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

What is going on?!

Posted , 14 users are following.

DebbieHurts
DebbieHurts

Has anyone had this problem: 2 years of PMR taking prednisone, at year and a half I'd gotten down to 12mg when I got a flare up that has grown no matter my pred. dose, it seems.  At 18mg my SED rate was 53 and I had lots of pain.  The dr had me go up to 20mg and take another blood test, still 53 in pain.  Now I'm starting a new pill, something for arthritis or cancer to take each day at low dose.  Why did the pred stop working for me?  I hate this pain.

0 likes, 55 replies

55 Replies

Next
  • linda17563
    linda17563 DebbieHurts

    Posted

    Perhaps Eileen will be able to advise you, but I sympathise with your struggle...After 4 years I`m not able to lower under 11mg without pain/fatigue.  I suspect your doctor has offered Methotexate....Hopefully Eileen or others will advise you on that too.  Some people I think can lower the Pred on it...others no.  I was offered it bit refused....good luck...
  • constance.de
    constance.de DebbieHurts

    Posted

    Debbie, your story is not unusual.  My ESR rate was 88 and my CPR 60 when I started PMR four years ago.  Doctor put me on 30 mgs of Pred (to "zap" it, he said.  It didn't!  After just three or four months I was hospitalised as the blood rates kept going up.  None of the doctors, including the specialists, knew what was happening.  By this time my ESR rate was 132 and my CRP over 100.  They even put me n 60 mgs to see if that worked.  After two weeks that was put down to 30 again.  Since then my rates have yo-yoed like nobodies business.  During the following two years I was hospitalised again twice (each time for two weeks).  

    Last year my bloods were 'normal'  between 18 and 20, then in November up they went again.  So you see, some of us are just unlucky.  I have never been without pain in all these years!  

    Keep positive, at least, try!!

    All the best.  Regards from Constance.

    PS.  CRP/CPR, I always seem to get those two muddled up.  Brain fog, you know?!?

  • ptolemy
    ptolemy DebbieHurts

    Posted

    Debbie, you poor thing. Do you know the name of the new pill? My SED rate shot up from 30 to 53 after a cold and will not come down, my CRP shot up too, although my CRP is now nearly normal at 6.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey DebbieHurts

    Posted

    Debbie, whilst being treated for PMR, it is possible to succumb to other auto-immune conditions, including Rheumatoid Arthritis.  Have you been tested for the latter, although it has to be said the blood tests aren't always reliable, with some patients having sero-negative RA.  What is the other medication you have been prescribed?  I assume it is a DMARD of some sort to be taken alongside the Prednisolone in an effort to make reductions of the latter easier, but it doesn't sound like Methotrexate as that is usually taken once a week whereas you say you have to take the new pill each day.  I assume you are under a rheumatologist but, if not, do ask for a referral.  If you are under a rheumy, then perhaps a second-opinion is called for.  But, fingers crossed, your new drug will work meanwhile - I do hope so.
  • EileenH
    EileenH DebbieHurts

    Posted

    It is possible that it isn't PMR that you have but another inflammatory arthritis such as Late Onset RA - about 1 in 6 patients who are initially given a diagnosis of PMR have it revised at some later point. It could also be that you have developed atypical GCA and 20mg isn't enough to manage it at present.

    If the "other drug" is methotrexate it the first line approach for rheumatoid arthritis and also used alongside pred in PMR/GCA in an attempt to allow a better effect with a lower dose of pred, they call it "steroid sparing". Does it work? Very mixed opinions, even the (quite small) original studies disagreed: one said it helped, one said it didn't, one didn't know! It does work for some people if it doesn't cause side effects so is worth trying - but my personal suspicion is that the people for whom it works long term didn't have PMR or not just PMR but another arthritis. In the UK it must be given by a hospital consultant - though I assume in the US your rheumatologist can use it (you are in the US aren't you?).  If it is MTX make sure you are also given folic acid - it helps avoid some of the side effects such as mouth ulcers but you must take enough and not on the MTX days.

    But without knowing what drug it is I can't say anything more than that - as MrsO says, MTX is usually given once a week so it may not be. The same principal applies - these drugs are claimed to reduce the amount of pred needed. But they have their own side effects - do make sure you know what it is though. I will never take a pill again without knowing exactly what it is/does.

  • reggie92967
    reggie92967 DebbieHurts

    Posted

    I worry somewhat due to starting late July on 15mg., 3-months later dropping to 10mg. had big crash so back to 15mg. then up to 17.5mg., then graduallt 20mg. Last 2-weeks a flare up, so just Fri. I was upped by 1mg. to 21mg. So far not allot of change, but for sure am not where I was prior to diagnosis & start of prednisone, but slowly the symptoms are returning, with less intensity, but back ? I wonder what is considered an extremely high dose, what's the highest anyone has gone & for how long ? Thanks
    • EileenH
      EileenH reggie92967

      Posted

      The whole point is that PMR generally does respond well to a moderate dose of pred, that means 20mg max.

      Until relatively recently they often started PMR doses at 30mg, sometimes even more but in doing that the total dose of pred over the illness is much higher - that increases the risks of the side effects. In addition, using the high doses often masks other causes of the symptoms - only PMR responds so dramatically to these moderate doses, but other things will respond to the higher ones. So the recommendations were changed to encourage a lower dosing overall.

