Me again- flare

[Blackcatlover]

After dropping from 4mg to3.5 mg, I am having a lot of pain- neck, arms, shoulders, butt and thighs. Yup a flare. I asked for advice and have added 5mg for the last five days. Just getting minimal relief. I always have trouble getting back on track after a flare. Might it be okay to add 1mg more to see if ten starts giving me relief? Thanks so glad to have you all as a resource.

[piglette]

Yes I should do what you suggest. I do find if you get a flare it is quite difficult to get back to normal again.

[Blackcatlover in reply to piglette]

Thanks I will do that.

[PMRpro Ambassador]

I would. It is always harder to get things sorted after a flare.

[Blackcatlover in reply to PMRpro]

Thanks I think I started to notice small things when I was doing the dsns from 4mg to 3.5mg. I really think 5mg is my go to amount for the foreseeable future. Why I couldn’t just be happy with five I’ll never know. I think I just keep striving for lower and then lower. If the flare subsides I’ll need your help with where I go after the 10mg reins in the flare. Thanks so much. You are greatly appreciated.🌻

[PMRpro Ambassador in reply to Blackcatlover]

Maybe you need a "chat" with HeronNS who has also struggled with the idea of getting lower

[Blackcatlover in reply to PMRpro]

I know you always say go by your symptoms when you suspect a flare but had bloodwork done on Tuesday and my Sed was 2 and my CRP was

.6. Might three days of extra prednisone affect my bloodwork that soon?

[PMRpro Ambassador in reply to Blackcatlover]

It could - and anyway the markers can lag a long way behind if you are just on the borderline

[Bobbury in reply to Blackcatlover]

Just to put my two pennyworth in. In all the years I have had PMR I was always conscious of trying to reduce. I suppose it's my GP who drilled it into me to reduce as soon as possible as pred is not the nicest of drugs. Done I was told, had lots of flares, GP not that interested, oh just increase then go back to where you were, really! Anyway I've now got my head around the fact that I need 7mg to keep me happy and contented without no pain or flare ups and I happy to with that. To date, touch wood, no flare ups. Just though I would share that !!

[SheffieldJane]

I think your instincts are sound. I hope you manage to stop it and get back on track.

[Blackcatlover in reply to SheffieldJane]

Thanks SheffieldJane. I’m trying!

[Uisce58]

Morning-just read your message and it is resonating with me. I am also having a flare-my first- and find it frightening and upsetting. Frightening because I realise how vulnerable I still am- and upsetting as my GP has increased my steroid dose to deal with the pain. Crazy but I feel very emotional and tearful today.....

[Lori67 in reply to Uisce58]

Good morning, I am with you on this, diagnosed last June and had a few flares resulting in my GP increasing the dose, and like you get very tearful and emotional, just want to get off the steroids, but think I am a long way off that yet. Hope you feel better soon.

[Thelmarina in reply to Uisce58]

It’s like climbing a hill and then rolling to the bottom and having to climb it again! Very few of us manage without this experience. Let’s hope yours is just a hill- and the one thing PMR teaches us is patience. Think Julie Andrews’ pick yourself up, brush yourself down and start all over again’. It’ll either make you laugh or so cross you could spit - but better 😅

[Blackcatlover in reply to Uisce58]

This is one of many flares I’ve had. It is frightening because you feel so out of control. I just have to remember this too will pass. Each time I flare I learn a little more about what my body needs. I’ve reduced to a dose too low and know I need to be more patient. Your body will come around again. Just have to give it what it needs. Wishing you well.

[herdysheep]

I find I feel quite depressed with any set back. Flares are such b**s and don't always seem to follow the same pattern. It is worse if it comes after an extended period of feeling your are managing the pmr/gca reasonably well and patiently. The biggest lesson is to accept if we rush it, we don't get there, or if we do, in a much longer time. Commiserations.

[PMRpro Ambassador]

This yoyoing you end up with when GPs push you to reduce, you go too far, you go back up, often results in you getting stuck at a high dose of pred than you want and it becoming increasingly difficult to reduce at all.

The Dead Slow and Nearly Stop approach LOOKS slow - but it isn't slow when it works to avoid the going back up again - especially since GPs frequently over react with a flare and send patients back to the start which is rarely necessary. The most common cause of a flare is reducing too far or too fast, it is rarely because the disease activity has increased. If it is because the new dose is too low, the simple answer is to go back to the previous dose which was enough which gives all the more reason for our advice to stay at the new dose for a month before reducing again - be sure that dose is enough or it just complicates things later.

