Tappering Down

[Brears]

Hi Was Dignosed with PMR 30 months ago managed to taper down to 1 mg Daily recently.Still suffering with joint pain.Will I ever get better my wish is to stop Steriods.Seems impossible also taking codeine.

[DorsetLady PMRGCAuk volunteer]

Not as simple as that …PMR is a self limiting disease- comes when it wants, hangs around for a while (or longer) and goes when it wants…not when the patient wants nor when the doctor thinks.

After 30months yours is still ‘there’ and likely to be for some time, so rather than take codeine you’d be better taking more Pred and get things back under control..codeine will do nothing for the inflammation caused by the PMR which is what is causing the pain.

Might help you to read this - then you’ll better understand your illness - and can manage it more successfully-

healthunlocked.com/pmrgcauk...

..and maybe ditch the codeine, and allow the Pred at a high enough dose to get things back under control…5mg might do the trick, then if it does you may be able to drop back down to 3 or 2.5mg and restart tapering -0.5mg a time….

[Brears in reply to DorsetLady]

Thank you for your advise which I will follow doctors tell you nothing and it often gets you down suffering with pain I’ve also been given liquid morphine which again does nothing

[DorsetLady PMRGCAuk volunteer in reply to Brears]

No it wouldn’t - unfortunately sounds as if your doctors know very little about PMR if they think it does, Please keep us informed on how things go with the increase -and please let your doctors know your situation.

[Brears in reply to DorsetLady]

Will keep you updated I am following your advise which I’m so grateful for.Had hip bursitis which is extremely painful.I had no idea that codeine and liquid morphine wouldn’t ease the pain.Joints feel very sore and tender.

[DorsetLady PMRGCAuk volunteer in reply to Brears]

They won’t help PMR , but they may help the bursitis…,don’t know, never had it.

[PMRpro Ambassador in reply to DorsetLady]

Not really in my experience - needs to have an antiinflammatory component, none of them do. GP (rheumy trained) says the same,

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thought that the case, but didn’t want to say as no experience.

[PMRpro Ambassador in reply to DorsetLady]

Lucky you!!!!

[PMRpro Ambassador]

Really nothing to add to what DorsetLady has explained. A couple of mg pred is probably far less of a longterm problem than codeine and liquid morphine. I have some "add-on" problems, low back and hip bursitis mostly, and have found that a mix of tramadol, paracetamol and ibuprofen at low doses once a day works well for them, Does nothing for PMR pain though.

But you say joint pain - that isn't often PMR-related. Or do you mean the soft tissue around the joints?

[HeronNS]

I have learned, the hard way, that I need a very small dose of pred. I did actually get down to zero a couple of years ago, but within a few weeks was back on pred. At that time about 2 mg was enough. Since then have had a major flare (that was last year) and now every time I try to taper to 2.5 from 3 pain recurs, despite using very slow taper method. It is what it is, and at least this small dose has no discernible adverse side effects. So, don't be afraid to stay at a very low dose for some time once you have things under control again. I think at some point it becomes possible to taper again, so worth trying, cautiously, every once in a while. Good Luck! 🍀

[Brears in reply to HeronNS]

Thanks for your advise recently when I saw a specialist she told me PMR had left my body and I needed physio.Since tappering down the stiffness in my shoulder blades and upper arms has worsened,Spoke with Doctor who told me to take 1 mg every day, I've lost a lot of the weight I put on when on 15 mg appetite seems to have changed.Constantly worried it's something more serious.I am grateful for all replies sorry for the long post just getting very anxious.

[HeronNS in reply to Brears]

Is the 1 mg enough? And no need to apologise for length of posts and replies. We say what we need to. I ramble on....

I also lost a lot of weight, both before diagnosis and then partway through the subsequent years. It was the discovery how much weight I'd Iost which finally got me to insist on seeing a new doctor (who diagnosed me) as I thought I was dying and previous doctor had been somewhat less than helpful. I didn't put on weight at the beginning of pred because I was very strict with my diet and aso feeling well enough to do a lot of walking and other exercise. However since my inflammation markers appear (finally) to be down to a normal, healthy level, I have packed on a little and hope no more because all my new(ish) clothes will stop fitting and that would be a shame. 🤣

[PMRpro Ambassador in reply to Brears]

There is no way she can KNOW it has gone - only you getting to zero pred for 6 months plus and no return of symptoms. THEN it has gone. As long as you are on some pred there is no way to know, Even 1/2mg can be enough to mop up the inflammation from very low disease activity - but no pred allows the dripping tap of inflammation to eventually fill the bucket and it overflows. You need a heavy duty mop then.

[Brears in reply to PMRpro]

I’m currently on 1 mg daily but going to increase it to 2 mg hoping it eases the symptoms.Reading and learning everyone’s advise has helped such a lot.