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

Thought I was successfully down to 7mg.

Posted , 15 users are following.

jenny22117
jenny22117

Hi everyone. I really thought I had cracked it and successfully got down to 7mg. I have been on it now for five weeks and was just about to drop to 61/2 on the dead slow and stop method, when all of a sudden, I have developed really bad pain in my Elbows. When I first got PMR it started in my Elbows. Does this mean that

I am having a flare and need to go up to eight again. 

I really hope not because the Pred is causing me to have Fractured Vertebra. I have had three Fractures in six Months.

 

0 likes, 37 replies

37 Replies

Next
  • carleen79880
    carleen79880 jenny22117

    Posted

    Hi...so sorry your feeling like this.I was just diagnosed so I can't give you any feedback however I wanted to let.you know I am here for support and I hope you don't have a relapse...this whole PMR is very scary....Just started on 15 mg on Saturday and Dr.said I should feel 100% within 48 hrs and that's not the case...praying for both of us...
    • jenny22117
      jenny22117 carleen79880

      Posted

      Hi Carleen, try not to worry. Most People say the relief is instantaneous when they start on Pred. With me it wasn't the case, it took about four days to work, but then it worked well.

      Take care, Jenny x

    • ptolemy
      ptolemy carleen79880

      Posted

      Hi Carleen, I am sure it will give you great relief in the next day or two. Some people need to up it a bit to 20mg to get it to work initially. If you don't get the relief your doctor needs to check that you really do have PMR and it is not something else.
    • EileenH
      EileenH carleen79880

      Posted

      Er - no, not 100%. That is totally unreasonable and it is beyond me why doctors ever suggest it. They've obviously a) never had it themselves, b) been on pred and c) asked their patients (or if they have, they were rude enough not to believe them).

      You should be experiencing about 70% improvement overall within a week or so. There may then be some more improvement over the following few months, it took 6 months for some of my bursitis to fade away. But most people never achieve total freedom from pain even at high doses and it is very unusual for the fatigue that is part of the underlying autoimmune disorder to improve dramatically. Doctors still persist in a belief that you get a "pred boost" - I've never noticed one at any dose! I'll bet too that you have been rushing around trying to catch up on all the things you haven't been able to do for weeks? However well you may feel, if you do that your muscles will remind you that pred only deals with the symptoms and not the illness. They remain intolerant of acute exercise and you have to do your bit to manage that aspect of PMR. You must learn to pace yourself and rest appropriately - and that is something that doesn't change for a very long time, certainly months, sometimes years.

      When many people say they had instantaneous relief you have to remember that they are comparing the pred state with non-pred-state just a day before. I could barely move in the morning when I took my first dose of 15mg pred at 10.15am. I then went to the computer and worked, I took my lunch up with me - the computer was on the same level as the bathroom, had to have my priorities right! About 4pm I got up and walked downstairs normally, got a cup of tea and walked back up. Then it hit me - just the day before I'd have stomped downstairs like a toddler and crawled back up, laying the mug on a step higher up than it was each time. But I still had some pain and that went on for some time. I was still stiff in the morning until the pred started working after about 2 hours. And the fatigue was still there.

      Pred gives you a relatively decent quality of life - but it isn't a cure and it isn't a perfect result.

    • molly1957
      molly1957 EileenH

      Posted

      I agree Eileen pred does give you a relatively decent quality of life and it's certainly not perfect I'm learning to pace myself, I'm not completely pain free and the fatigue is awful , I am just recovering from a nasty cough which seemed to linger for ever and really knocked me then a few days after dropping to 8mg my shoulders and hips started to really hurt causing me to wake in the night as it was painful to move, I upped to 12 mg for a few days then down to 10 I'm now back to 8mg from today so fingers crossed, I really appreciate the feedback I get on here as when I see the rheumatologist it's just very very basic information and he has never mentioned fatigue once . 
    • EileenH
      EileenH molly1957

      Posted

      Careful going back to 8 - if the symptoms returned at 8 before then that may just be the sign you have arrived where you need to stick for a while. If 9mg is good you could try 8.5mg - even 1/2mg is enough to tip the result! It isn't a race - push your luck and you might end up with a major flare that won't come under control again. It really isn't worth it.
    • molly1957
      molly1957 EileenH

      Posted

      Thanks Eileen do you just half the 1mg tablets they are quite small but I will try that
    • EileenH
      EileenH molly1957

      Posted

      You can get a pill cutter from a chemist/pharmacy. With a bit of practice it isn't too bad. Or you could take one day 9, one day 8mg and see how you get on. But in the great scheme of things being on 9mg rather than 8mg isn't the end of the world. You will get lower eventually - just not yet.
  • nervebyte
    nervebyte jenny22117

    Posted

    Jenny, my experience with pmr is that for many of us it's up and down and regulating our pred intake accordingly. I admire those who have things under control. Are you taking bone-building supplements re your vertebrae? Pred creates bone-loss and poses issues as a result. As recommended by my Rheumy, I take 70 mg of Alendronate weekly and 1500 mg of calcium + 1000 mg of D daily. Take care!

