PMR

[ANGR52]

I was diagnosed last year and have had a bad relapse 2 weeks ago my steroids have increased but I feel no better is there any hope

[PMRpro Ambassador]

"is there any hope" - what of? No-one has died of PMR yet that I know of

What dose were you at and what have you increased to? You need to increase the dose to what is enough to manage the symptoms - which is all the steroids ever do, they cure nothing.

[ANGR52 in reply to PMRpro]

thanks I am at present on 8mgms but the symptoms haven't improved

[ANGR52]

I am a 64yrs old and was delayed in diagnosis because I thought the fatigue was due to my age.

I now know it's the condition I also have coeliac disease which is a autoimmune condition.

I have suffered from depression on treatment for 11 years now on reducing dose of antidepressants

I still try to work as a nurse in a care home but some days find it difficult and have always struggled with my weight so the weight gain is difficult for me.

this sounds an awful medical history but one I live with day to day

[DorsetLady PMRGCAuk volunteer]

Hi ANGR52,

Sorry to hear you've had a relapse. Think we need a bit more info to give you a better answer. What dose were you on when your pains came back, and why did you go back up to 8mg? Was that the last dose you felt good at? It may not be enough this time around.

You may have reduced too quickly and gone past YOUR optimum level to control the inflammation. You are also at the level where your adrenals need to start kicking back in, so it is likely that may make you more fatigued.

If you are working long shifts in a care home then I guess that's not helping the situation.

But, as I said a bit more information on your time on Pred, your reduction plan etc would help.

[ANGR52 in reply to DorsetLady]

my G/P advised 1mgm /month and when I reached 5mgms my symptoms came back with vengeance causing extreme pain and stiffness in my r hip and severe fatigue I contacted my now new G/P 3rd one in 9months thanks to the NHS. She advised to up the dose to 8mgms but after a week feel no better still struggling to walk and sleeping a lot except at night thanks to the steroids apparently my bloods are ok except for my ESR which is still raised I am seeing the G/P tomorrow I feel frustrated as I am unable to work at present

[PMRpro Ambassador in reply to ANGR52]

Thank you for the extra info.

The general advice from some top rheumies is to start dealing with a flare by adding 5mg to the dose at which you flared - so on that basis you should try 10mg and see if that does the trick. It really isn't particularly important what your bloods say at present - here you go by symptoms.

I had a flare just over a year ago at 5mg - my GP told me to go straight back to 15mg, I had intended trying 10mg. She was right because while 15mg was the same sort of miracle relief I had originally, when I tried to reduce I couldn't get any lower than 13mg without problems. It did calm down again after about 3 or 4 months.

If it were me and 10mg still didn't help I would try 15mg for one day initially - sometimes you have to bite the bullet and hit it hard to stop it developing too far. If it was enough, you could then drop 1mg a day until you find where it isn't enough and go back up 1mg.

[DorsetLady PMRGCAuk volunteer in reply to ANGR52]

Hi again,

Yes that's the usual sort of plan advised by GPs, but unfortunately it's not always possible. Real life very often gets in the way, and throws the plan out the window!

Couple of things that might help once you get back to an even keel, after following PMRpro's excellent advice.

a. Don't ever reduce if you have any symptoms, they usually precede any rise in ESR, which by the way can be raised by other things -colds, virus, stress -so aren't 100% reliable - although doctors seem to put a lot of trust in them, or if you know you have sometimes stressful on the horizon in the next few days,

b. Remember the mantra (recommended by the experts) don't reduce more than 10% of your existing dose - at 10mg that's 1mg, but below that it works out more than 10% - maybe not much, but enough sometimes to make a difference. That's the reason why many cut their tablets -so long as they are uncoated, obviously).

c. as I said in previous answer your adrenal glands need to start working when you get down to about 7mg - and sometimes they're a bit sluggish, so that makes everything much more difficult,

d. How are you reducing? From one day to the next, or taking a slower approach introducing the lower dose on a couple of days during 1st week, then on another couple of days the 2nd week, and so on until you are completely on the new dose. Don't do consecutive days initially - say Mon & Fri, then Mon, Wed, Fri, Sun. Most people find that easier, and once you get to new dose, if everything's okay, off you go again. I used to stay at the new dose for 1 week, just to make sure, then off I went again. It might sound long winded, but it's not really, and I never had a flare doing it that way.

I can understand you want to get back to work, but you need to get yourself right first!

Good luck.

[bigg8]

Wish I could give an answer to this but it is also something I am concerned about myself. Because at present I feel pretty good having been diagnosed early this year2017 started on 15ml predeslone and now down to 8ml but have been warned not to over do things and to take each day has it comes which I do find very difficult has I like to be busy and active not one to sit around watching telly so if there is an answer to it let me know 😉

[PMRpro Ambassador in reply to bigg8]

Try - do something without going mad and see how you feel next day. Walking is good but to start with try doing 2 lots of shorter walks with a bit of a break between, preferably somewhere where you can bale out if you get tired. Bit of a pain if you end up on a remote rural path and stuck! Rest the next day. If you were fine - next time do 5 mins more. And so on. I can walk for a couple of hours as long as I don't try climbing mountains or rush!

I don't know what sort of things you want to do - tell us and I'm sure someone will have some suggestions.