Angel54

[Angels54]

Advised by Rhuemy nurse to contact GP if can increase prednisone as massive flare up, GP said not up to him rheumatologist needs to sort it , GP supposed to be by next port of call if poorly , any advice?

[lilyak]

Hi Angel54,

That's a tough position to be in, and I'd say your GP has let you down. I suggest you call you rheum nurse back and tell her GP won't manage the prednisone, and ask for instructions from your rheum. And while you're at it, get instructions for the next time. Your rheum should write to your GP with instructions on how to handle flares. Not much help right now, but you can put this in place for the future.

O

[Esmereld]

in my experience, your GP is right. Rheumatologist dept needs to write to GP. He/she needs formal instruction. As I say, that’s my experience. My GP wouldn’t even increase my folic acid without a letter. It’s a pain in a way but they have their procedures.

[Deeb1764]

my GP sorts my pred and also gives me enough so when I have a flare I up the dose in 5mg units BUT also knows I will reduce as soon as I can as well. It all depends on GP or Rheumy how they work In Your area.

I am very lucky with my GP he helps a lot!

[Lone-wolf]

Hello Angel54, I have an agreement with my Rheumy that in the event of a flare, I am currently on a maintenance dose of 5mg Preds, I can self manage an increase upto 20mg as necessary until the flare passes and I can reduce again to the maintenance dose. In every instance that occurs I just inform the Rheumy's admin whopasses on the information and if thought appropreate she will contact me. My GP will prescribe any extra prednisolone as necessary so that I always have a backup supply just in case.

[sylvi]

My drs are the same they always tell me to call my rheumy team as well. It is a shambles to be honest. I rang the rheumy about my hip after a trip to A&E and she managed to get me a physio apt. last Tuesday. That wouldn't have happened if i had rang my gp. xxxx

[Caza]

I’ve had the same reply as you from my gp. I had a horrendous flare & despite my rheumatologist writing to my gp saying could they give me a steroid injection when needed, the answer was no. My gp wrote to my rheumatologist saying he wouldn’t give me an injection & that it was down to the hospital to sort it. 5 weeks no reply. It turned out that I had a sinus infection which was causing the flares. Which was diagnosed by me. I feel totally abandoned by the nhs.

[helenlw7]

I’m under shared care between my gp and the hospital, and have been since 2004. He knows I am capable of managing my pred during a flare and also that I’ll gradually reduce back to my normal dose. He also manages my folic acid, originally prescribed by rheumatology, the1 a week dosed increased to 6 a week.

[Runrig01]

I agree with your GP that it is really up to your rheumatologist to sort. If you have a shared care agreement then it could be added to that. Prednisolone is a drug that is handed out too easily, with little thought to the side effects. I had a severe stroke caused by my adrenals atrophying and not producing its own cortisol, due to taking prednisolone. I now have life threatening adrenal insufficiency, and have to carry an emergency intramuscular injection of steroids, which immediate family have been trained to administer, so far I’ve had to use it around 10 times. Unfortunately I had no choice as I was taking it for polymyalgia and GCA, where pred is the only treatment. Others with AI have only used it for like 4 week periods and developed AI. The reason we taper off pred is because it puts the adrenals to sleep, and needs to be coaxed to restart producing cortisol, unfortunately some won’t restart.

It would make more sense for your team to provide you with a rescue pack to use, and then just contact them to let them know you’re using them, then they can reissue more for the next time. I have AS and my rheumatologist refused to look at my hands and feet, until the gp had seen them. Gp was furious, as that’s his job dealing with joints, and caused me months more suffering, till I seen him again. In my case hands and feet were due to my AS. Personally I feel rheumatologists should do the initial prescribing, and formally request the gp to continue it. Phone the nurse back, and explain and ask if they can send a prescription through to your pharmacy.

[cyberbarn]

There will be a shared care agreement between rheumatology and the GPs and it may vary in different areas. Try to get hold of it in writing. I have a copy of ours on my GP medical records. Everyone should have access to their own records through either Systmone, EMIS or the NHS app. It should also be publicly available on the hospital's website.

Once you have that you can hold to account the GPs that are refusing to do shared care, or the rheumy that is trying to put some of their work onto the GP.

I had to use ours this week to get the GP surgery to do the right blood tests. Yep, the shared care agreement is in my notes, but I still had to show them the print out of it!

[wilbertjellyfish]

This is so frustrating for you. My GP has no notion what does steroids I'm supposed to be on and regularly prescribes the higher dose so I usually have spare for when I need a temporary up lift. I'd suggest if you can't get the rheumatology team to address it get an appointment with the GP explain you are in significant pain and ask how they intend to address this

Fingers crossed your flare subsides.

[janmary]

as far as I know it depends on the contract your local CCG has with rheumatology - some areas arrange shared care protocols- in some areas ( like mine) rheumatology is responsible for all relevant medication once a patient is in their care. Practices can fall out with specialists for ‘overstepping’ - all meant to be safety measures.

Drs don’t have as much prescribing freedom as we think…

[Mmrr]

My GP who is very good with shared care, will not up my steroids. I usually just up them myself when in a flare, say over the weekend and rheumatology are not available, then contact Rheumatology and tell them what I have done. Rheumatology seem quite happy with this, but you would need to check with yours what you should do.

[Pulfs]

my GP the same only prescribed meds when contacted with rheumatology also has stopped giving steroid injections as they found most of their was being taken up with doing these so have to go to hospital when needed .

[oldtimer2]

Both my GP and my rheumy team leave it up to me which I do find a bit challenging! I have an extra supply of prednisolone and can increase it to 20mg and than tail down, but I rarely go as high as that - 10mg usually does the trick. My partner is often saying to me that I need to take extra, but I do try and avoid it as I'm so aware of the longer term risk of adrenal suppression.

[Haz58]

In my opinion your gp is wrong. If you are on shared care that's the whole point of it. My GP prescribed Prednisolone a week ago as I was having a massive flare. He could see on my records what the Rheumatologist had given me previously plus the Rheumatologist and Rheumy nurse always writes to help m to keep him up to date as what happened at any appointments. Good luck I hope he changes his mind.

[Angels54 in reply to Haz58]

Hi I feel the same , I live 10 min from gp surgery, 60 mile round trip to hospital consultant, I am now on two walking sticks , couldn’t even get out of bed , all I want is medication, haven’t injected for 4 was due to UTI , where is the support ?

Thanks everyone , 👍

[tanya1981 in reply to Angels54]

this is a joke and absolutely shameful to leave you in such position! Do you actually have a shared care plan?

[Poshcards]

Hi, I always get same reply...:ring your consultant' ! xx

[Lolabridge]

My GP will not prescribe Prednisolone without a written instruction (letter or email) from the Rheumatology Consultant.

[Angels54]

I was told by my GP my UTI says as expected, asked can I inject advised it’s up to me , Sunday I injected , received a text saying a recent lab test has shown infection collect antibiotics , this will be my 4 th box , not good , not happy 🤦‍♀️