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i feel like im burning up

Posted , 12 users are following.

tuningup
tuningup

I am so hot but not in a good way...lol..all day long ive had hot flashes and now im just plain hot...im not sick..i took a pain pill to cope with fever and i wipe myself down with cool cloths that feel very cold but they r just baby wipes at room temperature...im on third day increase pred  .was on 20 to 17.5 to 20..is this the prm or pred making me feel this way..ill tell you ive been through a lot in my life but this has me totally discouraged..im only 2 months into this prm how will i take years of this...im also short of breath just sitting  but thats been going on for months...do i just deal with this or call dr...i cant remember what it is to feel good but when i wake up i feel half way decent except for stiffness but as the day goes by i feel worse..is this the pred...ty for listening to my whining...sharon

 

1 like, 16 replies

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  • erika59785
    erika59785 tuningup

    Posted

    Hi Sharibm I feel for you!!! PMR is tough, and I know how you feel.  You are only 2 months into this miserable disease......I was diagnosed 5 months ago and have had so many ups and downs.  I have had a terrible flare Sunday, and I am recuperating from that.  I was down to 14 mg of Prednisone from 20.  I had to up it again because I was in such pain.  I also suffer under hot flashes,  especially in the mornings because of the higher dosage of Prednisone.  My GP wants me on the higher dosage of 25 for 5 days, and then go down to 20 for 5 days....but then reduce only by 1 mg a month.  I hitch a snag once I try to get lower from 20. 

    Eileen will be more helpful with her guiding knowledge.

    For now you have a fellow sufferer who feels for you and wishes you all the best.  Don't despair.....there are days when one feels okay, and one actually THINKS the PMR is gone, but it is not.  Prednisone does control the pain when it is taken in the right amount.  All the best to you!  Erika

    • tuningup
      tuningup erika59785

      Posted

      Ty erika...my dr basically told me i have pmr, and gave me pred...all the information i have i have found on my own...not knowing how long ive had it..not ever being on prendisone...having what people call flare ups...not knowing what to expect day to day i really appreciate the help i get from this websight...ty for taking the time to write to me...im sorry that you too have this crappy disease...i post a lot of questions because i just dont have information about day to day life with pmr...thank you for being so kind..sharon
    • erika59785
      erika59785 tuningup

      Posted

      Sharon, this website is full of information.  I did not know much about PMR either.  I was desperate and joined, and I am so happy I did.  I would be so alone without the input of fellow sufferers who have struggled just like I am and like you are.  It is a learning process, and one needs to realize that this disease does not go away, although at times it feels like it.

      Luckily, Prednisone makes life livable when taken the right amount.  Usually, so I hear, 15 mg controls the PMR inflammation.  My shoulders are effected and my lower back.with piriformis syndrome.  I do get Physical Therapy for my left shoulder, and massage for the lower back with heat.  It does help.

      These flare ups can be VERY painful like it happened last Sunday. They can happen "out of the blue" and very sudden. Stress often can be the cause, and I think it was, but also trying to lower the Prednisone dosage maybe a bit too fast.

      It is difficult to know....sometimes, I think it might have been the wrong food.  I am trying to watch what I eat, and that it is healthy, but sometimes one does not have control over it --- especially going out to restaurants.

      I think I had indications of PMR probably a year ago, but now I feel it is full blown, and I am happy when I am able to get out of bed without too much stiffness and pain.  I understand that there will always be some discomfort one has to live with as long as it is not severe.

      Just a few thoughts replying to your message.  Remember, you are not alone.  We are all here for support.  Erika

  • tina-uk_cwall
    tina-uk_cwall tuningup

    Posted

    Hello there, you really sound as if you're having a bad time. Firstly I'm not medically trained. Why did you have to increase your dosage back up to 20 mgs. you say that you've been diagnosed with PMR now for 2 months so what was your dosage regime until you had to increase the dose again. How old are you.

    in relation to the shortness of breath you must inform your Dr of that Asap so that you can be referred to the appropriate specialist. I don't think that is PMR related so it needs to be sorted. I assume you're in America because of the time difference, we're just waking up here in England. Please try and stay calm, we have the flu here in england at the moment and what you're suffering could be something as simple as that. But if you really are terribly worried try and book a drs appointment Asap, this worrying is doing your recovery from PMR no good at all. Christina 

  • Sheilamac_Fife
    Sheilamac_Fife tuningup

    Posted

    Hello Sharon

    I also suffered from the horrid hot flushes when I was on slightly higher doses of Ptednisolone. Pouring with sweat! I still have it occasionally, especially at night. I started at 15mg in July 2014 and am currently reducing very slowly from 12mg to 11.

