Been on PMR medication for 15 months

Posted , 5 users are following.

I have heard somewhere that there is an alternative way to deal with PMR instead of steroids and all the back-up drugs.  I've been on them for 15 months and longing to stop taking them.  I believe the treatment is in the form of an injection every month or so.  I am now on 4.5 mgs prednisolone.

Also I am taking Warfarin, Bisoprolol, Digoxin, Atorvastatin for Atrial Fibrillation and have been for many years, and I wonder whether Warfarin and Alendronic acid aren't such a good mix? . Anyone out there who has knowledge of the alternative treatment(s) I'd be so grateful to hear from.  

Thank you

 

2 likes, 4 replies

4 Replies

  • Posted

    Hi Mary, welcome to this forum.  I am a newbie and I don't have any medical background.  Someone will be along soon with lots of information and experience to answer your question.  Good luck on your journey.  Pat
  • Posted

    i too would like to hear about a alternative, please let us know if you know of any.
  • Posted

    I think you may be confusing this with the use of corticosteroid injections rather than oral prednisolone. It is merely a different way of getting the same substance into the body so the potential side effects are no different.

    At present there is no alternative to corticosteroids to manage PMR. There are trials ongoing with other medications but it is likely to be a few years before the results are known. The only even half-alternatives are to use another medication which may (or may not) reduce the amount of pred you need to take. Their use is disputed and all come with their own side effects.

    The only reason to be careful with warfarin and AA is to be sure there is no gastric/oesophageal irritation by taking the AA very carefully in the way you are told to - on an empty stomach with large glass of tap water, 30 to 45 min remaining upright and before food or other drinks.

    Believe me - we'd all prefer not to have to take pred but a dose of 4.5mg is very low and associated with few side effects. I'm on 4mg, if I have to stay here for the rest of my life to avoid a return of PMR, that's fine.

  • Posted

    Unfortunately, the only real  "alternative" to steroids when suffering from PMR is to put up with the pain!  It is possible to have injections but it can be hit and miss as to how long the effects of each injection lasts.  For some it can be just a few weeks, and if the pain gets severe before the next injection is due then it's a case of putting up with it until you are able to get an earlier appointment.  The injections are mainly used as a top-up to oral steroids at times of increasing inflammation.  The most important thing to bear in mind is that the inflammation of PMR needs to be brought under control, otherwise there is a real risk of other nasties coming on the scene, including GCA.

    Really, being on 4.5 after just 15 months sounds as though you are doing really well with the reductions.  It is a dose that many people would be happy to reach, with side effects unlikely at such a low dose.

    Have you had a DEXA bone density scan that shows thinning of your bones?  If there is no thinning at the level of steroid you are taking, then you are unlikely to need Alendronic Acid now.  I never took it throughout 6+ years on steroids and my bones are fine.  I didn't even have calcium + Vit D because both my rheumy and my GP thought the other had prescribed it.   

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