Thigh pain and stiffness

[Jantayl]

I have been on 4mg pred for most of this year with a short foray to 3.5mg Feb/Mar. My CRP mid July was 0.8 so this gave me some confidence to try 3.5mg which I started 2 weeks ago. I am finding that now I am tired/ lacking energy all the time and have stiffness and some pain in the back of my thighs. Should I go back to 4mg or maybe higher for a short time or ‘tough’ it out and continue on 3.5. I have a telephone appt with my Rheum at end Aug but feeling so miserable I cannot wait till then.

[piglette]

The tiredness sounds like the deathly fatigue due to your adrenals being woken up and they are still sleepy! If you are having more pain than normal that might be PMR problems and I might go back to 4mg and see if you feel better. You may find you need to up the dose by 5mg say for a week to hit the PMR on the head and then drop back to 4mg.

[Jantayl in reply to piglette]

Thanks - this is what I suspected - needed some advice and reassurance

[piglette in reply to Jantayl]

I must admit the deathly fatigue is deathly! I just gave into it. It does slowly improve though

[Joanbill13 in reply to Jantayl]

I’m just the same

[PMRpro Ambassador]

I think that adrenal problems are most likely and in that case toughing out is preferable to going back up if you can cope with it as only sticking at a low dose encourages the adrenal set up to get going again. The symptoms should improve over time if it is that, if they worsen you may need to have a rethink that it may be the PMR but only time will show that.

[Jantayl in reply to PMRpro]

It is such a quandary. I am used to being active and walking regularly and find it so difficult at home not doing much. I feel such stiffness standing and bending - and am sweating a lot which I don’t think is just the weather!?

[PMRpro Ambassador in reply to Jantayl]

Is that all worse now than it was at higher doses? Where did it start to get worse?

[Jantayl in reply to PMRpro]

In the past week I have noticed it more. I was on holiday for 6 weeks in France from end May and stayed at 4 all the time. I had sore knees and mostly cycled. After coming home I have been in hospital a couple of times with ongoing UTI. This has now cleared so I thought I should try to go down to 3.5 - maybe that was a mistake. the stiffness and pain seems to ease slightly in the afternoon. Hope all this makes sense!

[PMRpro Ambassador in reply to Jantayl]

It does and it fits with 3,5mg being marginally too low and it is now catching up with you. Try going back to 4mg and see if that is enough to sort it rather than the usual flare advice. Then reasses after a few days. Wait until you are fully over the hospitalisation before you try again - even just a couple of days in bed can take weeks to recover from, without being ill as well.

[Jantayl in reply to PMRpro]

Thanks - will do.

[Chopin002]

I have discovered that if you want to get lower you need to tough out the fatigue. I tried to get to 2 and a half last November. It was a no. Felt like PMR just like the beginning. Had to add 5 and down slowly again. Just tried again July . It’s been over a month of fatigue but I persevered. Last few days energy back. Think I made it. Will sit here now for a month or so. It’s really listening to your body. Big difference between the fatigue and malaise or the PMR itself. This is my story but might help. Best wishes.

[Jantayl in reply to Chopin002]

Thanks - it really does. I tried 4 again today and stiffness much better. It is so difficult understanding what is the PMR and what may have another cause.

[Greekyogurt in reply to Jantayl]

I agree I have new back pain, severe, and not sure if PMR or I damaged a muscle. I am on 7.5mg reduced from 20mg. Diagnosed in March 2023. I felt great for a while on prednisolone. Seeing consultant in Sep so will check then. It is so restricting and my best exercise is gentle swimming and walking, Can't wait to get back to Yoga, if ever! My advice is stay positive and fo what you can in spite of the dreadful tiredness. Good luck

[Nagswoman]

4 one day. 3.5 next. Repeat. That is the same as a drop of one eighth of a mg. Then 3.5 for the next month. Since I was asked to do that, tapering has been successful

[Gossiplady in reply to Nagswoman]

Hi Nagswoman! Thank you so much. That is so useful. I am on 1mg at present, tried 0.75mgs but couldn’t carry on, but body happy at 1mg. I am not in a rush to reduce, but have retained your advice in my PMR diary for the future.

[Satya70]

My rheumatologist told me this week not to struggle and suffer trying to taper to under 8 mg during the first year of PMR. He said that the PMR has to run its course which is extremely rarely less than 18 months and if I have a bad flare up it could set me back to the original decapacitating pain and the prednisone would work less well to control it.

He sounded like he knew what he was talking about (he’s the 5th rheumatologist I’ve seen because the first 4 seemed clueless).

I immediately gave up the struggle to get down to 7 from 7.5 and am happily taking 10 mg a day now. SO much less pain!

[PMRpro Ambassador in reply to Satya70]

Who is this paragon????? The truth will out - if only more understood!