    I also suffer from breathlessness. It started within about a week of starting Prednisilone. Doc sent me for chest xray and did ECG which were all normal (best to check) but I knew it was the steroids. I just live with it now. I am hoping that as I reduce them it will go away. It has certainly improved. Now I can walk on the flat for good distances, I can take a shower and get dried and do light housework without getting breathless, none of which I could do a few months ago. However, going up hill, even a slight incline still brings it on. I accept it and rest. I hope this helps Sharon because I remember at the beginning I was very panicked by it and that did not help. The doctors were no help either because this side effect of Prednisilone does not seem to be documented.

    All I can say is get it checked out in case it is something else, but listen to your body and try to relax when these annoying and sometimes frightening symptoms appear. Remember, it will pass. I seem to he luckier than some in that the Prednisilone completely took my pain and stiffness away unless I try to reduce it too soon, but the breathlessness and fatigue are what I am left with.

    You are not whining Sharon. We are all suffering as we try to understand this condition and deal with the side effects of its treatment! Good Luck! Let us know how you get on.

    Sheila

  • MrsO-UK_Surrey
    MrsO-UK_Surrey tuningup

    Posted

    Sharon, you are in the very early stages of your treatment and, as the others have said in support, having been there they can totally empathise with you you are feeling.

    Hot flushes or generally just feeling hot is very common especially on the higher doses of Prednisone/Prednisolone, and as you are somewhat yo-yoing up and down on your dose at the moment to try and get control of the inflammation, your body is sure to be rebelling a bit.  Strangely, I found that my flushes would often worsen immediately following a dose reduction, which I feel sure was my body rebelling.   On the other hand, you may simply be harbouring some infection or virus at the moment.

    As far as the shortness of breath is concerned, this is something that you should really check with your Dr.

    If you drink coffee, then either try and cut this down or, better still, avoid it altogether.  Also try and avoid all spicy foods.  These all aggravate the hot flushes and more so in some people than others.  I even switched to decaffeinated tea.

    Chin up for a bit longer while you ride out the worst, Sharon.  Many of us have been there and got the proverbial T-shirt, so whine away whenever you feel the need as we all know exactly how you are feeling......a problem shared is a problem halved!  We can promise that better days are around the corner. 

  • debbie27473
    debbie27473 tuningup

    Posted

    Hi Sharon. I suffered from these hot spells all the time I was on 15mgs of pred. Something as simple as going upstairs to the loo would leave me pouring with sweat! Also every time I ate a hot meal for some reason. Since I have started reducing (I am down to 10mgs now but its taken me 14months) I have found some of the side effects are lessening, including the frequency of the hot spells. I also get the breathlessness and palpitations. Since reducing, the palpitations are very infrequent but the breathlessness is still a problem. Lots of us on the forum have reported it. Like you, I was also told 'You have PMR. You will need to take steroids for a year. Reduce by this amount every month! That was it. The doctor I saw the following month gave me the address of this site and it was like a gift from heaven! Now I know whenever I need some support and a metaphorical hug, there is always someone waiting to listen and sympathise. I wish you all the best. Keep us posted on your progress. Debbie
    • Sheilamac_Fife
      Sheilamac_Fife debbie27473

      Posted

      Hi Debbie

      Its not good you suffer from the breathlessness but it is good for me to read. When I developed it first, I couldn't find anyone on here that had experienced it I must have missed other people's comments, I was new to the site.The doc wouldnt have it that it was because of the Prednisilone! When my heart and lungs were fine, she promptly ignored it.... She never mentions it... Hopeless really...

