Does anybody know how long you are generally on steroids.
PMR how long on steroids : Does anybody know how... - PMRGCAuk
PMR how long on steroids
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jensen0518
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As long as the disease takes to go into remission I guess. With PMR recent studies have said that most people have to take some dose of Steroids for 4-5 years. However, my Rheumatologist said to me on Thursday that in straightforward cases, in her experience, it’s more like 1-2 years. She is involved in much pioneering PMR/GCA research too. I felt a bit bad because I have felt the need of them for the 3 years I have been taking them, I am on 5.5 mgs from 20 mgs. I have used a slow taper, struggling to get down from 7 mgs. She attributed my current pain to Psoriatic Arthritis which may have been masked by Prednisalone. I also have some suppression of my Adrenal function due to steroids and am seeing an Endocrinologist for the first time, this month. I hadn’t anticipated so much difficulty at the “ end” of the process. My Rheumatologist whom I travel from Sheffield to Otley to see is a trusted figure in the PMR/GCA world.
People’s experiences vary a lot. She did suggest that fewer straightforward cases would bother to go on Forums - having a smooth ride as it were. GCA can be even more likely to be of shorter duration. I would also be interested in other views. This has turned my assumption on its head somewhat.
Hi Sheffieldjane,
Do not feel bad because you felt you needed them, you did............and if you had not had them you were running the greater risk of GCA. PMR can quite often lead to its big sister.
Can I ask the name of your Rheumatologist?
"GCA can be even more likely to be of shorter duration".
I am interested in that statement, as I only know of 2 people whose GCA went into remission in 2 years. The others that I know average 5 years. I have been involved in a support group for 11 years and used Patient.info and then this site as well when it started up.
Pred is one of the most powerful drugs we have and one of the oldest and because of its age the list of side effects is well known.
Anyone taking Pred at high doses for more than two weeks, their adrenal glands are knocked out. That is why medics are not happy when they have to deal with people on long term. Normally if you are prescribed pred for any reason it is generally a short course.
Your Synacthen Test with the Endo him/her will tell you if they are on the way to waking up or have begun to wake up. Best test I have ever had, I fell asleep.
Just remember you have to carry your Blue Steroid card for one year after stopping pred.
You will go into remission but only when PMR, which has a a mind of its own and it decides when it comes and when it goes. Pred only controls the inflammation.
BTW what has she given you for the Psoriatic Arthritis - as I understand it, Methotextrate is often used.
I hope you don't have to wait too long for the appt with the Endo.
Thank you for your very grounding remarks. It was however Dr Sarah Mackie herself, who spoke at the last members event. She also said “ ask any Rheumatologist whether they would prefer to be on Prednisalone or Methotrexate and they would all choose Methotrexate”. To me the potential side effects of Methotrexate are much more horrifying. I will see what the Endocrinologist adds into the picture, next week. I have always trusted Doctor Mackie, so have been feeling rather depressed since the consultation.
I smiled on reading about the metho. I had GCA, two years down the line was offered 'metho' as a steroid sparing agent. I looked at the side effects metho 16 known, pred 83 - added them up and said...........does it cure GCA - no nothing does at present. OK I will stick with pred only, Thank you.
Mind if I developed Late Onset Rheumatoid Arthritis (LORA) that is a whole different ball-game. -all, with
I wonder if any Rheumatologist has had GCA?
Agree jinasc - someone I know with RA on a low dose of methotrexate said - both drugs affect your white blood cell count so a double whammy may not be 'good' there anyway - even if folate 'helps'. I wouldn't risk another batch of any other side effects either when really only Pred can ultimately do the trick even if that is a frustrating journey at times !
Mmmmm the shorter duration for GCA statement from your Rheumy is interesting and how I wish that were true, being in my 5th year. Personally I don't know of anyone going into remission so quickly. It would be interesting to hear others experiences. She's probably right though if they've had a smooth ride then they wouldn't necessarily be on the forum. Interesting perspective.
You shouldn't feel bad that your in your 3rd year either. Wonder what she will say to me when we move north! It's been indicated to me I may never come off pred - we'll see.
It scares me when I hear some are so keen to get off the pred so quickly, particularly now my neighbour has totally lost his sight - believed due to untreated PMR. He wasn't a doctor person throughout his life. He said his PMR symptoms last summer eased off - I urged him to get checked out. He said only now does he realise how serious an illness it is. Too late for him. It is so sad.
