Slowly slowly catchy monkey!!

[Welshnewbie]

Morning. I’m diagnosed since Sept. started on 40mg. Now at 5mg! And I listen really to my body as to when to drop down. I was on 6mg for ages and moving to 5mg seemed a step too far, so tried 5.5 and it worked. My GP nice but little knowledge so has referred me to a rhemotologist next week. Honestly I’ve learnt so much here in this site, am so grateful to all you regular folks!! My last bloods really good, CRP 4. But slowly slowly catchy monkey. I’ll drop now by .5 each time. Thanks to the person who explained about the ERP and the need for it to be at lab within 4 hours. Found out my bloods were way beyond that- so no wonder readings were all over the place !!

[SheffieldJane]

You are doing well with a nice positive, enquiring, attitude. It is early days and you have reduced your dose very quickly. The purpose of Prednisalone is to keep the painful, harmful, inflammation under control while the disease runs its course. It has no impact on the disease itself. Once you experience symptoms poking through, it means that the inflammation is building up again. The trick is not to allow this to get out of control and turn into a full blown flare. You may find yourself having to increase your dose. If you were diagnosed in September 2017, I am afraid that this is pretty inevitable. Blood tests are useful but unfortunately they do not reliably tell the whole story. Symptoms are a better indicator of the disease progression. Expect to be managing this for 2 years plus.

[Welshnewbie in reply to SheffieldJane]

I think I was put on a very high starting dose of 40mg but my GP told me to reduce weekly by 5mg. I think where he went wrong in this was when I dropped from 10 to 5mg. I did get symptoms and when back to 7mg over Xmas. That did the trick and now I’m reducing by .5mg. And it’s working so far so good. I just listen really and if I feel a hint things are not going right I up by .5 and it seems to work. I’m trying a taper every 2-3 weeks.. we will see. I’m remaining positive. I feel so young at 53 to have this. Plus having gone through a double hip replacement in under a year it’s like: come on universe!! Give me a break!!

[SheffieldJane in reply to Welshnewbie]

That all sounds sensible and who knows maybe younger sufferers get a smoother ride, apparently men do. Good luck! You really have had more than your fair share.

[PMRpro Ambassador in reply to SheffieldJane]

Sorry SJ - no correlation I'm afraid. I was a whole 51 when mine first appeared...

[SheffieldJane in reply to PMRpro]

Oh yes sorry, I had forgotten that.

That was rotten luck but we are grateful for you.

[Hidden]

Wow! Good on you... from 40 to 5 mg in five months!

[Welshnewbie in reply to Hidden]

Here’s hoping although it’s not over till the fat lady sings as they say!!

[Hidden in reply to Welshnewbie]

Ain't that the truth! I started on 60 mg in November, was down to 45 for a minute, then up 60, then up to 80 for 3 weeks... as of the other day, I'm down to 55mg!!!

I hear no singing.

[Sandy1947]

Amazing! Love to hear success story.

[Welshnewbie in reply to Sandy1947]

Well here’s hoping

[Hollyseden]

That is quick! Long may your success last. 👏

[Sandradsn]

Hello Welshnewbie,

I'm glad your nice GP with little knowledge has referred you to a rheumie,let us know how you get on. x

[Welshnewbie in reply to Sandradsn]

Will do - see what the experts say!

[PMRpro Ambassador]

I think being referred to a rheumy at this point is a bit late - and pointless if you have got down to 6mg since September!!! You really have done extremely well to date - so I hope a rheumy agrees and doesn't try to mess about with what you are doing because it is obviously right for you!

[Welshnewbie in reply to PMRpro]

I agree but am curious to see what a rheumy says.. I was lucky to be diagnosed super fast by a great Physio!

[PMRpro Ambassador in reply to Welshnewbie]

That may be the case - but PMR is not the disease and there are a range of causes of the symptoms. A physio would see the symptoms - but not necessarily identify the underlying cause.

[Welshnewbie in reply to PMRpro]

Understand.. it’s so complicated I appreciate.