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Endocrinologist?

Posted , 11 users are following.

DebbieHurts
DebbieHurts

My general dr wants me to go to a endocrinologist to get help to reduce the steroids.  I hven't seen this subject on here; does anybody know what happens?  I have been taking 20 mg for PMR for about 2 years.  Whenverver I try to reduce even 1 mg, I get what I think is a flare up and give in to taking it to 20.  My SED rate is usually 40 or above, once about 53.  I have other issues, such as arthritis and fibro.  My dr is also thinking I should try to sleep with a CPAP again (I tried once and couldn't take it, but I plan to try again).  Anybody with experience with these subjects?

0 likes, 16 replies

16 Replies

  • FlipDover_Aust
    FlipDover_Aust DebbieHurts

    Posted

    Are you under the care of a rheumatologist? I really don't know what an endrocinologist could do about PMR to be perfectly honest (correct me if I'm wrong!)

    Have you tried methotrexate? It's used as a 'steroid sparer' and in my case it's been very successful. I wasn't able to get under 20mg either until I started taking MXT in Dec last year.

    I've been using a CPAP for nearly years - I had dreadful trouble learning to sleep with it at first, and would have given up if not for the persistant support of Mr Flip, who was already using one. I have central, as well as obstructive (made worse with my fat pred neck) sleep apneoa. It made a huge difference to me - no more excrutiating morning headaches and so tired during the day I couldn't function - oh gee - that bit sounds like PMR! lol

  • jeanne333
    jeanne333 DebbieHurts

    Posted

    I react as you do, if I try to go below 20mg, even by 1mg. A week ago, I went into the worse flare I've ever had, legs weak, stiff and the pain was terrible. If 20mg is my comfort point 20 it will be. I don't have sleep problems, now that I use a cpap. Maybe the nose piece they started you with was to big, i started with the large nose and mouth one and ended up with the smallest nose one, I dont even like to think about sleeping without it. Wouldn't remission be welcomed.
    • linda17563
      linda17563 jeanne333

      Posted

      You are all so lucky to have doctors and  rheumies that will let you stay on 20mg for so long...Will try to change mine ASP!  feel today I`v had enough...they don`t have my pain!......
    • iellen32
      iellen32 linda17563

      Posted

      I am with you on that - tired of having flare ups due to quick taperings!

      i 've learned my lesson! My health in first place!

      Keep safe. Take care.🌺

    • jeanne333
      jeanne333 linda17563

      Posted

      Yes, my RA is working with me, he isn't happy about the 20mg dosage, but agreed for now. I discussed this forum with him, and he agreed to let me lower at my own pace, which so far isn't working. He has also prescribed another med (I have to take it for 3 months, before we know if it will help, and i can lower my dose of steroids).. I've only been on it a month and I see no improvements so far; I will update and post, if I see any positive results.
  • Handbrake
    Handbrake DebbieHurts

    Posted

    HI Debbie, endocrinologists manage hormone issues and because you have been on prednisolone so long and unable to reduce your dose your Gp is probably concerned about your adrenal gland function.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey DebbieHurts

    Posted

    Debbie, although rheumatology is the recommended avenue for treatment when diagnosed with PMR and/or GCA, it sounds as though your general Dr is unsure of your diagnosis and feels that an endocrinologist may help, not least by investigating/ruling out other possibilities with your endocrine system, problems with your thyroid being one such possibility.   Other than that, has a steroid sparing drug such as Methotrexate or Leflunomide been trialled alongside the steroids to enable you to reduce from the higher steroid doses?
  • EileenH
    EileenH DebbieHurts

    Posted

    An endocrinologist isn't going to be able to make you reduce the pred - except possibly when you are able to get to below the magic 8mg point where the adrenal glands have to wake up. But that has nothing much to do with getting to a lower dose of pred to manage PMR.

    However - it has just occurred to me: have you and Jeanne been tried on another form of corticosteroid, or even brand?

    I started on prednisolone in the UK, both ordinary white tablets and the enteric coated forms worked fine for some time. Then I was given a new batch of enteric coated pred tablets (loose not in blister packs) - and the 5mg ones simply didn't work for me. I was taking 15mg as 3x5mg that didn't work, 15mg using the 2.5mg pills was fine but of course I ran out of them very quickly. 

    Then I was switched to Medrol (methyl prednisolone), the form of steroid they use here in Italy. It was hopeless, even at 20mg I struggled. Then I was switched again to a novel form of prednisone - and got the PMR/pred miracle at 15mg.

    Not everyone reacts the same to a given sort of steroid - even the brand may make a difference. It could well be worth discussing a change of medication in that way. It can't do any harm to try.

