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Am I having a flare?

Posted , 7 users are following.

carol16456
carol16456

i got down to 10.5 mg pred about 3weeks ago and had a blood test on the same day .went on holiday and had a little shoulder pain but it went away after 3 /4 days but did feel absolutely shattered over holiday .Did do a 4mile walk to start with , after that short walks because so tiered .So probably my fault ,however went to see doctor for blood test results one week later .The inflammation level had levelled out the previous times at 33 but the new doctor (her first day ever ) was surprised that my previous result to this one had dropped to 24 but this particular result had gone back up to 37 .Because severe neck shoulder pain had returned plus a full body flip straight into the bushes (Unfortunately alone ) which has either damaged muscles or agrivated artheritus I have put my self upto 11mg pred . Am I being defeatist or wise .I am taking a neighbour away Monday for 3 days and have chosen to drive as I am more comfortable driving than being thrown around as a passenger .Any helpful and encouraging comments would be gratefully received as must admit confidence is wavering as do not have my husband there for the little support he does give when he feels in a charitable mood 

1 like, 14 replies

14 Replies

  • tina-uk_cwall
    tina-uk_cwall carol16456

    Posted

    Hello carol, maybe, maybe not a flare? For me I think that given you have been through so much and you are going away for a few days I think that you've been wise upping your dose, regardless of whether you are experiencing a flare. Also there is the query re your inflamation levels, so it's wise.

    Eileen's go slow and almost stop regime could be your way forward even if you have not reached the 10mgs level yet, by that I mean the regime is a sort of way of conning your body into no knowingly accepting a lower dose. 

    I use this regime (only reducing by .5 and not 1 mg at a time.

    hopefully in the morning some more experienced members will offer better advise, as I have no medical training. All the best, christina 

  • Mrs.Mac-Canada
    Mrs.Mac-Canada carol16456

    Posted

    Hi Carol,

    If that was me I'd be down and out for the count😔.  It really sounds like you're doing way to much and likely asking for trouble.  If I was you, and you can't get out of driving Monday, I'd be doing very little until then and hope your PMR is patient with you.

    Best wishes coming your way,

    Diana🌸

  • Oregonjohn-UK
    Oregonjohn-UK carol16456

    Posted

    Methinks you may have pushed it!!  Time to rest and take it a wee bit slower - hard I know!
  • EileenH
    EileenH carol16456

    Posted

    I'll lay odds your shoulder pain on holiday was from messing about with luggage and the fatigue was a response to the effort of travelling - even a short journey really takes it out of some people. PMR makes your body intolerant of exercise, it neither flags up you are doing too much at the time nor does it repair itself and recover as fast as it should do normally so your 4 mile walk probably wasn't a good idea - and then you continued to walk, albeit less, instead of resting.

    If I understand the chronology of your story you were probably already hatching a "flare" at your previous dose, allowing inflammation to reassert itself because the dose wasn't enough to manage the symptoms. I think you possibly need a few days of more than 11mg to get it under control quickly before you go away again. I sympathise with your prefering to drive - it wasn't the being thrown around more as a passenger but the driver's seat has a lumbar support and the passenger one doesn't and that is what makes the difference for me. However - do have breaks while you are travelling. Are you going far? And don't plan anything at all energetic, especially on the first day.

    I'd also suggest - what a surprise - can you find a Bowen therapist locally? I think that might help the damage you have probably done to back muscles and their stability - not damage in the sense of injury but they are protesting at what you've been through and that gymnastics has just topped it all off! 

    It is surprising what even a minor fall can do to PMR and confidence - I fell off a bike after going out to see how I got on with cycling to introduce as an alternative exercise. The ride had been fine and I was looking forward to more of the same - then I fell and scraped my knee - the result was out of all proportion to the damage done.

    • carol16456
      carol16456 EileenH

      Posted

      Thankyou Eillen .Would you go up higher than I have ? Say to 12mg . I go on Monday and I guess the drive is about 100 to 150 miles . But we stop of half way for 3 to 4 hours at a rare breed farm .in the Cotswolds . Hope to wonder round some of it but will have book to read in car . My friend is aware of the problems I have .when I start to reduce do I do it as slowly as normal for me a or can it be done a little quicker .My doctor would like me to be down to 8 or 8.5 by midsummer .Have found a Bowen therapist near .However we are away most of June .So thought it would be better to start with them in July .In the meantime my daughter has been on a cours for head neck shoulder massage and am arranging for her to deal with me for the next couple weeks . She is very good at finding a few trigger point in my shoulder muscles . The Bowen therapy looks very interesting .

