First Post

[BethandHoney2017]

Hello. I don't have an actual question. I only found this site very recently and the timing has been perfect. I felt it was right to share not just keep reading and taking the support I have found.

My PMR symptoms started in August 2017. I was 58. A very scary and painful time. I live on my own and that was not easy. I started on 15mg of prednisolone in December 2017.

I have been steadily tapering since then and doing ok until recently. I have been on 3mg since February. I did try to reduce to 2mg but that was not possible. Since trying that I have been suffering with the usual morning neck pain and stiff hips and knees. Plus the grinding fatigue.

The one thing that struck me so much from the posts I have read is that the Pred is just helping with the inflammation. The PMR is still present. I knew that but somehow had not really acknowledged it openly. Denial I suppose.

While the Pred was working well I carried on as normal just taking a few days to settle when reducing dosage.

I have lost weight but in a controlled way which I am pleased about. I am trying to exercise regularly. But probably can overdo things just trying to be normal.

I suppose now I am still doing that but the Pred is not as effective at this dose. Like all of us I just want to be at the end of my journey.

I have been feeling very low but am taking heart from what I have read and trying to be accepting that my journey won't be 12 months as the rheumatologist I saw initially said it.

My GP has been very supportive and leaves me to take my own pace. I am the one pushing not her.

I am due my regular blood test today and my review with GP next Monday. I think that I may discuss going back up with her.

Thank you all. I am so glad I have found you. It is difficult for people to understand the nature of this illness as outwardly there is little to see. People just think oh dear she is not walking well must be stiff and maybe needs more exercise!

[Hidden]

Hello BethandHoney

Welcome after all this time & a great name 🌷

The thing is we are not relentlessly reducing to Zero but to get to a low a dose as possible, l think you may have overshot the mark.

Have you been reducing by 1mg? As really now it’s too big a percentage of the actual dose you are on, many Rheumatologist (& Us) recommend 0.5mg drops using a slow taper, so perhaps discuss this with your GP next week.

Also exercise is good but don’t over do it, what ever you think you can or should do pull it back by 10% never exercise until it hurts.

I’m pleased you’ve written & don’t be a stranger, it’s good to share with people who understand.

Kind Regards

MrsN 🌷

[BethandHoney2017 in reply to Hidden]

Thank you MrsN

Yes my girls have been supportive in that distant way of cats 😂

I have been reducing b y 1mg.

My doctor had talked about 0.5mg and it was on our agenda to discuss but for going down. Now I am thinking going back up slightly may be the way forward.

I feel better in myself now I am truly part of such a supportive community

Best regards

Mary

[Hidden in reply to BethandHoney2017]

Going back up to where you were comfortable Mary is a good idea & think seriously about using 0.5mg drops it does make a difference.

Take Care & keep in touch 🌷

MrsN 🌷

[Hidden]

Hi Mary, welcome. I was lurking for a long while before I posted. It's a good way to get a sense of what's going on.

I agree with you (and mrsN), perhaps going back by a mg or 2 you may feel better. I almost always had to do 0.5mg drops and I have been at 6mg for a year (DX June 2016). I am hoping that slow slow taper helps adrenals. I never see the point of suffering more than necessary! I am sure that when they purr you get your oxytocin blast!😺

[BethandHoney2017 in reply to Hidden]

Thank you Poopadoop

[DorsetLady PMRGCAuk volunteer]

Hi,

I would say that at less than 2 years in, you are very fortunate to have got as low as you have - but that you are now below the level you need to control the inflammation on a daily basis.

Good idea to increase - maybe to 5mg and then reduce by only 0.5mg at a time. Your doctor is correct in her thinking on that! In fact she seems more sensible than the Rheumy - 12 months indeed! For many a considerably lot longer.

The fatigue is more than likely due to sluggish adrenals - so to help them you need to reduce slowly - so two reasons not to rush!

[BethandHoney2017 in reply to DorsetLady]

Thank you DorsetLady

[powerwalk]

Welcome. "Tryin to be normal" - yes I get that. Good luck with your gp visit. It's good she is supportive.

[cranberryt]

welcome! glad you found us!

[HeronNS]

Welcome. And just to let you know, you won't be alone hanging around at a low dose for a long time. Like you I had a reasonably unremarkable taper down to about 2, but efforts to go lower sent me back to a higher dose for a brief time and then months and months at 2.5. I started pred 15 mg June 2015. Since the autumn of 2016 I've been very low in dose, but only now, three years on, does my latest attempt to get lower appear to be working. Still not sure if I'll get there, but so far so good. At 1.5 mg tapering to 1. Taking approximately three months to taper each .5 mg now!

[BethandHoney2017 in reply to HeronNS]

Oh thank you. Since my post I feel much better in knowing I’m not alone. Just woke up from a nap 😂

[PMRpro Ambassador]

Welcome! Sorry I'm late - just got back from 3 weeks of travelling 2880 miles from Italy to Scotland and back!!

Unfortunately the PMR journey may be a lot longer than anyone medical may have suggested! Mine is still ongoing after 15 years! Two years is very early days - IRO a third of patients are able to stop pred after 2 years, 40% are still on a low dose of pred at 10 years.

Like the others I suspect 5mg might be a good move and then try 0.5mg drops once you are as well as you can get.

[BethandHoney2017 in reply to PMRpro]

Thank you. I will see my GP for blood results and then discuss increasing dosage. I know she will support my decision but nice to discuss with her. It is so helpful knowing the reality from those that are living it.

That sounds a great trip. Hope you had a lovely time. I assume holiday

[PMRpro Ambassador in reply to BethandHoney2017]

Visiting family - not really a holiday Need a holiday now though!!!!