Bruceaddy123

[Bruceaddy124]

Hello I havent written before but I have had pmr for two & half years and on 5mg for 9 months , but now I am experiencing weak legs in my knees and thighs & very flaky. Any ideas please . I have been well up to now.

[DorsetLady PMRGCAuk volunteer]

Why have you been on 5mg for 9 months? Your weakness may be steroid induced myopathy.

A bit more information about yourself and your treatment etc might help us answer your question more fully.

[Bruceaddy124 in reply to DorsetLady]

I have been trying to get down down but every time I do it I get symptom back . So that’s why am still on 5mg I have been well till now.

[DorsetLady PMRGCAuk volunteer in reply to Bruceaddy124]

Ok thanks, but is a long time to be stuck at one dose. But it may just be it’s what you need at the moment.

If you feel okay then 5mg is a reasonable dose to be on, but you might like to try reducing by just 0.5mg a time and using one of the slow tapering plans?

This is just one - but there are others -

healthunlocked.com/pmrgcauk...

Have you spoken to GP or Rheumy if you have one about your problem in reducing? Or is your main concern the weak legs etc?

[PMRpro Ambassador in reply to DorsetLady]

I've been stuck at a dose for much longer than that! If it is the dose you need to manage the PMR that is where you stick.

Rod Hughes likes to keep patients at 5mg for up to 9 months anyway - makes the rest and the return of adrenal function seem to go better.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I appreciate you have been at that level for long periods.....but you are unique!!

[PMRpro Ambassador in reply to DorsetLady]

I got stuck at higher doses! When I got there and tried to go down from 5mg it was fatigue that was the main problem. And then a flare. But no - getting stuck in the 7 to 5mg realm is pretty common. Not so surprising really - if the PMR is still active you'd hope a lowish dose would be enough as a maintenance dose.

[PMRpro Ambassador]

After so long on 5mg, which is a low dose and shouldn't suddenly cause steroid myopathy, it might well be an idea to get your GP to check you out for other things and also to do a synacthen test to check your adrenal function.

[Hidden]

Hi,I have been at 6mg for at least 10mths now. I tried 5mg a few times but it didn't work for me so stayed at 6mg. Rheumy said a lot of people he sees find 6mg as low as they can get for a while. Perhaps you do need to get adrenals checked or checked for anemia. Were you doing more exercise at a higher dose? Perhaps you need to build up the stamina and strength really slow but effectively. Get Dr to refer to a physio to get some stretches and tips for best exercise.

[Noosat in reply to Hidden]

Dear Poppadoop, how active are you on 6mg? I am at that level now, find my legs are very weak and tired. I was dong better, but began really pushing myself to walk further every day, using lots of will power. Then collapsed with gastric ulcer, which is OK now. However, I feel very hesitant and cautious about "pushing" myself.

[PMRpro Ambassador in reply to Noosat]

No pushing - build up what you can do SLOWLY.

Start with what you can manage well with no pay-back next day - have a rest day to be sure. Then add a couple minutes - really, I'm serious :). Remember, how ever long you walk out from home you have the same back unless you can get the bus so choose somewhere convenient where you can bale out if necessary or have a long rest. Then have a rest day - if it is fine add another couple of minutes, one minute out will give you that, there is one more minute back!. Keep doing that, always a rest day to check and add a tiny bit until you get to a day where you feel that yesterday might have been your limit. Then don't add time. Stick to that distance/time for a couple of weeks. That will have a training effect too - then start adding time again if you want or concentrate on speed if you feel it is far enough already. It helps if you can choose a route with some slopes up and down - nothing too strenuous at this stage though.

On the rest day you needn't do nothing - find an activty that uses different muscles if you like. But never push yourself too hard - with PMR you will just end up tuckered and your muscles will be unhappy and let you know you asked them to do too much. That will come later - but now your muscles are still being affected by the autoimmune part of PMR and can't respond the same way to being asked to do more.

