Hi it’s me again, have stabilized on 5mg for a while with tiny bit of aches. Doctor told me to reduce to 4mg which I have for a week now, this morning I upped to 5mg again. I feel this morning like I have been pulled through a hedge backwards, shoulders aching, job to walk, feels like every bone and muscle has taken revenge on me. It is ages since having a flare up and I have forgotten what it was like, evidently he has put down in my notes trochanter bursitis ? on my left hip as the pain down to my knee I have never experienced before if I move wrong, I don’t go to the muscular skeletal clinic till next month !!!!! to see what’s what, 10 months now been suffering with this left hip....it’s ridiculous, I am feeling so depressed with it all. Told my doctor ( who has given me opioid tablets for pain,but DONT take) painkillers are not the answer. Any advice would be good please x
Hi all, am I having a flare up again: Hi it’s me... - PMRGCAuk
Hi all, am I having a flare up again
Yes, tell him you will drop to 4mg after he has arranged for a Synacthen Test, which means a referral to an Endocrinologist..............this test will see if your adrenal glands have woken up and started working again.
Think mine have died ! trying to be in a humorous mood ! I am getting really down about it all. I am on the positive side in remission with my GCA thank God, behaving itself the last few months and about time too. I just can’t handle this PMR , the soreness in my muscles feel like someone has got their fist inside them and twisting the hell out of them ! I am walking today like a 100 year woman ! ( I am 68) going upstairs one step at a time, I keep asking God why me..... what have I done wrong in my life... I get no answer only my 2 chihuahuas cocking their heads listening to me bless them. Sorry for moaning but I have to get it off my chest on here as you have all and still going through it x
Really sounds as if you are not on enough pred - there is no virtue in forcing it to stay at a lower dose if you are in constant pain. I've had PMR for 15 years, 10 years on pred. But I haven't has pain like you describe since I started pred. I did before and I'm not going back there unless someone pays me a LOT of money - a few millions might make me think briefly ...
Good description of the muscles. My leg muscles are on fire. They are not reacting to even short walks well. Can't get to rheumy til at least January, and that's going private! You are not alone. Not a lot of consolation but sometimes it helps!
I really feel for you as it’s not nice,what a long wait !!! Have you ever tried crutches for a short walk ???? My doctor was surprised that I even thought about that, I have in the past and it stops you from putting to much weight on the muscles and it certainly helped me. 2nd day back on 5mg and it’s easing a bit from yesterday. Worse is when I get up in a morning, I tell my legs ( or should I say swear ) to get moving and my head tells them there’s nothing wrong with them ..... nope doesn’t work but worth a try ! So stiff and one step at a time to come down in a morning, my two chihuahuas bless them follow me down and won’t pass me. Yesterday was hell for me I cried most of the day I get very emotional and can’t help it, but today after painkillers I was able to take my two dogs for a short walk in the grounds behind my house, came back exhausted but they are worth it bless them. 6 1/2 years now on steroids but at least they help us, I do have osteoarthritis because of them in my joints and confirmed by a Dexa scan. I hope you can get an earlier appointment, is nhs no quicker ? Best of luck x
Im in ireland. I would shudder to think how long a public appt would be!! I do wonder whats waiting when the steroids are reduced. They are literally keeping me going though i hate them. Thank you for your reply.
What mg are you on ? How long on them ? My own doctor up to last week has always let me increase or decrease according to pain, he said I know my own body better than him, which is correct. Hence last week asked me nicely if I can decrease 1mg to see how I get on bless him, but then this flare up and I asked on here if that’s what it was as it’s ages since last one and I forgot how I was ! So sticking on 5 for a month then do a very slow tapering as advised on here. I know it’s a long time considering I was originally on 60mg but I don’t mind anymore x
Oh i only started at 20mg. Been on them three and a half years. On 4.5 forever and back at 6 at the moment!! GP wants me off them, hence the visit to the Rheumy! I could do with an overhaul anyway. You've done good from 60!
Why don’t you try 10mg as sounds like 6mg is not enough for you, and then try the slow tapering method what I am going to try. If your doctor is a nice person like mine I am sure he would agree or just don’t tell him, he can’t let you suffer like you are. I started at 60mg as I had GCA and my readings shot through the roof !! Doctor said I could of gone blind as I suffered for a month as thought I had a brain tumour and was scared of going the doctors, she went mad with me !! I am sure others on here would advice also on upping your steroids x
Good on catching the GCA! oh wouldnt tell gp if i go to 10!! I have done it recently to get a grip on things. She wouldnt be impressed!! Hence the visit to the rheumy! I hope your flare settles real soon.
