update

[isabella-34-55-345]

Hi everyone i check in every couple of days to read new posts your advice and encouragement have been invaluable these last few months. I rarely post myself as I guess I am still trying to find my way with this illness ! I have been on 12.5 mg of pred for last few months now, started at 15mg, pain did improve at the beginning but seems to have stuck at this point ! I have blood tests done every 3 weeks latest shows markers at 35 ( not sure if this is crp or esr) started at 50, after all these months i had hoped to be doing better! Dr has now upped pred to 15mg again and next round of blood tests in couple weeks. Are these levels high or is this just how long it takes to settle ? pain is still pretty bad and fatigue awful.

Thanks for listening

beye for now x

[DorsetLady PMRGCAuk volunteer]

Hi Isabella,

The problem with blood tests is there isn't a perfect answer or figure that you should be at! I would suggest that 35 is your ESR reading, and it is reducing - so that's good news. There are various opinions on what it should be - I think most agree is should be below 20, but it not something that is regularly checked until you are ill, so it's difficult to ascertain what is "normal"!

Some people never have raised figures, some are v. High. My ESR was 68 when I was diagnosed with GCA - after 18 months of not knowing what was wrong with me, and already lost the sight in one eye. To my mind that's not a particularly high reading for the amount of inflammation I had - some peoples on this forum have been a lot higher than that, some lower.

The real test is how you feel. With your symptoms I would think your inflammation is not properly under control, which is why your doctor has put you back up to 15mg. Were you ok at that dose? Most, but not necessarily all, pain should ease when the dose is high enough. The fatigue could be caused by the PMR but also by the Pred! Unfortunately it's sometimes difficult to know what causes what!

Hopefully now you back up to 15mg things will settle for you. Please keep us informed.

[cassie1208]

Isabella

Hope you are feeling OK but as ypu say fatigue is not good. I was diagnosed in October and put on 15mg , I cut to 13mg but pain returned with stress and doing too much so I went back up to 15mg. Now I have started to reduce again but only by ,5 at a time. As advised by everyone here I dont want to get in a yo yo situation.

When I had to go back up to 15mg I felt really fed up as I was back to square one but I realise now I cant cut by more than .5 at a time.

Cassie

[Griggser]

Hi Isabella, I hope you find more comfort at 15mg and don't be tempted to start reducing too quickly. I started at 15mg two years ago and am now on 14mg after yo yoing which was probably in part due to me trying to rush the reduction. Although the pain is a lot reduced the fatigue is the big issue now and as soon as I start to feel a bit better I try and do more only to get whacked out and feel awful for a few days. The issue is you can't control the PMZ but have to go along with it and find out what's best for you in regards drugs and activity. I'm learning the hard way!

[PMRpro Ambassador]

I assume this is your GP? Has he considered it might not be PMR or that you might need a short time at a dose above 15mg? You can't reduce successfully until the initial existing inflammation has been fully cleared out and you achieve a stable blood marker level that is as low as you can get at the starting dose. Then you reduce slowly to find the lowest dose that can still get that same effect. The question though is - how much did things improve at first? Was it dramatic or was it just a bit? If it was just a bit then maybe you should be referred to a rheumatologist because there are other things that look like PMR but don't respond as well to pred.

And YOU have to do your bit in the management. If you try to continue your normal level of activity then you will still have pain in your muscles. The fatigue is another matter - that you can only manage by pacing and resting between activities - as someone said somewhere else: load washing machine, sit down, empty dishwasher, sit down, iron a few items, sit down, iron a bit more, sit down...

[Hidden in reply to PMRpro]

I learnt the hard way ,fine after 36 hrs on 20mg, quick down to 15mg,beating the PMR ? with activity, swimming etc.I have another dive in me yet I thought ! down to 12.5mg, all of this based on the Rheumy's instructions-the Research advice at the time . pain returned and so 3yrs later, in finding this web site, and listening to the PRO'S and others so afflicted, , jogging(No moving along ),I am at 12mg-reducing 1mg/8weeks, forgetting the Dive', but trying to keep up the swimming 2x12 lengths/wk. Easy but there again I am RTD, no family in the house except my Dear wife , to look after, a bit of housework to help, but take it Easy, listen to the Pro's, and to them all I thank you and wishing you all the best to come in1916