pain coming back

[Tiredcat]

Hello all, I read all the posts every evening, and appreciate all the help given by the experienced and well informed people on the forum.

I was diagnosed April 2019, after wonderful result from 15 mg pred, all went pearshaped when my GP reduced me to 10 after only a few weeks. I went up to 60mg as it seemed I might have GCA, though the biopsy proved negative.Since then I have reduced with only the odd twinge of pain, though I have ongoing fatigue, at times quite profound, and my walking is very poor, I use a stick.

Now I am halfway through a reduction from 7.5 to 7mg using Dorset Lady's slow taper. I have been reducing this way by ,5mg since 10 mg. There has been little stabs of pain, but as of last night I am getting some real PMR type jabs in my upper arm. I am very nervous of going into a fullscale flare, which I haven't ever experienced.apart from the drama at the beginning,after the drop from 15mg to 10mg, which wasnt pain but extreme fatigue. So the question is, should I go back up for a few days and if so, by how much? It seems from what I read that some people put up with quite a bit of pain before they think it's worth upping the dose.

I know you are answering this question all the time, but now that it's me asking, I am not quite sure what to do.

[DorsetLady PMRGCAuk volunteer]

I would stop taper - try 10mg for 5 days, maybe 7. Hopefully if you catch it quick enough that will do it.

Then drop back to say 8mg, really make sure everything is settled before you try tapering again.

You are entering the realms of adrenals needing to wake up, so many find that a bit more difficult, so if you are using the 5 week taper at the moment, it might be worth trying the 7 week one for a

few months.

[Tiredcat in reply to DorsetLady]

Thank you so much for your quick reply Dorset Lady, you are an angel.

Your advice is a bit of a shock to me, I have been so smug just gently dropping down and subconsciously thinking flares are for other people.

I will do as you say.

[DorsetLady PMRGCAuk volunteer in reply to Tiredcat]

Unfortunately flares can happen to anyone! Especially as I think you said in your other post you have been under stress - that’s probably the varmint that did it!

[Tiredcat in reply to DorsetLady]

Yes, you're right! I thought I had the stressful situation put behind me, but it's caught up with me after all.

[DorsetLady PMRGCAuk volunteer in reply to Tiredcat]

Very often happens!

[PMRpro Ambassador]

The sooner you go back to what worked the less likely you will have a major flare. There are two factors at work here - one is adrenal function needing to wake up again and the other is that you are never reducing relentlessly to zero - you are looking for the lowest dose that manages the inflammation and stops the return of symptoms. By the sound of it that is currently 7.5mg or 8mg - it doesn't mean you won't get lower, just not yet.

[Tiredcat in reply to PMRpro]

Thanks for your reply, PMRPro, I always value your words of wisdom.

[Tiredcat]

Thank you for your input Djlr. I am not sure if my question on the PMRGCA platform has also gone onto a lupus platform as well by mistake. However I found the links interesting.

[PMRpro Ambassador]

I'm sure your information is releveant to lupus patient who DO have a choice of medications that may help them However - THIS is the PMRGCAuk forum and we have no choice - the mainstay of management is corticosteroids and at the dose required to manage the symptoms or GCA patients would be at risk of irreversible loss of vision, strokes and other cardiovascular problems.

Please do not confuse the issues lupus patients face with those we must deal with and posting this here is inevitably going to confuse others.

[Tiredcat in reply to PMRpro]

Thank you, PMRpro, I thought it must have been a mistake.

[PMRpro Ambassador in reply to Tiredcat]

There have been a few misplaced posts recently - too many for me to be convinced it is thick fingers!!!! HU been messing about again ...