I have had PMR for over 15 years now. I also have gout for 20 years or so but have not had any attacks. Have been taking 7 mg of pred. For some reason or other over the last 4 months or so I've had flare ups. Previous to that I cant remember having any. I thought that at 7mg I'm coasting along quite nicely. Since my first flare up 4 months ago I've increased my pred to 10mg and tapering ok. Managed to get to 8 mg and then a flair up, so now back to 10 mg. So i'm up and down from 10 to 8 mg. Most of the time I feel really unwell no energy or motivation to do anything. The last flare up this week I was totally dead in the water, like I had hit a brick wall whilst running and sat in the chair all day. Still not that good now but at least I'm moving about.
On all the flare ups it's always the same aches and pains; shoulders, eyes, legs etc. etc.... I'm not use what's provoked these flare ups. Spoke to the Dr. had the usual blood test, nothing showing. The Dr. doesn't seem interested, cant even be bothered to phone. Have to chase. Not quite sure where I should go from here because to be honest it's beginning to get me down and I don't seem to be able to get out of this low cloud depression that's hanging over my head all the time. Is depression the correct word, maybe feeling totally flat might be a better explanation/description. I cant even be bothered to get out of bed but I do but have to push myself to do it. Constantly being in this state is also affecting those people around me who see that I look ok so do understand why I am in this mood/state. After all these years managing PMR I though I had it under control. I've even managed my weight which I.m quite happy with but now I must admit I just don't know what to do.
It was suggested that I take CBD oil. Will that help.
Sorry this is long winded but any help would be appreciated
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Bobbury
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Just wondering whether the new issues are due to your adrenals, it might be worth asking for a cortisol test - initial blood can be done at surgery, and then if they are very low, further action can be taken...
Thanks for that, I will ask for a cortisol test but you know it's like getting blood out of a stone with these doctors at the moment. There is always an excuse for not to do something but I will be persistent. It shouldn't be like this.......
Apparently GPs have just received a letter from NHS telling them to get their house in order....lot of huffing and puffing going on no doubt!Shan’t hold my breath.
About b£**&^ time too!! I suspect it is a minority causing the trouble but they are all getting a bad name. Utter arrogance to refuse to see a patient f2f but send out the nurse or paramedic to do their job they are being paid pretty well for doing. Even if they don't think so.
Depending on the person, 7/8mg can be a bit of a sticking point. You’re starting to need the adrenal glands to put in a bit of effort. However, for some like me it is a bit too high still for the adrenal gland process to notice it needs to work but too low for a day’s needs. I didn’t have PMR but GCA only and I had aches and pains like a fluey ache and my muscles seemed extra prone to strain. At one point I thought I was getting PMR. The worst was the fatigue, emotional instability, weakness, feeling like I had nothing in the tank and the list goes on. It didn’t start to improve until I’d got to about 5mg and then it was better but unreliable until it gradually settled at very low doses. 5mg felt like the body had got the message finally to start producing its own cortisol, however the reduction had to be a painfully slow 0.5mg introduced ( to just dropped) over a month or two so it was a frustrating existence for months. I do feel for those with PMR because it isn’t clear whether the feeling so grotty and aches makes them think they are flaring or if the stress of that causes a flare or a bit of both. I know you’ve been down to 3mg before, does this feel the same?
To be honest I don't know where I am with this. Everything you've mentioned symptom wise is spot on. I think also that being on 7 mg for a long time and thought, yes I'm fine with this and then having flares it's been a shock to the system. I do understand what you are suggesting and I suppose I need to bite the bullet to get down to point where the glands start producing. Thanks for your help as always, much appreciated
Perhaps try 0.5mg over more than a month? But yes, deciding what is what is tricky. I have to say to keep going at 7mg down was a bit of a leap of faith.
I suspect that 8mg is just a tiny bit too low and the very slowly dripping tap of left over inflammation is taking a long time to tip you over the edge. I would try taking 8mg most of the time with 9mg maybe once or twice a week. But adrenal wobbles are definitely a possibility.
Don't underestimate the effect of the last 14 months of Covid effects. I think a lot of people are starting now to struggle with the uncertainty and changes in our lives. To start with there was a sense of the fight or flight response and being sensible adults we knuckled down and got on with it, the way we were taught as children when there was a situation where there was no choice. But it does get wearing eventually and with all the media hype about "going on holiday" and "getting some sun" combined with an utterly rubbish May (here too) there is a real sense of anticlimax.
Again PMR pro your absolutely right. I will take up on the advice of 9 mg - 8 mg once or twice a week. I've put myself on 10mg from the beginning of this week. I'll keep at 10 mg for a further week and start tapering by 0.5mg for each month thereafter until I get to 8mg. Does that sound right? And in the meantime I'll badger the doctor for a cortisone test! Thanks
Neither a basal cortisol test not a synacthen test will tell you anything useful at this dose - you need to be down to 5mg and preferably below before they are meaningful
OMG that is my story exactly, I have been up & down on steroids 12 times over the 15 yrs . I developed depression very quickly as I was only 48 and was leading an active life, cycling to work, swimming distance, gym, but what I wanted to say to you was I went on to antidepressants. I am still on them , and will stay on them as they improved my life so much. Have you tried them
No I haven't, not considered them. However I'm going to try CBD oil. Been recommended to me by a sports scientist. Apparently most footballers take it. Takes away the aches and pains and all the other stuff that's associated with having pains.
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