1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Concern with steroids

Posted , 12 users are following.

lyndsay250258
lyndsay250258

Hello, I was diagnosed with PMR by my Dr in Oct 2014. The only reason she came to the conclusion of PMR is because i had muscle soreness, but most importantly I mentioned that I occasionally get a sharp pain along my temple now and again and she was concerned about GCA. Obviously I want to feel better again, but the thought of taking steroids scares me. Because of this, I haven't taken them, but have instead taken Magnesium and Vit D, along with Devils Claw. I'm not in pain constantly, but I do feel stiff when getting up from a chair etc...

My concern about taking steroids is what damage would these drugs be doing to my body in the future ? I'm a 57 yr old woman, feeling old, where all my life I have looked and felt young.

Can anyone advise please ?

0 likes, 22 replies

22 Replies

Next
  • tina-uk_cwall
    tina-uk_cwall lyndsay250258

    Posted

    Hello Lyndsay, perhaps you may be right and not have pmr, however, you are keeping this from your clinician when you could have had tests, been diagnosed with something else and received treatment for your newly diagnosed condition.

    also if you have not been taking preds how well has your GP been monitoring your condition and recovery journey? By now you should have received blood tests and should be steadily reducing your preds, have they not enquired as to your well being? Regards, Tina

    • lyndsay250258
      lyndsay250258 tina-uk_cwall

      Posted

      Hello Tina, I've had 1 blood test, which was taken about a month after my diagnosis, but nothing since. I had told my GP of my reservations at the time, however, she gave me my prescription and suggested "I give it a go"
    • tina-uk_cwall
      tina-uk_cwall lyndsay250258

      Posted

      Lyndsay, I think you need to return to your GP and fes up. After a year and a bit I would have thought that your symptoms would be much worse yet if I understand correctly yours haven't. Also, I assume the headaches have cleared up or do they clear up if you take a paracetamol, again if they do, it will not be GCA that you have.

      Again do you ever take pain killers for your aches, if you do and the pain goes then that us another indication that you do not have pmr.

      go back to her and explain your symptoms throughly and see if she will order some tests and a referral. Tina

    • lyndsay250258
      lyndsay250258 tina-uk_cwall

      Posted

      Thank you Tina, I shall ring the GP tomorrow to get an appointment. You have given me something to think about

       

  • ptolemy
    ptolemy lyndsay250258

    Posted

    Lyndsay if you really do have GCA taking steroids could stop you going blind. Yes they do have side effects but I don't think anyone gets all of them and some people get none of them. Let's face it the majority of drugs will affect our bodies in some way. 
    • lyndsay250258
      lyndsay250258 ptolemy

      Posted

      I think this is mainly what my GP was concerned about. However, she didn't mention the blindness to me at any time, only that the seroids would stop the headaches...
    • ptolemy
      ptolemy lyndsay250258

      Posted

      Steroids really are a wonder drug. I have PMR and they worked like magic.
  • Nefret
    Nefret lyndsay250258

    Posted

    I was 57 when I began steroids.  I'm 71 now and my photos still look like me (although they didn't at one point - I looked immensely better).

    If you do have PMR/GCA then you could be compromising your own future, having unchecked inflammation in your body is no gift.

    • lyndsay250258
      lyndsay250258 Nefret

      Posted

      Thank you Netfret, It seems I will have to overcome my fear to safeguard my health. I couldn't see past the fear of these drugs.

      The replies i've received are starting to make sense, thank you

  • EileenH
    EileenH lyndsay250258

    Posted

    Longterm unmanaged inflammation in the body can increase the risk of cardiovascular disease and some cancers. If you were to develop GCA then you run the risk of losing your sight, permanently.

    Have you tried taking pred even as a trial for a week or two? A couple of weeks at 15mg wouldn't do you any real damage and you could stop straight away - it might clarify the rather vague situation you are in. If it is the PMR we discuss here it should make a massive difference to how you feel. PMR is just the name for the symptoms - many painful muscles - and it can be caused by a variety of underlying disorders which I assume your doctor has already ruled out. Most of them do not respond to a moderate dose of pred. If pred makes no difference then it is likely to be something else and further investigation would be called for.

    I had PMR for 5 years undiagnosed - I was given no choice about trying pred to see if it helped. The first 15mg at 10.15am allowed me to walk down and back up the stairs normally. I've been through a fair bit because of pred since then, it's too much to descibe here yet again, but at no time did I ever think I'd rather not take pred. I've had a couple of major flares for various reasons - just to remind me what untreated PMR feels like. No - not going back there  if I can help it.

    It isn't as simple as pred is bad, no pred is good - how many times have I written that in the last 6 years to people just like you? In fact - if you search those dozen words you will get at least 8 links on this site alone where I probably have written at length about it as well as at least one on the HealthUnlocked forum.

    At a guess you are worried about it or you wouldn't have asked the question. Why not try a week of pred and see how you feel. I've had PMR for 11 years, I was still just 51 when it started  - do you really want to feel as you do now for years? You may be a "2 year" person - but 5 years is more usual. And 5 years of PMR pain and stiffness gets very wearing - I know, I experienced it.

    • lyndsay250258
      lyndsay250258 EileenH

      Posted

      Hi Eileen, yes I can see that everything you say makes sense. I suppose that, had I had a test that proved without a doubt that I had it, I would probably had overcome my fear of pred as it is the only drug to improve the problem. It's the amount of doubt or should I say lack of confirmation from my Dr that I've felt I could manage without pres.

      I'll be making an appointment with my Dr tomorrow to discuss my fears again, but as you say, trying it for a week or two to see if symptoms improve would probably be a good idea.

      Thank you !

    • EileenH
      EileenH lyndsay250258

      Posted

      Remember, even though pred has a listed 82+ side effects, no-one gets them all and many get very few. Some can be managed well with lifestyle changes (for example, reducing carbs seems to help a lot with the weight gain and also helps avoid the risk of diabetes and raised cholesterol) and many are a bit cosmetic. Mad hair, annoying though it may be to someone who had long wavy smooth locks as I did, or hamster cheeks are a minor price to pay for relatively little pain and being able to move fairly freely.

      Going about reducing in a sensible way also helps - the lower the dose, the fewer the side effects in general - and rushing at it will just lead to flares and returning to a high dose to start all over again. Patience and a slow reduction - slow in the sense of small steps and checking every new dose is still enough over a few weeks - is the way to go. And we on this forum can sing an opera about THAT!

    • lyndsay250258
      lyndsay250258 EileenH

      Posted

      Thanks Eileen, I've made an appt at the Drs for today and will keep your good advice as reference

      many thanks :-)

  • carleen79880
    carleen79880 lyndsay250258

    Posted

    Hi

    I have been just diagnosed a few weeks ago and WITHOUT the steroids I know that I would still be in bed with horrific pain if not for taking them. The side effects do stink, as I have many. I have decided to continue to get support from this group and just do what I am supposed to. I have fears as well but I can't predict my future with PMR but I do know that my quality of life is somewhat more manageable than it was. I will take a step at a time and just continue to believe that this will be a chapter in my life that won't repeat itself andnif n it does I will roll with it.

  • carleen79880
    carleen79880 lyndsay250258

    Posted

    Sorry I wanted to say to you that I'm another ear for you and with support we can all get through this together. Good luck and I agree with Eileen...just please give it a try smile

    Xoxo

    • lyndsay250258
      lyndsay250258 carleen79880

      Posted

      Thank you Carleen. I only signed up to this site last night and have received such a lot of good advice as well as realising that we're all going through the same thing. Somehow, knowing I'm no longer alone has made it easier to put my fear of Pred aside xoxo
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.