Hello, I’m almost two weeks into 15mg pred, and I have significant improvements across my symptoms per se.
Residual symptoms are ongoing but I don’t expect miracles!
Still to be give a formal diagnosis at a Rheumy app due to atypical presentation and the GP not wishing to commit!
I am feeling more tired these days, and although I haven’t had the fatigue since I started the medication, I continue to have episodes of feeling “unwell”, general malaise, particularly in the afternoons with noticeable change in pallor, mood dips at these times and having to push through the day for work, preparing the meal etc.
So, my question is; Is this part and parcel of PMR to feel so good one one minute and crash the next, and do others experience the same?
Afraid so - until you learn how to live with PMR you will feel as if you are on a roller coaster. If you have a good day you will do too much and risk feeling rubbish the next day, Then you rest - and feel better. Pushing through isn't the best way of dealing with it - that is how you over do things and then feeling rubbish.
Especially the fatigue article - all sorts of different versions and it really can feel like hitting a brick wall! Inducing the SDOLD phenomenon (sit down or lie down).
Thank you PMRpro, yes it is just like being on a rollercoaster! I can relate to some of the observations of the Sjogren’s article, particularly fatigue no.3 “crumple and fold”. I have some bedtime reading to do it seems, thank you for signposting me, I will need to learn how to take the pressure off and adjust to new ways of coping without beating myself up for it...
Yup = No 3 is a real experience for me - once happened 3/4 of the way down a very short ski run! I had felt so good at the top I decided to have "one last run" - the last 1/4 of the run took over half an hour. Normally the entire run took less than 10 mins!!
Oh my goodness, that was bad timing re the ski slope. It’s such a horrid feeling and is completely overwhelming and debilitating and so hard to accept and fathom...
Was a bit - taught me to stick to my known limits though!!!
You're certainly not alone on how you're feeling. Mood swings are awful and loads of tears too. Shaky feeling soon after taking Pred each morning. Eye issues with raised pressure. Numb toes. Weight gain and fluid retention. But if pain stays at bay we can get through the side affects of Pred. Just keep a note of symptoms of GCA. Tender Head, Jaw Pain when opening mouth or eating and Headaches....then must be on a much higher dose to prevent going blind.....such a frightening thought !!
That sounds exactly how I felt when it all started. Like you I tried to ‘push through’ but I learned very quickly that it can just make things worse. You will have good and not so good days. Remember the Pred doesn’t cure you - it just works to minimise the inflammation. That said it can give you a good quality of life. You just need to learn how best to manage it and be patient. Keeping mobile is good but take plenty of rest too. Like PMR Pro says - know your limits and stick to them. I still have PMR but I’ve managed to do some amazing stuff - including travelled to Antartica. That’s something I never thought I would do when I was first diagnosed with PMR. 😀
Exactly - since PMR I have had touring holidays in China, S Korea and Canada as well as driving all over Europe. It can be done, just sometimes a bit differently.
Sorry to hear you having such horrid side effects of the medication Staplehurst, it is an unfortunate trade off isn’t it. I am thankful that so far, that I am doing well albeit it have joined the “wide awake club” when I should be in the land of nod!!! Take care too 🙂
Thanks Janet57, good advice. Your trip to Antarctic sounds amazing!! 🙂
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