Have reduced from 25mg to 24 and now 23 over the past 3 weeks. I thought this was quite slow a reduction, especially as the doc wanted 5 off in one go. Been at 23 for 5 days now. Feeling quite tired which is a new thing for me, so pacing and resting when I can. Pain in hip and arms, not bad, but enough to seek relief. I'm befuzzled as I don't feel I should be having these symptoms on this dose, can I then assume it's pred withdrawal and not PMR?
Hi Karen, was 25mg your starting dose? How long were you on that dose for? Regards tina
Prednisone itself could be causing your tiredness, unlikely to be your very slow withdrawal from it. Pain in hips can sometimes be caused by other issues, which I am sure the experts on this site will be able to advise you on. I hope you are feeling better soon. This journey is one I think none of us want to be taking!
Hi Tina, I started at 40 mg dropped to 30mg after just 2 days, then down to 25 and have held at 25 for just 2 weeks before dropping to 24. I did have aches with the first drop but they subsided after a couple of days lessening each day. From 25 to 24 with no problem except a headache which refused to budge for a day or two This is day 5 on 23 and definate new stiffness this morning and aches too, which have passed now as the day has gone on. It's certainly not a huge flare up so I should really grin and bear it and stay where I am to see if it subsides. The weather has changed too quite radically and I always find that makes things worse so it may be that. Wish I could just stop fretting. It's as Anhaga says "none of us want to take this journey" It's finding the right road to take for us as individuals. I read others having issues getting down at lower doses. So I wonder why I'm having the same at higher ones? Doc says I should be able to cut by 5 mg until I get to 20 or even 15 without any problems, but that's not proving so unless the pains I am now experiencing are caused by something else masked by pred.
Thanks Anhaga, yes as the day has worn on the pain has subsided. I too query whether the hip thing is from another source masked by the pred at a certain dose. It's a pain (excuse the pun) when your bloods keep coming back showing nothing. To boot I have gained a huge amount of weight over the past 3 months which doesn't help the joints for sure. Trying to get that under control by watching carbs very very carefully. I eat so much fish and leafy veg I will be growing a green tail soon!
Hello Karen, am I right in supposing that you have been diagnosed with pmr, gca or both. I ask because I have heard of patients with pmr that have had their preds upped to 40/30mgs when the usual starting dose of 15mgs fails to work. But to be prescribed 40mgs as the starting dose for pmr is most unusual.
however, having said all that a reduction from 40 to 30 mgs after just 2 days is also not usual pmr treatment either. Whatever starting dose that was prescribed for you needs to be taken long enough for that dose to really get to work, that is rounding up all the inflamation and then keeping it under control, that's why the starting dose is so important and is necessary to remain on that dose for a good 4-6 weeks as it has a huge task to do.
basically in 3 weeks you've gone from 40 to 23mgs? I question why and has this reduction plan been prescribed by your GP/rheumatologist?
it is quite normal pre diagnosis for pmr symptoms to deminish throughout the day so this is not unusual. But for me I think you are not on the correct dose. I agree that the pangs you experienced whilst at 24 were withdrawal however, these pangs are not subsiding and infact getting worse so that could be signs of a flare so be ready to up your dose to the last dose you felt comfortable at should things get worse.
regards, tina
That's it, Karen. Keep your humour, you're going to need it on this journey!
Don't worry too much, but do watch the reductions in Pred - you are reducing far too fast.
I had a lot of trouble at first. Started on 40mg (ESR 132, CRP 100+) and it went up and up. Eventually hospitalised, they must have suspected GCA.
Rheumies and doctors want you off Pred asap (if not sooner)!!! Listen to your body, and the excellent advice you will get on this forum.
Good luck. Constance
Sorry Tina I have mislead you a little in the way I wrote. I had blood tests as I was complaining of stiffness, pain in hips, shoulders, lower back getting worse over a period of time despite me exercising more, losing weight. I was about to see the doc after receptionist told me the bloods were clear and warranted no further action when in the early hours I woke in excrutiating pain and such a bad headache which I thought was migraine. Despite taking my migraine med it persisted and I had several hours of vomitting as the pain all over was horrendous. Somehow my husband got me to the surgery, the doc said he wasn't surprised at the clear bloods and he wanted to try me on pred just to see if what he suspected was correct. He gave me 8 x 5 mg there and then. I think he may have suspected GCA but I have no real symptoms of that. No jaw probs, no eye probs. I think the headache was just a red herring. The next morning I awoke feeling absolutely fantastic, free of all pain, could walk upright with no stiffness. That day he told me to reduce to 35 within a week as quickly or as slowly as I needed. Within 2 days I was at 35. No problems. I stayed there for a week and then he told me to drop to 20mg. That wasn't good and I got a lot of pain back so I upped again to 25 which didn't help. On the advice of another gp who told me about the 10% rule, which I had heard about here, I went back up to 30 and things balanced out again. Last time I saw him because of the awful palpatations/hyperactive feeling he suggested a 5 mg drop to 25 for a month. Dropped no problem, slight pain as I said went after a few days. I then decided rather than drop another 5 in one go as he suggested I'd go 1mg at a time each week, that equates to almost 5 in a month, so I'm still heading in the right direction but not such a drastic drop all at once. I didn't think 2 mg over 3 weeks was too quick. From what I've read withdrwing at that pace on a fairly high dose is easier than when on lwer doses. Boy the docs are quick to put you on this stuff but seems they want you off twice as fast.