[Noosat in reply to PMRpro]

Thanks for reply. I know that I have set myself back from what I wanted to achieve by my own compulsive behavior. At this late age I have had to face the fact that in my life I have been a high achiever, (one with little patience concerning herself) who thought she could push her way to any goal, be sheer effort and will power. It is not comfortable to look at these short comings, but necessary that I do so, if I want to improve my health. Thanks again, I need that steady voce telling me to slow down.

[PMRpro Ambassador in reply to Noosat]

I'd say the same to a 50+ year old in the same situation. It's how I got from staggering 200 yards to the village square and back on crutches to managing the entire circular walk beyond the village. in about the same amount of time!!

[Hidden in reply to Noosat]

If I push myself my body protests. And it varies a lot energywise too. I work an on/ off day system so always build rest...just as important as exercise. I work on the basis that I take the dog to the river or dam where there are places to sit. As soon as my legs start doing a little tremble I head for a seat. Once it's all calm I ascertain if I feel well enough to go forward to the next seat or back towards the car seat. I have a rule that if I feel like I am telling my legs to move then I go to the car. The next day I stay at home just pottering.

The problem is that any little thing can knock you off. I had a tummy bug and ankle injury a few weeks ago which have literally knocked me off my feet. I have had a couple of short strolls that are very short. And to be honest sit on the bench for an hour while the dog played then I struggled back to the car. So my energy is low at the moment while I recover. I did try a 1mg increase that didn't make enough difference to stay there but I am 3yrs in so think I am waiting for adrenals to start to wake up.

[Blearyeyed]

How have your activity levels been affected over the last eighteen months?

If you have been stuck , or yoyoing close to , a dose of 5 mg for nine months without experiencing other non PMR related pain , like throbbing , pins and needles , numbness and nausea , especially in the lower arms , legs and head/ neck steroid myopathy sounds less likely ( but keep an eye on your symptoms) however, something else could be hindering your progress.

You could have hit the Adrenal Plateau ( when the steroids are not doing as much of the extra work of your Adrenal system but the Adrenals haven't kicked back into functioning again) or may not totally being over the original PMR condition too.

The Adrenal issues at low doses certainly do seem to add to the increase in feeling of Fatigue , and the lower doses of Pred stop masking other non PMR nerve and muscle pain that could have begun to grow because you could not be as active as you once were ( or you had other non PMR muscle pain issues that had not been diagnosed before ) .

If the pain you have been suffering is in your knees and thighs this sounds very likely.

If your exercise or physical activities decrease , as they usually do with GCA or PMR , along with long term steroid use , your muscle structure , strength and tone does decrease during treatment and eventually you get to a point that you feel more pain and weakness when you use your body.

The Fatigue also makes it hard to keep up the activity you need to help these issues , even if you want to try to increase the exercise to help stretch the muscles.

Try taking a good vitamin and mineral supplement containing magnesium , zinc and Vits A, D, E, K this helps improve alot of nerve and muscle function and Fatigue.

See if taking some paracetamol helps this pain , sometimes we put all of our pain down to PMR and expect that we need Pred to improve it , when nerve / muscle pain can improve without a prescription increase and just a standard painkiller.

Try and keep mobile , even when the Fatigue feels like moving through cold porridge just a few minutes moving about each hour helps .

Exercise built up over time does help improve pain symptoms , gradually building up gentle exercises for the legs / arms / core and improving the strength in the muscles around your joints will reduce the pain in them and improve the Fatigue .

Simple joint rotation exercises at home in the chair , keeping up the walking to a level that you can cope with , swimming or walking in the pool builds muscle without putting more pressure on the joints , or try Tai Chi .

Build slowly though don't expect to do alot straight off , or if you take a class you don't do the full session and have regular rests during it.

Keep pacing your day with lots of rests between activities while you try to get over that Adrenal low it helps reduce the impact of Fatigue.

Lots of fluids and a nutrient / protein rich diet ( try smaller meals and snacks during the day to stop the lull of energy after a big meal) .

Try massaging your joints with warm but not hot water while in the shower by taking down the shower head and rotating it close to the joints this can ease the stiffness aches and pains.

If none of that works though getting some extra tests done may help to establish what steps to take next.

Hope that helps , good luck xx

[Bruceaddy124]

Thank you for all your tips