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Switched from prednisone to Methylprednisolone

Posted , 6 users are following.

marie_loui19398
marie_loui19398

Hi, I am new here I live in Florida,usa.. I have been diagnosed with PMR, only 3 months ago, since 10/1/14. It makes me feel better just to know there are other people out there with this dreaded condition. Even tho I am sorry we all have PMR!

  My Dr./ a Rhuemi, has switched me from 10mg of pred, to 8mg of Methylprednisone.  4mg twice a day.  It lets me sleep better, and has helped me more than the pred.  Has anyone ever taken this?

 Its my shoulders and upper arms that hurt the most.  He has given me shots in both shoulder joints, then I started this new med, about a month ok.  Its amost bareable now.

 I am a 56 year old woman, who tried to eat right, got a good amount of excersise, and then this PMR came out of nowhere. Here in america, it dosen't seem like mant people know of this, or have ever heard of it!  Your great uk site  seems to be one of the only I have seen.  I was told I am quite young to have this.....is this true?  also that northern european woman are very prone to this.  I am of english /irish/polish decent. 

  I was also told that that there was a big wave of PMR here at the end of 2013.  what does this mean?  Is it caused from some virus, in addition to being heriditary?

  thanks for all your help, Marie Louise

1 like, 30 replies

30 Replies

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  • old_nanna
    old_nanna marie_loui19398

    Posted

    WelcomeMarie louise , , yes this post is certainly eye opening , i couldnt believe there were sooo many people suffering with problem i usually delete all the mail that comes through but thought i would answer this one , this drug your on seems a bit illegal but if where you are your able to get some relief thats good , what about side affects ?nowim not on any medication now but i have been thinking my polym. might have returned , i will know when i see the bloodtests next week , i have been off prednisone now since august 2014 , and i was diagonised with the pmr august 2012 , ,,, now i believe our problem was ,the imune system turned around and invaded its self lol work that one out , i too eat well and certainly think that is the reason i got over it so quick , at first they said i would be on prednisone for the rest of my life , anyway i fought back lol ,im 86 this year , live in qld,australia , i have had 2 husbands , divorced them both , since then they have passed away , , i have 6 children , all married , 18 grand kids , 7 great grand kids , with another 3 expected this year , ,, i also have a sort of epilepsy (dont black out )i also check out that site too , thanks to this program lol  i do hope you get some real relief marie , and yes its good to hear from people who care xx
    • marie_loui19398
      marie_loui19398 old_nanna

      Posted

      Oh Thank you so much for your sweet reply.  I wish you all the best, and thanks for answering me.  take care~
  • EileenH
    EileenH marie_loui19398

    Posted

    I was also switched from plain pred to medrol when I moved as pred isn't available here in Italy. I sorry to say I hated it - I'd had few side effects with pred, with Medrol I gained shed loads of weight, grew a beautiful dark beard, my skin and hair went mad. It also seemed not to work for me, I was up to 20mg and barely getting any effect. I was switched to another form of pred and had the immediate miracle effect of pred on PMR and over the last 2 years all the other side effects have gone, I've lost 35lbs in weight, hair back to normal - and am down to 4mg.

    If you still have pain it isn't a lower dose he wants to aim for - it is a higher one until the existing inflammation has been dealt with and THEN he can reduce. 15mg pred is the usual starting dose. But we know the problems people in the USA have getting doctors to use the best practice recommendations.

    I was 51 when my PMR first started - the average age is early 70s but by that age a much higher proportion have it, by 80 one in every two people have PMR. That skews the stats! It should be considered in ANY patient with the right symptoms over the age of 50 (used to be 55 but that has been revised). It is LESS likely in under 50s - but less doesn't mean it doesn't happen. I am of the opinion that younger patients with it tend to be fobbed off with other diagnoses, fibro, depression, "your age", because they think they aren't "old enough". 

    It is more common in people with Scandinavian genes - a lot of work was done in Olmsted county in Minnesota. It isn't hereditary except in the sense those genes make it more likely you might develop it. The concept it is a viral cause has been dismissed really but a viral infection may be the final trigger for many - it is multi-factorial and stress is a common factor. If there is a big wave it is probably because doctors have it in mind after reading a current article and recognise it!! On the other hand, it could be an environmental factor that was a final trigger - noone knows. But 3 times as many women as men develop PMR.

    This link takes you to a thread with links to sources of information and other PMR forums here in the UK. Further down the thread is a very slow reduction plan which has been successful for most people who have used it. But if you are still in pain - you don't need that yet. By the way - why twice a day? Best practice is said to be a single dose in the early morning - hits the inflammation harder and induces fewer side effects although for some people 2/3 in the morning and the rest later helps reduce morning stiffness well.

    https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    • bob73443
      bob73443 EileenH

      Posted

      Eileen,

      One out of every two people over the age of 80 have PMR????

      That's an incredible stat.  If you don't mind, where did you get it?

