Long story, not to young it turns out!: I was... - PMRGCAuk

PMRGCAuk

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Long story, not to young it turns out!

Pirnilla profile image

I was diagnosed in dec-17 with PMR of my GP, but when I met my reumy in march he said I am to young for PMR so I wheened out my Pred from march-july. Since then they have done all kinds of bloods and MR finding nothing but inflammations in my hip area. I got my diagnose and my Pred back last thursday and started on 12,5 mg hoping that would be enough. I have been feeling less pain and stiffness but I am not at all pain free. In decembre I started on 30 mg, being pain free within 12 hours but I think that's too much. My reumy sais 20 now and maybe that's where I'll end up. I am 47 and I do have PMR. Don't let anyone say that you are too young for this disease! Those 2 months without Pred now has been awful!

Is there anyone who have experienced becoming pain free when the inflammation gradually is treated when starting on a bit lower dose like me?

7 Replies
PMRpro profile image
PMRproAmbassador

20mg is a perfectly usual PMR starting dose - but in fact 15mg is used a lot too. I started at 15mg and was almost pain-free in under 6 hours, all that was left was the hip bursitis that took a few months to fade. So I wasn't pain-free immediately but had at least a 70% improvement very quickly.

Try 15mg - it is amazing how much difference even 1mg will make. You will have to clear out that 2 months-worth of accumulated inflammation and if it is bursitis it may well pay to be patient as it did for me. What doesn't work well is starting very low (5 or 7.5mg) and working up - the inflammation just keeps stacking up in the meantime and you are wasting time at a dose that is doing nothing. And if it worked so well last time and you can face it - you could take 2 days of a high dose and drop back to a lower dose to combine the best of both worlds.

I do hope your rheumatologist apologised and has made this a learning experience - and even a teaching experience for his juniors. I fail to understand why they think that PMR takes note of birthdays - it comes when it wants and will go when it wants. That means also under 50 and taking more than 2 years to go away.

Pirnilla profile image
Pirnilla in reply to PMRpro

No, she didn’t apologize at all. I try to see this experience as a tough way to get for example a full body MR and now for certain know that I have no life threatening disease. So this message from my reumy, telling me that I ”just” have PMR, was actually a relief after all.

When I wheened of my Pred in the spring I was pain free down to 7,5 mg so I guess as soon as I find the right level to start on now, I will be able to taper in a safe way without too much pain. Looking forward to doing it in a slow and sensible way this time.

Pirnilla profile image
Pirnilla in reply to Pirnilla

And, yes, this time I clearly had bursitis in both knees. I haven’t been able to kneel down for a month without screaming out loud. BUT that’s al ready so much bettet, Thank God!

PMRpro profile image
PMRproAmbassador in reply to Pirnilla

Hehe - I've just been castigated on another forum for saying "just" PMR! I had said it over a year ago to someone in exactly the same way you just said it. Apparently I have no idea how awful PMR is. Nor that it takes YEARS to taper off pred...

Telian profile image
Telian in reply to PMRpro

You learn something every day!

My (now dropped) rheumy suspected I had something other than PMR too given my age of 55 (that fall within the general range). She kept saying "This isn't PMR, that isn't PMR, if you can't follow this tapering schedule without a flare, it isn't PMR.....". She wouldn't tell me what I did have instead of PMR either (two negative tests for RA). So I decided to quit seeing her.

As far as dose goes, I started at 20mgs and was about 90% pain free. As I tapered down to 15mgs and below I noted more pain and stiffness, especially in the mornings, leaving me with about 70% pain relief. Just this last week I developed a cold, got a Medrol injection in my knee (I have chronic knee problems in conjunction with PMR), and transitioned down to one week 11/10 on alternate days, and (miraculously, to me), I have had NO PAIN whatsoever. Every morning I wake up wondering if I'm going to have stiff shoulders and legs/knees, but now at day 5 without pain??

I did flare once following the rheumy's taper and had to go from 12.5 back up to 15mg for 5 weeks, but during that time, never achieved the same level of pain relief as I did at my initial dose of 20mg.

PMRpro has provided some great advice (as usual). This condition, and the treatment of it seems to be complex and each individual responds differently. Sometimes we put a plan in place but the outcomes aren't what we expected so we need to revisit and adjust accordingly, listening to our symptoms along the way.

So glad nothing else showed up on your MR! Now it just requires a bit of patience and experimentation to get to the dose where you have the least amount of pain. Good luck and keep us up to date.

Pirnilla profile image
Pirnilla in reply to PMRCanada

I have now taken Pred for 4 days, being better but not at all pain free. Started on 12,5 which obviously is to low storting dose. From today I will take 20 and hope that my body will respond better. In dec-17 my storting dose was 30 which weeks a bit high as I am a quite thin person, but then I was totalt pain free within 12 hours.

Now I am scared that my body won’t respond that good as I may have started to low. 🙁

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