My hips are killing me five days now. I’m struggling to work out if it’s a flare. Iv reduced from 13.5 to 12.5 8 days ago. It fill like Iv been kicked by a horse. Any advice please I can’t turn in bed 😫 I was hoping to reduce to 11 by Xmas. I know it’s not a race but thought I might be able to
Thank s
You are right, it isn’t a race
I know I’mJust trying to get down slowly as I’m not great on pred. Lots of horrible side effects. Just not sure what to do Iv tried every pain killer under sun and it kills to walk
If it is PMR that is causing the pain, painkillers do NOT work, you need steroids. You need to be on a dose that knocks the PMR on the head otherwise you are getting the bad effects of the steroids and none of the good effects. Were you OK at 13.5mg?
Not really Iv been struggling for a while. I was great early doors30 mg worked on a matter of hours. Then 15 mg I think since down from 14 trouble started but got confused if it was my back but last few weeks it’s been awful.
Uglow, you must never reduce while you have pain. Please don't be fixated on tapering to a particular dose and accept that you need what you need.Do speak to your GP/rheumatologist about the steroid side effects and the hip pain that isn't relieved with over the counter pain relief.
I’m going to go on 14mg. How long before I know if it’s working! Stay there for week or two and how do I start taper again just 0.5 down at a time. Thanks
Usually I feel better the same day I up the dose. Stay there for a month. Then try again at .5mg or 1mg every other day.
Tapering down how long shall I stay on each decrease
I am generally at a dose for 4 weeks before dropping again.
So sorry you're in so much pain. Like you, I've never managed to get successfully below 15mg pred. I've been on that for 5 weeks now, and only today dared to go down to 14.5mg, and I'm not in so much pain as you. It seems that if you don't go down too fast, you end up taking less pred in the long run.
Personally I would have gone to 15mg and really hit the PMR on the head, but 14mg may be fine for you. It should work in a day or two. As cranberryt says when you reduce take a month over each reduction.
Methinks 1 mg is too much at a time.....this may be where you lower half a mg now...and to be at 11mg by Xmas....too fast......just go slow, you need what you need...
No need to be sorry, talking to us here is far better than suffering on your own or bottling things up. If 15mg was the dose you last felt OK with the you need to go back to that dose and stay there for a few weeks until you feel totally OK and then probably give it another week. Given the difficulties you have been having, then move onto one of the tapering plans, maybe the seven week one. If the 1mg reduction doesn't feel right then possible come down in .5mg per taper. Problems with Pred or not, if you rush this you will end up taking more Pred in the long run and when you yo-yo up and down it is often harder and takes higher doses to get things under control. You need to accept that 11mg by this Christmas is completely unrealistic and that if things go well it might be 14mg for Christmas. I would guess that christmas feeling out of bad pain has to better than the alternative. Our usual pain killers will have no impact on PMR at all and unless you need them for some other condition you are just adding other drugs, with their side effects, to your body for no effect/gain, Patience, acceptance of a long term systemic illness and looking at other ways of mitigating the side effects is the key. Hope all goes well and things start to improve soon.
Yep, I pretty much agree with Bcol. Just to share my experience, I was tapering off at similar levels to you a couple of years ago. My groin and hip was really painful and I was sent to have an x-ray as the GP felt that my symptoms suggested severe osteoarthritis in the hip. The X-ray showed my hip was not too bad. I decided to increase Pred to where I was previously okay and the pain miraculously subsided. Getting to chat with a Rheumatologist was (is) not easy. Two years on and I’m on 22.5mg of methotrexate weekly and 4mg of Pred daily. For many of us it can be a long slow process and four years for me so far. I’m currently experiencing other problems and my ESR is boarder-line high, so the journey continues 🙄
Try looking at it the other way round: you seem fixated on the pred side effects being bad, but are you not actually finding the PMR side effects are worse?