    • EileenH
      EileenH bob73443

      Posted

      In conversation with a PMR expert if I remember rightly, who probably said something to the effect that by age 80 about half will have had/have PMR. Which I admit isn't quite the same. To be honest, I suspect that it is more a case of about half of over 80-year-olds exhibit or have at some time exhibited the symptoms of PMR without it necessarily being considered a diagnosis and treated! Many older people accept the milder degrees of PMR as simply advancing age - and that is also a common response from GPs. It was said to me in my early 50s!

      It is very likely that the rates even at younger ages are far higher than quoted, simply because most of the figures are based on the population seem by rheumatologists and accepted by them as having PMR. From my own experiences, younger patients with text book symptoms are not considered because they are "too young". I know a few patients in their late 40s/early 50s told categorically by top rheumy experts that they have NOT got PMR who had the diagnosis revised on the basis of advanced imaging showing inflammation typical of PMR or response to a steroid injection suggesting the diagnosis. 

      The overall incidence is not high, it increases with age but becomes the most common inflammatory arthritis in the elderly. The incidence also varies from community to community and region to region. It is far higher amongst white northern Europeans, particularly with a Scandinavian genepool. It is far higher in the UK than in Italy and Spain - which always surprises me since Italy and Spain have very active research groups.

  • janet08828
    janet08828 marie_loui19398

    Posted

    Hi Marie Louise..

    Know exactly what you mean about finding people that understand .. had the same reaction when I finally found them.

    I am in DK and have the same impression, people ask what is wrong.. you tell them and they say "oh, what's that?" Never heard of it.

    Being in my mid 50's at the onset and an active, energetic sort of person with a medicine use that consisted of the odd headache pill I couldn't accept that this illness GCA suddenly came out of the blue and chose me.

    Anyway .. having looked around the net for information I found a site - can't remember which it was too long ago - but it mentioned one of the thoughts of "where it comes from" could be for example grief.

    This made sense to me as I had been through a horrible year - within the space of a year I had lost my dad, then my mum, my sister was diagnosed with an agressive cancer, my husband had been in intensive care and we had moved house. So I could sort of relate to the idea that maybe grief or trauma had a part to play in the onset of GCA .

    Good luck

    Janet

    • marie_loui19398
      marie_loui19398 janet08828

      Posted

      Hi Janet,   I am so sorry for such horrible time you had, losing your family.   stay strong, thank you for your kind words, take care, Marie
  • twigjean
    twigjean marie_loui19398

    Posted

    Michigan here. Mayo Clinic probably has the most information on PMR in the USA. There is a clinic in Florida probably within driving distance of you. As the first Mayo  was based in Minnesota which probably has the largest population of Scandinavan in USA. Also, Florida is a retirement state so many people probably are plagued withPMR.  It isn't difficult, just call for an appointment in the Rhuematology Department. We have good medicine here but sometimes you just have to look for it.

    My rhuematogist considered PMR immediately and ruled out the other autoimmune diseases.  On 15 mg of predinsone, I felt wonderful except for the fatigue. I'm down to 6 mg with one flair and now taking the prednisone down slowly. I went to Cleveland Clinic, as it was drivable, and rated the 2nd best inUSA.

    Hope this info helps and I agree this site is GREAT! 

    Twig

     

    • Padada
      Padada twigjean

      Posted

      hELLO teigjean,  I would love to correspond with you as I too am in the states.  I there a chance we could privately email, or phone each other.  I am new to pmr and would like to hear more about your experience.  This is a bold request I know, but I would so much like to actually talk with someone about pmr. I love this forum and respect the information so much.  It has helped me learn many wonderful things about pmr.  So I am not making light of the knowledge and information offered.  Since most on here are not from usa, it would not be possible to ring anyone up and just chat awhile.  Forgive me for the request and of course you can decline.  I dont know how we woud actually get in touch with each other if you wanted to because this forum is publicly visible to all .  Thank you , Mary
    • EileenH
      EileenH Padada

      Posted

      You can send people private messages - you will see an envelope image under the avatar on people's posts (except your own!). It is to all intents and purposes the same as sending an email as the recipient will get a notification of the message to their email box but neither of you need know the other person's email. 

      Of course, if anyone feels that even that is too invasive they can block messages from particular people. If anyone ever gets abusive messages in this way then they should report them to the moderator using the Report flag.

      Hope this helps Padada and twigjean - it's for info, I'm not poking my nose in in any other way. Maybe you two can start a US support group!

    • Padada
      Padada EileenH

      Posted

      Dear EileenH,  how lovely of you to tell me how to private message twigjean!  I so appreciate that.  I will do that and see what she thinks of my request.  I have learned so much from the forums I am in total awe of all the information available here.  So much more than available in USA.  Eileen you are so faithful to answer all of us who need help.  You are a godsend.  I just do so want to connect privately with someone who has the time and inclination to share.  It is probably a flaw in my pesonality that needs the one on one sharing.  But thank you again Eileen.
    • EileenH
      EileenH Padada

      Posted

      It is a very different thing to be able to sit down with a cup of coffee and swap experiences rather than just time-delayed on a forum. Even via Skype is more personal!