     

    • jenny22117
      jenny22117 nervebyte

      Posted

      Hi Nervebyte. I am in the process of changing my Doctor. He put ne on to Alendronic Acid one a week when I was first diagnosed. I couldn't tolerate it, so I rang him and told him I was taking Calcium Supplements from Tesco's. He said that would do, but when I got the Fractures, which he failed to diagnose, he pretended to be shocked that I wasn't

      on something for my Bones. Even then he didn't prescribe anything and told me to carry on with the over the counter ones. I rang the Osteoporosis Society and she said I needed to be referred to a Specialist. So when I have changed Doctors I will ask for a referral.

      Take care, Jenny x

    • EileenH
      EileenH jenny22117

      Posted

      Apart from anything else he should have given you a script for the supplements! But the first thing he should have done was send you for a dexascan - it really isn't rocket science! Unless you do that you cannot know if it was pred or there anyway - it amazes me how many GPs believe they can see through skin and bone...
    • ptolemy
      ptolemy jenny22117

      Posted

      Jenny, you should take vit D and calcium supplement, not just calcium. As Eileen says you should have had a Dexascan initially to check your bone density. A vit D blood test would also have been a good idea. 
    • jenny22117
      jenny22117 EileenH

      Posted

      I second that EieenH. My GP has been unbelievably bad about all of this. I can't go into detail here, as it is an extremely long story, but once I have changed GP's I am seriously thinking about making a complaint.

       

  • Anhaga
    Anhaga jenny22117

    Posted

    Jenny, think carefully about what you have been doing. Might you have done something that caused your elbows to hurt?  If you've been feeling better it is so easy to overdo things, because you think you are fine.  Rather than going right back up to 8 I wonder if you might be better just holding back on the reduction, and treating yourself very kindly for a few days, doing only the things that you have found make you feel better.  There are some anti-inflammatory foods that people try.  I haven't tried it myself but some people swear by turmeric (curcumin) - just make sure you have a little black pepper with it to increase its bioavailability, or that piperine is included in a supplement.  I've had some success with a simple tea made with grated gingerroot, as well as cutting back severely on foods like refined carbohydrates.  Anything you can do that may help reduce the inflammation should go some way towards reducing the amount of pred you need.  Most of all, try to avoid stress.  I'm getting pretty good at turning off the news when I feel particularly vulnerable, for example.  It isn't "denial", it's self-preservation.  It even seems a little funny now when my husband starts to tell me something new to worry about and I feel a wave of stress coming towards me and I have to turn him off!
    • jenny22117
      jenny22117 Anhaga

      Posted

      Thank you Anhaga. I haven't done anything I shouldn't really because the Vertebra are still very painful. I have been feeling very depressed recently though, so that could count as stress, I suppose. I am not one to get down usually, but what with the PMR, Fractured Vertebra, and also being diagnosed last week with Lymphodeama I suppose it is normal to feel a bit low.

      Still, I will just have to get on with it and spoil myself for a few days, how awful, haha.  I will take your advice and not try to reduce any further, as I really don't want to have to go back up again.

      Thank you, Jenny x

    • Anhaga
      Anhaga jenny22117

      Posted

      I would suggest a slight increase, but I know you don't want to do that, so just suggesting a possible strategy to help you avoid that.  I think the occasional depressive episode is quite typical of this illness.  How could it not be?  It would almost be stranger not to feel depressed from time to time.  I do find that having a chance to talk to other people can be helpful, although I think most of us hesitate to "bore" other people with our ailments.  Hence the value of these forums.  Here we are among friends who understand.  That is such a wonderful gift, especially for those of us who might otherwise feel very isolated. <3>
    • ptolemy
      ptolemy jenny22117

      Posted

      Hi Jenny, a side effect of steroids can be depression. If it gets very bad you should seek medical help. As you say don't reduce until you feel you are absolutely happy to do so.
    • jenny22117
      jenny22117 ptolemy

      Posted

      Thank you ptolemy. I think it helps just to talk to someone sometimes.

      Jenny

    • jenny22117
      jenny22117 Anhaga

      Posted

      Hi Anhaga. I think you are right, you feel very isolated with this illness, people don't understand it. You don't like to talk about it because you can see their eyes glaze over and then, insult to injury, they say "well, you look well" 

      Jenny x

    • Anhaga
      Anhaga jenny22117

      Posted

      If you haven't already read it, google "spoons theory" - a wonderful way to explain to people how your life is now, even though you look well.  It's also helpful for us as we even have to justify "laziness" to ourselves!
    • EileenH
      EileenH jenny22117

      Posted

      To which I reply - "it's the drugs and I don't feel it!"
    • Anhaga
      Anhaga EileenH

      Posted

      Yes, I usually say "it's the drugs" too.  But I can tell they don't believe me.
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.