PMR Update

[SMH4CRNA]

Visited yet another Rheumatologist this past week. The last Rheumatologist wanted me off the prednisone without taper to see how bad I can get so he can order yet another PET scan. Needless to say, I went to get a second opinion.

Yes, this Rheumatologist stated I was to young to have PMR. However, she agreed to taper slowly to evaluate my condition. If I flare than the plan is to add MTX. At this visit I chose to bring my wife to be a witness of my condition and furthermore an advocate for my care. The doctors appointments are always midday and my symptoms are minimal. So, having her there was a true benefit.

I'm currently on 5mg and have been since May minus a brief 5 day respite at the request of the previous Rheumatologist. In that small break, symptoms came back.

I'm content to at least have a Rheumatologist who is willing to assist me on this PMR journey. I have been spinning and getting no where with the previous. It's truly been a waste of my time. Thank you all for your continued support.

[PMRpro Ambassador]

It is all very well saying it can't be PMR at your age - which is rubbish, But you DO have a pred-responsive myalgia. With a lowish dose of pred you have QOL, without it, you don't.

[SMH4CRNA in reply to PMRpro]

Yes, I even quoted you at my appointment. I stated, "I am not here to say if I do or I do not have PMR, but I do have a myalgia responsive to Prednisone".

[DorsetLady PMRGCAuk volunteer]

Good-ish news…

Let’s hope Rheumy allows you to taper slow enough not to get a flare.

MTX works for some, but not all, and not sure adding it at such low doses proves a lot. But if you don’t try, you won’t know..

Good luck - as least you have someone who is willing to listen to you… and that’s always a bonus.

[Sharitone]

Is your extreme youth the ONLY reason why she thinks it can't be PMR?

Because people are always being diagnosed with early-onset this or that, or premature something else, so excluding a diagnosis purely on the basis of a few years seems almost specious.

[SMH4CRNA in reply to Sharitone]

Yes, only based on youth. See my bio, have all symptoms

[PMRpro Ambassador in reply to SMH4CRNA]

There are increasing numbers of rheumies realising that age shouldn't be a criterion - and anything can happen at any age. It may be rare, it may be unusual - doesn't stop it happening.

[Sharitone]

I'm very tempted to say, 'what a twit!', but that would be rude to her.

[PMR2011]

I was diagnosed at 51 and thank my stars I had an on the ball rheumie. As others have said, at least she’s listening.

[cranberryt]

I went through a similar thing with my first rheumy. However, over time, because of our differing points of view, she continued to pressure me about adding other drugs to get me off prednisone. In the end, I decided we could no longer work together and went back to my gp who was the only one who was objective about my symptoms, and willing to set age aside. I have seen 3 rheumys, none of which could get past my age. 48.75 at diagnosis and 52 now. I hope your dr is more reasonable over the long term than mine.

[SMH4CRNA in reply to cranberryt]

I am no Rheumatologist, but I would think they would take a holistic approach when it comes to diagnosis of an autoimmune disorder. I reached mental burnout and physical burnout during the pandemic. I'm a Healthcare provider who was responsible for prevention, detecting and caring for Covid patients. I was extremely stressed than add the vaccine to poke the immune system bear and it shot me into a hyper sensitive, hyper stressed state. So, at age 49yo I had predisposing factors that may influence an early DX. So, it's frustrating they only see my age and therefore conclude I don't have it. I feel you.

[PMRpro Ambassador in reply to SMH4CRNA]

"but I would think they would take a holistic approach when it comes to diagnosis of an autoimmune disorder"

I know several who DO - but they are a vanishing minority!

[BuddyBearF]

I was 53 when PMR started and heard I was too young from all docs. But my GP and new rheumatologist said everyone is not a text book. Some people don't fit the profile. I've had it almost 2 yrs...8 months to diagnose but down to 1mg Pred