Medication increase.

[wooh66]

Morning all....

Following my first and recent post about finding it hard for my family (Daughter) to see that I was not up to the entertaining for Christmas, I think the stress and worry of this jolly festive season has taken its toll and until now I didn't actually relate PMR to stressful situations. But since this upset I have gone down hill I last wrote saying from the high dose initially last October when I was diagnosed, that I had managed on a month by month reduction to get myself to 7mg. But this I think has been a step too far. As my pains are back in my hips, shoulder and my legs feel like lead weights, along with the very attractive "Kankles".

So GP visit this morning and she has said the best advise is to up the pred to 10mg. My bloods were also taken but she did say she is a believer that symptoms out weight ESR results as this can be masked by pred anyway. She has also suggested that I return to taking alendronic acid as I had stopped this at 7mg.

So I just wanted to see if others have had the same sort of experience ?

I think I need to get to grips with that this condition will run its own course and I just have to sit tight until it burns itself out (Hopefully). Sitting now with everything crossed.

[Celtic PMRGCAuk volunteer]

Great advice from your GP, Woo66, to increase the dose to 10mgs to manage what is obviously flaring inflammation going by the symptoms you are experiencing. Sadly, not really surprising considering the speed of your reductions thus far.

However, with regard to returning to Alendronic Acid, if you haven't had a DEXA bone density scan which has revealed bone thinning (Osteoporosis), then do ask for one BEFORE returning to AA. If the DEXA results are normal then AA is unnecessary at this stage. The usual calcium plus Vit D supplement should suffice. I was never prescribed AA and my bones survived intact in spite of a 40mg steroid starting dose (GCA+PMR). I did ensure I had plenty of dietary calcium, including 'live' probiotic yoghurt, milk, cheese and oily fish. Also, including a daily walk as far as your symptoms allow will provide one of the best weight-bearing exercises for bone strengthening.

[wooh66 in reply to Celtic]

Hi Celtic

Thank you for your reply.

Yes I agree maybe I took a few steps too far which is why I am now having to take a few back.

I haven’t had a DEXA scan and it has never been suggested. I took my own decision after reading about AA to not take it when I had reached a lower dose.

Maybe I will not worry at the moment as yes I take calcium and also Vitamin D.

Yes I was walking a lot when I felt good but this did lesson when the pain crept in.

[Celtic PMRGCAuk volunteer in reply to wooh66]

wooh66, it is always a good idea to have a DEXA bone density scan within a short time of starting steroids in order to have a baseline reading as guidance for the future, so it would be a good idea to request one.

Yes, it is difficult to keep up with the walking when in pain, but you don't have to walk "a lot". In my very early days with PMR/GCA, sometimes I could only manage 5/10 minutes before having to either sit down on someone's garden wall or return home but even 5 or 10 minutes is of benefit, and will help towards gradually building it up.

[PMRpro Ambassador in reply to wooh66]

Good GP! Everything the right attitude to PMR - hang onto her!

If 10mg isn't enough - though it should be - don't hesitate to ask for a bit more to get things under control. If you are in pain that will go at a slightly higher dose then you shouldn't be putting up with it - you need to find the lowest dose that manages the symptoms as well as the starting dose did. You can't reduce to a timetable, you have to pause now and again until your body is ready to go on. You will get there.

3 lots of a 10 min walk is the same as 1 x 30min - and a lot easier to manage. And you should feel well enough to WANT to do that. Not feeling that you are dragging yourself around - that is as good a sign as any that you are on a bit too low a dose.

But your last paragraph shows you are getting there: acceptance in't giving in, it is a state of not fighting the illness and then using that energy to do nice things. Learn to tell the difference between the things you want to do and can do and the things that would be good to do but you can't do without problems. And forget the things you can't do but someone else could - none of us is indispensable!

All in all, Christmas should be a time of peace and refreshment for you - which is far better than rushing around like a headless turkey and getting nowhere fast.

