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feeling really anxious

Posted , 7 users are following.

grandmaDylan
grandmaDylan

I Had various bloods tests last week including esr as I have had raised inflamatory markers for at least 14 years. I have fibromyalgia and have increasingly bad pain and fatigue. At the moment I can barely lift my left arm, I have back and hip pain and very very painful knees which I put down to fibro and osteoarthritis. My gp who I have only seen once before as I am new to the practice was happy to try me on prednisone for a week to see what happens. If it doesn't have any effect he will start testing me for possible rhumatoid arthritis. I am feeling ridiculously anxious about starting the steroids though.on the one hand if it proves PMR I dread the thought of long term use but on the other hand I can't cope for much longer with the pain and fatigue. I just want someone to tell me that a week on prednisone won't cause me to become hugely fat and aggressive!

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  • constance.de
    constance.de grandmaDylan

    Posted

    Poor you!  Prednisolone is a detestable medicine.  It does a lot of harm, can cause kidney problems, liver problems, thinning skin, etc. etc. BUT without it we would all go crazy!!!  Believe me, though, if you take it just for one week it can't possibly harm you.  Not all people become fat (even after 4 years on pred I never put on more than 4 kgs!) and aggressive?  Who's aggressive?  Read the many posts on this forum.  There is always someone out there that will listen.

    Good luck.   Constance

  • marilyn78221
    marilyn78221 grandmaDylan

    Posted

    Hi Deborah

    if the steroids take away the pain I wouldn't worry about them I haven't heard that side effects happen in a week, it's long-term that can cause problems. I have been taking them for 3 years and I haven't put on weight and as far as I'm aware I haven't become

    aggressive - but maybe my friends are too polite to tell me! Doses of around 10mg made my skin go very thin mainly on my arms and I bruised very easily, again on my

    arms. When I got down to 5mg those side effects disappeared. I am now down to 3mg and hopeful to get off them altogether some time this year.

    i hope you get some relief from your pain. 

  • snapperblue
    snapperblue grandmaDylan

    Posted

    Since you asked, OK, I'll tell you:  "A week on prednisone won't cause you to become hugely fat and aggressive."  Much longer use won't necessarily do that either, especially at typical PMR doses.

    The pain from PMR is caused by inflammation and chronic inflammation is bad for you. We with PMR have to balance the "good" of prednisone (relief of pain, reduced inflammation) against the "bad" (reduction of bone strength, unless you are treated for this; side effects).

    If a week of 15 mg of prednisone eliminates your pain, you likely have PMR.  For some people (including me), it took a week on 20 mg. Then you will be informed enough to decide where the balance point is for you.  But don't be afraid of a week's trial.

     

  • EileenH
    EileenH grandmaDylan

    Posted

    One week won't do that! If a dose of 15mg works you will know that it isn't fibromyalgia but PMR. However - it may not relieve the fatigue. The fatigue and symptoms in PMR are due to an underlying autoimmune disorder. The pred will relieve the swelling and inflammation that cause the pain and stiffness but the autoimmune disorder is still there and the fatigue is from that.

    You have to look at this way: what is being a bit cuddlier compared to constant pain and disability? You will probably put on some weight - on the other hand, in the last two and a half years I have lost 38lbs in weight while still taking pred. I had put on weight with PMR and being unable to exercise - I wasn't on pred. When I eventually got put on pred I didn't at first put on weight, it jsut rearranged itself. Then I was switched to a different form of pred when I moved from the UK to Italy and then I put on weight - I had to increase the dose to 20mg as it didn't seem to work for me.

    My new GP was rheumatology trained and she suggested another form of pred - and since then I have lost weight slowly but steadily by cutting carbs drastically. I know others have lost weight using Weight Watchers and several have also found they didn't put weight on by doing the same as me and really cutting back on carbs.

    And although some people do become bad tempered and moody it is more likely at higher doses - with PMR you shouldn't ever be on more than 15-20mg and that only for a couple of months at the most. And believe me, in the 5 years I had PMR undiagnosed and untreated I was far more bad tempered and aggressive from the pain and PMR than I have ever been on pred!

    • linda17563
      linda17563 EileenH

      Posted

      I wonder Eileen, if you would mind telling me the other form of pred?  I am wondering if I am feeling so ill still...that it is the pred that is doing it. I was put back on 15mg Jan, (from 7mg) and still on it, till I get an appointment with my Rheumy again....as I have said in the past...because of also having fibro, I cannot tolerate medication, so maybe there is an alternative?  ps, I have gained half a stone since January, with the raised pred, all on face and tummy, it`s just not me in that mirror any more!!  maybe a bonus for some!
    • EileenH
      EileenH linda17563

      Posted

      Corticosteroids come in several "substances" so to speak - like you can have "crisps" of potato, veggies, apple, banana and so on. 

      In the UK you are usually on prednisolone, either ordinary white or enteric coated which take longer to work but are less hard on your stomach. There is another substance called methyl prednisolone, sold as Medrol, which is supposedly more effective - but of course that means for some people more side-effects too. That was what happened to me but here in Italy there is only Medrol so at first I had no choice. The version I am on here now is a form of prednisone (prednisone turns into prednisolone in the body) but in a special delayed release formulation as that is the only option. It isn't available on the NHS in the UK as it is not approved for PMR, just RA. If you pay for it yourself you can have it if you find a doctor who will give private prescriptions - but you are looking at up to about £75 per month depending on your dose (it comes in 1, 2 and 5mg versions, each costs the same and you have to combine them to get your dose so for example either 15mg or 8mg costs £75, 10mg £50, 5mg £25). 

