I'm lost

[Sydneychihuahua]

I have only just found this site and I have been reading your stories I was diagnosed in 2020 but to this day I have never seen a GP since then. I thought you just got on with it then it goes,I have been trying to come of the prednisolone but hasn't worked so far. I didn't realise once you started tapering you need to take it slowly I have been trying to rush it. I have now made an appointment to see my GP and ask so many questions i can't believe I have been such an idiot in thinking I could handle this on my own thank god I found you all wish me luck at the doctor's

[Angelsmummy]

Morning Sydney Chi,glad you have found this site.You will learn everything you need to here from many WISE people.Dont think you have to go it alone,you don’t,always someone here to listen to you and give you help,a sympathetic ear and if you are lucky,a bit of humour.Dont be alone in this,xx🌼😜

[Sydneychihuahua in reply to Angelsmummy]

Thank you after four years you would think I should jump better,I think it was a bit of putting my head in the sand or I will blamevit on just becoming a pensioner 😄

[Angelsmummy in reply to Sydneychihuahua]

Don’t beat yourself up about it,so many stories like yours.Pretty sure PMRpro ,DL Snazzy will jump on soon to guide you in the right direction.I have been helped SO much since joining this forum,after my diagnosis of GCA,would be lost without my family on here.Keep in touch,we are all in the same boat o.k?xx🌼😜PS the name…..have you got a chihuahua?I have,feisty little wretch,but oh so loved!xx

[Sydneychihuahua in reply to Angelsmummy]

I have got 2 very old chihuahuas both rescues a golden retriever and a Yorkie also rescued. I live in Spain but work in England. They know I'm English so I get them dumped at my gate. It's not as bad as it was but I love them all and they are a good cuddle on my bad days as well as my good,but your right my 2 think they are rottweilers 😄

[Angelsmummy in reply to Sydneychihuahua]

Bless, a woman after my own heart.,As you say,on bad days my dogs give me SO much comfort.Trouble is GSD won’t let anybody near me when he senses I am poorly,not a dog to be messed with I am afraid.At least in Spain the sun must help with the aches and pains eh?Can tell that our weather is on the change,all my joints ache like merry hell.Anyway,welcome and keep in touch with your “ new family”,you won’t go wrong on here.xx🌼😜

[DorsetLady PMRGCAuk volunteer]

I’m sure some can handle it relatively easily - but not without occasionally seeing a GP.

As you were diagnosed in 2020, I’m guessing that with the whole Covid situation you never got into the normal routine of regular contact with a doctor, and like so many others left to do your own thing.

Now you have found us, you aren’t alone.

[Bcol]

Welcome to the fold. Alone no longer.

[PMRpro Ambassador]

It is appalling though that they have been handing out pred without making ANY checks - weight, BP, cholesterol and blood sugar levels should ALL be checked at least 6 monthly when they should also be looking at medication reviews. Like DL, I assume that you got lost in the Covid mess but it is time for your practice to sort themselves out.

And a suitable point to link this post about a DVD made by the NE of England charity some years ago. It's mainly for family and friends to understand PMR and GCA but you'll probably benefit from it too - it is called "You are NOT alone"!

healthunlocked.com/pmrgcauk...

[Sophiestree]

I don't think you are the idiot. I would say the GPs are the ones that should be looking at themselves, although I am confused if you are living in Spain how you have a GP in the UK.

[Sydneychihuahua in reply to Sophiestree]

I live in Spain but work in England I'm a live in carer so come over for 4 weeks to work then back to Spain for 6 weeks. I still pay my dues in England. I moved to Spain 20 years ago because I broke my back and the hot weather was so much better for me. I'm absolutely fine now you would never no I sound like a walking disaster 😆when I go back to Spain my husband comes over to look after our gentleman so we take it in turns as one of us is always at home to look after our animals it works for us

[Sophiestree in reply to Sydneychihuahua]

Gosh, that's tough. And it means you don't get to see your husband at all.

I hope the doctor sorts you out.

[Sydneychihuahua in reply to Sophiestree]

Yes let's hope so apparently I've been triaged now waiting for a txt to say when I can go🤞

[PMRpro Ambassador in reply to Sydneychihuahua]

I live in Italy and have done for 16 years - I pay taxes in both countries as per the agreement - but I wouldn't want to live here and have a doctor in the UK, the treatment I have here is far superior to anything I could have in the UK. Two of my medications aren't available to patients with PMR in the UK - and they are the two that keep me stable and free of PMR pain. The pain I have is due to other things and we are finally getting on top of that. I had a routine consultant appointment yesterday - we discussed one part of the pain which the Pain Clinic and rehab/physio didn't manage to sort - so he gave 2 steroid injections there and then. I was with him nearly an hour - would never get that in the UK. And the pain is markedly better already.

[Sydneychihuahua in reply to PMRpro]

I totally agree with you Spain is s lot more supportive but I'm to scared to let the doctor go in the UK just incase I'm probably being silly it just feels like a safety net

[PMRpro Ambassador in reply to Sydneychihuahua]

If you have a good one I suppose it is reasonable. But the one I experienced in the UK just before moving here was rubbish!! When I do, I will be returning to a different part of the UK so starting with a new one with no control over who. Currently there is effectively no rheumy dept at the regional hospital (they all retired at once so one agreed to postpone his retirement to help out) and the other likely option is in special measures ... I have to work out how to hang on to this one as MY safety net!! I'm on a biologic, I have to have a consultant and it is a bit iffy if I will get to continue it in the UK.