I am,SO disappointed

[pmrdec112014]

I have followed the DSNS method and got to 2 mgs on 6 days of the week. ( It has only taken me 10 years next month to get to here)However some months ago probably when on 4mgs I started getting issues with neck and thought it was the pillows( Dur!) so spent a fortune on several different ones with little noticeable difference.

Then issues in right shoulder and then both.

Then the hips until very slowly I was heading to the same pain/ stiffness getting up from chair, out of car, generally moving that occured 10 years ago.

It has been slow dawning on me, as for many months I had convinced myself that the PMR had gone, burnt itself out but this is one mega flare.

I have started taking 7mgs since Tuesday and now all the stiffness and pain has gone.

My basal cortisol had just gone up from 48 to 157 over the past few months as I had reduced steroids but now I expect it will go down again and the awful fatigue will be as bad as ever.

Will this wretched illness ever go??

Currently despairing.

[DorsetLady PMRGCAuk volunteer]

It is very disappointing... but if you need 7mg then you need 7mg. All you can do is hang in there, and take enough Pred to give you some quality of life. 🌸

[pmrdec112014 in reply to DorsetLady]

Thanks Dorset Lady.I have been on 7 since Tues. Should I stay on for 2 weeks? Then reduce by what??

I have tried finding the lost regarding this to no avail but it will be my fault as I struggle filtering through due to other issues.

Thanks in advance.

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

If you are thinking about the flare advice its here -

healthunlocked.com/pmrgcauk...

But I wouldn't be dropping down too low again. Maybe in a couple of steps to 5mg for a couple of weeks and then to 3mg - and stay there for a least a month before you even contemplate reducing again.

Just for info, you can extend the DSNS [or any slow taper] by repeating each stage once, twice or as many times as you need.

[pmrdec112014 in reply to DorsetLady]

Ah yes that's what I remember reading before! Thank you. Will do that. I have tried so many time to get lower than 5. May be that is just what I have to accept full stop.

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

Many do… if you have that type of PMR, you have it. As we know it’s doesn’t always conform to what the doctors would like. If 5mg is good for you, then stay with it … and see what happens in the future.

[Tappo in reply to DorsetLady]

What is DSNS please?

[DorsetLady PMRGCAuk volunteer in reply to Tappo]

Dead Slow and Nearly Stop - one of the slow tapering plans -

healthunlocked.com/pmrgcauk...

[Tappo in reply to DorsetLady]

Thank you very much.

[pmrdec112014]

Thank you Dorset Lady

[Twopies]

it’s a struggle, isn’t it? My doc who says pmr lasts 1-2 years is the one despairing. I’m trying to get to 3 1/2 but as more and more body parts keep going south, club zero is looking mighty elusive. Some say 3 1/2 isn’t bad but I have all the attendant woes of long term steroid use (plus those waning body parts). Hang in there…I like the idea of repeating each step 2-3 times if needed. My best to you!

[pmrdec112014 in reply to Twopies]

Yes it sure is! My gp bless him told me 2 years too!! He did have other PMR patients so did have some experience/ knowledge.So of course that is what I got into my head and now almost 10 years later it is so soul destroying constantly aware of the damage the the effects of the steroids are doing but equally no quality of life with out them.

I try to stay hopeful that I will be rid but I fear it's less likely as the years go by.

Yes will try the repeat x 3 next time.

I return your good wishes for you too.

[Hidden]

I can sense the despair in your words and I offer you my gentle sympathies. I am new to all this and the medics can't even agree if I do or do not have PMR. But I was started on Pred and now have the tedious task of reducing the dose.I am sorry to read if your struggles but you at least have this group to help. All the very best as you go forward.

[pmrdec112014 in reply to Hidden]

Yes this group has been a lifeline, where almost all of my PMR knowledge has been learnt and the emotional support invaluable for sure.

[Nextoneplease]

Oh I feel for you pmrdec 😟

I am coming up to nearly four years of PMR and have struggled to get to 6.5/6 mg. I have three friends who also had it around the same time. The two guys were off pred within two years, and the woman has been re diagnosed with RA. Not great for her, but with medication she has no pain- and gets a lot of sympathy.