Because you reduce in the smallest possible steps, it is less of a shock to the body so removes the confusion of steroid withdrawal rheumatism AND if the new dose is too low then it isn't going to be much too low, the flare won't be massive and you have time to go back before it gets too bad. For example, if you are at 10mg and the "right" dose is going to be 9.5mg, if you drop to 7.5mg you will flare a lot. If you drop to 9.5 and then 9 it won't and you only have to go back 1/2mg, far less disappointing and you haven't changed that dose much, not really yoyoing.

There are people on the forum who have followed one of these slowed tapers and have never flared on the way to zero - so they never had to go back a long way to a higher dose.

[Blackcatlover in reply to PMRpro]

I did use the DSNS approach to reducing and took many weeks to go from 4mg to 3.5mg. I agree it’s the best approach but I still got slammed with this awful flare. Adding 5mg for a few days isn’t doing the job and returning to 4mg where I was okay would never have worked. Am I just one of those people whose PMR is tougher to control?

[PMRpro Ambassador in reply to Blackcatlover]

Sorry, it wasn't really aimed at you but at the others talking about flares when reducing.

It may be - I get flares that happen when not reducing - and then it is obviously due to an increase in disease activity. Which I think some rheumies are beginning to accept is one form of PMR, one that relapses at intervals that aren't long enough for us to get to low doses of pred, never mind off pred altogether. Others have long enough intervals to get off pred and they have always accepted that happens. I don't know if there is an answer - is it really PMR or is it something else? Is there another drug that would work for it? But then that might suggest it isn't PMR if you take the steroid-responsiveness as a criterion.

[Hildalew in reply to PMRpro]

Repeating what I've read on here, and which some people may have missed: I wonder if some of the flares that happen are the result of people experiencing a slight pain which they 'put up with' for a quite a long time, either because it's quite small and 'part of the condition' or it's not recognised among other daily pains which are related to other conditions?

As you describe it, PMR pro, that drip, drip, drip of inflammation not soaked up by Pred, eventually turns into a flood=flare.

So, if those 'little' pains are mopped up immediately with an extra .5 (or more if necessary)_of Pred for a couple of days - or until they disappear - there may be no flare.

I know it needs us sometimes to be very brave to suggest to the Rheumy or the GP that we need to be able to be more flexible than their prescription allows. Mine was surprisingly OK about it. If they are rigidly opposed - is it possible to file a complaint somewhere about being left in unnecessary pain?

[Blackcatlover in reply to Hildalew]

Good advice. I think having pain for awhile before acting definitely contributed to my flare. The problem for many of us is that we have multiple conditions that cause pain. I live with piriformis pain and osteoarthritis. I wake up every day with pain and do a series of exercises and apply heat where needed. I’m afraid to jump to the conclusion that it’s PMR or GCA. I also have Occipital Neuralgia. Getting old isn’t for sissies!!!

[Hildalew in reply to Blackcatlover]

Oh Lordy, what a mine field. I can only offer sympathy - which isn't much use at all.

But there are a couple of sentences that come from a post by one of the wise women of this Forum a year or two ago:

I don't know whether this works for people with chronic pain from other conditions - but here goes:

When you are tapering and have 'new' (muscle) pain : if it improves after rest, it is the aches from muscles that have become unaccustomed to use so not PMR inflammation; if rest makes the pain worse, it is PMR inflammation.

[Blackcatlover in reply to Hildalew]

I like it. I will remember this! Thank you.

[Jo1947]

I’m where yore at BCL, reduced from 4 to 3-1/2, too low, painful, up to 10, slowly down over 2 weeks seemed fine at 5, went to 4 and this morning in agony. Havnt decided yet where to go from here, but I know I need to stay a month when I get out of pain and will then do DSNS good luck

[PMRpro Ambassador in reply to Jo1947]

You didn't drop from 5 to 4 in one go did you? And did the pain reappear that first day?

[Jo1947 in reply to PMRpro]

Yes stupidly I did, can’t believe I did😱

[PMRpro Ambassador in reply to Jo1947]

You have a choice - go back to 5mg immediately and try again with 1/2mg and a slowed taper which might well work with less pain. Or stick it out in the hope it is your body reacting to the change in dose and it is steroid withdrawal rheumatism. that was a 20% change in dose - rather above the "never more than 10% of the current dose"!

[Jo1947 in reply to PMRpro]

I think I’ll take 1mg immediately and stick with it for a month, then try DSNS. I’m having the vaccine this afternoon so don’t want to mess about yet, thank you once again xx

[Jo1947]

“You are at” not yore, sorry