No call back from rheum nurses and my gp seems rather unsure!

[Bon1]

Hello all. I don’t know what I would do without this site!

In brief I am having a bad flare: the worst in well over a year. This is probably my karma for daring to dream that I would sooner rather than later be off prednisone.

I can’t kid myself anymore that it will sort itself out and I clearly need to up the steroids. I’m currently on 5mg per day.

I know that there is a certain amount of days where you can jump up in dosage and then just jump back down without having to taper down at a snails pace all over again.

Do any of you have experience of doing this? If so how high did you jump and for how many days? And did it help ?!?!

I feel like gps hand over all this stuff to rheumatology, and now I’m in limbo.

Much love to you all

Bon

X

[Stormpetrel]

Dear Bon 1

How annoying not to get the advice you really need

I guess a lot of the answer is in your history with steroids. How long have you been on 5mg? And what is the maximum dosage you have taken? That has worked in the past?

I am not in anyway qualified to say but in lieu of not getting advice today I would up the dose definitely to 7.5 anyway. Although this might not do much you are on your way to building it up higher to get some relief. Get back on that phone tomorrow to rheumatology team AND your GP he will have to step in if you can’t get a response and that’s for sure!

Good luck

[Bon1 in reply to Stormpetrel]

Thanks so much for your reply SP. I’m going to follow your advice..just can’t face the loooong sloooow taper again.

[sjhewitt42]

What is it with these Rhumatology departments.. mine never call me back and in times of desperation we need to talk to someone. Keep calling them until they sort you out. Hope it’s sooner rather than later for you. Sarah xx

[Bon1 in reply to sjhewitt42]

Thank you! I know they are overstretched and I am grateful to my rheum department but I am not looking forward to feeling poop again tomorrow! If I’d spoken to them today I could have the psychological comfort of “a plan”😀

[Bon1]

Thanks Ajay. Yes ive heard of this shared care thing and I know some patients at my surgery are primarily under the gp rather than the hospital- which is why I’m a bit confused as to why gps seem so tentative when it comes to advising about heavy meds like mtx etc. And it’s not as though they don’t prescribe plenty of Pred for asthma etc!

[sunnyweek]

Hi Bon1

When I rang my helpline about a bad flare the nurse had a word with my rheumatologist. I was on 5mg a day prednisolone and the rheumatologist said I'm happy for her to have 15mg a day for 5 days, 10mg for 5 days, then back to 5mg, to get it under control. At my next appointment he also mentioned this in his letter to my gp. I have found it does help to increase to at least 10mg for a few days to get hold of it if you don't want to go any higher. Hope you soon feel better, Jean x

[Bon1]

Aha! This is great thank you! I knew it was doable. I actually went to my very knowledgeable pharmacist round the corner this evening and he said that you can go 5 days on an increased dose without needing a lengthy taper. I was thinking of hitting 20mg for a few days and then dropping back. Thanks again for your response. And by the way - did that work when you did it ?!?

X

[sunnyweek in reply to Bon1]

Yes it did work very well. I'm actually doing it again (10mg) now whist waiting for a date for retuximab.

[oldtimer]

If it's any help, my rheumy says that I can double the 5mg prednisolone to 10mg for a week, then just go back to 5mg. I do find that I have problems for the couple of days after I drop back to 5mg, but it's manageable.