Feeling positive after Rheumy appointment........I think!

First diagnosed March 2016 started on 20mg. Reduced too quickly to 11/12mg by July - lack of advice and guidelines at the time. Thank goodness I found this site!

Having struggled for past few months with dreadful shoulder pains and immobility I realised that I had lost control and my PMR was flaring. I had been trying the 'dead slow' reduction method with some success (only got to 16mg) but everything seemed to flare before Christmas and by early January I was truly fed up. Upped my dose back up to 20mg - now in my third week - and big improvements but now back where I started when first diagnosed last March! Worrying about steroid affects and couldn't get a NHS rheumy appointment until September so went privately.

Agreed to try 1mg a month reduction and see how it goes. My issue is my liver function tests. They have been extremely elevated throughout and even the rheumy had not seen an Alk phos level of 772! I had a liver biopsy last March which proved my liver was healthy - thank god - but they still don't understand my levels. Rheumy thinking about trying me on Methotextrate or Azathioprine once he has done more bloods and spoken to the liver specialists. He appreciates I am struggling to reduce steroid dose and isn't happy with me remaining on 20mg for too much longer. I at least feel someone is trying to help me and seems interested in managing my condition.

Does anyone have any similar experience and what are thoughts and opinions on the alternative drugs? I have read a bit about methotextrate and its varying degrees of success but don't know about the other one.

comments and help much appreciated as ever!

7 Replies

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  • If your liver values are raised I'm surprised he is considering mtx or aza - raised levels of them usually rules out their use. Were your bloods always taken and measured quickly? Just leaving blood standing around uncentrifuged for more than 4 hours increases the alk. phos.

    Has anyone though of trying a different corticosteroid? I do well with prednisolone and prednisone - but methylprednisolone simply did not work for me even at 20mg. The difference from one day to the next going from 20mg methylpred to 15mg prednisone in the form of Lodotra was the difference between night and day.

    Both mtx and aza don't work alone in PMR but they may change the way your body processes pred so you get more bang for your buck at a given dose. Or if you don't have PMR but LORA then they may work quite well. About 1 in 6 patients given a dx of PMR have it revised at some later date, often to LORA and it is something that should always be considered when someone has real difficulty reducing their dose of pred.

    I get shoulder and neck pain due to myofascial pain syndrome - has anyone considered that something else is behind the shoulder pain? Is it both sides almost equally?

    Out of interest, when and where is your pain worst? And are ALL your liver values as elevated as the alk phos?

  • My first blood tests when looking for a diagnosis showed all my liver functions hugely elevated. They couldn't believe i felt ok other than the pain of PMR! They refused to put me on steroids until the liver biopsy proved all was OK. I do have a history of raised liver functions but usually just above the norm and its usually GGT and Alk phos that are the worst. Nobody knows why and i have seen liver specialists when it first started 18 years ago and then last year with the onset of my PMR. As fas as I'm aware all bloods were dealt with promptly but one thing that has been constant in all my blood tests are elevated liver functions.

    I have only ever been on prednisolone. The rheumy did talk about RA and said it was always a possibility.

    The shoulder pain goes between left and right and has improved hugely since going back up to 20mg. i have investigated the myofascial pain syndrome after reading your other posts and have been talking to a practitioner so I will give that a go.

    At present my pain is well under control with only lingering shoulder discomfort. Still don't feel strong in my shoulders but do feel I could return to my pilates and start gradually regaining some strength.

    My most recent blood tests, a week ago, showed the Alk phos raised but only 456! Two were within normal range - which is a first for a long time and I think the GGT were just above the norm. I had to hand my test results over to the rheumy as he didn't have a copy hence my vagueness!

    As least he felt suitably baffled about my liver results to go and speak to the liver specialists who did my biopsy and see what they recommend before he changes anything. Meanwhile I am going to drop to 19mg next week and stay there for a month to see what happens.

  • i am looking forward to the continuation of the saga!

  • I'm a bit surprised he's considering Methotrexate or Azathioprine if your liver enzymes are raised! My Alk phos went up to around the 600 mark with Azo and my GGT went over 600!!! At least he's going to speak to the liver specialists first. Good luck.

  • You sound as bad as me! Did you come off the pred or how did it work out? I'm just wanting a positive way to reduce steroids and I suppose that's what he's thinking too. Did they workout why your liver enzymes were so high? Was it the PMR?

  • I am no expert at all but like you had to go back to 20mg ( mine was because of new GCA symptoms) The only thing I picked up from you post was that you were dropping down to 19mg next week and staying there for a month. Have you thought about coming down 1 mg a month using the DSNS method? It might help with any possible flares?

    Jackie xx

  • Hi Jackie, I did use the DSNS method at tail end of the year and I'm familiar with it. I may well start it again next week as it's not different from what rheumy recommended and might be more gentle on me. Will hopefully achieve same results.

    Thanks

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