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Back to square one

Posted , 12 users are following.

julia85224
julia85224

Hello,

I haven't been on this forum for a while, due to various health issues, a house move and still coming to terms with a family loss.

I was diagnosed with Pmr 2016, I received a lot of support and advice from many people here.

This year I managed to reduce prednisone from the original 15mg to 9mg.

Failed again in October and had to increase to 10mg then 12.

I have been in so much pain, reduced mobility and chronic fatigue I am on my 3rd day of 15mg.

My question is, how long should I stay on 15mg, and do I reduce to 14, or 12mg.

At my wits end and this nightmare illness is managing me and not the other way round.

Apologies for rambling on, but I have seen 4 rhematologist's all as dismissive as each other.

Any advice would be appreciated.

I hope you are all as well as you can be.

Julia

0 likes, 14 replies

14 Replies

  • geri02076
    geri02076 julia85224

    Posted

    Hi Julia

    have you tried doing an antiflamatory diet its hard at first try just cutting out the white bread sugar night shades, tomatoes, potatoes, green peppers and you will see a difference

    i am fighting now not to go back on predisone i was diagnose in 2005 and was on pred for 7 months then did the diet i was fine till 2018 and i flared up again and my legs are killing me i see my arthritis dr wednesday sometimes i think its something else so todayvi started watching what i eat to see if it makes a difference like it did the ladt time one thing i cant eat is tomatoes i really flair up from tomatoes

    hugs geti

    • julia85224
      julia85224 geri02076

      Posted

      Hi,

      Thank you so much for your prompt reply.

      I do avoid most of those foods.

      I had my gall bladder removed in February only to be diagnosed with IBS.

      Quilting certainly give it a go.

      Take care.

  • mary19068
    mary19068 julia85224

    Posted

    Hi julia85224

    The rule of thumb is not to rush tapering on pred. Taper by 1mg a month until you get to 3-2mg and then taper by half mg. If you taper too quickly or taper by a larger mg than 1mg a month you will flare and and get various side effects and be quite ill.....slow tapering is the best course of action.....

    • diana21296
      diana21296 mary19068

      Posted

      Once down to 16mg from 30mg I tapered half mg per month. Rarely had a flare as so slow. Now on 5.5. Slowly slowly really helps but patience needed.

    • julia85224
      julia85224 mary19068

      Posted

      Hi

      Thank you for your prompt reply.

      I understand what you mean 're 1mg reduction, just want to be off these drugs.

      I think I will stay at 15mg for another week or so, and start the slow reduction again.

      Must admit I have felt really ill this weekend.

      Nasty illness but it is what it is.

      Patience has never been my strong point.

      Slow and steadfast I think.

      Take care.

    • julia85224
      julia85224 diana21296

      Posted

      Thank you for your prompt reply.

      I think you are definitely right, slow reduction.

      I will definitely have a think about 1/2 mg reduction.

      This yo yo of up and down is so soul destroying.

      Like most of us with pmr, the good days can be followed by quite a few bad ones.

      Have II be positive.

      Take care

  • snapperblue
    snapperblue julia85224

    Edited

    Oh, Julia!! You have not "failed" because you have had to increase your dose of prednisone! Tattoo that on your arm so you can see it every day.

    Welcome to the "back to square one" club. It is SO discouraging! Remember what you have read here before- that PMR waxes and wanes. Sometimes we can guess why, other times it is a mystery. You have been through a lot of stressful events that could easily have overtaxed the balance of your immune system and allowed the PMR to kick into gear again.

    Remember, we cannot win against PMR by brute force (toughing out flares, keeping the prednisone dose low.) We have to work with it, take enough prednisone to control the inflammation, and be patient.

    In Eileen's wise words, the goal is not getting off prednisone, it is taking the smallest dose that allows you to function with little or no pain. Tattoo this on your other arm.

    On your question on how long to stay at 15 mg, I can only give you the pattern I have tried to follow.

