No pmr?

[Zofitmogelijk]

Hello my almost 6000 Dear friends. I am confused once more. Under 4 Mg of Pred my arms and shoulders started to hurt again and the rheumy and the gp told me to go on Tapering since the Blood was oké 2 and 11. I feel like a person that is in the way and just do it. Without Pred now, and the pain in my shoulders is increasing, so I saw a manual therapist today. She listened to my story and treated my triggers points but the first thing she saisp

[SheffieldJane]

Your Rheumie can go and boil his head as they say in Scotland. You need more, the inflammation is poking through. You may even manage on 5 mgs and then stay there for a long time. At these levels Pred is relatively harmless. It is not you that is in the way it’s him!

Friend number 5999. Xx

[Zofitmogelijk in reply to SheffieldJane]

That is what people eat in Norway , boiled sheepshead!😄

[SheffieldJane in reply to Zofitmogelijk]

Yum! 😂

Well don’t eat your Rheumie but please, no more suffering unnecessarily. You are so nearly there all that’s needed is some patience and understanding on the part of your doctors.

[PMRpro Ambassador]

... the first thing she said was "PMR flaring"?

Do show them this:

medpagetoday.com/rheumatolo...

heavily underlining the bit that says

"The mean initial dosage of prednisone was 16.9 mg/day; at 1 year, the mean dosage was 5.9 mg/day. Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. At 10 years, however, at least 97% of patients reached a glucocorticoid dose of <5 mg for 6 months."

[Zofitmogelijk in reply to PMRpro]

I try replying now to all this way since the rest of my message is in Outer space now. The manual therapist advices DFM GRAPHICS and ED measurement would it be wise trying that? Have a Nice weekend with lots of sun , Aletta

[PMRpro Ambassador in reply to Zofitmogelijk]

Er - whatever THEY are!

I think this bit of your message is fighting outer space too...

[Zofitmogelijk in reply to PMRpro]

Thank you I try to find out what is the full name

[Zofitmogelijk in reply to PMRpro]

Good morning PMRpro and Thanks for your everlasting support Fyi , did Some googling and DFM means - diagnosegerät für functionelle Medizin - it is developped at uni Of Heidelburg. The more I think about it, the less I want to do that.

[PMRpro Ambassador in reply to Zofitmogelijk]

Having also googled it and read Dr Hollerbach's website (sorry folks, no point unless you read German) I think that while if it were offered me free as a trial I would have a go, in general I suspect it is a rather esoteric offer that assures the gentleman abovementioned a decent income.

[Zofitmogelijk in reply to PMRpro]

And dr med Lothar Hollerbach nowhere indicates prices as far as I can see

[PMRpro Ambassador in reply to Zofitmogelijk]

Now why does that not surprise me...

[Orchid47]

Hi Zofitmogelijk,

The same thing happened to me last November. I was on 4mg Predisone and my Rheumy told me to lower to 3mg.

As my left shoulder started to be painful I ignored the pain, then the right shoulder started to hurt I went up to 5mg Predisone,, then my neck was painful and as I didn 't increase again the Cordisone, things got worse

. So after a while I kept increasing the Predisone up to 12mg, but no immediate improvement. I took 2 weeks to be painless.

I believe that if I had increased immediately the Predisone, the pain would have vanished much quicker.

I managed to dropped again to 6mg Pred. and my ESR is 22 and my CRP under, 0.5mg.

So my advice is don 't wait, listen to your body and increase Predisone in time.

PMR is a Yoyo illness.

Got luck

Orchid47

[Zofitmogelijk in reply to Orchid47]

O Orchid, a horror story but Good you are on the way

Down again. What frightens me is the therapist saying ‘ your story does not sound like pmr and she is almost sure it is not. She advices alternative treatment and I don’t know what to do. Wanted to buy New specs but specsavers advised maybe an cataract operation . So what is wisdomthank you for the respondense, aletta

[PMRpro Ambassador in reply to Zofitmogelijk]

Much as I value alternative treatments as an add-on - PMR does not respond to any alternative options alone. Use the alternatives to help reduce the amount of pred you need. Of course she is suggesting alternatives - that's how she makes a living...

[Celtic PMRGCAuk volunteer]

Oh dear, it’s a bit soul-destroying when neither your rheumy nor GP seem to have any understanding of the wiles of PMR so that their patient is left floundering and in pain. What you are experiencing is so very likely to be flaring inflammation especially given that you have reduced down as far as “under 4mg” in just a year or so. Be careful having any of the manual techniques of a physiotherapist, just gentle massage/heat treatment/ultrasound is quite enough whilst those muscles are inflamed. Increasing that steroid dose is the way to go to get that inflammation under control. I hope things improve soon.

[Zofitmogelijk in reply to Celtic]

Thank you Dear Celtic for your Good advice.

[Celtic PMRGCAuk volunteer in reply to Zofitmogelijk]

You’re welcome,Zofitmogelijk - just hope it works for you.