Flat after Rheumy today

[SnazzyD]

I saw a Rheumy Reg today for the first time since I started reducing from 40mg for GCA six months ago. He was warm and polite and let me do the talking. I don't think he liked my DIY method. He asked me why my current dose was 16.5mg as it is an unusual dose for Pred. I explained my approach to reducing and timings and had no scares for a while since reducing the jump sizes to 0.5mg. Oh dear, then came the negative stuff. He said I am still on a high dose and I WILL get Cushings and there was a lot of it about in this area of the country (eh? What's that got to do with it?). Then came the plan B if Pred "isn't cutting it" such as Methotrexate/Actemra. I said, "but they can have bad side effects as well" to which he said people with GCA do better. It felt like he was saying that given I could not reduce as per the speediest guideline rate it meant Pred was going to fail sooner or later. I can see he was wanting to have a plan B ready in place but really, give me some credit and positivity Mate! It's pretty miserable this lark, you know. I allowed myself to get a bit emotional to express how much I hated being on Pred, not least because I can't work, so I need no encouragement to get off it. I also said, I am only six months down the line and so far have not had to go backwards. He encouraged me to consider the GiACTA trial but why would I consider that stuff if I'm doing ok? Why at this stage would I want to swap a known bad thing with a relatively unknown bad thing that is potentially very bad with my cyclical Neutropenia? Then came the bone drugs talk. Again, on balance right now, I am not happy to mess my body about any more than I have to. Doc not happy and more scare talk.

It does seem that doctors are so hell bent, whether they like it or not, on delivering the Gold Standard for a particular condition, that thinking about individual patients is no longer possible.

So home I go feeling flat and scared but feeling I don't have many options other than stay calm, keep the faith and cross whatever bridges when I get to them. Right rant over, time for bed so I can emerge tomorrow more positive.

[1Purplecrow]

Dear Heart, your rheumy is a JERK!

That being said...you are doing fine, and I am proud that you didnt smack him up along side his noggin for being such a pompus *badword* !!

The experts will be cruising in shortly and will give you lots of nice ways to get your point across... so for right now...just you and I be royally annoyed that this self-important fellow did not give you a bit of credit for the excellent job you have done with your taper!!

Ok, nuff said. Lets get a glass of wine, and watch the birds in the back yard. Things be better tomorrow😘

Kind regards, Jerri

[SnazzyD in reply to 1Purplecrow]

Problem was, he was nice and obviously thought about things and was a lecturer/ academic sort which I like. Give me a rude one any day; much easier to deal with! Trouble is the inability to think or act outside the Gold Standard box. He said his special interest is individualised medicine (or something like that) but medicine is not there yet and they have to use what they have. His response I think was fear for me and lack of time to discuss it properly. He said that there is very little research into GCA, so really st this point they should be taking more notice of anecdotal information from patients. It's like saying, "we have this square wheel, there's a nice round one over there but nobody has told us we can use it so we won't".

Going for fear tactics in my interests is kind of laudable but they really don't know the psychological effect of blasting you with it and the stress of being the only one who seems to be seeing the bigger personal picture. Then there's the nagging small voice that says docs do this every day so know better and why would a bunch of amateurs (no offence to all of us) be better informed when all they do is pump up their own views? Ho hum, back to the good old gut feeling.

[1Purplecrow in reply to SnazzyD]

Well stated.

[Rugger in reply to SnazzyD]

What about taking notice of your "anecdotal evidence" then? If we're feeling generous, perhaps he did, when he had time to reflect and add you to his mental database of individuals.

With (or without) your professional background, you are an expert patient and you should continue to believe that and carry on with the taper that suits you.

Your analysis of the situation is very sympathetic and well stated, as Purplecrow says, but imagine how someone else, less versed in matters medical, would have felt and still be feeling this morning.

Hoping you were able to get a good night's sleep. x

[Jackoh in reply to SnazzyD]

I think one of the problems is they don't ( or to be fair many) don't do GCA everyday. They don't experience the pain, they have little idea of how it affects you psychologically, how life changing it can be and how much effort and time goes into trying to deal with weight, pacing, eating sensibly, change in looks and identity. He may have been charming and caring but has only got half the picture and his obvious concern for long term use of steroids. So we do have to make an informed judgement ourselves, listen to him, listen to others and move on from there. I was heartened the other week reading about the long term effects of steroids which appeared to paint a better picture than I had imagined. The steroids are the only thing we have at the moment and I believe they have to become our friends rather than our foes. I say this from the point of view of being "stuck" at 19/20 mg now for over a year. When I reduce further I have a return of head GCA problems. I have just managed to reduce to 18 mg but I'm not holding my breathe as have had some head pains returning. Unless you've been there it is very difficult to explain to medics. Regards Jackie x

[PMRpro Ambassador in reply to 1Purplecrow]

Jerri - you always nail it perfectly!!!!

[1Purplecrow in reply to PMRpro]

Thanks! I'm also well known for subtlety😁!!!

