Great News - My Rheumy Agrees With You!

[OldGolfer]

I’ve seen her twice now and the second time my wife went with me. It always helps when I have her confirm I heard what I thought I heard. I had gone from 15 to 20 based on opinions in this forum and she agreed completely with the change. Was working pretty well for me but I decided to try reducing to 17.5. No fun - immediate return of symptoms. Tried 3 times, very stubborn I guess. Called the office and she returned the call the next day.

She advised that if I really want to try tapering this early she would happily prescribe 1 mg doses. I was thrilled that she reflects everything I have learned here. The 17.5 dose hurt so bad I jumped to 25 just for fun and as before all pain gone. 20 was pretty good but 25 is awesome. Rheumy says she sometimes goes to 30 with some patients. I’ll try to stay with 20 for a while but I’ll probably jump to 25 if it feels better. I hate pain and see no reason not to fix it.

I love that my Rheumy agrees with everything I find on this forum - wouldn’t be surprised if she reads it. Weakness and fatigue sure beats pain and I plan to keep pain at bay even if I’m on Preds for the rest of my life. I’m on this forum first thing every day and the time and effort you folks put into helping strangers is inspirational. Thank you.

[RoadTrip]

Given problems lots of people seem to have with rheumies, must be great to see yours on side and agreeing with forum👍

Agree painless is best!

[SheffieldJane]

It’s good to hear about Rhuemies that “get it” and treat the whole person. Lucky you!

[paulst955]

If this is just starting for you stay on 20mg for at least a month then go slowly rushing down on pred only gives you PAIN why do that. This is from someone who has been on pred for just over 8 years on 12.5 of pred at the moment after the worst flare I have had in all those years this condition does not go away for some people quickly. I wish it would.

[Hidden]

Morning Oldgolfer. Firstly, are you still able to play golf ?? I agree with your sentiments how great this Forum is. The help I've received has been brill. PMR is bad enough, GCA is by far the worst, with the worry of going blind if not treated quickly enough with high dose steroids. I'll be seeing my Rheumy at the beginning of October and hope that the appt isn't cancelled due to the virus......not the same speaking on the 'phone about how we feel. I will tell him about the forum and see what he says. He's a young chap so will probably agree that contact with others suffering the same can only be a good idea.

My husbands brother in-law was diagnosed with PMR approx 4 months ago. He lives in Spain. His doctor prescribed 70 mg they believe in giving it a good bash with Prednisone to prevent GCA. He has now beaten me in the tapering method with him currently taking 10 mg. I start 10 mg this coming Tuesday. I have been reducing by 1 mg two weekly since I was on 20 mg. Now reaching 10 g I will continue to reduce by 1 mg but stay on that for a month until I manage to reach 1 mg which I've worked out to be next June 2021. Praying I don't have any hiccups and get a Flare Up and have to go back up. I hate to sound a pessimist but reading so many posts where ladies have to go back on higher doses after suffering the dreaded symptoms again.

Symptoms from Prednisone I am experiencing are : Eyesight issues with eye pressures going up.

Black moods that won't lift

Hunger pangs that fortunately are becoming less as I reduce....but, sadly weight gain all the same.

Numb toes

Nails poor and hair too and a lot of sleepless nights

And of course the risk of diabetes, osteoporosis, cataracts, glaucoma.

But what choice do we have but to take the Pred to get us out of that awful pain.

Take care

Anne

[OldGolfer in reply to Hidden]

Thanks for asking about golf. Still a little weak from PMR and pred and several months unable to do much because it hurt - so not much golf yet. I try every couple of weeks but only finished 9 holes one time. It’s a beautiful day here in Virginia so I’m going to give it another shot this afternoon.

[Bcol in reply to OldGolfer]

Great news re the rheumy, but suggest you don't rush the golf. Golf uses a lot of muscles and they may not need the extra strain that would be put on them. Gentle walks around some of your lovely courses or countryside may be more beneficial for a while, frustrating though that may be. I had to give it up altogether with my OA.