      I

    • EileenH
      EileenH carol16456

      Posted

      Usually if you have been stable at a dose and crack down on a flare quickly and firmly for up to a week you can then drop back to the last successful dose quite quickly once the symptoms have settled - unless of course it is an increase in the activity of the underlying autoimmune disorder in which case you may need a bit more. It is a case of trying I'm afraid but if it were me I'd drop in two steps over a week or so to reduce the impact on the body.

      In this sort of situation a bit more is preferable to a bit less - you have a commitment and a bit more will make doing it easier. It doesn't mean you will be there for ever. I also find that dealing with the "add-ons" separately with Bowen or physio - or a useful daughter - often makes the oral dose you need for comfort lower. I do know the feeling, believe me!

      If you can get even one session with Bowen person before you go away you may well find that you enjoy June more than if you wait for July - do think about it. 

    • carol16456
      carol16456 EileenH

      Posted

      Has anyone taken tramadol , saw doctor this afternoon . She gave me some to try for pain .Howrver at least with co codamal it eased it a little . It is now really bad in neck and head , shan't be taking it again . Have taken the co codamal now but am really desperate . She wasn't sure if it was a flare or my arthritis or worsening of my usual face pain , advice anyone please
    • EileenH
      EileenH carol16456

      Posted

      Rats - I have just answered you to tell you there is a medical alert out as of May 6th for recall of Tramadol 50mg capsules from RelonChem in Kent but it has been grabbed for moderation.

      Google it

    • EileenH
      EileenH

      Posted

      I also asked if you are sure it is physical in origin - could it be GCA developing and causing the head and neck pain?
    • carol16456
      carol16456 EileenH

      Posted

      Just spent the last two days in lister hospital .Head neck got so bad ended up ringing 111 (local advice doctor )given appointment to go to St Albans hospital then sent straight to lister A and E .Had CTI scan all was ok .Realise how some doctors know

      a little about everything to get by .The first doctor I saw did not understand the importance of not taking the preds for PMR .Because of the intensity of pain I had had ? I had been very sick on the prolonged journey , so they wouldn't let me take them after I got to hospital .Eventually When I was allowed to take the pred by a nurse many hours later ,of course I had no protection and had been given some codene in a drip for pain the result was being extremely ill bringing up blood ,so if anyone needs stomach protection don't forget to take it .

      Anyhow my ESR was 18 and BM 5.9and CTI scan good . They diagnosed trygeminal neuralgia with multi migraines .What I would like to understand is why was my first ESR level 60 which went down to 33after about 5 months suddenly dropped to 24. Then next time went back up to 31 and now it is 12 .

      Was looking at contra indication between the one you let me know about begging with (t) and found it is an opeoid so can interact with codene and amtriptileen so a message to every one bother to read the small print .Early night for me in my own bed again thankfully .

    • EileenH
      EileenH carol16456

      Posted

      I'm not sure about the accuracy of the ESR testing - usually it is a case of plus or minus a bit and you run controls alongside the other tests which you know the figure for to check you are getting an answer in the right range. I'm not sure how you can do that with ESR since it is a physical property rather than a biochemical one but I suspect you have a result of 24 that could be up to 27 or so and one of 32 that could be down to 29 (say) - hardly any different if you see what I'm trying to say. The 12 is very definitely "in normal range" - but the rise can be due to all sorts of things including infections as ESR is a very non-specific test and rises in response to any infection, not just PMR inflammation, it is a guide at best.
    • carol16456
      carol16456 EileenH

      Posted

      After the stress of the weekend is it likely to bring on a flare . My muscles are so sore to touch and am at 10.5 mg pred still . Blood pressure has been raised the last month but nothing untoward .Just wonder if I should put put my dosage up a bit . Am so worried about the migraine coming back that I know I am very tense
    • EileenH
      EileenH carol16456

      Posted

      Yes - and the space with no pred won't have helped. If it were me I'd take a bit more for a few days to hit it and then you can go back to your usual dose.

      Sorry its been so long - I couldn't get onto the site!!!

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