[PMRpro Ambassador in reply to 1Purplecrow]

Yes, I can see how

[Patricia157]

Hello

The trouble is they think they know it all. BUT the collective we know they don't! When I started on 15 mg initially my doctor said drop to 10 after three weeks- well you can guess - I had to start all over again.

Nuff said!

[Jackoh]

Hi - have been following your posts SnazzyD and have always felt that you have been doing an excellent job of listening to your body and using plain common sense as far as your reduction of steroids is concerned. I think you have done so well in reducing, without the need for upping the steroids again. So carry on the good work! I think so often the medics want a quick fix to satisfy themselves and their need to be in control and because of their fear of the long term affect of steroids. We know it takes as long as it takes:- none of us want to be on them, we all work hard to reduce. I just think this isn't understood- so as the song goes" pick yourself up, dust yourself down and start all over again!" Best wishes Jackie x

[DorsetLady PMRGCAuk volunteer]

Hi,

As we've said many times, some doctors, including the so-called specialists, just don't understand our illnesses - and that's the main problem!

They don't like the fact that GCA/PMR have their own agenda - in fact not sure some are even aware of it, otherwise they wouldn't keep blathering on about 2years max for its lifetime.

GCA/PMR haven't read the rules book. They are not good schoolchildren, don't obey the teacher, and certainly don't hand their homework in on time!

Keep doing what you are doing, and next time you see your registrar -if he's still around then- nod, smile nicely, make conciliatory gestures, and know inside you are correct in your approach.

As you said, yourself, imagine him in his underpants! It's good for a laugh if nothing else 😉

[Insight329]

SnazzyD, my bet is you know more about this illness than he does. He followed the 'outline' and 'checked the boxes' during the exam, i.e. talked about Osteoporosis (check), talked about the new drug availabled (check)', warned about Prednisone (check), etc. But here's what I think he should have communicated to you: " I'm impressed that you are doing your research; your reasons for (fill in the blank) are valid. You've learned to listen to your body and are doing well at reducing without complications. You've made difficult life changes with a positive attitude. I appreciate your willingness to share your experience in a disorder I have little experience with. Continue on the path you are on and contact me if you have any questions or problems. Have a nice day."

[markbenjamin57 in reply to Insight329]

Couldn't have put it better myself Insight329 - well said!

[PMRpro Ambassador]

"He encouraged me to consider the GiACTA trial but why would I consider that stuff if I'm doing ok? "

Who is this prat? The GiACTA trial is ongoing but is no longer recruiting.

clinicaltrials.gov/ct2/show...

It has reported its first end point last November. Actemra is approved in the USA for GCA and is being used on a case by case basis in the UK.

To be down to under 20mg without flares in 6 months is excellent. You are now at a PMR-level dose:

practicalpainmanagement.com...

And I have been on pred at the sort of dose you are now at for much of the last 8 years - I do not have Cushing's. I WAS Cushingoid over 5 years ago, it was top of the list when I was admitted for something else. I am no longer - the hospital doctors agree. Anyway, being Cushingoid is not the same as Cushing's disease. Cushing's disease is due to a problem, usually a tumour, where the adrenal glands produce too much cortisol as a result. We do NOT have Cushing's disease - even if we look like it. We KNOW why we have gained weight in certain places and have other particular problems - it's the pred stupid!

Sounds as if he thinks he can sound clever - and all he has done is make himself look a right idiot. Never mind the rest of his twaddle...

PS- where are you? And have you had a positive TAB or u/s dx of your GCA?

[SnazzyD in reply to PMRpro]

Negative TAB but had been on Pred 60/40mg for 8 days prior with symptoms resolved in two hours. I was told at the beginning that U/s is only done in Cambridge to monitor not diagnose, due to lack of expertise and variation in user interpretation. Hmm, why is monitoring so much less important?

He did agree that the PET scan was a waste of time three weeks later.

[PMRpro Ambassador in reply to SnazzyD]

Then why did he even suggest you should consider the GiACTA trial? I'm left to ask what he knows...

[SnazzyD in reply to PMRpro]

Yes, it looks like I wouldn't have made any of the criteria. Not even a decent ESR or CRP reading.

[PMRpro Ambassador in reply to SnazzyD]

If you have the misfortune to see him again - ask!

[SnazzyD in reply to PMRpro]

Oh yes, another statement that day was a reply to my reassuring him I wasn't getting any PMR pain. He said he would hope not on a dose that high (16.5mg)!

[PMRpro Ambassador in reply to SnazzyD]

Heavens - take him a copy of the 2015 Recommendations - where for starting dose they say "lowest effective dose in range 12.5-25mg"...

[CT-5012]

I've forgotten who said it but "it's the nurses job to stop the doctors killing the patients" 😂

[PMRpro Ambassador in reply to CT-5012]

A nurse probably...

[SheffieldJane]

Yup! Keep calm and carry on as the. Poster says.

[altywhite]

Oh dear, but you sound like you handled it really well!! They do have their tick boxes don't they? But he did sound as though he listened a bit.....maybe he can learn from you?? Positivity and onwards and upwards!!!