[Hidden in reply to OldGolfer]

So you are in US. I have family in Pennsylvania. I'm UK.

If you're on the correct dose of Prednisone you shouldn't be getting any pain. The very first time I took 15 mg within half an hour all my pain had gone and it stayed gone until I got down to 8 mg that's when Giant Cell Arteritis set in. Symptoms were: painful jaw on eating and opening mouth wide and tender head, top back teeth ached too, no headache though. Sadly, Pred was increased to 40 mg. My rheumatologist told me to reduce every two weeks by 10 mg, which in retrospect was too much and too quickly too. Currently on 11 mg but noticing a few things going on. Headaches and Occipital bone tenderness. Should be reducing to 10 mg on Tuesday...not sure I'll be doing this.

Good luck

Anne

[PMRpro Ambassador in reply to Hidden]

"If you're on the correct dose of Prednisone you shouldn't be getting any pain"

Afraid not necessarily - some people are never entirely pain free although that is more the case with PMR than with GCA.

[Hidden in reply to PMRpro]

Oh, I stand corrected, didn't realise that. I was one of the lucky ones then. Sooner have PMR than GCA any day though.

[Yellowbluebell]

Glad to hear you are finding the forum useful and very hapoy your rheumy is one of the good ones. Mine is too. YBB

[readingbooks in reply to Yellowbluebell]

So is mine ! There must be others ?

[Yellowbluebell in reply to readingbooks]

Not as many as there should ve unfortunately!! YBB

[ChinaWuntoo]

Glad you've got good rheumatologists - I had a bad one and got rid of him.

And are they all young, as Staplehurst's (showing my prejudices!).

[Hidden in reply to ChinaWuntoo]

Which way does your prejudices swing ChinaWuntoo ?? The young ones maybe more up to date with their research. Got to say I'm happy with mine. Looking forward to seeing him on the 5 Oct

[PMRpro Ambassador in reply to Hidden]

Several medical schools include f2f sessions with patients - PMRGCAuk were looking for volunteer patients a couple of years ago. It sticks when they have heard a patient's own story.

[ChinaWuntoo in reply to Hidden]

I'm sure that recently trained (therefore younger) GPs and rheumatologists are more likely to know about PMR. It was two locum, very recently trained, GPs who diagnosed my PMR very speedily and knew what to do - loads of blood tests before quickly starting me on 15mg pred and together they tapered me at the correct NICE rate - then the rhuemy got involved and things went downhill from there and I sacked him. My GP is older and not trained in UK but was brought into the picture by the locums when he returned from leave and now is happy for me to manage my taper. I get on well with him.

[Hidden in reply to ChinaWuntoo]

That's good to hear. My GP missed my PMR back in the summer of 2019. He was treating me for Osteoarthritis. I was sent for an X-ray on my neck where it showed up that my discs 4 and 5 were worn. GP continued to treat me with Ibuprofen and painkillers, one of which was morphine medicine. Finally, I was so fed up of being in so much pain I arranged an appt. with a private G P at a private hospital. She took a load of blood tests and recommended I see their rheumatologist, which I did a week later. He took more blood tests which included ESR/CRP. My level flagged up the reading of 515. Dreadful that I had to pay out such a lot of money to get diagnosed. Had my GP taken a blood test he'd have seen what was going on. I think at the time I was also suffering GCA too, as I was getting such bad weird headaches every day. Then once I started to taper from 15 mg for the PMR I started to get more symptoms of GCA. Painful jaw, achy back top teeth and tender head. the headaches stopped though. Tomorrow I reduce Pred to 10 mg. I will be staying on this mg for a month in the hope I don't suffer any 'Flare Up' Strange now I've started reducing, my old symptoms that I have suffered for years seem to be returning. Sinus issues with a headache and tender occipital bones. Just hope GCA keeps at bay !!

Anne

[ChinaWuntoo]

I suspect a fast taper if pain has returned? Who is suggesting this rate of taper - GP or Rheumy?