I feel a bit left to my own devices but I'm not worried

[MiloCollie]

Started pred 15mg on 23rd April, stayed on this for 6 weeks (a bit longer than I was advised by GP but I had a fall) then went to 12.5mg for about 6 weeks, now on 11mg since 3 dys ago ( my own dosage because I was scared to drop from 12.5 to 10). Feel ok at the moment.

I had a phone appt with rheumy on 23rd June and I could hardly hear a word he said and he was getting annoyed with me keep asking him to repeat himself so I just shut up. As I Nurse I did catch some of it but not all. I told him I was taking vit D and calcium and magnesium and omega 3 fish oil which he grunted in agreement with. Since then I have had a chest xray and he has just sent me a blood card for a whole array of things and his handwriting is worse than his speech! I hope the phlebotomist can read it better than I can. I think he has asked for a dexascan too (which is very likely)?

Luckily I had a call from my GP who knows me on the same day about an elbow injury and the need for an MRI for that and I ran the rheumy "talk" past her. I told her that Rheumy wanted me to get to 10mg asap but I told her I was going away for a week and wanted to stay on 12.5mg until I came home - she supported that and I did just that and so far so good. I just tell my surgery to order me which strength tabs I need next and they give me them, so in some respects I suppose it's good to be in what feels like sole control.

I've been obsessed with my elbow/arm injury which is now improving and by the time of my MRI on Aug 2nd I know will be better still but my GP still wants me to have the MRI to assess if any treatment will be needed.

I'm also trying to get my deferred NHS pension early on ill health and this is taking forever! I am constantly chasing people(mainly GP) to complete forms etc and it's all done by post or phone. In summary since April 19th I have been provisionally diagnosed with PMR, had a serious elbow injury, have become unemployed and have 30 years of NHS pension just out of my reach which I am fighting like hell for. All this and I haven't SEEN a soul. 😊This group keeps me sane and thanks for that.

I was thinking to stay on 11mg for 4 weeks then go to to 10mg. Do you think this is a fair plan?

[DorsetLady PMRGCAuk volunteer]

Last paragraph - yes it is a good idea! But listen to your body and if you don’t feel okay, back up to 12mg - you have a lot of stress at the moment….and PMR just loves stress!

[MiloCollie in reply to DorsetLady]

Thanks DL yes I MUST watch the stress. The pension thing affects the rest of my life so I'm obvs very concerned about this. Thanks again, x

[SheffieldJane]

I think it sounds like you are in excellent hands - your own!

[MiloCollie in reply to SheffieldJane]

Haha great! Thanks.

[Bcol]

Morning MC sounds like you are coping really well, particularly with all stress that pension worries must be causing. Being left to it does have some advantages, same postion myself, particularly as we have the wealth of experience here to help our journey. Hope you manage to get the arm/elbow sorted which will be another worry out of the way.

[Suffererc]

Have sympathy with you over not hearing what Rhuemies and GPs are saying. I am hard of hearing and lip read which means I see very well expressions on peoples faces. I tend to shut up to after the third pardon

[PMRpro Ambassador]

I think your plan sounds a good one!! There seems to be a generation of rheumies that is hell bent on getting patients to 10mg come what may - and they are increasing. There is a movement to educate GPs but Covid put a spanner in the works but Ilm beginning to think it is the rheumies who need a bit of working on. They seem to either be good or awful with little in between,

I would refuse to speak to the rheumy again except f2f and I would also complain. They are choosing to use the telephone and it isn't always justified. Here in northern Italy I can see a doctor if I need to - I do lots by phone but sometimes it isn't enough. If they insist on the phone, won't use video at least, then the conversation must be intelligible to both doctor and patient or it is pointless. I particularly struggle on the phone with non-native English speakers with a strong accent or who insist on speaking local dialect here! I prefer using chat functions because I can type very quickly but that isn't an option for medical things.

As for the pension thing - all the very best. We had that fight when OH retired perfectly reasonably in line with the rules but they needed to be sure he'd retire on enough to live and took over 6 months to work out what we had done using their online tool in 10 minutes! He did get a written apology - but it meant I will lose out on his death because he retired after a particular date and the house sale was delayed and the market had bottomed by then ... However - our retirement has been fine and we even save out of his income so it must be enough!!!

[MiloCollie in reply to PMRpro]

Oh I’m glad it worked out for you. Thanks for sharing that. Nothing is straightforward and it’s very stressful. Thanks for your support.

[PMRpro Ambassador in reply to MiloCollie]

I blame Gordon Brown - his robbing the pension fund for other uses made it all more complex ...