Am I having a flare up?

[Jamie345]

I have been going really steadily and not feeling to bad while tapering down I've just got to 6 m and today I awoke with a stiff/sore neck headache slight pain in one shoulder, I don't know if this is a flare up and maybe I should go back upto 7m my eyesight is very blurred today- I have cataracts waiting for my left eye to be ready until then I can't get on the list apparently I'll see if it becomes more clear tomorrow if not I can go, I'm just wondering if it's the GCA PMA , as well, I started nearly two years ago with these symptoms which slowly got worse with my ribs feeling they where being crushed etc., can anyone advise me what assumption I should make? Please regards Glenys

[PMRCanada]

Certainly sounds like it could be the beginnings of a flare. Given your increased blurred vision I would consider upping dose and getting in to see GP, Rheumy, or Dr. at hospital asap. I only have PMR, not GCA, so others with both may post on here soon with more detailed response.

I did have one flare and it felt like increasing inflammation and stiffness 3-5 days after I lowered my dose. Had to go back up 2.5mg for 5 weeks before trying to reduce again, in smaller incriments slower pace.

Hope you get some relief and medical attention soon. Let us know how you make out.

[Jamie345 in reply to PMRCanada]

Hi there thank you for your reply so quick and all the info I think I might have to go up to 7mg but I wonder if I put up with this pain see if I can master it thru maybe I can continue, I need to get of the predisinone so the rheumy can treat me with some other medication but cannot have it while on steriods, he's a new rheumatologist highly recommended he feels that there is some other disease there. So confusing! But again thank you regards Glenys x

[enan-illuc]

Jamie345,

I am not a medical expert but I have both GCA and PMR and it has the markings of a Flare. One way to find out is to take an few mg of Prednisone and see what happens, that is what I do. No matter what your results see your Doctor just to make sure. I hope this helps.

[Jamie345 in reply to enan-illuc]

Thank you so much for your quick reply I thought the same I might have to increase back to 7mg I was so happy to have got this far without being ill, but I will call on Monday morning, it helps to hear any kind of assistance in this situation, kind regards

[SheffieldJane]

My personal experience of your stage of a taper was that I was over cautious, going back to the last dose at the first twinge. I think that made me take longer than I needed to. Mind you I am 6 months further down the line than you and finally on 6 mgs. Give it a few mindful days and see if it settles. Good luck with your operation! You may go up a bit to support your body through that.

[lyndamcw]

It may be a flare up.. Three times now I have got to 7mg then bang flare up. It seems I reach that level then it all goes wrong with both the pmr and the gca. I am two years into the journey...

[Joydeck in reply to lyndamcw]

I effortlessly tapered to 7 mg mid July, 9 months after PMR diagnosis. Since July I have twice dipped to 6.5 mg but worsening PMR symptoms forced a retreat a week or so later.

It seems 7 mg is some kind of barrier for many of us.

[piglette in reply to Joydeck]

7mg does seem to be a barrier for a lot of people it seems. Don’t worry you will be able to reduce, just not today. You have got to the point where your own body needs to produce some cortisol rather than relying on the pred too.

[Joydeck in reply to piglette]

My 50:50 split dose may not aid cortisol production, but a single dose doesn't last 24 hours.

[arthur463]

I so sympathise with you Jamie. I have GCA - lost the sight of my right eye. I am down to 5 mg, as of today. Every ache or itch is enough to get me wondering "Oh God! - is this a flare?" Sheffield Jane may be right, and I may be over-cautions. But I only have one eye left. I guess that there are a lot of uptight Ballerinas on here with the same quandary as us. Someone else above suggested that if you are in doubt, take a bit more, but I too need to get off it - It's already given me diabetes 2 and osteoporosis.

I have been coming down at 0.5 mg per fortnight. Maybe I will reduce to 0.25 if I can cut the tablets into quarters!

I could see my Doc - but it turns out that he knows considerably less about GCA than I do (thanks to this website). Otherwise he wouldn't, have misdiagnosed me and let me lose an eye in the first place - would he?

So what should you do? Maybe go up a fraction - say 1 mg - pause and study for a week for effect - then, all being well - come down even more slowly.

Anyway - Good Luck!

[Jamie345 in reply to arthur463]

Thank you Arthur for your reply, I have also developed osteporisis and I think we have to watch out for ourselves nowadays as my GP made similar mistakes but not as bad as losing my eyesight in one eye, but I do get concerned so I have an appointment at specsavers tomorrow to see if I can get my cataracts done, my flare up was mainly headache shoulder and neck plus at its worse my eyes went very bleary, a friend of mine who's brother works with medication of all variety said that the main ingredient we need in our pills are at the centre of the pill so not to break in half as you will lose the effect of the drug! I'm going to carry on at 6mg and I also go down fort nightly, so good luck in your tapering and hopefully you will have no more problems,

[arthur463 in reply to Jamie345]

Thanks for that Jamie. I am pretty sure your friend is not correct for most pills - certainly not for steroids, since the 5 mg ones have a split line across them for breaking them in half.

[PMRpro Ambassador in reply to Jamie345]

"a friend of mine who's brother works with medication of all variety said that the main ingredient we need in our pills are at the centre of the pill so not to break in half as you will lose the effect of the drug! "

Not true Jamie - the manufacturers make up a massive batch of the mix and it is dispensed to form pills, just like you would use the same cake mix to make a Victoria sponge or cupcakes. I've heard the rumour you shouldn't cut pills if they don't have a score line, the manufacturers say it is rubbish, the pills are made the same way whether they have a score mark on them or not. And in many countries they supply a higher dose pill and if you need less, tell you to cut them as it is cheaper. It has never made any difference to me.

You mustn't cut enteric coated/gastro resistant pills because that exposes the drug to your stomach acid. But otherwise - no problem.

[Jamie345 in reply to PMRpro]

Thank you for clearing that information up for me, a problem solved, regards Glenys

[Telian]

It might be flare but it could also be withdrawal symptoms coming on so quickly after you'd reduced, if that's the case it will settle within a day or so, if the symptoms are too much then go back to 7mg and stay there until all subsides which might take a while but just be patient - then try a .5mg reduction. I have to go this slow now - it does get harder for some as they get lower.

[Joydeck in reply to Telian]

At 6.5 mg, I too considered the possibility of pred withdrawal pain but my symptoms gradually worsened, over several days, becoming increasing bilateral. The pain was mainly in the shoulders.

[Telian in reply to Joydeck]

Hi Joydeck

Have you recently reduced? If so it could be withdrawals. I've always suffered them and for me they take up to a week to subside, they are the same symptoms so is scary. I take paracetamol to help deaden the pain, nothing takes it away totally, but it helps me get through that nasty stage. If the pain continues for too long the advice is to go back to the previous dose you were pain free on and stay there until all symptoms have subsided before starting another reduction - and then only by .5mg would be advisable. A flare usually comes on out of the blue and does not ease in any shape or form. Do you have GCA?PMR?

[Joydeck in reply to Telian]

I have PMR only, and my two pred tapers to 6.5 mg began in late July and late September.

Following the July taper, PMR pain lasted a fortnight before I dramatically increased the pred, and persisted another fortnight; in September, the pain lasted only 6 days before a pred hike, and persisted another 3 days. Both tapers were by 0.25 mg increments.

[Telian in reply to Joydeck]

The lower you get the slower it has to be - you might need to stay on a dose for longer each time but that way you won't be yoyoing back and forth, which in the long term gets you there sooner - tortoise hare comes to mind...... Sounds like you're getting to know your body well - just be patient and you'll get there.