Update from 5 months ago and new question

[Urtica]

Briefly I had head pains and tender scalp for 5 weeks or so which did not respond to ordinary painkillers. It got so bad the out of hours GP said I should go to A&E. My bloods were normal and I was prescribed 40mg of pred for 3 days and told to go to visit my GP. (Forgot to say I have been on pred since Dec 2016 for PMR and was down to 2mg).

The headache went after a day so went to see GP who was a locum. She was very rude and dismissive saying she didn't think it was GCA - which she was looking up on computer and reading symptoms aloud whilst I sat there. She asked me what I wanted her to do? I said obviously I didn't want to have to take high dose pred but equally I didn't want to lose my sight. She gave me 2 weeks supply of 40mg pred and a referral to a rheumatologist. She said she had met loads of women who thought they had PMR and wanted to be on steroids!

I was unsure what to do so phoned optician who saw me straight away. He seemed knowledgeable and did a thorough examination and said eyes showed no signs and he thought I hadn't got GCA. So at his suggestion I took 5mg for 3 days and then went back to 2mg and didn't increase to 40mg.

I have slowly reduced to 1mg now and shall stay on this dose for a couple of months if all goes well. My next question is do (if I am Ok) just stop or reduce to alternative days?

Sorry for long post your advice is always appreciated.

[DorsetLady PMRGCAuk volunteer]

I went down to 0.5mg per day, and then using my slow taper came off that dose gently.

It doesn’t sound like much, and the doctors would probably say it’s not necessary, but personally I think the slower the better!

[Urtica in reply to DorsetLady]

Thanks will take advice.

[PMRpro Ambassador]

No, don't just stop, continue reducing and a good way to go about it would be using the DSNS approach with the new dose being no dose. Though if it were me I would go via 1/2mg too.

healthunlocked.com/pmrgcauk...

And how very good your suspicions were not confirmed - but that GP needs a clip round the ear. And a complaint made ...

[Urtica in reply to PMRpro]

I always use DSNS so will take your advice and go to half.

I have refused to see locum again but as new to this practice I didn't want to rock the boat although a clip round the ear would have made me feel better!

[piglette]

<She said she had met loads of women who thought they had PMR and wanted to be on steroids!>

Sounds to me like she is lying through her teeth. I had a trainee GP who gave me the impression she had dozens of people with PMR. I then discovered I was the only one.

[Urtica in reply to piglette]

She made me feel like I was a hypochondriac and she gave me a prescription because she thought I was desperate for more pred. It is a great pity she hadn't experienced PMR or GCA! I had absolutely no belief in her opinions.

[piglette in reply to Urtica]

What a strange individual she must be.

[Hidden in reply to Urtica]

Omg. That's horrid. To make a patient feel like that is disgusting.

One thing I have noticed since I volunteered to be a patient for student drs via my surgery is that I seem to have had better treatment. I still have issues with prescriptions etc but they seem to listen more. I also enjoyed the interaction with the students and talked about PMR and the stress of invisible illness on physical and mental health. Hopefully the system doesn't make them so cynical.

[Urtica in reply to Hidden]

My OH was with me and he heard it all so it wasn't me exaggerating! I always ask him to sit in so I don't forget what is said during consultation - fog brain !

[PMRpro Ambassador in reply to piglette]

My thought exactly!

[Jackoh]

Do understand your interaction with locum. I had the same with my old GP. Have had difficulty reducing because of head pain. One of her comments was” well you have just got to bite the bullet sometime!!” I think some of these GPS think we love being on the steroids!

[Urtica]

Too true!