Having been at 5mg for months, feeling very well, I have had a period of stress. My very dear friend passed away a month ago. She had a brain tumour , diagnosed 18 months ago. I had been visiting her weekly , the last 6 months were not very nice to watch, she was transferred to a care home and slowly lost her bodily functions. We also have done lots of entertaining, family coming to stay etc. I can only think that this has initiated a flare. It always starts in my hands/ fingers but now in shoulders and neck. Having horrible sweats and of course the awful tiredness. My appointment to the consultant has been shifted from October to February. I'm going to ring the nurses helpline for advice today, tried going up to 10mg for 3 days, slightly better, now at 8 mg but I'm hurting. Any advice???? I had a synacthen test in summer but was advised not to reduce any lower than 5mg . I thought PMR was on its way out, but it looks like it's bit me on the bum again☹️☹️☹️☹️☹️☹️. Feeling low in mood after such a great few months. Had my flu jab yesterday, so site of that is a bit sore too. Thanks for listening everyone.😊😊
Here we go again.....: Having been at 5mg for... - PMRGCAuk
Here we go again.....
Ooooooo, that stinks York54! Having been doing well for months and then to crash! I'm so sorry. It is that time of yer though isn't? The stress is already brewing!
I am so sorry about your friend... that's a very difficult thing to do; watch someone die. Especially when its a family member or friend. Good on you for being there for her.
I hope you get back to where you were soon!
👍👍👍👍 x
It seems unfair that one feels punished for doing a good deed and living life. However, I don’t believe IT has come back like a tormentor but that this is the way your body reacts to over doing it and your body has limits. This is what worries me for the future as I know life will throw me a curve ball or two. I just try to keep mentally ‘going inside’ to ask if everyone is alright on the bus so to speak. The only thing I can do now is keep up the dialogue with my body which is a different relationship to before where I would just keep ignoring the frantic stop bell, in the name of a higher purpose. There are times, as you found, where you had to give but perhaps other things should have taken a back seat, annoying and sad though it is. That’s the frustrating thing about our bodies reacting this way; we can’t do it all, even the nice bits sometimes. Judging by what I’ve read here, given the protracted stress you had, a few days of Pred increase may not do it and a week or two might be needed.
My September appointment was cancelled and I was given one for March. I was given a tip that I should ring the rheumatology department regularly to find out if there was a cancellation. I did so and was firstly given an appointment for December and the second time I got one for October, only two weeks after the original cancelled appointment. It shouldn't be like this and you probably don't feel like having to fight your corner, but something similar might work for you.
Marino, I'll give that a go. Was going to ring today but we had to do Tesco and when I got home , I was wiped out. ☹️
Best of luck...
It must have something to do with the time of year too - lots of people complaining of flares. Me too...
Do you think I should stay at 10 mg and then begin to taper again? On 8 mg, hurting in the morning but by tea time fingers and shoulders feel a bit better?😏
So sorry that you have lost a dear friend ,she was blessed to have you there for her as she was going through so much,you are bound to be missing her and it was a distressing time for you to watch her die.l hope that you will soon be back to your normal dose,it is going to take time and is not easy for you after having what sounds like a bad flare.Take care York 54 and give yourself some time to take things easy if you can xx.
Loss of a loved one is difficult enough, without the ripple effect of the accompanying stress on one's body. Indeed, we cannot totally escape stressful events from happening, only listen to our bodies and make the necessary adjustments (which in itself can feel like an experimentation).
Take the time you need to grieve and heal, and hope you can figure out a dose that with address your symptoms. Take good care.
Thankyou all for taking the time to read and reply 😊😊😊😊😊.
Sorry you lost your friend, she was blessed to have you by her side. Hope your flare will pass quickly. Soft hugs to you.
I am sorry that you have lost your friend. I imagine that it is a small comfort to know that you were able to be with her, to support her in her last days.🌺
❤️ Xx
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