Am i getting anything from 2mg pred or is it just reassurance ?

[Mofred]

hi i was diagnosed with pmr in jan of 2021 . Initially put on 30 mg of pred but managed to reduce over a short time to 10 and then took it very slowly at about 0.5 mg a month with mild symptoms . I am now on 2 mg and experience mild pain and discomfort and stiffness after sitting for a while or after driving if its for longer than 20 mins at a time because of lifting legs on and off pedals i dont need to drive far . I can walk a long way with no trouble and have started rambling again but going up stairs or on a slope my thighs do ache and lifting my legs more than usual cause them to ache but only then. I also have twinges in my lower back if standing for a while . gp rang me months ago just to see how i was and i had blood test but as heard nothing i assume inflammation is very low . It is not really affecting my life and many of my friends with arthritis cant do what i do but as i still have mild symptoms i dont know whether to reduce more or leave it for a while . i am very much troubled by jumping legs (not restless legs) when sitting at night time or in bed but this predates the pmr and I am on citalopram so maybe it is that . it is very wearing but have got used to it for the most part . I think I am lucky compared with many but just uncertain about reducing pred anymore .

[PMRpro Ambassador]

Even 1/2mg can be the difference between being fine and not over a longer period! I'd suggest that actually you are barely coping on 2mg. If there is even a small amount of unmanaged inflammation left at the end of each dose of pred, over time it will build up like a dripping tap will fill a bucket and overflow, however slowly it is dripping. Many doctors think low doses of pred are doing nothing and quite a few patients have been persuaded to stop the 1mg pred that was keeping them really well. A few months later they are struggling with PMR symptoms. Prof Dasgupta told us a couple of years ago that he often keeps patients on 2-3mg longer term as it reduces the risk of relapses. I think that is a bit high for many patients and they could get to 1mg or even 1/2mg and be fine.

2mg of pred is also plenty as a supplement for adrenal function - so you still need to reduce that last couple of mg very slowly for safety there.

Have you ever tried magnesium supplements for the restless legs? I was looking something up about magnesium the other day and it mentioned that for some people it calms RLS. Anything is worth the try.

[DorsetLady PMRGCAuk volunteer]

Hi

Leg pains are mentioned as side effect of citalopram, so some may be due to that, but would also say perhaps you have gone a bit too low on your Pred for your PMR ….

18months is very quick to have got to 2mg. Certainly don’t reduce any more, and maybe an increase for a couple of weeks would give you the answer if it is PMR related. Have to say if you have been reducing with symptoms, certainly sounds like it.

You are not reducing come what may to zero, you are trying to find the lowest dose that gives you same relief as the initial dose did, my guess is you’ve gone below that.

Perhaps try 5mg for a couple of weeks, and see what happens…if no difference then probably not PMR…if there is a difference you have your answer.

Wouldn’t do any harm to chase GP for blood results, just for your interest, if nothing else. But if it was months ago, things may well have changed since then, so another test might be in order.

[123-go]

Hi, Mofred. If I'd experienced mild pain, discomfort and stiffness, aching thighs and twinges on 2mg Pred I'd definitely be thinking that I needed a bit more. So, I feel that your apprehension regarding reducing is justified and it's good that you're giving this some thought. I'm a fan of the "dripping tap" analogy: it makes sense, doesn't it?

I also agree with DL in that 5g Pred for a couple of weeks will confirm whether or not PMR symptoms.

[Lyndaki]

Magnesium certainly helps restless legs & cramp! I ran out a while ago & cramping started almost straight away…& disappeared once I’d restarted taking the tablets!

[Golden20]

Hi there, I’d listen to the comments from PMR Pro and others. I found tapering by 1/2 mg suited me much better than by 1 mg. My rheumatologist was convinced 1/2 mg would make no difference. It works for me so far! I’m on 3mg and will drop by 1/2mg when my body is ready. Sounds like you’re struggling on 2mg. Listen to your body, don’t force anything. I think you’ve done amazingly well. Good luck.

[Mofred]

thank you all for your advice and encouragement . It helps so much . I think I will increase it a bit and see how I go . I will also invest in magnesium for the legs . Thankyou all again and enjoy the holiday .