[HeronNS]

I second all the advice here. Just want to remind you to do your research to make sure that you are getting ALL the micronutrients needed for improving bone health - calcium and D3 are only two of the building blocks. The others include K2, magnesium, the other fat soluble vitamins (A,E), boron, etc. A lot can be got from diet, but not all, K2 almost certainly will need to be taken in supplement form. And short walks are better than no walks - you'll likely feel all the better for them! All the best.

[wooh66]

Thank you all.

Nice to hear you all agree 😊.

Yes I am very lucky that my GP is really understanding and has been there throughout.

Even taking 10mg today has made a difference to yesterday so I just need to listen to my body and do what is needed.

When I felt well i was using my fitbit and walking 20 miles plus a week , so that's a goal to be back at.

Yes I have had a bit of a reality check and changing what you need to isn't giving in at all.

That made me laugh PMRpro on the headless turkeys !!

I haven't heard of taking K2 HeronNS so I will have a look at that thank you .

[HeronNS in reply to wooh66]

Did you use the fitbit for your own info or were you also keeping tabs on others? I have an acquaintance who had a serious heart attack a few years ago. He now uses a fitbit for keeping track of his activity and compares notes with a relative of his who lives far away. They have a friendly competition going, although he always loses! I think having a companion for these activities, even on a virtual level, would really help with motivation.

[wooh66]

I got it initially for my own info, however when I found out friends had them we all went head to head on healthy challenges.

It was great fun and definitely keeps you motivated.

Sadly I think most of them have parked them up for now but I sure come January they will all be active again 😊.

[HeronNS in reply to wooh66]

How do you add emoticons? I only know the usual smiley or sad faces but people put different emoticons on here all the time. (Although letting me in on the secret might unleash a monster!)

[wooh66]

😆. I reply from a windows phone some times. So I have them on the keypad !!. Maybe that's why others can use them too. A monster like this 👾😁

[HeronNS in reply to wooh66]

Maybe my laptop has a program somewhere. I still haven't figured out the Windows 10 apps.

[HeronNS in reply to HeronNS]

❄ ☔ 🌈 yep, a monster is unleashed.

[babssara]

I'm like you HeronNS, windows 10. No idea how to get into emoticons. If either of us find out be sure to post it. I bet others would welcome it to.

Babs x

[HeronNS in reply to babssara]

My laptop has a touch screen keyboard (which until now I've never used). I bring that up and there is a smiley-face key. 👾 😱 Bwa ha ha ha.....

[babssara]

I touch mine and nothing happens boo hoo

x

[babssara]

Look what I've found 😄😏😂✈🚌🚐🚓🚖👍🎂💗💞💝🎇✨🎉

[PMRandRA in reply to babssara]

Show Orff! Hahahahahahaha

[wooh66]

Oh the monster 👾 has been unleashed for you both 😂. 🙌🍻🌺

[babssara]

Thanks HeronNS. I also didn't know about the touch screen option. Doesn't it make life easier? Small things amuse small minds!!!!

☺

[HeronNS]

🎅 Merry Christmas, HoHo Ho!

[HeronNS]

Now can anyone tell me how to change my profile picture? The one I have now is actually a photo of the ceramic poppies at Tower of London last year, but too small so no one can tell.

[babssara in reply to HeronNS]

Did you find out how to change your pic. I can tell you if not. Mind you I'm beginning to regret putting my own pic on I look dreadful stood next to my beautiful daughter.

Happy New Year to you Heron

Babs x

[HeronNS in reply to babssara]

Hi Babs. No, I haven't. I have checked the account and profile setting carefully. I know we can only change an avatar name twice (I did once), but it doesn't seem to have an option to change the image. Happy New Year to you, also! 🎶🎉✨🎶🌈

[babssara]

I've changed pic by going into my profile, edit profile. Where your pic is it should say upload, click on that takes you into "my computer" screen click in pictures and select the one you want. Hope this makes sense

x

[HeronNS in reply to babssara]

Thanks, I will give that a try!

[HeronNS in reply to babssara]

Well, that was easy! Hardest part was trying to get the original pic centered - as you can see that was not successful.