Increase pred or give more time?

[EscapedtoWales]

Hi everyone

My PMR journey has been pretty good up until now. Did 6 weeks on 9mg and felt great and then reduced to 8mg. Within a week I started to get hip pain. I had a blood test and my ESR was 32 (my ESR was 16 on 2nd January). Rheumy advised to go back to 9mg. Been on 9mg for over a week and hip and shoulder are getting worse. Should I increase to 10mg or give more time on 9mg? Your advice would be welcome. Thank you.

[DorsetLady PMRGCAuk volunteer]

If it were me, I’d try 10mg. If it’s not improved after a week on 9mg, then I doubt staying at that dose any longer will do much good.

If the increase doesn’t work (which you would hope it would within a few days), then you’re going to have to contact Rheumy, or at least his office, and tell him so. No point letting it go on getting worse.

Once you do get stable, think seriously about your reductions - 0.5mg a time and if necessary a slow taper such as this - healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Hi, DorsetLady, same problem, had to increase Pred to 15mg after OP( pace maker) Over 5 weeks I have reduced by 1mg.Much snap sleeping, body sweat, pain under right Rib cage , balance is not so good at times ,feel right off (I am 83!) But it suddenly hit me, remembering the words of my learned fellow sufferers, Is this the effect of my Pred drop?

Your advice would be most appreciated - Ps I am trying to go swimming in the morn. Perhaps only 10 easy lengths but I feel so good in the water. John

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Hi John,

Could be Pred drop, but just as likely after effects of operation. Takes the body time to recover - and the older we get the longer it takes to do that. Fact of life unfortunately.

Glad you’re still managing to get your swimming in, but not too much though 😉

[Hidden in reply to DorsetLady]

Thank you DorsetLady, that helps to put matters into perspective.

OK re-swimming I take your advice ,but mind you I fancy a scuba dive at Durdle Door, It a nice day today,trouble is I cannot lift the weight belt or diving cylinder these days, 'O' to put the clock back 6 years!

[PMRpro Ambassador in reply to Hidden]

Take a grandchild???? They have uses ...

[EscapedtoWales in reply to DorsetLady]

Thank you DorsetLady - appreciate your advice.

[PMRpro Ambassador]

If it is getting worse - giving it more time will only let it get even more worse! If there is a bit of inflammation left over all that will happen is that the dripping tap will fill the bucket sooner or later.

[EscapedtoWales in reply to PMRpro]

Thanks PMRpro. I have increased today and see how I go. I will definitely taper more slowly once I have got settled again.

[EscapedtoWales in reply to PMRpro]

Hi PMRpro. Just had the most confusing conversation with rheumy. Increased 1 mg after pain came back dropping from 9mg to 8mg. Increased to 9mg for a week and no improvement and then increased to 10mg for a week and no improvement. Rang rheumy secretary to check if I should increase again and rheumy rang me back. She said where was my pain and I said groin, buttock and around hip bone on my left side. She said that this isn't polymyalgia because polymyalgia pain is at the top of the thighs and never on one side. Said I needed to see GP re: osteo artritis. I did explain to her that this is exactly the pain I had before I got diagnosed (started on left before having it on both sides) and the pain has always been in my groin, buttock and around hip bone and worse on my right. I also said I had an x-ray and arthritis was ruled out. To this she said just go back to 8mg and see how you go! She was in such a rush and my brain isn't working great so I didn't ask if she meant just drop from 10mg to 8mg (or do a taper) or at what point do I stop seeing 'how I go'. Maybe you don't have the answers to either of these questions. Just doing a quick Google check it seems my symptoms can be polymyalgia and that it can start on one side. I just don't know what to do - made an appointment to see my fav GP and that's not until 13th June.

[PMRpro Ambassador in reply to EscapedtoWales]

Sounds like bursitis to me - and that is part of PMR. It would tend to appear on one side first - where do they develop these ideas??

Hang onto the favourite GP appointment but in the meantime seek an emergency one and ask about trochanteric (outer aspect of hip) and iliopsoas (in the groin) bursitis. Mine gets dealt with with steroid injections usually.

[EscapedtoWales in reply to PMRpro]

Thank you so much for your prompt reply and advice. I have such little faith in the rheumy.

[4840]

I would go to 9 1/2 mg