 weeks ago. I was my Dad's full time carer and saw him, or spoke to him everyday. He lived just across the road to me and we shared many difficult times, but also very happy times (those happy memories I hold close to my heart. My Dad was amazing for his age (91 years young) and he so loved his family. Back in early February this year I started getting pain in the right hand side of my neck which led up to the right hand side of my right temple and an ache on the side of my head which was very tender to the touch (and headaches every day). My Dad had been in and out of hospital and I had to say goodbye to him when he went for an emergency life saving operation which the surgeon said he probably would not make, but he did!. and I was able to have another precious 6 months time with him. Also my Mum in Law was ill too and we would try and get to see her as much as we could as she lived further away. We lost my Mum in Law on 1st June and my Dad on 30th June (2 funerals within 4 weeks, bit of a hard pill to swallow). I'm sorry that I digress continuously but the point I am trying to make is that I was convinced that I did not have GCA and it was just all the stress. Unfortunately the blood tests showed otherwise, red markers that were, and are still high. Taken prednisolone since February this year started on 50mg. Each time tapering happens all my symptoms come back.. Many conflicting views (as you all well know) Not on the high dose for long enough, too little etc. This seems to be the norm, searching for the right balance for me. These steroids sure mess up your mind and play horrid tricks on you and your body, but as the last Rheumy said to me - "Its better than going blind" can't argue with that can we?

I have a chest infection which I am getting over (my GP put me back up to 40mg steroids), and I go for my blood test tomorrow and the Rheumatologist on Thursday. At present I am happy to say I am pain free, just In discomfort with the sweats, although they are not so frequent since taking the advice of CELTIC and stop the chocolate and no coffee (thanks again Celtic). Also I think the extra steroids have helped, although I do feel as if I am in a bubble - but I am determined to find a way out and get my life back. Today my plan is to find the courage to go and collect my Dad's ashes as I have put this off for far too long, but hand on heart only because I have been continuously unwell all this time.

I do apologize for having gone on about my problems when I know only too well that so many of you are dealing with a lot worse than me. I hope you will forgive me for being so selfish and I will let you know if I can get any new news that may help you from the Rheumy on Thursday. Sending my kind regards to you Green Girl. Happy days are just around the corner!

[Green_girl in reply to Healthhopes]

Hello Healthhopes - just writing to see how you are getting on? Hope you are feeling a bit brighter in yourself and the sweats are still less. How are you fairing without caffeine and chocolate?

[Celtic PMRGCAuk volunteer]

Hi Healthhopes

Please don't feel that you need to apologise for sharing your problems with us - it's what we all do on a virtual support group like this and the hope is that a trouble shared is a trouble halved, as the saying goes. You've had so much to deal with on top of being in the early days of GCA that it is so not surprising that you are feeling depressed, and the recent chest infection won't have helped either. Our immunity does take a battering especially whilst on the high dose steroids - have you tried taking a guaranteed quality Manuka honey daily? That can help, as can garlic, and a few squirts of freshly squeezed lemon juice in warm water as a detox as the first drink of the day. I hope you managed to pluck up the courage to collect your Dad's ashes today - very sad, but you will probably feel that you've overcome a big hurdle when you've done that. A lot of positivity comes through in your posts - you will be fine, just take each day as it comes and slowly you will achieve little things that enable you to get control back over your life. A cuppa and a chat with a favourite friend who understands can be a big help too. Also, have you looked at the PMRGCAuk home page to see if there is a support group in your area? All good wishes for the blood tests tomorrow.

[Healthhopes]

Hi Celtic

Thank you as always for your kind response and ever helpful advice. I have good news since not drinking coffee, having decaffeinated tea and NO chocolate, my flushes and sweats have eased (such a relief) I am so grateful for your help. I will certainly try the Manuka honey and the garlic and fresh lemon. I am feeling so much better today and happy because I DID find the courage to collect my Dad's ashes yesterday, and you are so right - I do feel I jumped a huge hurdle and feel a great sense of relief and comfort knowing now, that if I was able to do that I can do anything! Positive thinking! I will also look at the PMRGCAuk home page to see if there is a support group in my area which I would very much like to join, (especially if they turn out as helpful a bunch as you).

Kind regards - Hope your health is improving and that your having a happy day

[Celtic PMRGCAuk volunteer]

Hi Healthhopes

That's "good news" indeed about the easing of your sweats already - it never ceases to amaze me how small tweaks in our diets can help with so many drug side effects.

If you do try the Manuka honey, be sure to buy jars printed with the letters 'UMF' (Unique Manuka Factor), either 5+/10+/15+ or 20+ - that guarantees the level of beneficial activity. I have taken a teaspoonful daily for many years, mainly UMF 10+ but during the winter months I often take the higher Factor 15+. Unfortunately it is very expensive, so I try and buy it when H&B have their special offers. Not only is it recommended for our immune systems, it has a whole host of other benefits including help with esophagus problems, and hospitals now use a more purified form of it to treat such things as leg ulcers.

You can feel very proud of yourself for jumping that difficult hurdle yesterday - well done!

Thank you for your kind wishes - I came off steroids a year ago after a fairly long innings and I hope that offers hope and a bit of a morale boost to you and everyone still struggling.

[Healthhopes]

Hi Celtic - Thank you for the information on the Manuka honey which I have noted and will be getting at the weekend. Amazing news with the Rheumatologist yesterday - blood readings excellent - ESR down from 38 to TWELVE - how fab is that! So I can taper from 40mg to 30mg. However on not so good a note, my B/pressure was through the roof 200/117 hence yet more tablets. Also he was very concerned about my swollen stomach which was at it's worst yesterday, (I looked like I was expecting twins) hence I now have to have an appt. for next week for a CT scan for my chest and stomach. I asked if it may be to do with taking the steroids, and if it is connected with my GCA - He said there was a possibility, but of course he could not commit himself. I also had to have more blood taken.. He asked to see me again in 4 weeks, so I think I am now being very well looked after and am very grateful to him for at last getting more help. Today is such a beautiful day (hope it is for you too, and that you can get out in your garden and have a potter). Once again thank you for your advice and encouragement, especially was so good to hear that you came off steroids a year ago - music to my ears! Well done you!

Kind regards

[Rustyred]

Know you are not alone .... I am going thru the sweats and flushing also .... Severe asthmatic.... I don't know if it really works or just wishful thinking but eatting watermelon seem to help during the day .... Seems to help flush the system ..... I don't take eat it at night do to the number if potty visits it would cause ....but the sweats seem less during the day they come on again in force after like 8 ish