Why did my Rheumatologist Up my Prednisone?

[newsusy]

Was dx'ed with GAC early October after going to Emerg. Long story short, I have been tapering prednisone since and was down from 60 to 12.5 mg using a tapering schedule given to me by my general practitioner. Finally got accepted by a Rheumatologist through referral and saw her yesterday. I had no complaints with how my body was feeling, so I'm really confused as to why she told me to throw out the schedule I was on and that I should go back up to 30 mg for 2 weeks, then 25 for 2 weeks, 20 for 2 weeks, 17.5 for 2 weeks...When I said I'd already been through those stages and asked why, she was very abrupt and said that is where you should be - period.

Can anybody surmise why she would be insistent on my going backwards?

[DorsetLady PMRGCAuk volunteer]

Probably because that’s the way she does it! And she’s the expert 🤨 - unfortunately not at listening to how her patients feel it would seem.

.. maybe you should do as she suggests, GCA is a serious complaint, and if your current tapering plan fails in the future, she may refuse to treat you. You appear to have had a easy ride to date [certainly easier than many] so maybe don’t rock the boat.

[newsusy in reply to DorsetLady]

Exactly what I was planning to do figuring its better to have a "specialist" than none. She brushed off any questions I had, and contradicted herself a number of times. It didn't take me long to realize the personality type I was dealing with. Ugh

[DorsetLady PMRGCAuk volunteer in reply to newsusy]

Hmm.. maybe wise to bite the bullet then. She may actually turn out to be very good ‘albeit a control freak’ … and it makes a change not to hear of a specialist trying to rush patients to taper too quickly.

Good luck … and please let us know how you get on.

[SnazzyD in reply to newsusy]

Oh dear, one of those. However, I’d say it is better this way around because a doctor intent on reducing like the clappers and causing you to relapse is worse than one who wants to put the brakes on, even if it is partly due to ego. Relapse is not good to deal with and more problematic than a couple of months rewind. Relapse can appear suddenly and you are reducing relatively quickly already from October, so this could save you overall from a higher cumulative dose. But yes, I know…

[SheffieldJane]

Oh dear! Some doctors need to be in control. How the patient feels and symptoms, are the most reliable indicator of dosage. Perhaps her experience leads her to expect that you will flare having gone down too fast. You may feel more comfortable remaining under the care of your GP if that is possible. Mind you GCA is more risky than PMR. Good luck!

[newsusy in reply to SheffieldJane]

I'm afraid both are cut from the same cloth. GP insisted I never sway from the schedule she gave me. She is equally perturbed as the Rheumatologist is when I ask questions. Neither liked the fact that I had done my research. I feel like I have been gagged if I want to remain under their treatment. Onward...

[PMRpro Ambassador in reply to newsusy]

The devil and deep blue sea isn't it! They must be very insecure ...

[PMRpro Ambassador]

That's how SHE does it and apparently everyone else - including a happy patient - is wrong.

However - she does have a very valid point, your tapering so far has been far far faster than most patients could manage and what we would suggest, To be that low after only 3 months is very rushed, When you reduce the dose very fast and don't stay at moderate doses for long, often suddenly you have overshot the dose you need as symptoms reappear but you have no idea at all where it went wrong. I would comply with her desires because GCA is very prone to flaring in the first 18 months and especially in the first 6 months, If you do flare - she will possibly try to blame it on the too fast taper and may take it out on you for not listening to her. And that isn;t going to improve the relationship. I would accept the fact that you do HAVE a rheumy unlike many in Canada and be glad that you have one who isn't terrified of using pred and is forcing you off it so soon. That's what we usually hear.

[newsusy in reply to PMRpro]

I definitely agree with everything you and others have said and will carry on. I'm feeling a lot more settled after reading your take on it. The lack of info as to why she insisted I do that had me perplexed. 🤔

[PMRCanada in reply to newsusy]

I too am in Canada (Ontario), and found my first rheumatologist unbearable therefore only lasted 3 appointments (I only waited 5 weeks to get in to see her after my GP referred me).

