Just don't know what to do with myself

[Body_bonkers]

Was supposed to see the rheumatologist a month after first appointment but now it will be 14 weeks and a rheumatology nurse cannot phone me back for 6 weeks so have no choice but to see the GP on Monday. Been following tapering instructions to take me down to 20mg only but unsure how to proceed now.

For those unfamiliar with my 'bonkers' dosing regime here it is: 1 week 40mg, 1 week 35mg, 1 week 30mg, 2 weeks 35mg, 3 weeks 40mg, 4 weeks 50mg, two weeks 40mg, 2 weeks 30mg, 3 weeks 20mg. The result of this has panned out exactly as PMRpro and DL warned - inflammation out of control leading to rheumatologist questioning PMR diagnosis. I’m sure the only reason I got the rheumatologist referral in 4 weeks was due to me making a fuss about missed GCA symptoms (thanks to this forum) too.

Virtually all the stiffness and 90% of the pain went away in the first couple of weeks of Prednisolone. Thankfully about 80% of the pain is still gone but stiffness more like 50% now. My shoulders have been most consistently affected but there is resistance in my upper legs too. I had a stressful few days last week and hoping that explains the return of the mild fever, slight jaw pain and temporary headache. It is beginning to impact driving, getting up. climbing stairs etc. again however. As tapering happened so quickly, I have no base line to compare too (is getting back to 90% even realistic ?) and when the stiffness went down to 70% the GP just told me to accept it.

Cannot trust any of the GP’s at my surgery and need to at least have an idea in my own mind what should happen next so been mulling over options:

1. Increase (10mg was mentioned by the rheumatologist but did not state duration) - not withstanding the dilapidating side effects, I'm concerned that every previous increase has halted decline only. Feel the inflammation has always been one step ahead and can't help wonder where I would be if the dose had been pushed up further before starting to taper again.

2. Do nothing and stay on 20mg for next 6 - 8 weeks until next appointment. Not sure this is even and option to be honest as already accumulated total of 4.78g of steroids in just 4 months.

3. Carry on decreasing - rheumatologist wanted me off steroids as soon as possible anyway as questioning diagnosis (I have very little doubt however). Although nothing has been said, suspect the recommended checks for steroid sparing agent have already been done based on what I've read on the NHS website. Believe the next taper might be 2.5mg every 3 weeks until 10mg reached - does that sound right ?

My cognition/judgement is impaired by these steroids so you’re all probably shouting at me to go with option 1 but any advice on how I can make this better would be appreciated e.g. any benefit in increasing more than 10mg or do I really need to think about steroid sparing agents now ?

[DorsetLady PMRGCAuk volunteer]

Not shouting, but I would go for option 1….

So in the absence of advice from elsewhere , I’d be inclined to go up to 30mg for 2-3 weeks, and then if things have levelled out try a step down to 25mg for similar timescale, by which time [hopefully ] someone in the Rheumy department will have got their act together …..and deemed to phone you.

[Body_bonkers in reply to DorsetLady]

Thanks DL. Unfortunately it is not just a case of getting their act together but simply no staff available too

[Bcol]

Completely agree with DL, up to 30mg for three weeks and that will, hopefully, give you a stable platform to start a sensible taper down from. Try and write down a list of any questions and your planned tapering programme (plenty of examples in FAQ'S), so that when/if Rheumy/nurse does contact you you have everything in front of you.

[Body_bonkers in reply to Bcol]

Thanks Bcol and yes the phone is now my second brain - everything gets written down !

[123-go]

I’m also in agreement with option 1. DorsetLady has personal experience of GCA and is extremely knowledgable.

My opinion on a 14 week wait for a second appointment when you have GCA is that this is unacceptable and I am shocked that the rheumy nurse cannot ring you for 6 weeks! I suggest you ring the PMR/GCA helpline to talk particularly about this aspect of your ‘care’. 0300 111 5090.

Please let us know how things go.

[Body_bonkers in reply to 123-go]

To be honest I’m a bit worried the GP will want me back on 50mg to cover themselves. Nothing any of us can do about staffing issues but thanks for the advice 123-go

[123-go in reply to Body_bonkers]

You are right- there is nothing we can do about staffing issues but, and this is a big but, many of us on the forum have learned (some the hard way) to advocate for ourselves. If that includes contacting other connected organisations so be it. However, whether you do that or not is absolutely your choice and I respect that while chancing my arm ( 🫣 ) and pointing you to one more link to NHS Wales and its treatment recommendations for GCA and 111 advice.

I do wish you the very best: you have so far had a raw deal. 🙁.

[PMRpro Ambassador]

I too would go for option 1. If the rheumy lot can't even TALK to you for 6 weeks, I don't see you have much option. There is a of of guff talked about the cumulative dose - after 14 years of pred, I'm way north of their so-called dangerous level - I clocked up 5.5g just during the first year of Covid, never mind the rest, If I were shouting at anyone it would be your doctors.

But is a single private consultation an option? Where are you?

[Body_bonkers]

Reassuring to know - thanks PMRpro and the total load will be what it has to be at the end of the day. Wanted to give the NHS rhematologist a second chance but did not envisage having to wait that long for next appointment to be honest. I’m based in Wales so options very limited anyway

[PMRpro Ambassador in reply to Body_bonkers]

It is something of a desert!!! I have lists of regions in the UK I couldn't live - Wales is high on it. About equal with Kent and that is saying something!

[Body_bonkers]

Happy days - I have consistent advice from the educated people on this forum and the GP for once ! Going back to 30mg for fortnight and then down to 25mg but will see how we go

[Body_bonkers]

Update - received copy of letter today dated 6th June sent from the NHS rheumatologist to the GP with a hand written note from a nurse apologising for delay in appointment and to stay on same dose if symptoms return (I've already increased however). Good news is that the rheumatologist now says I 'could' have PMR which has persuaded the GP too despite no material change in symptoms or blood work. It also contains an email address which I plan to abuse !

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

Now that definitely is snail 🐌 mail!…but at least a change of mind on diagnosis…

[Body_bonkers in reply to DorsetLady]

I've been fuming over that consultation for 7 weeks - getting the letter the next day would have saved a long of angst !

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

Yes it would -really not good enough..

[PMRpro Ambassador in reply to Body_bonkers]

Obviously their typists are on their holidays!! Plus the gifts of the Post Office! My rheumy writes his letter while I'm there and hands me a copy and either makes the appointment himself online or I go to the cashier's office which also makes appointments - for all over the region!

But other than that - progress!!!