Reflections on My First Year of PMR

[Bcol]

I thought I would post this as I feel that it is a success story (so far) and we don’t get to read about many of those, and it does illustrate that this disease is not all total doom and gloom for everyone.

Apologies for its length

Twelve months ago, today, I received in the afternoon, a telephone call from my Doctors that informed me that I had PMR. The Doctor concerned, retired the same week, apologised for having to give me bad news but the good news was that it was completely curable! The lead up to this diagnosis was a trip to the walk-in centre the week before, carry in for me rather than walk, when on a Friday night I was hit with extreme pain in pretty much every joint in my body, I spent the night there and was diagnosed with an OA flare and sent home (I have been managing OA for around 30 years). I was pretty certain that was incorrect but was in too much pain to argue.

The telephone call from my Docs came when they saw my blood test results, they asked to come in on the Monday morning did more blood tests and rang me the same afternoon with the news. CRP was 131.4 and ESR was 54. PMR. No idea what that was so many an hour spent on internet and an NHS site pointed me to the PMR/GCA site and onto the forum (thank heavens).

First doctor started me on 15mg, but I was rung by a different doctor three days later who thought that was a conservative start and upped me to 30mg for 5 days then 25mg for 5 days then 20mg. All pain went pretty much as soon as I started the Pred although I felt pretty feeble and weak for the first month or so. Since then, I have been tapering down in a reasonably slow mode to get to my present 6mg. Compared to many, I feel I have been lucky and had a pretty easy journey so far, one minor hiccup around 12mg but quickly overcome with an increased dose and then tapering continued.

I have had no real side effects from any of the medication (Pred and Omeprazole) and was able to start walking the dogs again after about a month, back to full walks after a couple of months. Not intending to move off 6mg for a bit as the odd grumble has/is resurfacing so will keep that under close review.

AA suggested at one point, but I asked for a DEXA scan first which came back with excellent news as did subsequent blood tests, low Vit D but all else was good so not mentioned again (yet). I’ve not actually seen a doctor since my hospital visit and I don’t think I have spoken to one since November, not sure that is good but at least they have left me to get on with it. Blood tests if I ask and prescriptions supplied as I request (so far).

The PMR/GCA site and this forum has, as far as I am concerned, made this journey possible. The input from the Ambassador and others (you all know who they are) to the forum is exceptional, when you add to that the outstanding contributions from the other forum members the combined knowledge, experience, advice, time, compassion is unbeatable. You really are not alone. Thank you once again.

Onwards and upwards with fingers crossed, will I make it in two years, who knows, I certainly don’t. Got to put in a new prescription soon so it will be interesting to see if there is any change from the surgery end!!

Peter

[jinasc]

No need to apologise for writing a long post, especially as it was a lovely one to read.

[SheffieldJane]

It’s good to reflect. I wish I’d kept a journal, you lose all sense of time ( Pandemic) and on bad days you forget about the progress you have made.

[DorsetLady PMRGCAuk volunteer]

Nice to hear - hopefully will be comfort to newbies...keep well.

[bussell]

Thank you Bcol. That is so helpful and encouraging. I am exactly 6 months down the PMR road, travelling in a similar way, so fingers crossed that both our journeys continue without major setbacks. Good luck!

[bussell]

PS Thoroughly agree again with Bcol - where would we be without the wisdom and compassion and encouragement of all of you on this site!!

[MrsNails]

Thanks for Posting Peter & very well done, you’ve been an advocate for your own health throughout your PMR Journey which coincided with the Pandemic & Lockdown. You’ve kept ahead of your blood results, what they mean, after a quick, steep learning curve, you are now able to help others & post great contributions to the Forum.

Thanks

MrsN

I’m going to add your Post to ‘PMR- The Various Stages of Recovery’ in FAQ

[Bcol in reply to MrsNails]

Thank you

[PMRpro Ambassador]

Just goes to show that I'm right when I say that patients will look back in a year and see how far they have come!

[HappyDiamonds]

Good to read, so glad you were able to get back to walking your dogs. Its very important to me that I do several miles every morning with mine, would go bonkers otherwise (so would the dog 😀)

[Miserere]

Great to read a positive post, Peter - thank you.

[DodiR]

Keeping a diary is a good idea. My partner suggested I did this as she too has been in a similar situation. As my diagnosis came around my birthday she even bought me a nice note book to make my entries.

I have not only written daily but also added some sketches, recipes and photos of different happenings during the time.

When I have my 'off' days I take a look at my diary and realise how far I have come during the past 15 months.

[Grannyasbo]

Hi. Yes thank you for the positive story. Really helps us new comers. And agree. Thank heavens for this forum and the wise and wonderful people who run it and contribute to it. Wishing you a lovely day and enjoyable walks with your dogs. GA

[Bessie333]

So happy to read your post , so encouraging. I was diagnosed in May this year and am so glad I found this site , it is invaluable.

[GrandmaPirate]

Great post to read. Thanks to pred. I am also walking on average 14000 steps/day with my faithful pointer. Good for him znd me. And thanks to the increase from 1 mg to 6 mg after PMR flared up after my first AZ injection. Next Monday second AZ vaccination and 4 days later I must try to com down again with pred. Good news is always encouraging to read.

[PMRpro Ambassador in reply to GrandmaPirate]

Wait and see!!!!

[larkthebark]

Lovely to read your post and well done. I was diagnosed last June and am currently on 5mgs and slowly reintroducing yoga and swimming. Like you I feel very fortunate but think its great to share our positive stories to give hope to newbies.I hope your progress continues and glad to hear your Dexa scan was ok.

I have refused to take AA until my scan which is booked now for 12th July !

Take care and hope your condition continues to improve !!!

[Noosat]

Good story. I got down to 2mg afte 2 plus years,but recently had to go back to 5mg. Always hopeful, I am starting on 4 and a half to-morrow

[Bcol in reply to Noosat]

Fingers crossed, hope you are able to continue downwards.

[humlies]

Thank you for this upbeat and practical post. I too feel after a year on Pred. that I am doing very well to be down to 5mg from the original 15. I have several side effects from steroids but am learning to lead a rather more measured life than I did before, and really feel I am so fortunate to be able to do most of the things I did before PMR hit. Dexa scan on Sunday so hope to able to come off AA, depending on the results. It is so good to be reminded that we are NOT alone!

[Sungolfer]

thank you - very interesting read as a very new member to the PMR club - started 15mg on Friday 6th October good to read such a positive post. I shall definitely write a journal. Good luck