Hi everyone
I have now been on meds for a week. My mobility has improved immensely. I still have some shoulder stiffness, so was wondering if prednisolone dose I am on 15mg will continue to help me improve!
I know it's early days😃 also my fatigue is worse even though I have been off work?
Any help welcomed
Hi JulieR2
Welcome 💐 I'm glad to hear your mobility has improved, shoulders sometimes can be a bit stubborn as they can have been very tense anyway with the pain you were in.
I had a 'frozen' shoulder as well when diagnosed (post Physio, post Surgery) & l can clearly remember the first day l felt well again which was at 10days after I started treatment & to this day I can see myself putting on my high heels again! 👠
Are you resting? Or trying to catch up with what you haven't been doing before treatment? Have you had blood tests done? ESR &/or CRP?
Take it easy over the weekend but if you still feeled fatigued you may need to see your GP again, presume it's him that's diagnosed you? How long has he recommended you stay on this dose?
Hope you feel better each day & let us know how you're doing.
Very Best Wishes
Mrs N x
Hi thanks for the reply. Yes I am under my GP I had slightly raised ESR and Reactive protein plus all usual symptoms. I am on 15 mg until 20th of march when I go for review following bloods chest X-ray. GP suggested I stay off until inflammatory markers are down. But the advice I am getting helpfully is pacing! As everyone knows that is so hard I had had symptoms for 3 months worked full time and looked after a home and two teenage sons so slowing down is hard. I am just frustrated with myself which I know everyone seems to be! Trying to eat sensibly and do as close to 10000 steps! I had been trying to walk my symptoms off and had been walking 15000 steps a day at one point! So no wonder I felt so awful! I am practising trying to slow down in the hope that on 20th March I will be on a reduction dose of prednisilone!
Hi Julie
The amount of walking you are doing screams out at me as way too much, you certainly can't walk off symptoms, not with PMR. I used to do my walking in our large M&S pushing an empty trolley.
Split your walks up if you can, one in the morning then see if you can manage in the afternoon, though you may benefit more with an hour on the bed with a book!
I'm afraid PMR alters your life as you knew it but we can achieve a compromise if we're careful, let the Pred do it's work & get the inflammation under control.
You've found a great group of people here who can offer you advise & help make the journey a bit easier.
Have a good weekend & I'd recommend Kate Gilbert's Book, "PMR & GCA a Survival Guide" for the boys to read so they'll understand & a point of reference for yourself.
Don't be disheartened, just be kind to yourself & it'll help enormously
Very Best Wishes
Mrs B 🌺
I just love your idea of walking around Marks Sparks with an empty trolley! You can do that in the pouring rain 
I'll have to make do with Tesco as we don't have a Marks near us
I used to put my handbag in it! 😂 then my coat if I got hot! We have the largest M&S purpose built store in Europe, its huge! Great place for exercise & the odd purchase or two! . . .
Oh great! I've always loved M&S....how lucky are you?! Thanks for the brilliant idea anyway.....I'm walking better every day 3 weeks after my hip replacement and can't wait to get out on our beach with my dog but I have to be careful to take sunglasses.....I can't stand the glare from the sand! I really never thought of walking inside!!
I don't do the cold or rain! The other thing we did was go to garden centres, again using a trolley 😂 there's lots of outside & inside walking & you can have a break n have a coffee! My GP was impressed with this idea & started recommending it to rehab patients! It'll be great when you can get back to walking on the beach.
Hope your new hip makes a big difference to you. x
Thanks Mrs Nails...I also adore Garden Centres....so much to look at besides the plants. I tend to walk very slowly around these places though.....usually being dragged away by my husband !
By the way...as soon as my hip is healed I'm booked in for a new knee! First the right, then the left! I shall be chasing seagulls in the fullness of time 
The NE of England charity produced a DVD to explain to family and friends what PMR does to us, with sections by both patients and healthcare professionals. Available here:
pmr-gca-northeast.org.uk/in...
You might stand a better chance of teenage boys watching the video than reading Kate's book!
There are lots of stories on the site too so do have a look around it.
Hi JulieR2 and welcome! So glad you are experiencing the Prednisalone miracle. However, you need to bear in mind that it is not a cure, essentially the steroids reduce the inflammation thereby helping with the pain and reducing the damage the inflammation does. You still have the condition and it is essential not to try to do too much, to pace yourself and rest often. The fatigue is pretty constant and I'm afraid the steroids don't help with it. I have learned to spend my energy like a miser and save it up for important things with rest before and afterwards.
My starting dose was 20 mgs, an extra 5mgs might mop up the rest of the pain, I'd talk to your prescribing doctor.
Good luck on your journey with this and look after yourself!
Thanks so much it's lovely hearing others stories although it would be better if no one had to go through this! For me I think things could be worse and I keep remembering that there are lots of people who have so much more to deal with
Hi Julie,
Glad to hear meds have helped, some people get more relief than others, so you shouldn't necessarily expect to feel 100% better, most doctors say if 70% improved then that's good. As you've only been on for a week it may take a little longer as well.
You do have to do your bit as well though, you are not back to normal (the underlying problem is still there - it's not cured, just controlled) and therefore cannot act as if you are, trying to catch up on jobs you couldn't do pre diagnosis. You need to learn to pace yourself and have plenty of rest. Don't try and do the hoovering, shopping and walking the dog all in one morning! Spread out the chores and stop, have a cuppa and put your feet up more often.
Hopefully the fatigue will reduce if you do that, give yourself another couple of weeks to see what happens, and then if you really don't feel any better speak to doctor - you don't really want to increase Pred unless it's definitely not enough. It just makes the journey longer, but if you have to, you have to. But all I'm saying is - give it chance!
Thanks for the encouragement
It may continue to improve but it is impossible to say for sure - everyone is different. It took a few months for my hip pain and stiffness to really go away as it was due to bursitis and the bursae have poor blood flow so don't get as good a supply of pred as the muscles do. The foot and hand pain which was tendonitis and synovitis also took much longer.
The pred does nothing for the fatigue - that is lifestyle changes and pacing that works there. I bet you have actually been doing more - catching up on what you haven't been doing! Plus pred can cause fatigue as a side effect but it doesn't affect everyone.
Spoon theory:
butyoudontlooksick.com/arti...
and Pacing:
I have had shoulder pain all along, although I think it probably has improved over time. I loved standing in a hot shower, I also got one of those lavender things you stick in the microwave and wrapped it round my shoulders which was a pleasant relief. As the others say PMR is life changing and we have to find new ways of doing things. It can also be a pleasant challenge as we can do gentler things we had not thought of doing before. I have become a nutrition nerd for example! One thing that I was told which really helped was REST, REST, REST.
Alendronic Acid - First Day
first drop in dose of pred
My First Rheumy Visit
First Post on PMR/GCA
