Rapid reduction update!

[Trixiechamp]

Hi all,

I hope you are having a good Bank Holiday weekend, just thought I'd check in and let you know how things are going, still anxiously awaiting my consultant appointment with the Rheumy at Reading after seeing Rod Hughes at Chertsey. I am currently reducing from

60mg Pred by 10mg a week...today I am on 20mg so should be on 10mg by my appointment on the 12th.

Hopefully this will enable them to get some sort of readings from my bloods, I can honestly say the reduction has been pretty awful, bad headaches and extremely fatigued, aches, shakes and pains and my hands are not behaving as they should so no intricate cross stitching or puzzle building to busy myself with even if I did them lol

I also seem to be swelling up more and more and the most annoying thing is my neck, I feel like I'm being strangled all the time but hoping this will go once the water has reduced. From what I gather these can be side effects of reduction?

So yesterday I managed to drag myself out with the family and meet up with some of my oldest school friends, they were a little shocked by my appearance but we had a fun afternoon laughing and reminiscing in the sunshine which was nice.

Anyway just to say thanks again for your continued support and advice, I have been silently watching your posts...I've tended to hide myself away as not really feeling very sociable at the moment so the forums have been a lifeline to the outside world.

Enjoy the rest of the weekend! X x

Tanya

[PMRandRA]

It is my opinion that this reduction is far too fast especially as you head towards 10! Whatever you do, don't jump from 10 to zero.

At no time should you be feeling bad or in pain on reduction and this can be avoided by reducing slowly, very slowly,

Good luck and let us know how it goes!

xxxx

[Trixiechamp in reply to PMRandRA]

Hi sorry should have explained, privately saw a well respected Rhuemy who doesn't think it's PMR/GCA and wants me off this 'toxic dose' (his words) asap as he feels I've been mismanaged by GP for the past 4 months and wants to start from scratch with diagnosis. Being on 60mg Pred makes this impossible. He originally said 10mg every two weeks but as I have this other appointment already booked in on the NHS we are doing the hard route of 10mg a week to try and get down before the appointment. I will not go below 10mg - this is as low as he wants me to go for now and is aware of the adrenal function issues.

It's horrible but I'm following the experts at the moment, will keep posted as to what occurs on the 12th!

X

[PMRandRA in reply to Trixiechamp]

Naughty reply coming...

If you do find a GP or a Rheumatogist who is an expert in PMR and Rheumatoid Arthritis, please let me know because I only ever seem to see "12" year olds who can't think for themselves. ie/ " rheumatoid arthritis? Here take this pill which will make you feel like you're dying!"

No, not kidding. My file has the note that I used to have PMR but is resolved. So. No treatment for that then, they are always right , like the BBC!

Right that is my gripe . I truly hope that your experts are on the right track.

All the best xxxxx

[Trixiechamp in reply to PMRandRA]

The guy I saw was recommended by a number of people on here so I can only go by what they have said...the GP may as well have sent me to Tesco for a diagnosis as useful as it was....(two years of it's your age, you're an anomaly blah blah) I am hoping that the appointment on the 12th will go well but if I'm not confident I have the option of seeing the consultant I saw privately on the NHS so that gives me some hope! X (he is not in my area). He actually thinks it's more RA than PMR...who knows?? Someone I hope!!

[PMRandRA in reply to Trixiechamp]

Smashing, that Rheumy, whose name escapes me (I blame the steroids) is brilliant and will sort you out.

Can't wait to hear the results! 🙃

[PMRpro Ambassador in reply to PMRandRA]

I would trust the guy Trixiechamp is seeing - we're involved in PMR research projects together. There are a couple of others I know through the research - and I'd trust them too. They are all good rheumatologists - which is what is needed - and I know there are other equally good people in various hospitals around the country.

[Freddie01]

Hi Tanya my reduction from 60mg was 10mg every 2 weeks, when I got to 10mg I reduce the dose by 1mg every 4 weeks. I am on 5mg and some days worse than others with headaches, sweating, pain in tongue, tiredness. I have an appointment with my consultant next week so will stay on the 5mg until my appointment. Take Care x

[Jackoh]

Hi just been reading your previous posts and imagine it has been so difficult to reduce the way you have been asked to in order to investigate diagnosis. Keep in touch and let us know how you get on on 12th

Jackie x