One step forward and one step back!: Thank you to... - PMRGCAuk

PMRGCAuk

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One step forward and one step back!

DevonMichael profile image
9 Replies

Thank you to all those who responded to my question, do I have PMR? I found the answers supportive, helpful and useful in taking action. I have seen the rheumatologist and taken blood tests, the results ESR 57 and CRP 59 sadly confirm what many of you thought, it is indeed PMR.

After the euphoria of zero prednisolone on the 11 September my body has been overtaken with stiffness,muscle fatigue, tiredness and pain in the legs, shoulders and pelvis for much of the day and on simple tasks of dressing.

With a new steroid plan for the next year. I now have to accept I am back on the medication trail.

To end on a positive note after two days of my new dose of 15mg prednisolone. The pain and stiffness have disappeared and I am back to feeling like me again. I am disappointed to get PMR after GCA but at least I feel I have a life again after these past two days have made me feel "normal" !

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DevonMichael
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9 Replies
markbenjamin57 profile image
markbenjamin57

Greetings DevonMichael :-)

Thanks for your update, post-zero preds - I remember your news in September.

Well, at least you're getting to know the unpredictability of these illnesses! But in a strange way, I'm guessing that PMR is the lesser of the two evils for you in that GCA can have potentially far more serious consequences?

All I can say is Welcome back, although I'm sure none of Us Lot would have wished it on you! Let's hope you make have a smoother Journey from now on - please keep us posted?

Best wishes

MB :-)

PMRpro profile image
PMRproAmbassador in reply to markbenjamin57

Depends how you look at it - GCA seems more likely to go away in a few years...

It must be hard to take but having symptoms relieved is better than not.🌻

SheffieldJane profile image
SheffieldJane

Sorry to hear that DevonMichael. I hope that you " see it off" as efficiently as you did before. Pace, pace pace. Keep in touch. There are worse things we can get.🍇

PMRpro profile image
PMRproAmbassador

Hard luck - but at least you didn't get a rheumy who suggested it wasn't likely. That has also happened...

Jackoh profile image
Jackoh

Good to hear from you again and for you to update us on your situation. As others have said - bad luck that PMR has come along after GCA but good that it has been recognised, acknowledged and is being treated. You seem very accepting of where you're at which I believe helps recovery. The more we fight against these conditions the more frustrated, and stressed we become, the worse we feel and so the circle continues. That's not to say that we never feel this way but it's good to try to address it when we feel we're going in that direction. Let us know how you get on . Best wishes Jackie

Klah profile image
Klah

What a bummer! But you have a great attitude! How long did you have the PMR last time? After 4 years of PMR I am in the habit of pacing myself and wonder if you automatically do that if the PMR is gone...or in remission. Glad you responded quickly again😊

DevonMichael profile image
DevonMichael in reply to Klah

I thought I only had GCA. After a period of three months with no prednisolone I discovered I had PMR. Now after three weeks of 15mg daily it is like I have a new body and new life compared to the three drug free months when I now realise how poor my quality of life was!

I now accept it will have to be as long as it takes, increased weight, raised blood sugar level, osteopenia and all the other side effects now seem worth accepting compared to endless stiffness and pain and poor quality of living!!

PMRpro profile image
PMRproAmbassador in reply to DevonMichael

Cut the carbs drastically - helps the weight and the raised blood sugar problems!

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