I thought it had gone

I have been on my PMR nightmare for 4 years and a half years.  Since January I felt great and after normal blood test at 2mg and 1mg I finally tapered off completely and joked with my GP that I wouldn't see her for another 10 years.  I have slimmed down to my normal weight and my fat face has gone.  I turned 60 in March and was so happy telling everyone my PMR had gone.  BUT NO.  It is rearing it's ugly head again.  A week later I started getting the symptons.  I took 2mg. the next day 3mg and I can feel it getting worse. hence me sitting here at 4 am writing this.  What should I do now?  I can't bear the thought of having to go through all this again.  

4 Replies

  • I'm sorry to hear you are getting pain again. I am not one of the most experienced here but if it were me I'd go back to see my doc soon as I could. Maybe if you catch it early on, the journey won't be as harsh. From what I read most people have had to suffer for quite some time before getting a diagnosis and consequently the starting dose had to be quite high and so the side effects great and the journey long to get the inflammation under control. I don't know I'm only guessing at this. Have strength, it's a huge disappointment but you've done it before and you can again. xx

  • This is very very common - a return of the symptoms a few months after stopping the very low dose that the doctors claim does nothing - IT OFTEN DOES ENOUGH!

    The fact it has taken a few months to reappear probably means the build up of inflammation is very slow - but there. If you clear it out you may well be able to get back down to 5mg very quickly - unless the activity of the underlying autoimmune disorder has increased but that is something you can't tell in advance.

    I appreciate you can't face going through this again - but the plain reality is that you have a choice: pred or PMR. And the sooner you choose the pred the easier it will be to control it. There's no cure - you know that - but you CAN manage it well if you are sensible. Many of us have helped the weight gain problem by cutting carbs drastically - it does work for a lot of people and it has worked for me even at 15mg.

    If it were me, I would try at least 10mg for a few days - I have just had to go back to 15mg from 5mg where I had been perfectly happy. It took 15mg to manage it and it has taken me a couple of months to get to 12mg - the activity of the disease was far higher than it had been. But I couldn't do anything - a state I hadn't been in for nearly 4 years. It is a salutary reminder of the horror of unmanaged PMR.

  • Happened to me, too.  :(  Thought it was gone but it wasn't. 

    When saying you cut carbs...do you mean the refined carbs? Complex carbs? or both?

    I am a vegetarian ( became one after growing up on a farm and seeing animals killed) so fruits, veggies, grains, and nuts are my food.  I try to eat whole foods as God grew them and not resort to processed foods.  Still the weight gain.  So I am confused.. 

    I ordered a book from Amazon on Carbs so maybe that will enlighten me to what you all mean when you say you cut carbs.  Also, how many carbs a day do you allow when you cut them for weight loss with Prednisone? 

    sorry to sound stupid in this area.

    Just want to get well and have this over with.  Meanwhile, thinking positive sure helps me and telling myself one day this too will pass as it did with Kate Gilbert. :)

    Thanks for the forum!  Sure helps!

  • I hear you.  I was free of PMR for 2 years and then it hit again with a vengeance.  I was in denial - said it was my sciatic nerve and went for various treatments.  When I finally couldn't walk or stand by myself I realized the monster was back.  I have been on pred. for a year now (it was 2 years the first time) and have tapered down to 1 mg.   I take it a day at a time and enjoy my days of being able to golf, walk and swim because I know it can come back at anytime.   Live every day as best you can.  We are all here for you.

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