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DSNS and methotrexate

Posted , 12 users are following.

Guest
Guest

I went to see my Rheumatologist today for help with PMR flares, and tapering Prednisone. I presented him with the DSNS tapering plan and he completely discounted it, told me to taper 1 mg a month from 10 mg and is starting me on methotrexate. I hope it works but

I am not optimistic about it. I would like to hear from those of you who would like to comment.

0 likes, 26 replies

26 Replies

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  • ptolemy
    ptolemy Guest

    Posted

    The trouble is a lot of doctors think they are the experts and do not want to know from us amateurs although I have seen several articles encouraging patient participation particular with the age of the internet. I found that 1mg was a bit much under 10mg but half was better. You may find you can manage 1mg though.
  • Anhaga
    Anhaga Guest

    Posted

    Taper should never be more than 10% of your dose.  So once you are at about 7 mg, or even before if you have problems, a .5 mg taper using DSNS can work quite well, provided your particular case of PMR doesn't need more.  I've got to 1.5 this way.  Your doctor need to know IT ISN"T SLOW IF IT WORKS.  You are far more likely to flare and need to increase your dose, ending up with a higher lifetime intake of pred, if you are told to continue tapering relentlessly in 1 mg steps to zero.  Hardly anyone can do this successfully without problems.

    Mtx "may" help you achieve a slightly lower dose than you would have otherwise.  But mtx will not shorten the duration of PMR.

  • BillyP
    BillyP Guest

    Posted

    I am simply amazed at the treatments handed out to PMR patients from GPs and Rheumys …. No wonder people are confused as to the pred doses  ………….However...…..the other day I was looking at the diary that I had kept on my early PMR years regarding dosages etc etc. ….and guess what ?????. I was in exactly the same boat . Yep it took me quite a few years of trial and error to figure out the doses that suited ME.  I see a lot of people having the pred doses raised and lowered. then having flares (or pred withdrawl?????)  So these days if I look like having a flare ( or suspect things are not too good) ,I up my dose of pred from my stable 5 mg daily dose to 10mg  for 3 or 4 days then straight back to the daily 5mg dose... If I have a big flare , 25mg for about a month or more may be required to settle things down. At this stage a slow taper is required to get back to 5mg That may take up to 2 years (definitely not a couple of months as some are told to do) because your biggest enemy then is the pred  withdrawl   symptoms, .and this can definitely mimic your PMR symptoms. So, until you are aware of this situation, you are at the mercy of your Rheumy, who is most likely not aware of it also.  I know I may sound like a cracked record here , but pred withdrawl  is very , very real...……...and for me, I dont worry about getting off pred completely, a 5mg daily dose will do me for ever...…..
    • lynda62707
      lynda62707 BillyP

      Posted

      Given that I'm new to this party, can you tell me of any side effects you've had cuz of prednisone or pmr? Have you gained any weight ( I've gained 6 lbs in 6 weeks!) and my eating patterns haven't changed at all! I'm also developing a "Moonface", much to my dismay! I'm not sure of this trade off. I'm also sooo emotional (I cry at petco commercials), and I'm becoming a bit Snappy which is Totally out of character for me. Oyy vayy!

    • BillyP
      BillyP lynda62707

      Posted

      GDay Linda....Yep, a weight gain is mostly evident...… But I over came that with a change of eating habits.    Morning & afternoon teas replaced with a glass of water and a piece of fruit. ...I have the occasional biccy & piece of cake ….. Give away as much refined sugar thingos as you can, this helps the weight and your PMR pain as well...…….I have found , for me, sugar in fruits is not much of a problem. Fatty things can be cut down, like ice cream etc.( oh no she cried). sounds easy  I know, but does take a fair slice of effort. Carbs can be a down fall as I like my bread and taters, as long as you have it in moderation , for me , it didn't seem to be a problem.  So I guess  you just have to be a bit regemented in your eating habits.   .Moon face.... yep I did have that for a few years till I finally got my doses settled out.  thinking back...… I think the moon face started to go once I was mainly under 10mg daily......I didn't seem to suffer with the emotional bit ,(maybe the male ego fixed that ). I found that if I feel hungry, I will go and do some thing constructive to occupy my mind...…. As for being snappy,, I do find I may swear a little more than I used to...… main thing is, dont let it get you down & dont think you are going to get off pred in a hurry, ( that is, if you really do have PMR)………………… The only other side effect that I am aware of is , I bruise easily , and & only have to bump into some thing to knock of a bit of bark...….. I have been taking Fozamax ,for other things, and maybe this has helped keep my bone density ok...….     Best of luck.      …………..Billy...…………….

    • EileenH
      EileenH BillyP

      Posted

      I know a lot of people (including me) who say it isn't the pred that gives them a potty mouth - it was the PMR! I swore roundly pre-pred and it is a sure sign of a flare!!! 

    • lynda62707
      lynda62707 BillyP

      Posted

      Yesssss you're soooo right! I forgot to say about bruising! Good God..

      I look like I'm being abused!😱

    • Michdonn
      Michdonn lynda62707

      Posted

      Lynda, a little over 2 years on this PMR journey. Gained 22-24 lbs, which I have lost. Snappie is an understatement, ready to fight at the drop hat, sometimes I would scare myself, felt like was fighting to get out of my skin. I am a type 2 diabetic and Prednisone made it impossible to control my blood sugar. My mouth and tongue was sore. Yes, high levels of Pred are no fun, but beats the pain and debilitation of PMR. But the journey gets easier as you get on longer doses. Try to stay active, positive and smile. ☺️
    • ptolemy
      ptolemy lynda62707

      Posted

      I think I have had fifteen side effects. I did not gain weight mainly because I really cut back, cut out simple carbs and gluten as I heard they gave you a moon face. I am not sure if that is true or not but I managed not to get one. Carrying on with your normal diet can increase weight when you start pred which is a bit of a .... The worst was the hot flushes, although the fluid retention is a pain too. 
    • EileenH
      EileenH lynda62707

      Posted

      Unlike ptolemy I didn't count! I gained weight with PMR because of lack of exercise. It redistributed when I was put on pred but I didn't gain much more until I was switched to Medrol - then I had a good selection of adverse effects including weight gain, muscle wasting, a lovely black beard, crazy hair and skin and when I was admitted to hospital for something else I was labelled "Cushing's". 

      Then I cut carbs drastically and started to lose weight slowly. I was put on prednisone and the weight loss continued even at 15mg. I lost 35lbs in total, the moonface and midriff bulge went. My hair is back to normal and so is my skin. 

      Most adverse effects of pred can be managed fairly well when you know how. And the best way to manage PMR and pred is to take a deep breath and take one step at a time.

    • ptolemy
      ptolemy EileenH

      Posted

      I am a nerd and it all goes on my spreadsheet!!
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