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

Could this be just a blip?

Posted , 8 users are following.

AsTimeGoesBy
AsTimeGoesBy

New to this but glad to have found the forum.

I'm 79 (m) and about 5 weeks ago started what appear to be classic symptoms: painful shoulders, weak arms (couldn't pull the duvet over when in bed), pains in thighs when driving for more than 30 minutes. A GP in France ordered a blood test (results a bit odd but nothing drastic); he put me on a general antibiotic with high Ibuprofen. There was no improvement.

Moved to Germany (pains now much worse) 3 weeks ago and saw a GP, who prescribed  cortisone treatment, starting at 60mg for 5 days but now decreased to 10mg (half tab) and I'm on the final week. I must say that the cortisone kicked in with a couple of days and I'm feeling 100%. Another 3 days of 10mg to go, but what then?

The optimist in me is saying, "This whole thing was just a blip and you're going to be fine." My present thinking is - see what happens when I stop: will it have been a blip? Is this possible? As the song goes: "I'm a dreamer, aren't we all?"

Thanks in advance for comments.

ATGB

 

0 likes, 25 replies

25 Replies

Prev
  • AsTimeGoesBy
    AsTimeGoesBy

    Posted

    Well, here we are on round two.

    Yesterday I went to the German GP again and am psd to report that he has endorsed a suck-it-and-see approach; he prescribed enough 20mg pred tablets and another (Pantoprazol TAD 20mg to protect the stomach) to get me back to France and beyond. I was feeling terrible yesterday and took a 20mg around 6pm. I had a sweaty night (changed the pyjama top three times) but this morning am as right as rain. So how long should I continue with the 20mg before dropping to 10mg? On his previous regime I ended up at 10mg and was feeling fine: it was only when I stopped completely that bad things started to happen again. I presume that I should move from 20mg to 15mg but wonder when I should do this, always assuming that I continue to feel OK on 20mg.

    Many thanks in advance for comments and advice,

    ATBG

    • AsTimeGoesBy
      AsTimeGoesBy

      Posted

      Above I said: "So how long should I continue with the 20mg before dropping to 10mg?" But I meant "before dropping to 15mg". (What a pity there's no edit option on this website.)

      ATGB

    • EileenH
      EileenH AsTimeGoesBy

      Posted

      Go to a chemist and buy a pill cutter - you cannot, must not drop by 10mg at a go when you have PMR although you should be able to manage 5mg if you are lucky. Stay at 20mg for a week and then try 15mg. If you are good at 15mg stay there for at least 2 weeks and then get smaller pills to be able to reduce to 12.5mg. It is difficult to say - but you might be OK on 10mg but you must not end up in a yoyo pattern or it will get more difficult each time.
  • daniel08939
    daniel08939 AsTimeGoesBy

    Posted

    The main criteria is "How do you feel. I have experienced on three separate occasions, rapid drops to 10 mg without symptoms returning. For me, the reuction from 10 to zero has to be slow. I did 1 mg a month down to 4 mg.

    At 4 mg I had to stay there for several months and then drop 1/2 mg . When I got to 2 mg I stayed there longer than a month. If you drop too fast your symptoms will return.

    • AsTimeGoesBy
      AsTimeGoesBy daniel08939

      Posted

      Thanks for your comment.

      This morning my shoulders were a bit stiff but perhaps this had to do with (what might now be) too much red wine at dinner. I'll watch this in future.

      Now no pains at all.

      Guess I'll continue with 20mg for a week and then drop to 15mg.

      ATGB

  • AsTimeGoesBy
    AsTimeGoesBy

    Posted

    Hope this is not out of synch ... when I went back to France from Germany I saw a rheumatologist and he started me on 20mg prednisolone, dropping by 1mg per month. I'm down to 6mg and will be starting 5mg on 1 March. I'm back in the UK and am receiving the steroids via my GP here. The PMR is under control ... but ... but ... but ... I've had 'flu for some 10 days or so. I think it's gone away and ... back it comes. My temperature is today around 37.8. Do steroids impact on the immune system? Is that why I can't shake it off? I'm reluctant to upset the prednisolone but do wish I could get rid of the this 'flu. To be fair, I have been a bit silly in that I think that I'm better and get up ... even go to the shops. Would appreciate comments about the immune system, the 'flu and the steroids.

    ATGB

    • EileenH
      EileenH AsTimeGoesBy

      Posted

      It is said that steroids impact the immune system - but that really is at higher doses and the 6mg you are now on is the same sort of amount of corticosteroid your body makes in the form of cortisol anyway.

      But if this was flu, real flu, to expect to be recovered in 10 days is rather optimistic! That's the sort of time an ordinary cold takes. I have never caught more infections or taken longer to recover from them while on pred - but the little doozy I've had this year is still here after 3 weeks! I caught it from a visiting cousin -  who is very fit and not on pred and he was also flat out for over a  week, retreating to bed almost ever day! My husband also has it - not much different. Neighbours, all younger and fitter than us have also been flattened for 3 weeks. All of us have noted it seems to improve - and then come back for another bite.

      I think you need to be patient. And behave as if you are unwell. I know - it's boring and a pain. 

  • AsTimeGoesBy
    AsTimeGoesBy

    Posted

    Thanks for the reply ... I guessed I should stay put with the pred but glad to have confirmation. One mistake in my new post: the Fr rheumatogist started me on 10mg per day and I've been dropping 1mg per month. As I say, I drop to 5mg on 1 March.

    One other thing: the UK GP just followed the prescription of the French specialist. I'll go to see the latter again in a couple of months. In addition to the pred, I've got one that I take once a week. The name starts with 'R' and I must not lie down for 30 mins; it's taken on an empty stomach with a good long drink of water. Then there's another Omra somthing: it's a yellow capusle and I believe it's to stop reflux. In addition, the UK GP prescribed a huge dose of Vit D: 2x750mg per day. However, I can't handle these because they prevent me from sleeping. Is all this overkill? With regard to the Vit D, I was buying this over the counter - a much lower dose of something like 250mg and one tablet per day.

    Thanks in advance.

    ATGB

     

    • EileenH
      EileenH AsTimeGoesBy

      Posted

      Risendronate?? It will be a bisphosphonate to "protect" your bone density. Omeprazole is supposedly for stomach protection so the pred doesn't irritate your stomach, it reduces stomach acid production.The UK GP should have given you calcium and vit D - I can't see why they would stop you sleeping though. You do need a good source of calcium and your blood vit D level needs to be in the right range or the bisphosphonate won't work. I take the calcium and vit D - nothing else!

  • shannon76840
    shannon76840 AsTimeGoesBy

    Posted

    Very interesting to follow this timeline.  I am to see my doc in 2 days and I am hoping that he will understand my need to continue until I return home from Ireland to Canada in the end of March.  I leave in 2.5 weeks and do not want to see if it gets worse.  I have had a remarkable improvement in 1 week and do not want a relapse while travelling.  I am hopeful he will see this approach.   I also had essentially normal markers.  Thank you for the confidence this gives me.

    Shannon

Back to top
Prev

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.