Is pred really the holy grail?

[Griggser]

Ok I’ll admit it up front I’m confused, and that’s not the pred talking! Seven years in on this journey and still struggling to get below 12mg. I read every day on this forum of people with ongoing pain of some form of another and how it affects there lives. Whether that’s not being able to do the things we used to, being in constant pain, brain fog, exhaustion, others around us not understanding etc etc. I can clearly remember that day 7 years ago when I woke up in terrible pain and couldn’t even get myself out of bed and the day I first took pred with 8hrs later thinking what a miracle drug. So if pred is the holy grail and is supposed to take our pain away how come there are so many of still so debilitated?

[PMRpro Ambassador]

It isn't the Holy Grail - it is the best that is available which isn't quite the same thing. It is there to manage symptoms by removing the inflammation, the disease process isn't touched, it chugs on in the background so some effects remain, especially the fatigue. That is there in almost all a/i illnesses. And pred only works well if you are at the right dose - I refuse to compromise and I take what I need. Luckily I have 4 doctors for whom quality of life is paramount and that was what stopped the use of methotrexate.

Slowly the medics are coming round to the concept that there are several different versions of even the PMR we talk about. PMR isn't the disorder, it is the name given to the constellation of symptoms of an underlying disease process that is causing them - and there are several. They include a couple of cancers and other muscle disorders as well as forms of inflammatory arthritis. They must be ruled out before the differential diagnosis of "just" PMR can be considered to be confirmed - insomuch as that is possible.

[Griggser in reply to PMRpro]

Thanks for your feedback, most enlightening as usual. I suppose I’m frustrated after so long and not really feeling any better, apart from no brain fog. I’m at the point we’re I’ve been trying to reduce on the DSNS method and still in constant pain. Hips and shoulders mainly but my hands and wrists are bad now especially in the mornings. To be honest I believe I should be going back up to 20mg a day but as my new rheumy is thinking it’s not PMR I’m really trying to keep tapering as if things get worse that’s sort of proving a point and he did suggest going cold turkey, I’m sure he didn’t mean just stop! I do wonder if tocilizumab might help. Things are helped with the ongoing pandemic as my appointment with the rheumy has been cancelled and no sign of a new appointment.

[PMRpro Ambassador in reply to Griggser]

Even DSNS won't get you to a lower dose than the one required to manage the inflammation - too low is simply too low. If 20mg is the only place you are comfortable then either you have the same sort of PMR as several of us seem to have or it isn't PMR, or at least, not the most common versions of PMR.

There has been discussion not too long ago about what we are calling Long PMR - and some of us with Long PMR need more pred for comfort than others. I'm pretty good at present at 15mg - this is since my last flare and my flares stay pretty active for a few years before I can start to reduce noticeably again. But I've only been down to below 5mg once in 11 years.

[Theziggy in reply to PMRpro]

"and my flares stay pretty active for a few years" - that's a long time for flares PMRpro

[PMRpro Ambassador in reply to Theziggy]

I'm talking about flares in disease activity, not flares due to overshooting the dose I need at the time. Flares in disease activity are no different from the onset of the disease in the first place.

[PMRCanada in reply to Griggser]

I've "only" been on pred for 3 years this coming May, for PMR, however have certainly noted that 9mgs seems to be my "sweet spot". Four attempts to go lower than than dose resulted in flares, and I refuse to live a life of pain and stiffness. So for me I'm ready to get a t-shirt printed that says "9 is fine". Of course I'd rather that I could settle on a lower dose, especially if I'm going to be dealing with this condition for years, however I understand that this particular level of pred is required to deal with the disease activity.

Regarding the use of Actemra, I would be willing to try this biologic however in Canada it is not allowed as a treatment for PMR (only GCA and other autoimmune conditions). It is disappointing for me to not have access to a treatment that may indeed help lower my pred dose, that others have had success with. I understand there is no guarantee it would work, but it sure would be nice to at least try!

Hope you can settle at a dose that addresses your pain, as it sounds like that is not happening. And I can only imagine how that must be for you over the span of 7 years. I, myself, am somewhat hesitant to see a rheumatologist, one - because I had a very bad first experience with one shortly after being diagnosed by my GP, two - my GP is overseeing me and is very compassionate and patient, and three - I've heard so many stories of patients being pressured to taper their pred dose despite increasing pain and stiffness. I also don't want to deal with the stress of such pressure, which we all know is bad for our conditions.

[katiemills in reply to PMRCanada]

Hi there, I’m in a similar situation to you - three years and stuck at 9 mg. the only difference is that my ( now retired ) rheumy gently persuaded me to start methotrexate when I was struggling to reduce at 15 mg. I definitely think it helped me get down to 9 mg , where I have reached a brick wall.

I posted that I’m ignoring my new rheumy’s instructions to increase the painkillers in order to reduce the steroids- I tried that and it was awful.

I’ve told my sympathetic GP that I’m sticking at 9 for the foreseeable future , and asked if I still need to be taking the methotrexate , since I’m stuck at 9 mg. His reply was that I must keep taking it , or I risk a flare because the methotrexate is still doing it’s work in the background .

Is Methotrexate available in Canada ? If so, that could be an option for you .

[Griggser in reply to PMRCanada]

I can understand you sticking at 9 if that’s working for you. I’m on the second week of DSNS from 13 to 12 and am feeling crap. Everything is aching and I just am not enjoying life as I should be. I’m sure that if increase my pred I’d need to be up around 20 to get the relief. I’m just so fed up with no real support, not that I think much can be done. At the moment I’m battling on the DSNS method to see how things go, I’m expecting worse! But I need to prove to myself that the pred at the right dose works. Of course the big question is what is that dose?

[Greensleeves in reply to Griggser]

I stayed at 5 mg for several years, on the advice of the rheumatologist, and literally dragged myself around caring for infirm family members. Putting them first , reading up on their diseases , and basically ignoring my own .

I was so fatigued, I wondered how people managed to get up and get going , do the housework, shopping , normal stuff etc . I would force myself to do it for others, then crash out .

I was ill at Christmas and increased the dose , and now know my manageable dose is 10mg , but to be both fatigue and pain free it’s 15mg or above .

Because of the length of time I’ve had PMR , and the ongoing stress , I doubt I’ll ever be completely be off .

It’s hard to accept, but it is what it is .

I sometimes think it’s the “ having a conscience “ disease .

Although I’m certain it’s the cause of my mum’s illness.

Undiagnosed or non treated PMR and GCA.

[Ssratha in reply to Griggser]

I have found when weaning that i will feel unwell for maybe 2 weeks to a month. These are actually withdrawal symptoms.which very much mirror PMR. i started with gca and 80mg of pren, one year in i developed pmr, couldnt get past 5mg weaning, but got advice from homeopath and supportfrom homeopathics and am now 5 1/2 years on down to 3 1/2 mg. I do have severe osteoporosis in the neck of femur and lower spine now. From the pred. Damned if you do Damned if you dont. Hang in there.

[Hidden in reply to PMRpro]

That's how I understand the problem of PMR.