    If symptoms returned after a particular dose had been effective, in your case 9 mg, I'd increase a bit (to 10 or 12 mg), wait 3-5 days and see what happened. If that level controlled the symptoms, I'd hang out there for a week, then start the reduction of 10%. Since I would not have been at the higher dose long, I could reduce relatively quickly.

    On the other hand, if the symptoms returned (at 15 mg), I'd jump straight to a higher dose, say 20 mg rather than edging up. Again, if that works, linger a while, then you can decrease rather quickly, but maybe not to 9 mg.

    None of us, believe me, NONE of us wants to do that. After a slow decrease that has taken months, it feels like we are losing the game in the last quarter.

    Hang in there!! Taking prednisone is not a mortal sin!! You have been through a lot and the last thing you need is to be staggering around in in pain! You should be able to control this with prednisone.Be strong! Find a better doctor!!

    • julia85224
      julia85224 snapperblue

      Posted

      Hi,

      Thank you so much for your kind words and advice.

      I will defo get the tattoo.

      It is soul destroying, this reduction only to increase, but as you say staggering around is no way to live.

      The pain is the pits, but the fatigue and having to lie down only a daily basis is just miserable.

      I have never been very good at the "pacing" side to recovery, because in my head I am not ill, until I get a big reminder in the form of a flare which literally knocks me off my feet.

      I shouldn't moan there are plenty of people on here far worse off.

      I hope you are well, take care.

  • Anhaga
    Anhaga julia85224

    Posted

    What slow tapering method are you using?

    • julia85224
      julia85224 Anhaga

      Posted

      Hi Anhaga,

      Lovely to hear from you.

      Hope you are well.

      This year, I have gone from 12.5 to 11 then stayed at 10 for a month, didn't help myself as stained fence panels and gravel board plus garden furniture.

      I was going to 9 the following morning.

      That didn't happen so Dr said increase to 12, after 4 days in and out of bed I put pred up to 15.

      I was going to stay there for a couple of weeks.

      The thought of going down to 12.5 which is what the Dr will say to, fills me with dread

      I haven't felt this ill for a long time.

      I also have osteoporosis in hips and lower back and take strong painkillers for that.

      Any advice would be much appreciated.

      Take care.

    • Anhaga
      Anhaga julia85224

      Posted

      I guess given your experience dropping from 15 mg to 12.5 overnight is not a good idea, even though you've been lower not so long ago. Could you consider dropping by 1 mg at a time with a couple or so days between each drop, depending how things go? Do you have 1 mg tablets?

      Sorry about the osteoporosis. I wonder if the fact you have so much pain is causing you to be inactive, consequently your muscular strength is diminishing, and the pain gets worse - a vicious circle? Can you see a physiotherapist with experience in treating patients with OP so you could get some appropriate exercises?

    • julia85224
      julia85224 Anhaga

      Posted

      Hi,

      Thank you for the suggestions,

      I do have 1mg tablets and I think a very slow reduction is the way forward.

      Unfortunately my rhematologist doesn't agree.

      But then again he isn't spending too much time horizontal.

      I hadn't thought 're osteoporosis, it is a vicious circle, I will certainly sort a physiotherapist.

      Hope you are well.

  • claire08318
    claire08318 julia85224

    Posted

    oh julia im so sorry to hear this. i was only diagnosed yesterday and i can only imagine the pain you must be in. Unfortunately i cant offer you advice yet. But i can say do what ever is best for you and your illness because we all need to be able to live each day as pain free as possible. if you ever need a chat im here. x

    • julia85224
      julia85224 claire08318

      Posted

      Hi Claire,

      Thank you for your kind words.

      It isn't an easy illness, and to be fair I have been in denial and kicked against this for too long.

      I have always been lucky to have a lot of stamina, acceptance of the condition is key, plus the knowledge of the people on this forum is invaluable.

      I hope your journey with pmr is a short one.

      Take care

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