Is she not a doctor you can talk to then, as you still have 3 months for your appointment, or see a different one. There are just 2 doctors I will see in my surgery, one who actually diagnosed my PMR after walking in his room in agony and I couldn’t get back off the chair lol must be at least 4 years ago and he is marvelous . I was in tears when he told me what was wrong with me.... with happiness knowing I wasn’t going mad !! With the GCA I used to suffer with migraines most of my life, and a friend took me to Spain for a months holiday. Every day I was on syndol as they were the only tablets which stopped them, but I had the heads 24/7 and couldn’t believe the tablets weren’t doing their job. My friend thought I was addictive to them and that’s why they weren’t working anymore. Anyway when we got back home I still never went doctors,as said thought I had a brain tumour so waited another week. My other doctor hit the roof with me 😱 she said that’s why you should come up here !! Same night she put me on 60mg steroids, next day I had emergency eye clinic, I couldn’t believe why everything was happening so fast !! Then I had a week later a biopsy in my head while I was still awake !!! My God I never moved but surgeon spoke to me all the way through just over an hour he did it !! From that day onwards I have NEVER had a migraine again, very strange. ( I do ramble on ) I hope you get sorted sooner than later as you can’t go on like that all over Xmas x
What a nightmare for you. Thd joys of all this! Best wishes.
My daughter had some "trekking poles" sent to me after experiencing that pain and weakness a couple of months ago. More comfortable than crutches and not expensive. Bonus... they're made for hiking so lightweight, stylish (lol), and easy to use around the yard, paved areas, or dirt trails. Hope you feel better soon! xx
The crutches I have are very very light and comfortable for me, walking sticks I kept tripping over them !! feeling so embarrassed lol went out this morning without anything as my 2 chihuahuas had to go vets and I have to catch a bus with my friend. By the time we got home I was absolutely crippled with pain etc until I took my pain killers, now sitting down for rest of day . Hmmm teach me a lesson !!
Ohmigosh...you described my attempt to walk. Diagnosed GCA 1 yr ago. Started at 60 and after a few flares was down to a 25 to 22 taper. At 22 only after a month of tapering, symptoms intermittently returned; temple pokes of pain, mild jaw discomfort, lazy. Back to 25 and not sure it's enough after yesterday's misery. I had been walking more and have some stressful things going on, so yay. My hips and calves were on fire and leg muscle weakness rendered me barely able to walk much. I wondered if PMR was setting in. How would I know? Today I don't have any of that! Weird.
Let’s go up the stairs one at a time together!! I am experimenting changing Pred to 10pm instead of morning. It does seem to be improving my flexibility - on the stairs too. The triage GP this morning said he didn’t think my leg problems could be PMR as it didn’t give leg problems! He also said it should burn out in 12 to 18 months!! Beggars belief!
Good luck!
"The triage GP this morning said he didn’t think my leg problems could be PMR as it didn’t give leg problems!"
Dear me - maybe the forum needs to send the dear man an email about PMR and legs! If it doesn't affect legs - what DOES it affect?
I agree with PMRpro, perhaps he thinks it only the toes it affects ( bit of humour ) of course it’s the leg muscles that’s why we get our flare ups ! They cannot tell you how long it takes to burn out , everyone of us are different. Yes some go into remission, but for how long ? I did for a couple of months then bang, big flare up which I still have. My doctors could not tell me how long and they wouldn’t dare as I speak my mind politely to them. I
Perhaps you and I should hold hands and try go up stairs together 😂 I have to laugh or I will cry.
Sounds as if he is wrong - and you still need 5mg for the PMR. No reduction should be more than 10% of the current dose - 1mg at this level is already 20%.
Have you used something like this?
healthunlocked.com/pmrgcauk...
Hi, no I haven’t, been trying to copy the tapering but can’t seem to do it. I will write it down and then start tomorrow as this is killing me slowly, I have also found I am getting hot flushes ( no not menopause) is it full blown flare up I have got ?? 6 1/2 years now had it , that was after the GCA, but GCA I think has gone into remission thank goodness, as no problem there for months !!
Get a calendar or diary and 2 different colour highlighter pens. Choose a starting day. Mark that as the one day new dose - then count the number of days you want to start with for the old dose and mark them with the "old dose" colour. One day new dose, count one less old dose day and then keep doing that.
If you start at 1 day new, 4 days old it will fit in a month - but this isn't a race, if it takes 2 months and it works - THAT is what matters.
I have to say - getting hot flushes is a sure sign I'm hovering on the brink of a flare.
Thank you so much I am going to do this, I don’t care how long it takes me I don’t want to be rushed by my doctor bless him. I have done well to get down to 5 mg and been on that a couple of months even though an odd twinge.
Or try this - it’s called simple for a reason -
I get spasmodic hip pain which is ‘cured’ by my physio massaging the trigger points. Age 77, 14mg reducing. Caused by muscular strain - very easy to get with PMR and steroids!
Best wishes
Wow I could do with your one, my one did 2 movements then said go home and do same for fortnight !!!!! Every time I went it was the same !! I told my doctor and asked what he was getting paid for !! I gave up and not been since. I have osteoarthritis in both hips but left one is the trouble maker. I just take one day at a time now .
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