    My other question is: you say you have a flare-up and go back to 20mg. What do you mean? Some people are very sensitive to reductions, even apparently very small ones, when they go from every day one dose to every day at a lower dose. That's why the "Dead slow and nearly stop" approach was developed and it worked for a lot of people. I tend to find that the first 3 times I try a lower dose I can feel it - but the next day being back at the "normal" dose I'm back to being OK. After 3 or 4 tries my body accepts the the new offering.

    Other people find that by sticking it out for a week or so they are able to reduce - it is "steroid withdrawal rheumatism" that they experience. A flare will get worse over a week and usually doesn't start for a few days after changing the dose, steroid withdrawal pain starts within a hours of taking the first changed dose. But the "dead slow" approach does help.

    If you haven't seen it, it's in the responses here:

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

  • DebbieHurts
    DebbieHurts

    Posted

    Thanks for all the experiences and thoughts.  I feel better to know others are similar to me.  I do have a rheumatologist and I have been taking Azathoprine (sp) at a low does with the prednizone, which seemed to lower my inflammation numbers by about 5, and tI thinkg the idea is to increase it, but my rheum. actually died (heart attack), so I am with someone new who is much less concerned about me taking 20 mg of pred.  I haven't tried a different brand of pred; what is the "novel" prednisone you mention?  I need to try the dead slow method.  

    Thanks you all again.

    Eileen when I tried to go down one mg for a week or two, hoping that I'd get used to it, I just got worse in all over pain and gave in.  I don't function well even on 20, but I chug along in pain anyway.  Pred. at first helped me enormously and PMR seemed the diagnosis exactly, but that stopped as I tried to reduce and now seems impossible to feel good.  I need to lose weight to have a knee replacement, but the dr said it is nearly impossible to lose weight on pred.  I don't eat that much as it is, in my opinion, haha.

     

    • EileenH
      EileenH DebbieHurts

      Posted

      He may think it is nearly impossible to lose weight - but it can be done.  I started to lose the weight at 15mg of Lodotra (Europe)/Rayos (USA). I'd put on a lot of the typical pred weight with Medrol - and lost 38lbs when I came off it and used prednisone in the form of Rayos. To be fair it was in combo with a VERY low carb diet - when I eat more than about 50gm utilisable carb I don't lose weight and do gain if I eat more carbs. I'm not the only one - several have done so, not only by reducing carbs but that seems to help people in other ways. Sugar and refined carbs are very inflammatory.

      I assume your new rheumy is aware that LORA (late onset RA) can present identically to PMR? 

    • FlipDover_Aust
      FlipDover_Aust DebbieHurts

      Posted

      boy you really are between a rock and a hard place!

      Your situation sounds very similar to mine in that I was on 20mg and unable to get below that dose... even with DSNS.  That's when I (reluctantly) tried the MXT. I'm surprised your rhuemy hasn't mentioned it.

  • DebbieHurts
    DebbieHurts

    Posted

    This week I've started the dead slow methed, so far, so good.  Eileen what do you eat in a typical day?  Yes, I love bread and carbs, and sugar treats daily.   I wish I had the motivation to change my diet.  Thank you all for commenting.
    • EileenH
      EileenH DebbieHurts

      Posted

      Breakfast - 3 mugs of tea! I'm not a breakfast person, never was, and eating it is just food I don't really need so I ignored the received wisdom of the past however many years that breakfast is an important meal. The most recent thought is that it depends on the person - if I eat breakfst I still eat the same lunch...

      Lunch is usually a big bowl of salad with olive oil and vinegar. Dinner is meat or fish and either another large salad or oven-roast veggies. I rarely eat bread, rice, pasta or potatoes - it's a typical low-carb diet and I really never feel hungry. I started with the 5:2 diet to reset my appestat - which really did help to get my head around smaller portions. It took a few weeks but did work really well.

    • Anhaga
      Anhaga EileenH

      Posted

      What do you eat when you have your pred? 
    • EileenH
      EileenH Anhaga

      Posted

      Nothing WITH it - because I am on Lodotra/Rayos and it is to be taken at 10pm at night, within 3 hours of a meal. That creates the correct conditions in the gut for the coating of the tablets to break down in 4 hours, releasing the pred all in one go at 2am, the time that a study showed was the ideal time to take pred to achieve best relief from morning stiffness. So I eat my evening meal at about 7.45pm and take the tablets at 10pm.

      Before, I took my pred with a couple of mugs of tea shortly before my breakfast and a yoghurt or an egg was the most likely option.

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