I know there are some people out there who independently (with the blessing of rheum or GP team) do a short steroid hike when you flare. For the first time in years my knees have swollen and it doesn’t seem to be settling.
I’m due to start a new drug but the false starts and delays (as well as sadly the mistakes by the consultant) are agonizing.
I don’t think I can hold on and equally don’t think I can face the pointless blood tests( these days doesn’t show inflammation) and waiting to hear back from the nurses.
I’m thinking about going solo. Could anyone share what dosages they use please?
Thanks in advance
Bon
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Bon this isn’t something we can do, you do need to talk to your doctors or rheumy nurse to get advice for you personally, which will be different to that given to others by their doctors. Please don’t take pred without getting advice first.
thanks for the reply Kitty. I know you’re right. It’s just the prospect of it all that hangs heavy…I will call the GP tomorrow- at least I can speak to them a bit more quickly!
Oh yes we are all tempted to do a little self prescribing some times, but some organs are easily damaged & it really isn’t worth taking the chance of paying for short term relief, with long term harm.
I can tell you my story , but not suggesting that you do what I do.I alter my oral prednisolone dose, but work within parameters of previous increase in dosages. I rarely have rheumatology input as the waiting time is just too long. I have on many occasions upped my dose, my nurse rheumatology helpline takes a week or more to return a call, then a day or so to get the consultants approval. It is quite ridiculous to expect people to wait 9/ 10 days with a bad flare to wait for approval in an oral prednisolone dose.
The GP says ring rheumatology and just won't approve a steroid increase.
NHS111 do not understand RA, and frankly are most unhelpful. I've been told to take an extra 1 mg by them ....yes 1 mg for a RA flare.
So, I was on 5 mgs last year. I flared and put oral prednisolone up to 10 mgs for 5 days, then reduced 1 mg per day until I was back to 5mgs. I left a message on the rheumatology helpline informing them of what I had done. They never replied.
I'm on 12 mgs of oral prednisolone just now and would require an increase to 20mgs for 5days, then reduce by a 1 mg per day until back to 12 mgs if I flared.
thank you so much Mmrr. I sort of feel I could manage this but especially now that I have the new consultant who knows! Let’s see what kind of reception I get when I suggest it 😬
I agree with what you are saying as I was left for 5 wks on 7 mg of prednisone I was in agony , now my RA is so out of hand I’m now back on Benapali but only getting about 2 day’s relief, also on 10 mg of steroid and they want me to increase to 20 mg , I think my body has got used to them and not getting much relief .
it’s a very tough decision you should really contact your team but I’ve also had the flare from hell and still getting worse after nearly three months. I managed to speak to rheumy nurses and at least I can resume mtx again tonight. I had a further 3 week delay trying to get them delivered as I’ve ran out. GP would not help at all with steroids either injection or orally. I’ve got my urgent appointment through for 12th June 🙄 so I know what you’re going through but still don’t think it’s a good idea without GP or rheumy approval. So far I’ve not had any Prednisone but have been sorely tempted but not worth the risk.
It's a horrible position to be in, I feel for you. I've been on a maintenance dose for nearly 10 years & have increased it as required. The difference is I had approval from my Rheumy to do so as I thought necessary, rather than taking up a nurse appointment or seeking her approval. Not helpful for you I realise, you're in limbo & need something to bring down the inflammation & associated pain. As prednisolone is a part of your med regime it might be an idea to have the conversation, see if they’ll ok you doing the same.
I'm wondering if other options would be advisable, possibly ask if your GP Practice has a someone other than GP or nurse who can advise. I'm wracking my brain trying to think of her title but our Practice has a lady who has the authority to amend scripts. If yours doesn't maybe if you have a walk-in centre locally you could try there.
really interesting NMH. This is a conversation I need to have. It would be great if there was a GP at my practice with a special interest in rheumatology. Thanks so much for your reply
I was very fortunate when I first went to my GP with painful feet. It was a small village with one nurse & one GP & she had an SpR. I was so lucky as she suspected what it was before examining me & had diagram posters on her wall.
I adjust my steroid use myself… they know…. I am a RN, but that does not matter. As long as you are comfortable and know about tapering, side effects etc, you should be OK. Not advocating this for everyone, but we live with our bodies and much care these days is self care…. No nasty comments, please.
I agree. In this day and age we have to look after ourselves a little. And you have the advantage of being in “the trade” so to speak. I really appreciate your reply.
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