      Your problems could well stem from being dropped in dose so fast at the start - 5mg is a massive drop in PMR even if it works OK in other illnesses where pred is used. Once you get into a yoyo pattern with dosing it becomes increasingly difficult to reduce the next time. No-one knows why, it just does.

      And there are what I call "add-ons" - myofascial pain syndrome, piriformis syndrome, bursitis, just back muscles in a poor status because of walking badly and trying to protect yourself from the pain. These can be better dealt with in a more targeted manner - with physio, therapeutic massage and Bowen therapy for example, or with cortisone injections used appropriately.

      However - do I understand you to be saying that on 21mg pred you are WORSE than prior to diagnosis? If that is the case then the dx of PMR needs to be reconsidered. There are other forms of inflammatory arthritis that can present initially looking like PMR. They may even apparently respond quite well to pred for a while - but then the symptoms return. Anyone who really struggles to get under 20mg after 3 months should be reassessed - maybe by a different doctor who has no pre-conceptions.

    • Silver49
      Silver49 EileenH

      Posted

      I am aware of the variation in the way some are reducing their steroids. As I have had only one minor flare since the start and on realising that the regime I had been given was too quick I was able to rectify this. I am keen to avoid another flare so am following the DSNS to reduce from 10 to 9.5. It is working for me but I wonder if I am being too cautious. When I am fully on 9.5 how long should I stay on this,please? I started steroids towards the end of May.
    • EileenH
      EileenH Silver49

      Posted

      One of the top PMR doctors in the UK has a reduction plan whereby he does 15mg for 6 weeks, 12.5mg for 6 weeks and 10mg for A YEAR. Then they reduce 1mg per month. They found that resulted in a flare rate of 1 in 5 rather than the 3 in 5 with other reduction schemes. Using the DSANS approach I'm not convinced you need the year at 10mg and I suspect they meet their flares below 10mg where the percentage drop is increasing and above 10%.

      To have got to below 10mg in 8 months with an initial flare isn't bad on that basis is it? If you feel really well there's no reason to stick at 9.5mg if you are using DSANS - just keep creeping down and keep an eye out for stiffness etc. It depends on the person but as long as YOU feel good that is all that matters. It is fantastic when someone reduces fast and gets to 10mg in a short time - but it more often results in a flare and tears. It must depend on how active the autoimmune part of the disease is - the more active it is the more pred you will need. You could try1mg drops, or 1/2mg starting at 1 day new, 4 days old. Like all of PMR a bit of experimentation is sometimes worth it - just don't go mad ;-)

    • ptolemy
      ptolemy Silver49

      Posted

      I found going down by half a mg per month using the ultra slow method worked well until I got sciatica and put the dose up to 10mg again. 
    • Silver49
      Silver49 EileenH

      Posted

      Thank you, Eileen. I did a bit more yesterday and am feeling the effects today but not unduly considering what I did. As you,so rightly advise, I'll not go mad!
    • Silver49
      Silver49 ptolemy

      Posted

      Thank you. This is what I thought may work but do wonder about having to go up again. I hope to avoid this but time will tell. I'm sorry that you had to increase your dose. It's such a fine line and a nurse did say it's getting off the steroids that's the difficulty.
    • ptolemy
      ptolemy Silver49

      Posted

      I have found if you increase for a short time and then go down you can do it quite quickly. It just all depends!! I am glad that the nurse recognised the problems of reducing, a lot of doctors seem to be totally unaware of the problems it seems.
    • EileenH
      EileenH Silver49

      Posted

      She's right in one sense - but I suspect she didn't quite understand what she was saying. As long as the underlying autoimmune disorder is active there will be a need for daily pred to combat it. It isn't a "dependency" on the pred.

      PMR isn't like most illnesses where pred is used: the inflammation is reduced, there is no continuing cause of more inflammation and you can reduce the pred. Examples would be a chest infection or an asthma attack - the pred is to reduce the swelling and make it easier to breathe after a one-off cause of swelling. The best you can hope for in PMR is to be able to reduce the dose to the lowest level that manages that daily boost of the inflammation. If the autoimmune disorder is still active - you will need pred. For about half of patients that will be more or less 5 years, for about a quarter even longer or even for life - though the ones who need a low dose for life may be people with poor adrenal function rather than unending ongoing PMR.

    • Silver49
      Silver49 EileenH

      Posted

      Thank you,Eileen. I have friends and relatives who have asthma so understand the difference though some of them don't appreciate why I am 'still' on steroids! I'm sure you will have heard all the stories of people who were only on steroids for 3 months etc etc.. I did advise this friend that I appreciated that she was trying to be helpful but that in fact it was not and that it is better not to give dubious information especially as everyone is different. We are good friends and have known each other a long time. I know of some who have had PMR for over 15 years and 5 mgs is their possible life time dose. This has proved to be a tiring and uncomfortable day but tomorrow's another day!😀😀
    • EileenH
      EileenH Silver49

      Posted

      Of course - but as you know very well, if someone was only on steroids for 3 months the chances were it wasn't the PMR we have. PMR is only a name given to symptoms of an underlying invisible cause - and there are many. But they are always quoted at us - even by doctors.
    • Silver49
      Silver49 EileenH

      Posted

      Thank you, Eileen. It is a bit demoralising when someone says 3 months and we know full well that it's anything but.....
Back to top
Next

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.