I only have PMR so my wonderful GP oversaw my care until I got stuck at 9mg. I was then referred to a rheumatologist of my choosing within my region. 6 weeks later I met my next (current) rheumatologist from London Health Sciences (she oversees rheumatology interns). She is quite good and I’ve had some “success” thus far treating my PMR, not to mention she’s a great listener with a flexible approach and she works with me (including answering my many questions).

All this to say, it really does depend where you are located in Canada regarding securing a rheumatologist. Having a GP willing to refer for a second opinion helps. Others have mentioned the plus side of adhering to your current rheumy’s directions, especially given GCA’s presentation, which I’m not disputing. Rather, if being her patient becomes unbearable, hopefully you can get referred to a different one. It made all the difference to me on my PMR journey.

[newsusy in reply to PMRCanada]

I'm in Peterborough, Ontario. My GP first sent in a referral to a Neurologist dismissing my request to be referred to a Rheumatologist. I waited a month only to be told I was denied. I had to wait another month because she wouldn't send a referral until I had an appointment with her. There are no Rheumys accepting patients in my city, so she eventually sent a referral to Oshawa. I was told first time referred patients had to go to her Toronto office for the initial meeting. Turns out she is moving all her patients to Toronto, so... I've gotten the run around right from the get go. It may be in my best interest that I use that as an excuse to seek another referral but I have to tread carefully with my GP or I risk the chance of not having any medical care at all. This has all been so disheartening, and the added stress doesn't help considering its recommended that I avoid stressful situations having this disease.

[PMRCanada in reply to newsusy]

I am sorry to hear of the run around and inept care that you’ve received. Indeed, as PMR patients, we are advised to avoid stress, yet my bp used to sky rocket when the assistant took it prior to appts with my first rheumatologist.

I do have access to other PMR/GCA patients throughout Ontario and could ask them if they have recommendations for “good” rheumatologists in your neck of the woods, if you’d like (we could direct/private message). That way at least you’d have one in mind should your GP choose to refer to another, closer rheumatologist. I totally understand your situation with your GP, seems as if you’ve been tippy-toeing around with her too. What a shame.

You’re certainly deserving of better care by medical professionals that can meet you where you are at, but alas some areas have shortages.

[newsusy in reply to PMRCanada]

I would appreciate that!

[PMRCanada in reply to newsusy]

I have sent you a private message.

[newsusy in reply to PMRCanada]

Thanks! Is there a list of Rheumatologists on the site? I couldn't locate one.

[DorsetLady PMRGCAuk volunteer in reply to newsusy]

No we don’t have a list of Rheumies -which is why we suggest raising a post asking other patients in your area for their personal recommendations.

Although this is an international forum, the charity is UK based.

[newsusy in reply to DorsetLady]

Sorry. I was responding to PMRCanada. I should have sent a Private Message.

[DorsetLady PMRGCAuk volunteer in reply to newsusy]

Ok..but advice is still extant.

[piglette]

Basically because she has decided that is what you do and she has never bothered to read up on the subject. She also has not bothered to find out about steroids.

[Carver63]

hi newsusy i can relate to your wonderment. but a fast taper might be affecting your blood markers. i had two relapses that forced me back to 30 mg and then very slow slide after. my Rhumy has helped me heal and i am fully recovered (touch wood) so as much as i hated Pred i would follow the doctors advice here. eat healthy avoid alcohol and look forward to throwing that last pred pill away.

[newsusy in reply to Carver63]

My CRP markers went down from 72.7 when first diagnosed to 13.4 on the most recent blood test (3 months later). Had it been the other way around and I had signs of a flare I would have understood the increase but with no explanation and/or mention of markers I was confused. PMRpro has made some good points and I will continue on the new course of treatment. Long way to go yet.....