Where North?.
I was also told I could be on pred for the rest of my life. It did not work out that way. Now in 7th year of remission from 1 Jan 2019 after 5 years.
Both PMR & GCA have minds of their own...............
Apologies for not replying sooner I lost the post! Or was it the plot!
Anyway we’re heading for WF3 postcode, Tingley - Wakefield. Are you up that way?
Wow. 7th year in remission, that gives me a lift. I’m down to 4mg by accident, 1mg was stuck in the packet - found the next day and withdrawals were minimal for me. Needless to say I jumped on the bandwagon and kept it up - bit of a hiccup so have compromised with a .5mg reduction instead. Shall stay put for a while until totally settled. Am chuffed as never planned it. I haven’t given up hope.
Well done you - silly question but are you totally symptom free?
Yes I am, however, I must remember to put GCA only on my posts. I never had PMR. One of the rare birds. 🦉 (only bird could find and I am not wise) 😄.
Further North, NE11 postcode.
No I think I got that from on here and cleaved to it. Am I in fact an agent of misinformation? Must say I am feeling oddly Pred head recently.
No you're not at all and if you are then we all have those occasions, don't worry so. The pred does makes us feel insecure and overzealous in quick succession, you're just having one of those days. You, as we all sometimes do, repeat info that we've gleaned along the way as it might be useful for others, doesn't mean we agree with it or know it's true. Everyone on here makes their own mind up I'm sure.
PMRPro and Dorset Lady are a pretty sure bet. If they pull me up I know I’m way off.
I was only generalising.
That is precisely where my depression is coming from. If your doctor is having an off day, perhaps they don’t realise that what they say is in neon lights for the patient.
I'm sorry you're depressed, very hard it is.....and no they don't Jane would love to tell them how they make patients feel sometimes.
Don’t get me wrong, she’s lovely, that’s half the problem.
There are some that must get off prednisone due to complications- not always so cut and dry but always very stressful and scary when needing to make decisions. A good doctor will go the extra mile and pull in other experts to try to find the right solution.
Hi Telian - I'm not sure about that 'smooth ride' assertion - or even if it is possible to have one with PMR and or GCA - especially considering the spectrum of strange symptoms we initially get, the often slow and difficult diagnoses and the range of fluctuating physical, mental and emotional experiences. I'd LOVE to see a description of a so-called 'smooth ride' here - WHAT would that look like !? Interestingly my GP also made a similar comment - that health forums are full of people who are typically 'struggling'' with illnesses - UM YES !!! - doesn't illness generally feel like a 'struggle' or challenge ... sometimes I think people who have never been seriously unwell have 'no idea' of what it can be like.
Best wishes
Rimmy
Not my belief either. I repeated as I read - should have used commas. I certainly haven’t had a ‘smooth ride’. Some doctors have a better bedside manner than others. My neighbour, newly diagnosed with GCA and now blind. was told flippantly when In hospital that perhaps he only needs aspirin then, because he’d had no symptoms prior to losing his sight!
Thank you
Just to add another perspective. I am one of the people who has seemingly had an easy ride. After6 months of dreadful pain, started on pred and I’ve felt fine for the past 4 yrs. Pred dose hovering between 2mg and a half mg for 3 years. But I still need this tiny bit! My body is not ready to quit yet, unlike a male friend who was done in a yr. Don’t let it get you down. Zero pred is waiting for us somewhere 👍🏻
Bronni
Most men, that I know of, get through it in 18months to 2 years. Then about 25% have a recurrence, Stats!!!!!!!!!!!
Interesting. Begs the question - why?! I mean, why less duration than women? Maybe because married men are the happiest segment of our population!😄
In a way this percentage of 'recurrence' indicates they were not 'through it' in the first place - just perhaps told themselves they were and I am guessing a gendered perspective on pretended 'toughness' may have something to do with this. Problem is 'denial' doesn't work well with any illnesses as we know or ultimately 'discover' !
DorsetLadyPMRGCAuk volunteer
How long is a piece of string?
It varies- but recent US studies have it just under 6 years. Unfortunately there is no specific timescale, and some people seem to get slightly different variants of it. Just have to accept it’s not going to be quick!, and you never know you might be pleasantly surprised.
PMRproAmbassador
PMR goes into remission for 95% of patients at some point - which may be anything from a year or less for a very few patients to 10 or more for another very few patients.
