chronic fatigue, pain in hips and thighs

[Scarysit]

help!

I was diagnosed with PMR in March 23 after months of endless trips to GP with what I now know were symptoms.

Initially started on 15mg pred, increased to 20mg few days later and this transformed my life. I felt well and could function.

Having tried unsuccessfully to reduce dose from 20 to 15 mg, then increasing to 17.5mg as a compromise for 5 weeks. (All this time having hip, thigh pain although not as bad as original)., for past week I have reduced again to 15mg as instructed by GP.

I now have same level of pain in hips/thighs but main issue is chronic fatigue. I am sleeping almost around the clock, fall asleep if I sit down, I’m unable to function normally and at times feel unable to walk across the lounge.

My question is, is this normal? Should I persevere or should I go back to GP?

My gut feeling is to request I go back to 20mg where I felt well, get to feel well again hopefully and then deal with reduction in dose later???

Any advice appreciated.

[SnazzyD]

You’re in the early stages which can really feel like one’s life has fallen apart. Pred wiped me out generally until the dose got more toward 10mg, but also the autoimmune activity can make one feel the same. In the beginning it is hard to know the difference. What are you doing or trying to do in the day? You say on 20mg you could function, but what did that entail? Are you sleeping properly at night? Perhaps try dropping in 1mg steps instead of a whole 2.5mg might smooth out the withdrawal symptoms.

What have you read or been told about PMR and how you should feel? Have you read DorsetLady ’s welcome post?

[Body_bonkers in reply to SnazzyD]

That's given me some hope SnazzyD - thanks. I'm completely wiped too out but 10mg might be feasible by the end of the year

[PMRpro Ambassador in reply to Body_bonkers]

Don't look at it as "I will be down to xmg by ..." - look at it more that in a year you will look back and see how far you have come. I used to say it to almost every new member when they wailed how awful it all was but don't say it so much now, Maybe I should start again! No-one ever believed me - but many did appear after a year or so to admit I had been correct, It might be a bit less, it might be a bit more, but you WILL be able to see the difference. It isn't the dose, it isn't the time - it is how you feel that matters.

[Body_bonkers in reply to PMRpro]

I believe you - you’ve been spot on with advice to date so thanks. My body is the only thing I plan to listen to - the medical establishment can take a run and jump telling me you should be on this dose for this amount of time

[SnazzyD in reply to Body_bonkers]

I agree with PMRpro in that getting a figure and pinning it to the calendar is usually not the way to go. So many things can change that and disappointment is waiting around the corner, along with delighted surprise of course. Take each day as it comes and avoid looking for land on the horizon because it sets up a feeling that today is not good enough. It does get better but not to a timetable. Well, that’s my opinion for what it’s worth.

[Mayadill in reply to SnazzyD]

Agree totally with you and Pro that a date on the calendar is not the way to go. But other things can be very different. Onset was acute and vicious. Started on Pred and after a prolonged spell of R+R everything was fine and by and large I keep it that way. I have learned to expect to tire more easily, to recover from exertion more slowly and to be a bit more emotionally volatile. I am not suffering and do not expect to be suffering and to the best of my regular blood tests' knowledge i am not suffering any side-effects and so do not wish for when it will be better. or have any pressing need to get off Pred. Tapering to me is sticking a stick with gradations into a well. What's the disease level today? if it's unchanged, shrug, stay on the same dose, maybe in a couple of weeks' time. i refuse to damage my QOL. Thus I stayed on 10 mg for around a year long before i learned this was actually an approved thing to do.

[Gossiplady in reply to SnazzyD]

hi SnazzyD! So very sensible! I remember my doctor initially telling me I was in for a rough ride for 2 or 3 years, but just to go how you feel day by day. True!

[SheffieldJane]

So many of our issues are caused by being instructed to taper off the steroids too fast. They have to have a chance to mop up all the inflammation that has built up while we waited for a firm diagnosis. We should never reduce by more than 10% of our dose. I stayed on my initial dose for 6 weeks and felt pretty good for that period. I then began reducing by 2 mgs at first with 4 weeks between drops. DorsetLady explains her tapering method in FAQs very clearly. I was ultra cautious and stopped tapering if I began to have persistent symptoms. This way I reduced smoothly to 7 mgs with no flares. I hit a bit of a wall there but that’s another story, it was probably my dose. One that was the lowest possible dose to control my symptoms. Anything more ambitious is likely to send you back to where you started. That is where I would go now and try a very gentle taper. Good luck!

[DorsetLady PMRGCAuk volunteer]

Hi,

As stated, stated don’t think you’ve really managed to get things under control properly ( not your fault)

As mentioned - have a read of this, and yes you do need to speak to GP again -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

The GP needs to go about things more gently - this isn't something you can reduce the dose like you do with acute requirements for pred.

[Scarysit in reply to PMRpro]

Thankyou for response. I need to speak to GP! Again…

[PMRpro Ambassador in reply to Scarysit]

Have I given you this link?

rcpe.ac.uk/sites/default/fi...

It was written to help GPs manage PMR and GCA when it was difficult for them to get consultant guidance. Old-ish it may be but the author still uses it at Luton & Dunstable hospital where she is a GCA specialist professor - because it works. We think bits of it are still on the fast side for some patients and it MUST be adjusted when someone doesn't cope with it well at any point, And that is something Prof Sarah Mackie in Leeds is adamant about. Using pred for PMR is totally different from using it for chest infections or asthma - the taper isn't a reduction, it is a titration of the pred dose for the individual patient and smal changes are critical.

[Scarysit in reply to PMRpro]

Thankyou, I hadn’t seen this before.

[Appledore6]

Sounds very normal for early days of PMR. The exhaustion is part of it and the best info I took away from this forum is not to fight it but rest as much as possible and do not feel guilty about sleeping more than usual your body needs it. It was very difficult for me to accept that this was not going to go away after a few weeks but was in for the long haul. Steroids and tapering will take over your life but you are fortunate to have found this site. There are some amazing people on here who will give you great advice on tapering which you are very unlikely to get from anywhere else. Please be kind to yourself and do not take on more than you are able to with family commitments and work. It does get easier and life will hopefully get back to normal. Good Luck

[Mayadill in reply to Appledore6]

I think untreated disease is exhausting. Can't recommend highly enough, just stopping, the way you'd have to stop if you'd broken a leg or got flu. Unless it's work, which could be complicated or having to look after someone else, it can wait. Delayed benefit. I was in hospital for 2 weeks followed by 2 weeks in a care home and when I got home I was still tired enough to need a carer but only for about ten days. After that I was bouncing as is not tired all the time and have pretty much stayed that way.

[Gimme]

Sorry that you are also still suffering with the fatigue, but this is helpful as this is my main complaint atm. We are at about the same stage, I started pred in Feb. From the comments on here, I think I might need to hike up my dose for a spell. It hit home that this is still considered early stage. Though I had already dropped to 5mg because of side effects, so I will need to see how I manage.

[Mayadill]

My gut feeling is to request I go back to 20mg where I felt well, get to feel well again hopefully and then deal with reduction in dose later???

Hiya, the dose I'm good on has been my gut feeling on which I have acted for three years, fortunately no doctor differing! Agree totally with SheffieldJane about the mopping up: i was on 20 mg for 7 weeks, after which reduced happily like her though in my case hit the wall at 10.