      I don't know if prednisone is available in the UK, as I say, the version I have isn't easy to get. But far and away the best way is to be VERY strict about what you eat. It IS possible to lose weight on pred but it is more difficult and it really does help to reduce carbs a LOT. I know it is unfair - but pred makes your body need fewer calories than usual and any extra ones are laid down as fat in specific places. As my dear daughter says: "Life's a bitch. And then you die..." She is such a cheery bunny rolleyes

    • linda17563
      linda17563 EileenH

      Posted

      Mind you she`s right...but the weight wouldn`t bother me, if I felt well!....I did at first on 15mg, but now....the fluey feelings, blurred vision, dizziness, and achey feeling has gone on for a while now, and I`m wondering just how long for...I am practically housebound....which I `m finding difficult.  This is why I`m thinking....is it because I`ve been on 15 mg too long!  My trying to keep positive with a husband like some others have, that dosen`t under stand (when I don`t either!) is becoming very hard....neutral
    • EileenH
      EileenH linda17563

      Posted

      To be honest - I'd wonder if maybe you are hatching GCA because 15mg simply isn't enough to manage that. 

      Try calling your rheumy's secretary (if he's posh enough to have one but there must be one in the hospital rheumatology department somewhere) and ask if you can have an early appointment and explain why. Or get assertive with the GP and tell them you want to be referred as an emergency for proper investigations of what is causing this. It is the blurred vision that worries me most alongside the other things.

    • linda17563
      linda17563 EileenH

      Posted

      Thanks for that, it is the blurred vision that worries me.  When it got bad pre xmas, that is when I was sent to the emergency eye clinic, but he said I was ok, and to take 20mg one week then down to 15mg, and I`ve been on that to date...but some days it varies, but never goes....and feeling ill with it, is why I questioned, have I been on 15mg too long, and should I start to lower slowly in the meantime to see if things improve?  Like you have said in the past....it`s a pest!
    • EileenH
      EileenH linda17563

      Posted

      Did the eye clinic tell you to reduce further from the 15mg? Has ANYONE told you to try to reduce further? If it were just PMR you would be reducing by now to find the lowest dose that manages the symptoms. It needs and expert to decide which way the pred dose should go. I really think you need to see someone asap.
    • linda17563
      linda17563 EileenH

      Posted

      When I saw the doctor last week, she said I`ll write to get you an appointment with rhemy, but stay on 15mg in the meantime!  This is why I`m thinking, have I been on this highish dose too long?...I may ring the hospital to see if they have received anything, (fat chance) and explain, and say I want to be seen quickly...what can I loose?  Thanks again...
    • EileenH
      EileenH linda17563

      Posted

      It will be weeks and weeks if all she's doing is writing. Either she can call them herself or she can send you to hospital with a letter (well you used to be able to do that for an emergency, god knows these days!). She wouldn't write if she thought you'd had a stroke!
    • linda17563
      linda17563 EileenH

      Posted

      I`ve just rung the Rheumy`s secretary, answerphone, so waiting for her to ring me back....I won`t let it rest tll I speak to someone...not going to wait for snailmail!!...I`m on a mission now to get it sortedexclaim
    • linda17563
      linda17563 EileenH

      Posted

      Rheumatology sec just rung me back, (I`m impressed)  she is ringing my surgery to fast-track the letter, and also speaking to my Rheumy about symptoms...so watch this space.  I won`t let it go now...I.want it sorted.  Thanks again...
    • linda17563
      linda17563 EileenH

      Posted

      Sorry, in my confused state....have replied to myself, which was meant for you...rolleyes
    • EileenH
      EileenH linda17563

      Posted

      I get all notifications!

      Result! It is ALWAYS worth trying if you are already a patient of a consultant. They can only say no. 

    • constance.de
      constance.de EileenH

      Posted

      Poor daughter!!  Is that the one who has an asthmatic child?  To think like that at her age is really sad, or was she just having a bad day?
    • EileenH
      EileenH constance.de

      Posted

      It was a long time ago - she was probably a teenager at the time and having what she thought was a bad day rolleyes

      One of the sayings in our family has always been "He that expecteth nothing shall not be disappointed" - but we really are not a particularly pessimistic lot. We face most things with a hefty dose of realism and given our occupations it is probably a good attitude to have wink 

    • constance.de
      constance.de EileenH

      Posted

      One of ours was "if you can't change it forget it".  Mind you that was before PMR!!!
    • linda17563
      linda17563 EileenH

      Posted

      Just an update on ringing Rheumy sec, to ask about a quicker appointment... secretary just rung to say she spoke to Rheumy about my symptoms/feeling ill/drained, blurred vision etc....and has said, Rheumy thinks it`s PROBABLY the amount of steroid I`m on, (15mg 3months) and referred me back to gp while I`m, waiting, for normal appointment...thought it was too good to be true......getting something moving!errrrrrrrrrrrrrr.
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