steroids

[Vito5566]

Hi Guys & girls

Looking for advice

I’m on 20mg and due to reduce tomorrow by 1mg . Had a few painful flares this week which normal painkillers which seem to get me though. Question would you still reduce or wait another week . Thanks for any help

[DorsetLady PMRGCAuk volunteer]

Usual answer is not to reduce if you are having any issues….so stay at 20mg for at least another week.

But a bit more info about you would help… how long on 20mg? PMR or GCA or high? Starting dose? How long on steroids? Etc

[Vito5566 in reply to DorsetLady]

Hi Was told I had a frozen shoulder in January 2022 after 3 months of acute pain after third Covid jab in November 2021 . Given painkillers & done a fair bit of stretching & by end of February was 80% better feeling good. End of March got infection in elbow which affected my Bursa big swelling but also had severe pain in same shoulder again . Then quickly within a week both shoulders arms back & hip severe pain. Doctor said infection was the course put me on a ten day course of steroids 50 mg . Pain stopped within hours & was enjoying the affects . Ten days later I stopped & within a day or so severe pain everywhere. Blood test tbh looked good to me nothing looked high . Cut story down doctor said I had PMR . Was put on 30 mg two months ago & have got to 20mg . The last few weeks discovered some days I am totally fatigued can’t move and big loss of strength in arms . Some days energy levels are ok . Bending down doing gardening is difficult but can carry shopping. About all I can say sorry it’s long

[DorsetLady PMRGCAuk volunteer in reply to Vito5566]

Okay that’s fine….perhaps you should have a read through this post - explains about PMR etc…

healthunlocked.com/pmrgcauk...

Sounds as if you maybe be trying to continue life as normal, afraid that’s not possible , you have a serious illness, part of which is fatigue, so you do need to adjust lifestyle. The loss of strength in arms is quite usual in PMR.

Naproxen may help a little, but really the only truly reliever of OMR is the correct level of Pred…and it sounds as if 20mg is not doing that.

I might be inclined to try 22.5 or 25mg for a week or so and see if things improve, but you do need to discuss with doctor……

And just for info how did you reduce from 30mg to 20mg? If too quickly or too big a reduction that is probably where your flare started..guessing you were okay on 30mg,

[Vito5566 in reply to DorsetLady]

Hi Wow you worked me out . I was in denial as the steroids were working well & never really been I’ll so carried on . Last few weeks it’s really hit me. Tbh was feeling ok on 25 mg so your advice sound good . Thank you very much

[DorsetLady PMRGCAuk volunteer in reply to Vito5566]

Right,so suggest back to 25mg -get things sorted..then you may be able to drop to 22,5mg… then 20mg -but make sure you stay at each dose at least 3 weeks to make certain it’s okay before you drop again.If you stutter at 22.5mg then do smaller steps down, and from 20mg -1mg only.

[piglette]

Are you saying that general painkillers are helping the pain? Also when you say a few painful flares, are they PMR pain or general aches and pains?

[Vito5566 in reply to piglette]

Hi The last 10 days after a reasonable month I had shoulder pain in both and nagging back & hip . Been finding naproxen help for a few hours in the day as I was driving. As you know it can appear & disappear so quickly.

[piglette in reply to Vito5566]

It is the fact that Naproxen works that seemed odd. It is just that painkillers such as Naproxen normally hardly touch PMR. I was wondering if you had pain from something else as well as the PMR.

[Vito5566 in reply to piglette]

It worked for a few hours enough to drive without too much pain. Got home fancied a bit of gardening big mistake. Out of the last 7 days I taken them twice. Other days there was no need

[piglette in reply to Vito5566]

I am wondering if you have something else too that is affecting your joints perhaps.

[Vito5566 in reply to piglette]

Also suffer from pysdogout in knees which I take meds for

[piglette in reply to Vito5566]

Pseudogout is really painful. It is not helping that you are carrying on as normal. PMR is an illness and you need to respect that. Taking steroids may help the pain, but the illness does not just go away.

[Vito5566]

To be honest the first few months I was not sure I even had it . But the last few weeks my symptoms have me realise it’s real . You see I’m also a carer for my wife who very unwell so it’s a difficult one but I’m picking up info now thanks to this site . The only thing I will do is walk which I can manage as it helps the weight issue . Appreciate your reply

[PMRpro Ambassador]

All been said really - if naproxen helps I'd doubt it is directly due to PMR although myofascial pain syndrome would fit too and NSAIDs do help there a bit. And MPS is part and parcel of PMR for some patients - it can happen on its own too

asahq.org/madeforthismoment...

jrheum.org/content/46/12/1552

The second shows how the two are connected