      These things are only available here in the UK because about 7 or 8 years ago 5 ladies "met" via this forum and got together to set up a charity to support people with PMR and GCA. This forum was all there was at the time. Now there are 3 charities, a national one based in London, one in the northeast of England (the original English one, each with a forum associated with them, and one in Scotland. But without the volunteers there would be nothing! 

    • Padada
      Padada EileenH

      Posted

      Thank you for understanding the difference between a one on one personal chat and a time-delayed forum reponse.  You made me feel more normal to have you validate my request. 

      You ladies who started the charity to support people with PMR and GCA are to be admired and commended.  It must have been a huge undertaking at the time and the fact that your forums are now available to all of us is a testimony to your intelligence and fortitude. I sincerely think you all are heroes. 

      On a different note - I just started having the symptoms of PMR in october of last year.  I was on the other forum talking to the ladies and describing my situation, but I cannot sign in to it anymore to update them.  I know that many are having trouble with the link.

      I am missminky100 on that forum.  I need to vent right now if you don't mind.  I am so discouraged.  My dose has now been upped to 15 mg pred. and I have been on it for 3 days counting today.  I do not have the 'miracle' remission that is spoken of.  Also, I have had other tests which seem to r/o RA, SLE, scleroderma, myeloma, etc. Here are the tests that I have had and all are normal - ANA screen, RH factor, aldolase, CCP serum protein electrophoresis and Total Protein. Amazingly my Sed Rate and CRP are normal range! The only one that was abnormal was the serum immunofixation test that showed a trace concentration of IGG KAPPA monoclonol proteins.  That test would be normal with NO monoclonol proteins. My reumatologist did not even mention what my result means - he totally ignored the abnormal result.

      I am so tired of feeling like I have the flu and being in pain.  I am sorry to moan on, I know I am not alone. Please forgive.  What do I do next?  I have a second opinion appointment with a different rheumy in 2 weeks.  I can't imagine living in this state of pain forever.  My hope is dwindling.

       

    • EileenH
      EileenH Padada

      Posted

      If you mean the northeast forum at forumup it hasn't been too bad the last few days - it is always better in European pm, your am maybe. You just have to be patient and use the back arrow and try again. It is very quiet though - everyone is struggling and we have no idea why!

      Your doctor should try upping your dose ot 20mg - and frankly if that doesn't provide a decent relief of symptoms (IRO 70%) then big questions have to be asked about whether what you have is PMR as we mean it. There are many causes of the symptoms that we call PMR and some do not react to the use of pred. Being RH factor negative doesn't mean you can't have RA, for example, there are seronegative forms. PMR and EORA (late/elderly onset RA) can be almost identical - at PET/CT is thought by some to differentiate - and PMR will respond dramatically to pred, LORA won't.

      I think your decision to seek a second opinion is a good one - I hope it helps. have you the option of going to the Mayo or Clevveland clinics? The both seem to be better than many when it comes to sorting things out.

    • EileenH
      EileenH

      Posted

      For anyone having problems with the other forum:

      "We are looking into this ongoing problem with this particular server and may have to change servers. As this is not easy we need to discuss this with all our Trustees and the people who adminster currently. 

      It is not easy to transfer all the past history stuff, but we do need to take some of it with us. However I am in contact with a couple of 'geeks' and hopefully they can come up with a good solution. . 

      Until Chris returns from her well earned holiday and I can get some answers that are suitable, everything is on hold. 

      In the meantime please bear with us and I promise to let you know what will be the outcome. 

      I don't want us to lose anybody but realise that the position is getting worse, so please bear with us in the meantime. 

      If anyone has bright ideas, let me know either via a PM on here or direct to pmrgcafightersne@googlemail.com headed FORUM. 

      If anyone needs advice and cannot get onto the forum, email using the above address."

      Please allow this moderator! The email is one for emergency communication while the other forum is having hissy fits!

    • marie_loui19398
      marie_loui19398 twigjean

      Posted

      Hi, thanks for the wonderful idea of Mayo clinic.  I didn't realise there is one here in florida.  Its on the other side of the state, but still not too far. 

        good luck to you, marie

    • Padada
      Padada EileenH

      Posted

      Just out of curiousity, do you know what LORA does respond to?  I thought that prednisone was also given for RA...of course I know little about RA except it to is inflammation. 

       

    • EileenH
      EileenH Padada

      Posted

      LORA will respond usually to DMARDs, Disease Modifying Anti Rheumatic Drugs. There is a whole range of them: methotrexate, azathioprine, leflunomide, sulphasalazine...

      https://patient.info/health/disease-modifying-antirheumatic-drugs-dmards-leaflet

      They work through a fairly set progression until they find one that works for you in both effect and sied-effects - most people do well on methotrexate for a time at least and it is usually the first to be tried. 

      Even with the DMARDs, people have flares, and when they have a flare pred is used as a taper to reduce the inflammation and pain quickly - unlike PMR that works but it is usually a bridge between one DMARD ceasing to work and having to find the next. Unfortunately more ignorant doctors think you can do the same with PMR. 

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