So let me clarify

[Musiclady18]

I am currently on 10 mg of prednisone.....for 2 weeks. Started prednisone back in December made it down to 2.5 mg and then wham the pain. Dr. had me go up to 4 mg. pain again, then up to 10 mg. and that's where I am. So if I still have pain in my wrists, fingers, elbows and shoulders, primarily upper body pain. If I am still experiencing pain should my dose of prednisone be higher????

Thank you to so many who have replied your "expertise" is so valuable to me, I am still trying to figure all of this PMR out???

Also I did say I am going for a second opinion because the rheumy said I have PMR based on the Triage doctors word, yes I have had blood tests and the rheumy says my blood work is great but when i read the blood work it shows red flags stating my inflammation is high????? Yet he tells me all is well, then I tell him how I am feeling and he says carry on????? I also mentioned that I was teaching and how busy my day is how the prednisone was affecting me and he said he has construction workers on prednisone ????

[PMRpro Ambassador]

Have you not ditched that rheumy yet? If the markers are high - the dose is not high enough. If you have symptoms, your dose is not high enough. I'm sure he may have construction workers on pred - what has THAT got to do with the price of butter? Laying bricks isn't quite the same mentally speaking as teaching music...

If you started pred in December and got to 2.5mg by now, no wonder you have a flare! Doesn't matter what dose you started on - you haven't been on enough pred at any point probably.

This is a far more reasonable approach to managing PMR with pred - and I still think it is fast!!

rcpe.ac.uk/sites/default/fi...

I can't emphasise this enough: you have a serious systemic illness. I KNOW you believe you need to work for whatever reason - but it is not helping you recover and get this thing under wraps. Even a short time of sick leave may be the difference between managing to continue working and not in the long term. This isn't a short-lived illness, you are in this for the long haul. How long is impossible to say but only some 60% of patients get off pred in 10 years although they do get to a very low dose of pred by then. No, I know that isn't what you want to hear - but obviously you need to hear it.

The median duration of pred management for PMR is 5.9 years and I'd say a large proportion of people take 4 to 5 years to get off pred. That doesn't mean PMR lasts that long - there is a period of tapering at the end involved for many which you can't put a figure on.

[lemarie1 in reply to PMRpro]

Hello. I am on Pred but see a Rheumy for the first time tomorrow. I am very surprised as I look on this site that so many people have been on pred for such long periods of time. When you look at Medscape it says the duration is usually;

"Approximately 50-75% of patients can discontinue corticosteroid therapy after 2 years of treatment. However, some patients may require low doses of corticosteroids for several years. In a population-based study from the United Kingdom, the median duration of continuous corticosteroid treatment was 15.8 months, but around 25% of patients received more than 4 years in total of corticosteroid therapy. [16] "

Are they wrong? Are they just giving us a pipedream?

[PMRpro Ambassador in reply to lemarie1]

The study they mention is quite old and if I remember rightly very small. A more up-to-date study found the median duration of pred management was 5.9 years - from my experiences over the last 10+ years with the charity a far more realistic figure,

medpagetoday.org/rheumatolo...

It has been said for a long time that patients who get off pred in under 18 months to 2 years are at a far higher risk of relapse - probably because they were rushed off at a quiescent period of the PMR and then it ramped up again. Also many rheumies discharge their patients to the care of GPs and don't see the "failures". And both specialists and GPs who know no better tell patients that if they still have problems it is not the PMR, it is old age. I developed PMR at 51, fit and at the gym several days a week - and my GP insisted it must be my age because I had stubbornly normal blood markers for inflammation. Otherwise I was textbook.

We have asked doctors why they persist in this 2 year story - and many admit it is because they are afraid of upsetting new patients with such a long and uncertain future. But it is we on the forums and in the charity who have to pick up the pieces when patients arrive in tears because they think they have failed, unable to get off pred as their doctors say is possible and left in pain and disabled because of these unrealistic expectations.

[SheffieldJane]

Your Rheumatologist sounds like a bit of a berk or worse totally lacking in empathy. I could write an essay on his construction worker comment but I won’t. Really, he is doing you no good. You need a partnership with a doctor who trusts you and “ gets” this condition. I think you need 5 mgs more until your symptoms settle and then a very slow taper. Well done for staying in work. Is there any scope for reducing hours or some duties? You are entitled to reasonable adjustments under the Equalities Act.

Sorry, prompted by PMRPro, I have realised that you might be from the US. Your “Americans with Disabilities Act” seems to require employers to make accommodations for people with disabilities too.

[PMRpro Ambassador in reply to SheffieldJane]

In the UK - not sure about the USA.

[DorsetLady PMRGCAuk volunteer]

As PMRpro has said, if you still have pain - you are not taking enough Pred, if your markers are high - you are not taking enough Pred. Simple!

Not sure what planet your Rheumy is on, but it’s certainly not planet sensible.

As also said, work is not helping the situation, but if that can’t be amended or decreased in any way, then your only opinion is to increase your intake of Pred.......oh, and ditch the Rheumy and find one that understands the illness.

[Soraya_PMR]

You might be taking enough pred IF you weren’t working! If you rested plenty you might get things under control. But no, if you’re in pain, the pred’s too low or the activity is too high. Something’s gotta give!

[fmkkm]

Hi Musiclady,

Besides all the rational medical reasons, I would drop this rheumatologist just for being disrespectful. You need someone you can work with as a team.

By the way, love the picture, Goosenecks of the Colorado, I’ve been to this very spot!

Take care of yourself . Best/fm

[Flynn66]

I was put on 10mg prednisone 18 months ago. I exsperienced a few side effects especially a bloated tummy and my face ballooned which made me socially uncomfortable. I began taking Curcumin C3 Complex and weaned myself off the prednisone. I also do a lot of walking and water exercise. I still occasionally feel a little pain but nothing like I was before, where as now it's bearable. Hope this helps.

[Flynn66]

I also cut red meat and diary out my diet.

[lemarie1 in reply to Flynn66]

Well done! You are the one I want to talk to. Tell me about the timeline of your pred withdrawal and the amounts? So you were diagnosed with PMR? You are now off completely?

[anutycrixp]

I feel so annoyed at the really unhelpful attitude and throwaway remarks of those who are treating you.How can you trust a clinician who is dishonest about blood test results .Who cares if construction workers take steroids -what has that to do with you and your health? grr! Patient are vulnerable and with this from trained professionals its no wonder some of us are taken in by quackery and fake science..then doctors moan at us!At least this forum is supportive helpful and sensible! so sorry but we have to find our own way,I feel a lot better now Ive accepted P.M.R and take steroids according to my needs etc.A close relative has chronns disease and has taken steroids for years..effective but no obvious problems.Ive also had to accept being slower,v tired somedays and have to pace myself etc Well done you for maintaining your work.Good luck!