Following a long consultation with the GP and taken notes in with me do as I didn’t leave anything out (have never done that before!) have been prescribed 15mg pred for a 5 day trial. Took my first dose this morning and will wait with baited breath to see any improvements or on a downside any side effects....
I have read that pred can interrupt sleep, well there will be nothing new there I guess!
Feeling better already that I have been listened to at the surgery and that they have not eliminated treatment due to my age or by normal markers.
Good for you - the trial period might need to be extended if you haven’t experienced a significant improvement in symptoms during 5 days. I would be happier with a couple of weeks before returning to the drawing board. Good luck! We have more advice following the outcome.
Sensible you for taking notes. More people should do it. It helps the doctor too as it saves them time.
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It really did help a lot in terms of my “baseline” and an “at best” and “at worst” symptoms. Felt I was fighting for my life (sounds very dramatic)!!
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No it isn’t - you are absolutely right - the customer is always right and we forget that we are customers. This is not an every day occurrence. Personally I use technology. I prepare my notes on my iMac, upload it to the cloud and access it on my iPhone! As I am being treated by several people it allows me to refer back if necessary to what I said to who and when.
I am not obsessive at all, but I like to keep a record and so yesterday I wrote and received a reply from my rheumatologist, both are uploaded to the cloud and should he/!someone else need a reminder I have it. I also keep copies of correspondence such as letters received in the same place: you never know when you are sitting in front of someone different that they have not got access to it.
So if you think that what you did was different..........
Hope this gets the right result for you. Be aware that we’re all different - 15mg might be enough for you, it’s a common starting dose for PMR and some patients experience the miraculous relief almost right away. In my case, I had to go up to 20mg and that got my life back after 2-3 weeks. Good luck!
It was like a magic wand for me. One day chronic pain and immobility and the next day relief. My doc had given me Gabapentin but it only zoned me out and confused me. Prednisolone has given me back my life. Good luck! I hope it works for you!
Do you know what? Unless it’s my imagination I am already feeling slightly better!! Definitely feeling positive and will see what the next 24 hours brings 🙂
It might be the meds, it’s might be the relief that you know what it is, it might be your imagination.....but whatever, still keep notes, and don’t go mad because you’re feeling better! Just be glad it’s working.
Yes it’s tempting to ‘catch up’ with all of the things you couldn’t do. Pacing yourself will ensure a smooth return to capacity. Enjoy! After a week I could have kissed my surgeon!
So happy to hear about your course of treatment. I’ve been reading about PMR quite a bit the past few weeks and most patients say they have been on it for years, so I am now familiarizing myself with my own situation....
After feeling miserable for about 2 years with extreme fatigue and only getting worse (and no real diagnosis from my primary), in the last couple of months the pain in my shoulders, hips, thighs, and neck have gotten so bad that I could barely move. Only then I came across PMR symptoms through my own online research.
Scheduled an appointment with a Rheumatologist and bingo! It may very well be it! I understand there will be a long recovery road but just knowing I’m not crazy and I’m not making this up makes me feel more optimistic about the future.
He requested an extensive list of tests/blood work to confirm. But decided to get me started with 15mg of prednisone right away for 1 week, 10mg the following week and 1 more week at 5mg.
Scheduled a follow up appointment in two weeks to review the blood tests. So hopefully by then the prednisone will have kicked in already (started yesterday) and together we’ll be able to figure out the long term course of treatment.
Can’t wait to start working out again and not feel miserable anymore! By the way I’m only 50 and used to be very athletic until 2 to 3 years ago when the fatigue and lethargy slowly creeped in...
Thank you for sharing your story! I hope we can continue exchanging our journeys through this channel. 💕🙏🏻
Bless you, you’ve been through the mill! So pleasing that you have a good Rheumy and he has started you on treatment. It’s really good to be in touch with this forum, the members are so knowledgeable, kind and caring and it’s a relief to chat with people who can empathise. So we have started the same dose on the same day! And are the same age too. My GP was so reluctant initially to prescribe due to age but thankfully I got there in the end. It’s early days isn’t it, but feels like I am emerging from the depths of a thick cloud!! I think I feel some very subtle improvements, however as DorsetLady has advised, not to overdo things too quickly. And she is right as I am pooped now and wanting my bed!! I can empathise with you so much re thinking you are crazy / making it up!! It’s so invisible isn’t it. Let’s keep our fingers crossed for us 🙂.
The tapering doses you mention are very quick, i.e. 15mg to 5mg in three weeks! Others may talk about this and it would be a good idea to take a look at tapering in 'pinned posts' top right hand corner.
They aren't a taper for a management plan - they are a reduction plan so that if it hasn't had an effect in 2 weeks it is possible to just stop the pred. That is a normal pred taper for short term use - different thing altogether. If it DOES work quickly, the doctor will be able to adjust the dose to a suitable starting dose and then introduce a taper.
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