I've always fancied being a mermaid Constance. You feel 2 mg over 3 weeks is too fast? I'm desperate to get the dose down, the side effects are nasty. My weight gain: I waddle like a duck! The sleeplessness: Hello 4am. The palpatations: I feel like I'm about to drop any minute. I have been a good girl when it comes to pacing and resting. I just find it difficult to differentiate what might be PMR pain and what's not.
Ah ha, got you! But as I say if these symptoms continue to worsen you may have to up your dose to the last dose that kept all the inflamation (pmr pain) under control. If you do have to up the dose, stay on that dose for a good 4-6 weeks to ensure the preds are really doing their job before reducing.
it also sounds as though you suffer from migraines, me too although not had one since pmr diagnosis (December 2013), weird eh! But don't be fooled into thinking that a gca diagnosis is reliant on a patient suffering all the symptoms you have mentioned. Some patients will only suffer 1 or 2 of the symptoms but in your case always try to differentiate between your migraine headaches and a different headache and if in doubt always seek medical attention.
this will be a long journey but hopefully we will all get to the finish line in the end. I am on 7mgs of pred having had one flare last Christmas attempting to reduce from 9 to 8mgs and I now follow the dead slow and almost stop reduction method. Yes, it's slow but very good and my GP and rheumatologist approves of it.
all the best, regards, tina
Oh Karen, just to add if you are suffering from palpitations, try to cut back on caffeine. So less tea and coffee unless caffeine free. I suffered palpitations and GP gave me that advise. It worked but don't go cold turkey. Reduce by 1 cup of whatever every couple of days otherwise you'll end up with a headache from hell!
regards, tina
I'll give it another day or two and if no improvement I'll go back up 1 mg where I was fine. It's not a lot is it? I too have not had a migraine or any headache since starting pred apart from the won't go away background headache when I was reducing. Nothing major though, just a constant ache. Coudn't even call it a headache. But yes I will heed your advice. Pred would be magic if it weren't for the side effects. Thanks as always for the boost/advice/support.
Have done already. Now drink a little (2 cups a day) totally caffeine free coffee and tea and then mostly water and herbal like peppermint and chamomile. They have improved greatly. They come on mostly after I've eaten! I've got an ultrasound next week just to check all's well but I'm sure it's pred related. They never bother me in the evenings or during the night or in the early morning, but as soon as I've had breakfast and meds that's when they start.
I'm not qualified to answer that. Others will advise you.
Weight gain on Pred seems to be the rule for most people, unfortunately. I was one of the very lucky ones who took weight OFF! (10 kilos, about 1 1/2 stone). Sleeplessness is also prevalent.
I have had PMR for a LONG time and I still find it difficult to differentiate between PMR, OA and Gout. Although Gout is easier, actually, because the pain disappears after a few days.
Keep posting and all the best.
Some of my pain was in the hips prior to diagnosis. I get it there as well as other places if I have overdone it. Today, I foolishly carried too much shopping to the car and felt it in my hips. The thought of facing 2 trips to the car seemed worse as I was struggling. I waddled to the car.🐥🐥Can't find a duck so chickens will do!
Hi Silver49,
I spoke to you last week (i think..!!) I can't really keep up. Do you know if folk suffer from sweats really bad sweats.....i am completely exhausted and don't know what to do with myself...feel there's never enough time with the doctor to really tell him how things are...it's so complex...i'm 52 so some of my symptoms may be an 'age thing' i feel so bad sometimes it feels like i'm gravely ill, even reading other folks posts i can't convince myself it's PMR causing everything....Aaaaaaarrggh...!!!
Yes. People do suffer from sweats. I think it varies from person to person. I find it's the back of my neck and hairline which are worst. It may be that younger people going through the menopause have that to contend with as well. I would think that probably exacerbates it. It is not pleasant and you have my sympathy as it is draining. I don't know what helps as mine has eased though I don't if that is with reducing the steroids. I am now on 11mgs. Others may be able to suggest ways of lessening it. Have you tried running cold water over your wrists?That can give some temporary easing.
Sorry, Issy R. That should have read: I don't know if that is with reducing the steroids. You probably realised I missed out the 'know'.
I think you'll find that starting at that sort of dose isn't that unusual, depends on your Dr. I started at 50mg as she likes to 'hit it hard and fast' lol
Hi Thanks silver 49,
I think i also go into panic mode when i feel a sweat starting, which i'm sure makes it worse....ahh to be 30 again lol...it's been a downward spiral since i hit 50, no matter how much i try to keep positive. Thanks for replying...it's 5.30am here and heading to work. I hope you have a good day/night wherever you are. xxxxxx