REPORT ON G P VISIT TODAY

[Cheshy72]

Hi All,

This morning I had my G P appointment where I had to confess to taking my s i l's Prednisone. He was surprisingly good about it and agrees that it is a pretty good indication it is PMR seeing I feel so good after 3 pills. The three I took were 25mg and the script he has written is for 15 mg. He wants to see me in 2 weeks for a follow up appt.

He suggests cancelling the Rheumatologist appointment as he is saying basically, what for. More than happy to oblige.

I hope that the 15 mg dose is going to be okay as surely its best to be on lower dose providing it is effective.

So for the time being all good and the difference in my mood is wonderful. Now the next hurdle is my husbands treatment for Prostate cancer, he has opted for radiation instead of the operation. He needs a minor but painful operation before the Radiation. Life changes as old age catches up, although of course until the last few months I didn't feel old really.

Hopefully next year we will be able to travel a bit.

Thanks for all the encouragement. Cheryle x

[Hindags]

Glad to hear of you personal good outcome. Hoping for the same for your husband.

[Cheshy72 in reply to Hindags]

Thanks for your good wishes. Fingers crossed.

[SnazzyD]

Hopefully with the PMR under control it'll knock years off you.

As you said, lower dose is good provided it is effective.

[Cheshy72 in reply to SnazzyD]

That would be great to have a few years knocked off. But I do feel much better.

However after being up at 6 am doing tidying up, G P's visit, down the street for coffee and then Supermarket, I am feeling a bit wiped out.

[SheffieldJane in reply to Cheshy72]

No wonder you feel wiped out. Pacing is your watchword now. Lots of lovely naps.

[SheffieldJane]

So glad that something is under control and that your doctor was helpful. Sending you and your husband very best wishes for the best outcome for him too.

Let us know how you progress. X

[Cheshy72 in reply to SheffieldJane]

The Doctor was good and not too fazed by me taking pills not prescribed for me

but it was the Chemist who was scandalised . He's a good friend so told him I was desperate .

Have taken my 15 mgs and hoping it will be effective. x

[DorsetLady PMRGCAuk volunteer]

Good,

But still take things easy, you probably won’t feel so buoyant on 15mg and you are bound to be stressed by your husband’s condition and that doesn’t help PMR.

Take care.

[Cheshy72 in reply to DorsetLady]

Thanks D L

I' m wondering about the 15 mg, guess I'll know in the morning. Because I received the other pills in the late afternoon I have taken them at 6 pm.

The new script is for 3, 5mg taken through the day. Tonight I took the 3 at once and just not sure how to carry on. What to do tomorrow, a bit of guidance would be appreciated.

Should I take them very early in the morning and stay in bed a few hours to let them work. I'm quite often awake. I would even be happy to set the alarm if needed.

Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Cheshy72]

It recommended that you take as one dose, works better on the inflammation so not sure why doctor has suggested 3 times a day.

If you wake up early door’s might be an idea to take dose then, with a spoonful of yogurt, piece of bread, biscuit or something to aid digestion. You can then go back to sleep whilst the Pred begins to work on those dratted cytokines that appear around 4am and give you problems in morning!

If they are plain uncoated Pred, they usually take an hour or two get into the system.

Good luck.

[Cheshy72 in reply to DorsetLady]

Thanks for that.

[PMRpro Ambassador in reply to Cheshy72]

You should take them all at once, preferably early in the morning, not spread evenly through the day. The sooner after 4am the better - optimal is said as the result of a study to be 2am, then the pred is ready and waiting for the inflammatory substances by 4.30am. Experiement a bit - everyone is different.

[PMRpro Ambassador]

Is your husband is having brachytherapy? Or is it the "seeds" to focus the radation onto? My husband is now in the final stages of his ordinary bog-standard radiotherapy for PC, 27 down, 14 to go! Has all been better than we expected so far - bit of urgency when he stands up or turns over in bed but that is all apart from fatigue. Welcome to our world gentlemen!!!

[Cheshy72 in reply to PMRpro]

He is having "seeds" and a jell inserted between prostate and bowel to protect it from burns. He is also going in for an operation by Laser called a TURP, that is supposed to happen in a few weeks and takes 3 months to heal which brings us to the beginning of Feb to start his radiation which all going well is going to be high intensity of 4 weeks duration. Doesn't exactly sound like a picnic does it?

Last night for some reason I was up twice during the night and noticed it was about 2am and took my tablets. Woke up at 5 am damn it. and pain was low,all good.

By mid morning I was half dead, nauseous and have no energy all day. Thankfully the sun is shining and I could sit outside part of the day.

So I will take better notice of the advice to pace myself. When my husband asked me whats wrong and I replied , think I did too much yesterday he looked at me in puzzlement. .

[PMRpro Ambassador in reply to Cheshy72]

Aye, well, no doubt he will get it when he's having his r/t!!!! Not that mine took it too well when I said "Welcome to my world..."

[Jackoh]

Well it appears that you had a good outcome to this and have now got your own prescription! and I'm sure you will start feeling so much better. Don't try and do too much though on the good days and as you're feeling better. Still need to pace yourself otherwise you'll feel worse the next day. All best wishes to you and your husband. XJackie

[Cheshy72 in reply to Jackoh]

Pity I didn't pace myself yesterday. Today I have learnt my lesson. Thanks Jacie. x

[Rugger]

Good to hear you are on track now. Has anyone mentioned Kate Gilbert's book: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide (2nd edition)? It's very well written and contains much information and advice and might be of interest to your family.....?

Best wishes to you and your husband.

[Cheshy72 in reply to Rugger]

I will try and find the book. Could be useful.

[peanuckle]

There is always light at the end of the tunnel. Best wishes for you and for your husband's treatment.

[Insight329]

Hi, Cheshy72, I've been following your post and I, too, am pleased that you've had a good outcome. You must feel so relieved! You've gotten wonderful advice (isn't this place the best?). The only advice I have is something that I learned from PMRpro -- take your Prednisone and calcium 3 hours apart from each other (If you are on calcium). They don't play well together.

[Cheshy72 in reply to Insight329]

Hi Insight329,

When I go back to the G P in two weeks time he will probably mention calcium etc.

[Grants148]

So pleased you are feeling much better,the steroids do seem to boost our energy levels when we are on a high dose to start with,l could not wait to get up very early and get to work on my garden which had been rather neglected when the PMG was at it,s worst. That was when l started on 25 mg,l am down to just 3mg now and thePMG is all coming back,and the garden is being neglected again. It is important to not overdo things,l wish l had taken it a bit easier throughout the treatment. Be careful not to do too much even though you feel back to normal.l hope your husband ,s operation will be successful,all the best to you both and l wish you many happy days ahead x.

[PMRpro Ambassador in reply to Grants148]

Don't get the wrong idea - pred is not a "treatment", it is a management. Taking it easier earlier would have made no difference to what is happening now.

You are never simply reducing relentlessly to zero - you are looking for the lowest dose that manages the symptoms and you have obviously reached it. What was the last dose at which you had no more symptoms than with your starting dose? Go back to that - and stay there for a few months before trying again by which time the PMR may have faded a bit more.