    • debbie27473
      debbie27473 Sheilamac_Fife

      Posted

      I have been referred to a cardiologist and have undergone tests for heart problems as he did not believe my symptoms were caused by the pred. When I had my ECG, I was told I have very high 'P' waves which is an indication with the other symptoms of heart or lung disease. Scared the life out of me! He sent me for a ct scan which came back clear. He promptly discharged me without even a further consultation or explanation of what might actually be causing it. So....I have blamed the Pred for everything and hope I live to tell the tale lol! all the best, Debbie
    • Sheilamac_Fife
      Sheilamac_Fife debbie27473

      Posted

      Hahaha... You have to laugh sometimes, don't you! Thank goodness for this site! The docs! They don't understand it so they just abandon us! Go away and come back with an easier complaint, maybe something I can give you an antibiotic for... Hehe... We have to be so pro-active these days.

      I feel very sad for the many sufferers who don't have the ability to go online... After all this is mainly a condition afflicting older and elderly people and many will not have access to a computer and anyway not be able to use it if they did. There must be so many out there. It also seems to me that a great many of this generation believe totally in what their GP says.... 

  • teenyjeeny
    teenyjeeny tuningup

    Posted

    Hi There I have had PMR for 14 years now lots of flare ups and lots of good times inbetween. the last year I have have had a lot of other health issues and that does not help the PMR at all.It is very hard to cope with at first and you will feel allsorts of things like you are , but always check out at the Docs. I get very hot on high dose. also breathless  but again I never know if its the PMR or the other things I nave wrong. good luck , see if you can see a good Rhuematoligist to give you advice . regards Jeannette
    • TERI23
      TERI23 teenyjeeny

      Posted

      Omg I will be dead before I ever get over this retching pmr
    • EileenH
      EileenH TERI23

      Posted

      It doesn't always last that long - about a quarter of patients are off pred in a couple of years or less but are at a higher risk of relapse later. Half of patients get off pred in up to 4 to 6 years. Only in a quarter of us does it last much longer.

      I may have had PMR for 10 years and still be on pred but I feel well, have very little pain, the occasional bad day but we all have them, PMR or not. It stops me doing a few things but nothing that the majority of people my age wouldn't do anyway. A lot is attitude - if you give in to it you will think it is the end of the world. Accepting that this is where you are and not fighting against it (not the same as giving in by a long way) but learning to accommodate it in your lifestyle rather than tempting fate means your energy can be directed at living well. Your hobby may have involved a lot of exercise - that may not be possible. Some so-called friends may drop you because they don't want the effort of supporting you. But you will find other pastimes and probably make a lot of new friends - that has been the experience of many people on the forums. It is up to you.

  • EileenH
    EileenH tuningup

    Posted

    Feeling hot is not uncommon - and it can be either the PMR or the pred. I have had PMR for 10 years, 5 years without pred, 5 years with pred, i've had my own built-in central heating the whole time! It hasn't been easy married to a husband who is permanently cold! 

    Nearly 3 years ago I was diagnosed with atrial fibrillation and high blood pressure and put on medication. Which immediately calmed down the heatwave! Since then I have reduced from 15mg to 4mg pred - and this winter I am absolutely FROZEN! Last winter we had weeks of temperatures way below freezing and this winter is far less cold - but I'm wearing a t-shirt and a sweatshirt indoors. Last year I wore a vest and short sleeved shirt under my jacket outside. And I need socks - for the first time for years.

    It will improve as you reduce the dose, it will also improve as your body gets used to the pred. In the meantime, wear layers so you can take something off easily if you are too warm. Turn your heating down a bit if you can - persuade other family members to wear an extra layer. I haven't needed more than a summer weight duvet for years and often had a fan on in the bedroom. One year I had the bedroom door to outside open but with the blind down when it was -15C or colder overnight. I don't recommend that mind you!

    The breathlessness is a not very common side effect of pred - there is a paper from the Netherlands I think it is - written to warn GPs that it happens and you don't always need to panic and send the patient for expensive and scary (for the patient) cardiology tests. However - if it has been going on for months it isn't the pred and should be investigated

    You don't need to take medications for fever - if you are developing a fever you usually feel shivery not hot.

    Have your symptoms that are meant to be PMR improved after being on pred? By about 70% over without pred? If they haven't, then it may not be PMR and other answers should be considered and ruled out first.

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