Any suggestions welcomed

Ok here goes, not having a great time of it lately. Retired on ll health end of March and had a couple of months of feeling quite good. It was if the stress of work no longer being there just made me feel so much better. It was quite stressful getting to the retirement point! Anyway I was on 15mg of pred at this point, had been up and down a few times! Started a fairly slow reduction, 1mg every 6 weeks and when I got to 11mg felt really bad again. Stuck it out for a few days before contacting rheumy who advised going back to 15mg for a few days and then return to 12mg. Did that but still feel rough, painful shoulders, hips knees and getting fatigued quite quickly. My muscles ache a lot, after a walk around one of the local NT gardens a couple of days ago my legs feel like I've run 10k. Worse in the mornings and eases as the day goes on. Very frustrating to have been in such a good place for a while and now feeling like crap. Just not sure what to do now, seeing the rheumy again on the 6th September. Oh and all the while I've still been taking 10mg of leflunomide a day plus alondronic acid once a week and adcal d3 twice a day.

17 Replies

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  • Hi Griggser, I have looked at your previous posts and can see what a horrible journey you have had so far. I also notice that you have tried all the DMARDS on offer, some more than once? Have they made any difference? It doesn't seem as if they have. Is you Rheumy intent on you taking one or other of them willy nilly? I have tried 2 of them with no effect and have been told that if 2 haven't worked, then the other one is unlikely to work either ( although I might try it as I can't get below 9 without a flare after nearly 4 years on Pred.)

    The same applies to Alendronic Acid- Do you really need it? I ask because all these drugs have side effects which may blur the picture somewhat.

    Nevertheless it seems to me that you have been having a flare and may not have gone up to a high enough dose to knock it on the head? I have had countless flares and they seem to get worse each time. During the last one, I felt like a pure novice, confused about how high the dose should be and for how long. I went to see my Rheumy after 6 weeks of it and he gave me an injection of ? Depo Medrone ( i.e. steroids) which he said should do the trick and it did in 2 weeks. He has also given me 2 more vials ( is that the right word?) of it to use at my GP practice if I have another flare so that I can have the injection quickly and don't have to adjust my oral dose. This has been very reassuring for me as I seem to flare at the drop of a hat!

  • Thanks Suzy for you're reply. I have tried azathriprine, methotrexate, mycophenalte and currently the leflunomide and in my mind none of them work but some made me quite ill. The rheumy does seem intent on keeping me on one or other of the DMARD's. I shall be questioning this on the 6th September. I have mentioned to him several times about not wanting to take alondronic acid but he says it's fine for up to 5 years! I'm not so sure and will bring it up again.

    I don't think I'm taking a high enough dose of pred but am reluctant to go higher again. It's such an internal, if not infernal, battle to know you need more steroids to feel better but want desperately to get off them altogether. However it does seem stupid taking steroids at a lower dose than give relief! Just concerned that I will develop other side issues if I'm on steroids for longer.

  • As you rightly say, there's no point being on Pred at a dose that is not controlling the symptoms. That way you're getting the worse of both worlds - no relief and possibility of side effects!

    Maybe if you'd stayed at 15mg for a little longer on your flare the outcome would have been different, guess it wasn't long enough to get a grip.

    I think the problem may be for some people is that once they've had a couple of flares it makes it much more difficult to reduce as easily as it is for those who manage to get through without any flares. That may be an obvious statement, but it must affect your body if there's a constant up and down of doses. Neither does it do your own morale much good either!

    Fortunately I've never had to take DMARDs so can't help on that, but think you do need to get things sorted with your Rheumy on the 6th - good luck.

  • Thanks for reply, I think you are right that I should have stayed on 15mg (or even more) for longer. I need to get back to a better place but will wait until the 6th Sept.

  • Suzy and DL have said most of it - I want to add that one fact that never gets mentioned is the bioavailability of pred. Depending on the person only 50-90% of the dose is absorbed. Obviously if you absorb 90% you will get a better effect for the same starting dose than someone who absorbs only 50%. Your 15mg dose may be the same as my 7.5mg - at which I usually do pretty well at and most good doctors don't worry about.

    Another factor that was mentioned at the rheumatology conference I attended in May was that some rheumies are realising that PMR may be a heterogeneous disorder with various manifestations - and that is why one management approach doesn't fit all. I've said for years that top US experts claimed years ago that 25% of patients need pred for far longer than the rest. And some of us need more pred than others - it took me over 4 years of pred (9 years of PMR without any remission) to get below 10mg. I then had a couple of years at 4/5mg - then a flare out of the blue and back to 15mg. I've just got back to 10mg - but anything less immediately leads to the aches and pains that are my sign of a flare.

    Where are you? Is a referral to one of the top research bunnies an option?

  • Thanks PMRpro, all good stuff as usual. I'm in Cornwall just outside of Truro. I'm actually quite happy with my rheumy as he does listen although perhaps not enough about my concerns about alendronic acid and leflunimide not being on my list of desirables.

  • Hi Griggser, did you have a Dexascan before taking Alendronic Acid? My GP is mad keen I should take it even though I had a very good Dexascan result. Just when I think I have won, he brings it up again when I next talk to him.

  • Hi Piglette,

    No never had a decals an even though I asked for one! Rheumy seems convinced I should keep taking it.

  • I must admit I don't think I would take Alendronic Acid unless I had some proof I needed it. If I do not need it and take it now, I will not be able to take it when I do need it. I think the medics must have been on some sales drive for Alendronic Acid!

  • They were told by the original marketing drive when it was launched that it was totally safe (been in use for 50 years - yes it sort of had, the substance was different and only used in one disorder for a relatively small number of patients, using it in millions is a bit different) and would remove the risk of hip fractures in elderly ladies who fell. What they learn at a certain stage of training sticks - and they went on to teach junior doctors the same at the same sort of stage. And it won't unstick...

  • I can't find my reference to NICE saying no benefit after 3 years on bisphonates but this is the most up to date link: cks.nice.org.uk/osteoporosi...

  • Paddyfields, can you give more information about this item - exact title and an author perhaps? This is the message I get across the Pond: "Unfortunately this site is only available from Great Britain.

    We apologise for any inconvenience".

  • The link is to the NICE site - for consumption by the UK only. It isn't an article and there is no author as such.

  • Thanks. See, couldn't even get that info from the link!

  • What is NICE? There is a terrible organization by that name in C.S.Lewis's futuristic horror scifi book "That Hideous Strength".

  • National Institute for Health and Care Excellence. I think it used to be National Institute for Health and Clinical Excellence but the name was changed to confuse the innocent...

    nhs.uk/NHSEngland/thenhs/he...

    I think you will be able to see that link.

    The acronym rather belies their usual actions - which often involves telling people that, no, they can't have that very expensive drug they believe will let them live for ever/cure their disease because the drug company said so because actually the drug company was exaggerating.

  • ☺😁😂

    In the Lewis book it's National Institute for Co-ordinated Experiments. Reread it a year or so ago and was horrified because some of what he envisaged as a local evil has been coming to pass as global phenomena. 😭

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