You have been chopping and changing when and how much pred you take at various times for some time and that often has a longterm downside of making it even harder to control the symptoms. You need to stick at a dose that works until you are stable before even thinking of reducing, and certainly not with a timescale set in stone. If you can't reduce 1mg at a time - then reduce 1/2mg at a time. Using a slowed taper. But sticking to a dose that works.
And what are the problems with pred? There are few pred side effects that can't be mitigated when you know how. But it demands application on YOUR part. Just like reducing the dose does.
I get you so shall I try 14mg see what happens
Only you can identify the dose you need. As Pixix says, it COULD be something else but you have to sort out your reduction pattern and then stick to it. This isn't an instant fix and you must be patient.
Ok thanks Iv just taken 14mg how long do I need to see if it works. If it works shall I decrease by 0.5 in January. I am reaching out toYou.
I really don't know - you have to learn to assess this for yourself. You will know if it is enough if the pain improves but you might need a few days to see. Or you might need a few days with the "add 5mg to the dose where you flared" approach. It really depends on how much inflammation has built up already.
Maybe it’s a good idea to see your doctor again. Your appointment last week doesn’t seem to have worked out well. To share my experience, I am in dreadful pain in my hip & back, but my trouble is sciatica and a benign spinal tumour. If your doctor ruled out anything else with your back last week, that’s good news. I’m wondering if he or she told you to reduce? I really would advise you to see your doctor again as you have been struggling badly for a long time now, & we can’t give you medical advice (I guess you read the recent admin post on that subject)! Good luck & take care…it’s been so long now & there may be something else, so you deciding to increase steroids may not help! I also have inflammatory arthritis. This only showed itself as I reduced steroids…the high doses mask the arthritis, &, as you reduce, it becomes worse. Rheumy was sympathetic but said she thought that, as I lessen, so I will find trouble & pain…she was right! The steroids may help that, but it’s not really helping & I’ve had five hospital appointments with two specialists to learn about it. This doesn’t mean you have any of these medical complaints, but I truly think you need medical help!!
Hi sorry to hear your doing so good, I was like you tried over and over again to reduce but each time I was in agony. I also agree with other comments and would go back to your doctor. I was diagnosed with PMR in Feb 2020 and struggled to get below 10 mgs. I eventually had an MRI scan that revealed that I had a fractured hip. I have had a roller-coaster ride this year but I can honestly say that things at present are really good. I thought this would never happen. Maybe you have some undiagnosed underlying issues and further investigation is needed. Good luck and best wishes.
This is how my PMR began over a year ago without understanding what was going on, I assumed that it was just long haul covid. Now I understand I should have seen a doctor and gotten prednisone. The only activity I could do was walk and not that far and limited stretching. The hips, lower back and outsides of the legs were the constantly in pain, sleeping or just lying down was awful. Please see a dr the only thing I took was aleve, and drank turmeric tea. Not effective treatments.
I have painful hips also, not as bad as yours. Yesterday I had a bone scan, will see rheumatoiogist next week and then my GO. After 3 years I am down to 4mg
My hips have been really sore for months. I told my rheumy a few weeks ago and after examining me he said he was sure it was bursitis. Last week I had anti inflammatory injections in both hips and the pain is gone. Don't know how long it will last though. Keeping fingers crossed. X
Don't be too jealous. I've developed an infection around both injection sites. On antibiotics now. My gp wouldn't help I had to go to a and e and after queuing standing up for 2 hours they arranged a hub phone call. Could have done that myself. .😕
Doesn't say much for someone's aseptic technique!!! It was like the OP when I had mine done!
Did you get any treatment, how are you?
Omg so sorry it was a flippant throw away remark. Hope you are ok.
Hope you’re better soon Suet xx
Two hours queuing!!!
It's ridiculous isn't it nextone. You're there because you don't feel well and there's nowhere to sit!! X
Hi, just think for you, when you are coping with the steroids, let them do the work, to help. Relax, like, the last nessage I sent. Wish you well x
Me again
It's me again.
Me Again
Me again- flare
