For Rob

Bones, joints and muscles
1

Having only recently read Rob's messages, & my, I got so worried at one point, so glad you wonderful people have managed to explain it all so thoroughly.

Glad Rob you are feeling just a tad bit better now.

I have had P,M,R, & G.C.A. since last July, started on 50mg preds, & am now down to 22 mg, which I feel isnt bad since starting them at xmas, as it wasnt diagnosed early.

Feel I wouldnt have had G.C.A. as well,if it had been .

The depressive feelings are part of the course I'm afraid, I have been on the floor with mine on times, but with the help of these special people here on this forum ,I have picked myself up ,dusted myself down & managed to have a laugh on times.

You have had a great deal of advice , good advice too, & I am sure eventually things will improve.

I keep telling myself it WILL get better.as I drop dosage, a few days feeling rough again, but I hang on in there & it improves.

Legs definately belong to someone else,& the face in the mirror isnt mine, she has gone somewhere for a while. still some back pain on times, that I can cope with , I take 30/500 Co-codamol when things get too bad, also brain fog, eyes like slits,yeah I look a mess, but hey I will get there , with the help of these people who are magic, you are not alone.

Keep positive my friend.you too will get there.

Cheers Amycakes.

2

Dear Amycakes

Ah what a lovely name...reminds me of my favourite cake.. angel cake. Mind you all cakes readily qualify as my favourite cakes!! Not good for the sensible eating I suppose..but those lovely people on this forum suggested I let myself have a treat occasionally..so cake is the order of the day for me!!

I feel very very humbled, when people take the trouble to reply to any comment I have made. I certainly feel very grateful for this forum and all the lovely people on it. I have learnt so much more from this forum, and the web sites that have been recommended via this forum, to look at. There is some great backgroung advice there and I certainly feel much more knowledgeable now. I can talk to the rheumy when I see him much more aware of what is happening to me.

I so hope that your doseage amycakes, helps you in everyway possible.

Thank you again for your lovely words..and thank you to all on this forum. I salute you all.

Loving Hugs

Rob

3

Amycakes

The good news is that once you get down to about 15mg, your own face comes back, the slit eyes go, the legs start to feel a bit more like themselves.

The back pain grrrrrrrrr - that takes ages sometimes.

But hey Amycakes, we have our eyesight, so who cares what we look like in the meantime. Just to wake in the morning and see - what a reward.

Keep on grinning, crying and picking yourself up and dusting yourself off and let the rest of it go hang.

Hope the pmr takes a long walk off a short pier. I am constantly amazed at how PMR patients cope. Me, I just have GCA.

4

Mrs.K Is it the pred that causes the back-ache, then? I assumed it was the PMR.

My friend who had\"just\" GCA only ever mentioned headaches. Different for men, perhaps.

Amycakes: that's the spirit. Keep it up and remember as night follows day the good days follow the bad. We won't talk about vice-versa!

Rob, enjoy your angel cake.

In my next life I swear I'll forget healthy diet. Where has it got me? Loads of fruit and veg. wholemeal bread, never smoked and we won't mention my weight as the others threatened to ban me if I did. And I get PMR TWICE

5

You are welcome Rob, we are all in the same boat, hopefully we will sail into a better harbour soon.

Yes Mrs K.

Your comments about things looking better when I get to a lower dose gives me hope.

I think I could qualify for a monster in Dr Who films at the mo, now theres a thought , wonder if they need any extras!!

My eyes are bloodshot ,& swollen ankles , guess I would get the part!

Keep smiling folks, you have no idea how much you all help me to get through this awful condition.

Cheers Amycakes

6

Hi Amycakes

Glad you are managing to reduce a bit I think you have made a vital point for Rob in there if you have a delay in diagnosis and therefore a delay in taking steroids or as in Robs case dont take the right doseage !! you have a danger of getting GCA also which is probably why Robs Rheumy gave him such a high doseage to start with

Sometimes Health professionals dont give you enough explanation of what is happenning

Im sure your face is hiding in there waiting to come back and surprise you Amycakes !! so keep up the good work

Mrs G

7

BettyE

Mrs.K Is it the pred that causes the back-ache, then? I assumed it was the PMR.

My friend who had\"just\" GCA only ever mentioned headaches. Different for men, perhaps.

Whow BettyE, wish I had just had headaches, left side headache, flashing lights, jaw claudication (could not chew) could not watch tv, needed darkened room and finally could have pulled the whole of my face bones off.

As far as I am aware, same symptoms for men, but then I do not know anybody who did not have more than a headache. Take a look at the BSR guidelines for more info.

My back-ache was caused because the high dose of steroids, knocked out the adrenal glands, but nobody told the pituitary (body clock) they were knocked out. It kept on sending messages and on and on and on. It has only lessened when I have managed to get down to 6mg. I actually ended up in a wheelchair and could not walk more than two car lenghts. I can now do three supermarket aisles providing I am pushing the trolley. But standing at the checkouts defeats me entirely. In fact standing still defeats me.

But my Sainsbury's people are brilliant. One of these days, I will walk right round the supermarket and satnd in line at the checkout. How about that for a goal!!!!!!!!!!!

8

Re when you get to 15mg you get your 'face' back, have to say mine hasn't appeared as yet :?

I still do not recognise 'me'....... face appears very puffy and eyes like slits as Amycakes has said!

But a friend came for coffee this morning and as she left, gave me a huge hug told me I was beginning to look more like myself and that over the past few months she had been very worried about me because I had looked so ill..... told me she was delighted the 'me' she knew and loved was returning! Now where did I put that razor :lol: :lol: :lol:

So she can see something I cannot and I am now on 13mg having come down from 20mg...... :lol: :lol: