Update after getting to see rheumy

[SallyLeon]

A brief summary: age 64, living in U.S., typical PMR symptoms came on suddenly 2 1/2 months ago; pcp ran blood tests with ESR 25, everything else normal; started on diclofenec (NSAID) which did nothing; symptoms worsened, pcp ran another set of blood tests with ESR 28 and CRP 23 (she did not run crp previously); x-rays of shoulders negative other than normal aging; started on pred trial of 60mg for two days, 50 mg for two days etc down to zero after 12 days; pcp stated this is a 'standard maximum starting dose' for inflammation. Concerned about the high dose, and reading on this forum that if it is PMR then it should respond to a lower dose, I started taking 20mg pred a day which removed 70-75% of my pain and stiffness within 8 hours; by the end of a week, 90-95% improvement. After two weeks on 20mg day, pcp then ordered reduction of pred to 10mg day for 10 days and then stop.(I'm guessing this is to see if symptoms return?) I took 10mg a day for one week with some pain/stiffness returning, but it was tolerable; Yesterday I then dropped to 5mg, which brought on more pain and stiffness and a general unwell feeling again.

Fortunately, I received a call from the rheumy's office yesterday that there was a cancellation and I was able to get an appointment same day (my official appointment was not until Oct 7th). Well, the rheumy immediately diagnosed PMR! She said she is treating many cases of PMR and all of my symptoms pointed to that diagnosis.(I was very impressed that she spent 45 min with me!) The rheumy ran another set of blood tests and started me back on 20mg pred today, and she will call in the next week or so with a potential taper schedule; I am also being sent for a dexa scan.

I just want to thank everyone on this forum for all of your time and efforts to help those of us looking for a 'lifeline'. The information on this site has been invaluable and is a great comfort to me.

[DorsetLady PMRGCAuk volunteer]

Good job you got cancellation with Rheumy - PCP

a bit overzealous with initial dose - but better that than none I guess - although you don’t want to take more than is necessary.

[SallyLeon in reply to DorsetLady]

For sure DL! The rheumy said that PCP's in our area prescribe prednisone in this 'standard' format just to knock out inflammation as fast as possible. Because of what I have read on this forum I started with 20mg to see if it made any difference, figuring I could always increase if necessary. I'm so glad I got put on the cancellation list with the rheumy because I wasn't looking forward to either being off prednisone until Oct 7th, or yo yo-ing until then.

[DorsetLady PMRGCAuk volunteer in reply to SallyLeon]

It’s a bit of a blitzkrieg approach- which is okay in one way - but that amount of Pred is apt to mask everything!

Love the dog - is it yours?

[SallyLeon in reply to DorsetLady]

He was a rescue who I was blessed to have for 10yrs-he passed away from cancer the day after Christmas 2018 💔 We now have a new rescue puppy who just turned one!

[DorsetLady PMRGCAuk volunteer in reply to SallyLeon]

Another Lab?

[SallyLeon in reply to DorsetLady]

He is actually a Plotthound/Lab mix. I had never heard of a plotthound before, but it appears they're native to North Carolina (southeast U.S.) He is brindle colored ,weighs 53lbs and is a real sweetheart! Now if I could only get him to stop chasing our 4 cats!

[DorsetLady PMRGCAuk volunteer in reply to SallyLeon]

Ahh yes - well good luck with that!

[PMRpro Ambassador in reply to SallyLeon]

Hmm- VERY good luck with that! My daughter was fostering a rescue Podenco who she would have loved to keep - but he almost killed the cats so it was a definite no-go! Her other Podenco is fine with them.

[DianeA1 in reply to SallyLeon]

We have 4 feral cats (all spade, have shots) that our rescue dog loved chasing until they ganged up and told her that they liked living here with the retirement package (two squares, water, covered beds) and did not like being chased anymore. Now they all lay on the deck together. Just took time. I hope that you get to that balance!!

[Noosat in reply to SallyLeon]

I have met the breed, Plott and liked the dog. However, one has to be careful as the breed evolved to take down big animals, although the dog is not large it is very strong. This particular dog was chasing my Doberman, in play, and out the corner of its eye saw this huge animal, me, and hit me in the back of my legs. Down I went with injured arm and leg, not too seriously. This dog had no training at all, which I think is criminal for the owner - good dog, bad owner.

[SallyLeon in reply to Noosat]

Yes! We have worked with him on behavior training for that reason. When we got him he had a lot of insecurities and anxieties that we had to overcome. He was in a very crowded no kill shelter and was somewhat traumatized I think. He has grown into a lap dog (at 53lbs!) and is very loving. He certainly has a lot of energy!

[Noosat in reply to SallyLeon]

I always enjoy hearing a good dog rescue story

[PMRpro Ambassador]

Looking better!!

[SallyLeon]

My pcp was reluctant to diagnose PMR and deferred to the rheumy, who I originally couldn't get an appt with until Oct 7th. I was in so much pain and could barely move when I saw the pcp, that I think she felt I needed such a high dose to 'blast' the inflammation out! Hopefully I'm on the right path now 😊

[kulina]

You're lucky to have a very good rheumy who is doing EVERYTHING that needs to be done. I went to 3 rheumys before finding a good one and even then, my dexa scan was done a year after being on pred. Too late to compare scans before and after Pred. Good luck on the PMR road;t it looks like you are in good hands.

[Amkoffee]

I also live in the US and I was very fortunate that my PCP diagnose me on my first visit to him. But... He refused to treat it and I couldn't get into a rheumatologist for 3 months. I begged him for prednisone and he refused. I have since fired him. A good rheumatologist is what we all need and I found one who is wonderful. I'm glad to hear that you two have found one that's working with you. Good luck and may your PMR disease burn out soon.

[Thelmarina]

So pleased to hear that you are now in safe hands and that the Forum has proved its invaluable self. Best of luck for the future! 🌺

[bluegirl7]

Hi,

I was suffering for two years before diagnosed. My rheumy studied all my bloods and showed me what everyone had missed. He started me on 5 mg and in three days I felt so good. He said we were on the right track and raised me to 15 slowly and then I settled on 12.5 which became my ideal feel great dose. He said that completes the PMR diagnosis. Two years later I am down to 3.5 and struggling to stay there. I have lots of Pred side effects and wish we in the US had the coated Pred but life without it was even more hell.

I would say that you will need to find an optimal low dose and probably need to stay there for awhile. I have read several studies where folks stayed at 15 - 12.5 for awhile. But we are all different and flares are real and I have to keep reminding myself of that and go up when needed.

Good Luck!!!