I really feel your frustration that this PMR seems endless for some, and under recognised by many in the uk at least.

I’ve been learning French online to try to distract myself. So….’gardez le moral’ as the French would say, or keep your spirits up 🧘‍♀️Hugs 🤗x

[Lopera in reply to Nextoneplease]

It's Spanish for me, so 'animo'! 💃

[Nextoneplease in reply to Lopera]

Oh I like that Lopera! Actually I’m wondering whether to include a bit of Spanish in my studies- it seems a very expressive language 😊

[Lopera in reply to Nextoneplease]

Not quite as nuanced as English to be honest but having studied French, German and Latin at school, it's definitely the hardest!

[Nextoneplease in reply to Lopera]

The hardest! Oh no..! I did French, German and Latin at school too so maybe Italian might be easier? (Although I do like a challenge 🤔) x

[pmrdec112014]

I feel from what I have read before that men seem to fair better with PMR? Credit to you for learning French!!

And thank you for your thoughts.

I hope your PMR journey resolves much much quicker.

Best wishes.

[MiniSpec in reply to pmrdec112014]

You said, "men seem to fair better with PMR", to which I must say, 'Really?' I'm a 74 yr old man, and I've had PMR for 15 years now, and been on Pred for 14 of them, and for the last few years I've been fairly steady on 4mgs per day.

However, at the behest of a rheumie I reduced to 3mgs in May/June last year. At first all seemed OK, but as time went on I gradually went downhill, and by August this year found myself almost housebound with pain and fatigue. So I went back up to 4mgs again, and now I'm back to how I was in April last year.

I'll probably be on Pred now for the rest of my life, but as long as I can function I'm happy. I don't seem to suffer from many of the side-effects, apart from tinnitus, and I learned to live with that 14 years ago, so all in all, Pred has been a lifesaver for me and my QOL.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

You said, "men seem to fair better with PMR", to which I must say, 'Really?'

Like most generalisations, there are always exceptions..but opinion within PMR circles does agree with that view. Could be that less males also get the disease, so not enough research/information to disprove that theory.

[pmrdec112014 in reply to MiniSpec]

Hi MiniSpec.I am so sorry that you have had such a difficult and long time of PMR.

I do still say you are an exception to the rule from what I have read and learnt about PMR so far.

As Dorset Lady says maybe not enough actual data to confirm otherwise.

I feel like you though I have tried getting lower than 5 and just have to accept this is the limit for me.

Best wishes though. And there is always hope I guess.

[Zebedee44]

I totally understand your frustration and feel I am in the same boat, struggling to get to 3mg after eight years. Earlier this year I began to think the PMR was in remission and that I only had to slowly negotiate the lower doses while my adrenal glands recovered. A synacthen test confirmed that my adrenal glands could work again when challenged which I found reassuring but the return of pain in my shoulders was hugely disappointing. The horizon seems to have moved further away!

[pmrdec112014]

I recognise your name from years ago! Yes very similar sounding journeys I would say! I know I am not alone in the length of time the PMR is taking to burn out but it does seem endless and lonely sometimes!

I am staying on 7 for another week or so and then will drop slowish back to 5 and stay there for the foreseeable future.

We will keep hoping eh!

Best wishes

[Griggser]

I feel your pain, pun intended, as I’ve never got below 9mg in the last ten years. I’ve had two depo-medrone injections in the last 6 months and using the DSNS I have reduced to 7.5mg but the pain and stiffness is not good and although I hate to admit it to myself I really think I need to up the steroids but I’m not sure what to! I hate the side affects of the steroids but constant pain and stiffness affects the things I can or would like to do. I’m also dealing with post herpetic neuralgia (nerve damage) along with a really painful neck. I keep thinking if I tough it out my body will get used to the lower dose but I’m only kidding myself.

[pmrdec112014]

I can not stand that PMR pain it just drags me down.Like Dorset Lady said, if you need it you need it.

I worry so much about the effects of the steroids but having no quality of life on a lesser dose is pointless.

Take the dose that you need. Life is hard enough with out pain too.

Best wishes.