Posted , 16 users are following.
Hi All,
I've been on 6 mg of prednisone now for 7 weeks. It's been going well, except for recently. The last few days, I've been very sore, in the usual places for PMR. My question is, does this sound like a flare up, or just the winter creeping in on me. And can flare ups happen without tapering?
Thank you all again for your caring of strangers.
0 likes, 18 replies
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kathy61958 patricia43291
Posted
hi, Patricia
Doctors really dislike putting people on prednisone, so they try the lowest dose. if your symptoms are flaring, you need to call your doctor. they depend on us to let them know. You shouldn't be in any pain at all!
Michdonn patricia43291
Posted
Patricia, yes a flare can occur without tapering. I have had a flare for no apparent reason. I have increased my dosage to stop the flare and then stepped down to the previous dosage level . Good luck think positive and smile. 🙂
Silver49 patricia43291
Posted
Have you been doing more or had some extra stress recently? It is possible that you may be able to deal with a flare if it is that by upping a few mgs for a short period and then coming down quickly to the amount that dealt with the pain before you dropped to 6mgs. Are you following the DSNS method? It allows you to come down more slowly and you are less likely to go past the amount that is dealing with the pain comfortably. Not everyone is pain free even on steroids and for some 70% is as much as they can achieve. Others with more experience will be along soon to advise. You don't need to see a GP if you have been given enough steroids.
patricia43291 Silver49
Posted
I have been extra depressed lately, but I doubt that could cause a flareup. The winter has already settled in, ice and snow covered ground, I already fell once, (so lucky my hollow bones held up). Single digits at night, and too poor to go any where. Sorry to be such a downer. I won't go back up, if I have a say.
600 mg of ibuprofen helps sometimes.
Thanks so much.
lynda62707 patricia43291
Posted
hi Patricia....so sorry to hear you've been so depressed....I can totally relate!
only difference here is rather than single digits, our state is on fire right now! we could certainly use some cold weather and even some ice!
please hang on in there and take care not to fall! 👟😜
Vicki200252 patricia43291
Posted
Sounds like a flare up, Go to docs and have Pred adjusted.
If you don't pain could get much worse.
Even though you are experiencing severe cold weather, I think there would be a difference in the type of pain you would have.
All the best Patricia, hope all is good soon.
peggy_56092 patricia43291
Posted
Ibuprofen can cause ulcers. Try Tylenol if you must take another drug. Otherwise, up your pred dosage as suggested for a few days.
Snowman1609 patricia43291
Posted
not sure if i have a flare up but the past few weeks, just after getting a flu shot, i've been feeling rotten! Tired all the time, achy and feeling flushed, especially my face and around my eyes. I mentioned this to my doctor before and he said it's not flare up? I've been taking 10mg for about a year now so I think Iwill up the dosage to 15mg to see if will help.
EileenH Snowman1609
Posted
How does HE know it isn't a flare up? He has PMR and has has flares has he???? 😉
jean39702 patricia43291
Posted
Hi Patricia. From what I understand the disease can flare on its own no matter what taper you may be on. I think it's less likely if a person is following the DSNS reduction, but it can happen.
I follow the DSNS and have had a flares due to doing too much and/or simply because I'm more sensitive to drops than others might be. I know I should stay at a particular dose for up to 6 weeks before dropping again. If I try and rush it a flare will likely result.
Like you, I have "usual places" that trigger a flare. In my case if I begin to get pain in my upper arms/triceps, neck and back I know to watch out. If it gets progressively worse over two or three days it's a flare. Because I only drop by .5 mg at a time I find that going up two full mg settles the flare within a few days and I can get back to my pre-flare dose fairly quickly.
Twopies jean39702
Posted
interesting. hope i remember this...sounds like what i might experience too. eileen suggested that i stay at each stopping point for 2 months. your protocol sounds good as well.
EileenH patricia43291
Posted
I assume you have reduced previously though?
The weather can have an effect yes. However there are two sort of flare: one is because you have overshot the dose you need, the other is because the activity of the the underlying illness has increased for some reason - and that happens. Sometimes it is because the immune system is also fighting a cold or other infection.
But it is possible that it can take some weeks for a flare to build up because the dose is too low - it all depends on how much too low it is. If it is only slightly lower than you really need then it can take some weeks to fill the PMR bucket until it spills over and causes symptoms.
It could be either case - either way you possibly need a bit more pred - it may only be 6.5mg you need though.
patricia43291 EileenH
Posted
I understand the bucket theory, if the dose of pred is slightly lower than I need.My question to you is, would 600 mg of ibuprofen do the same thing, as upping the pred? Or does the pred have other benefits, besides relieving the pain? Does the pred actually cure the PMR? As you can see, I'm really trying to avoid upping my dose from 6 mg. Thanks so much.
EileenH patricia43291
Posted
Probably not - many people don't find they get relief from symptoms with NSAIDs and NSAIDs together with pred is not a good mix. Both can cause gastric irritation and both together make gastric bleeds more likely. I have a friend who was told to use ibuprofen for her PMR symptoms and after 3 doses ended up in A&E with a gastric bleed - not nice for her or them.
No, nothing cures the underlying cause of PMR symptoms, the pred combats the inflammation and so relieves the symptoms to allow a decent quality of life in the meantime until the autoimmune part that underlies it burns out and goes into remission - which it does for 95% of patients sooner or later.
Everyone wants to not up their dose - what is important is that you take enough to manage the inflammation FOR NOW or you risk it building up again and being back where you started eventually. If you end up doing that you lose the perceived advantage of being at a lower dose - it only takes a couple of weeks to have taken more pred than if you had stayed at a marginally higher dose to start with.
patricia43291 EileenH
Posted
Thanks Eileen,
I took an extra half a milligram today. I sure don't want the bucket to over flow, and be back to where I was last year. The slight aches and weakness I have been feeling lately, is way too familiar, the very slow progression of how it came on in the first place.
I have an appointment the 27th with the Rhumey, and I am going to ask for more blood tests. What should I be looking for? Does the pred mask what is really in the blood? Or will it show the true measure, with or without pred?
I've found the Rhumey is pretty much useless except for prescribing the meds and ordering blood work.
EileenH patricia43291
Posted
Impossible to say - some people don't find their markers rising again while they are on any pred, others do. Sometimes they lag a long time behind for some reason. That's why symptoms are always king! And sometimes you need a few days of a noticeably higher dose (add up to 5mg to the dose where you flared) to clear things out before the lower dose will work well again.