Rheumy appt....fighting my corner..

[Temoral]

Hello fellow warriors...tapering at 8.5. Rheumy appt last Friday...I have calmed down. Knew it was going to be difficult when he was 45 mins behind and rushed down the corridor with me following. To summarise, I had listed the symptoms which had caused me to slow the taper down, using DSNS, at which he glanced, then dismissed as nothing to do with GCA...and that tapering problems we're only common at 5mg, then said sometimes we just have to 'tough it out' . He also said that people come in with a 'report' or an article from the Daily Mail, whereas he has 20 years experience etc. and that my GP had a typical knee jerk reaction to up the steroid dose (by 1mg...)I took a deep breath and calmly informed him that I had not read the Daily Mail, but had been looking at renowned articles and listening to webinars by Dr. Muhktya.!!..after more discussion, I was able o compromise on the DSNS taper but not quite so slow, and if my symptoms became unmanageable again I should ring him and he would arrange an immediate ultrasound to ascertain the cause. So, a good conclusion, but we have to fight our corner...with confidence gained from this forum and the charity. I know what your reactions are going to be...but actually this is a positive outcome 🙏

[jinasc]

Keep on educating him.....................only way forward - patient power.

[DorsetLady PMRGCAuk volunteer]

As long as you feel it was a good outcome -good.

Won’t comment on his comments -other than to say the DM is not all bad! ..they do have an interest in GCA/PMR -as I know from personal experience -they did cover my story early days.

[Temoral in reply to DorsetLady]

Yes...agreed.

[PMRpro Ambassador]

Shakes head sadly!!!!

"tapering problems we're only common at 5mg" - REALLY? How often has he personally tapered pred for GCA?

[Temoral in reply to PMRpro]

He's a one size fits all guy, obviously PMRpro. But maybe he will look into it after the conversation. I just feel for the patients who haven't found this forum with all the research and information from 'patient experts' . Thank you again 💓 all of you who keep us informed.

[cycli]

echo that and PMR's comment. They need to know. Dr Plant asked for detail of my flare and suggested that it could also be a steroid withdrawal symptom, which I accepted as a possibility. However I did detail the symptoms and he had to agree it was consistent with a flare of GCA. He did say that sometimes the withdrawal symptoms can last for 2 weeks but if longer then it was unlikely. He also conceded that toughing it out for two weeks was not something he would have to endure and was not insistent. I gave him a wry smile and told him that it got to a level even I couldn't tolerate after giving it a go for 6 days and eventually had to up the dose of pred. to a level where the pain went away. That was under the previous Rheumy. who wanted a faster reduction than I could take. It sounds like your rheumy. needs a dose of experiencing first hand what we are fully aware of. It would help so much if they would listen harder and pontificate less. God syndrome I'm thinking.

[Temoral in reply to cycli]

So agree. 😉

[piglette]

Toughing it out is an absolute no no, one does wonder how many cases of PMR some of these rheumatologists have come across, either that or they have an awful lot of patients in considerable pain who do not complain!

[Temoral in reply to piglette]

Well, if he didn't know it before...he knows it now ! Thanks for your reply.

[piglette in reply to Temoral]

Well done.

[cycli in reply to piglette]

I honestly think the latter must be the case piglette. People in general don't like to challenge the expert even though they know the consequences. They feel that it will affect them negatively if they don't do as the expert says because they are the experts.

[piglette in reply to cycli]

Totally agree, and people really suffer because of it.

[Nextoneplease]

Oh Temoral, what a ‘consultation’ 😳 I’m frankly angry on your behalf that he should take such an attitude. Well done you for speaking up and getting a good outcome 👏👏But it shouldn’t be this way, should it?

All the best to you xx

[Temoral in reply to Nextoneplease]

Hi Nextoneplease...no it certainly should not. They are supposed to be CARING professionals. Thankfully, my GP is just that ,always listens and is passionate about his patients' health. I hope everyone has at least one doctor they can rely on. X

[Jackoh]

As someone said “ God syndrome “ sums it up really. Glad though you held your corner and are hopefully now on a better standing to express your needs. X💐

[Zebracorn]

Your experience was interesting to read. I have been on the other side, always pushing for the taper. Now I am at 1 mg and suffering but in denial. My rheumatologist said don’t be a hero. I’m finally willing to go back up to 1.5 and realizing this might be long term. 3 years in.

[Temoral in reply to Zebracorn]

That's good that you also now have made strides with your Rheumy though. We all want to be off steroids and are involved in our individual way of doing it. Good luck and best of health to you x

[Grammy80]

Congratulations!! You stuck to your guns and have many in your corner!! You handled the situation so well, now he is a bit wiser after talking with an educated patient. 😊👏🏻💕

[Temoral in reply to Grammy80]

Thanks Grammy...ready to do it again...hoping it will filter through to every patient..especially those who find it difficult to speak up. All the best to you x

[Grammy80 in reply to Temoral]

In 2019 I was not only uninformed about GCA but intimidated by some doctors....when you are armed with some knowledge and supported you are empowered. It absolutely has made a difference in my treatment! You go girl!💕

[Temoral in reply to Grammy80]

You too...💪💞

[Ronzy]

Like your stile fellow worriers 👍 it is a bloody battle 🤷🏽‍♂️😱😩 All the best with it. 🍀🍀🍀🍀🍀🍀🍀🍀