This retrospective study
practicalpainmanagement.com...
found the median duration of pred management for PMR was 5.9 years. The figures they quote fit well with what I've seen on the forums in the last 10 years - and I'm afraid that, while SJ's rheumy is very well respected she knows I disagree with her! No, you may be less likely to find straightforward cases on the forums - but no-one who joins the forum at the outset knows they will be complicated or not. There is no way to predict which group you are in.
I do know a few who were through PMR or GCA in a couple of years - but I also know that some of them had a second episode a few years later. One lady was off pred for GCA in 2 years in a textbook manner, 4 years later she developed PMR! Given the performance it is to get to see a rheumy in many places in the UK I'd suspect the majority of any sort of PMR patient remains with the GP and the rheumy never gets the feedback on how long the PMR stuck around.
I think that what you say is likely to be the case. These symptoms are bad enough without feeling like a failure or having the spectre of a scary ( to me) drug looming over you.
Couldn't agree more...
"she knows I disagree with her!"
Me too and that goes a long way back, well before we met up.
By the way jinasc. I got my Flexiseq today and for the first time in ages, I came downstairs using both knees equally, rather than kind of sideways. I can hardly believe it. Thanks so much!
Lovely and long may it help you,,,,,,,,,,,,,,,,
As I say, just like WD40 - Flexiseq works
What on Earth is the active ingredient?
Sheffield Jane
FLEXISEQ™ is clinically proven to relieve joint pain and aid mobility by lubricating joints with osteoarthritis – and it has no dangerous side effects. The drug-free gel, manufactured by Anglo-Russian company Pro Bono Bio, is the first over-the-counter product in Britain to use cutting-edge nano-physical science to ease the agony of patients.
"A breakthrough in liquid engineering, the innovative new gel is simply applied onto the joints twice daily and left to dry".
The above is part of the explanation this is the link to the full article.
gmjournal.co.uk/pm-hails-dr... - this is best explanation.
It was supposed to be available on prescription from 2014, it has not happened yet and that is so sad as many people just cannot afford it.
I use the expression works like WD40, because that is how it seems to me..........a squeaky door, stuck screw etc etc, one squirt of WD40 bingo.
Sorry if my odd sense of humour bothered you............
Not at all wD40 explains it well. I love your jokes. Thank you for taking so much trouble!
I am having trouble with reducing pred,l managed to lower to just 3 mg.,this had taken me about eighteen months,down from 30 mg. l then had a flare and had to increase to 5mg. I have a problem with a pulsing noise in my head,which my GP said could be the PMR pinching the blood vessels in my neck.l am afraid to reduce my dose because when l had the flare it affected the inflammation in my neck and my pulse was all over the place,missing beats and struggling ,it really scared me ! I am afraid that l will develope GCA if l try to reduce again.l find this tinnitus very depressing as it is there all the time,and often keeps me awake at night.l would feel so much better if something could be done about it but nothing ever is.l have not had a blood test for over one year now,l am going to mention this when l take my next prescription into the surgery.l am sure that if you reduce slowly you will hopefully be able to come off the steroids,but it does take time ,which varies for each person.lt does seem that the lower doses can be more unpredictable ,l hope it all goes well for you,Good Luck !
I have definitely had that fizzing and pulsing noise and sensation in my ears and head. It has almost gone now that I am on 5.5 mgs. I blamed it on Prednisalone, I’m glad that GCA didn’t occur to me, I am a panicker. To me it felt like a drug induced symptom. I wonder if you could be referred for heart checks to put your mind at ease. I was and everything was fine. I had a test/ scan to see if my Aortic valve was functioning as it should. My blood pressure was consistently different in each arm. Of course it is another potential site for Vasculitis . All was well. To my mind you are doing great. My goal has been 5 mgs, it feels kind of safe and negligible for side effects.
I've had PMR for ten years now, I've given up on it ever going.
What problems do you still have VA? What dosage of pred are you on?
I was on 7mg for 9 months then had a awful flare, and now on11mg,just about to reduce to10mg fingers crossed,have never been able. To get below 7 mg, every time I get to7 I get a bad flare and have to go up again , keep trying, going very slowly,
Are you on prednisone
I am taking 30 mg and seems to be working good
I don’t think I could take this for 10 years
The average time quoted in recent American research is 5.9 years. You maybe much luckier. Don’t taper too fast and pace your activities. Val has been unlucky.
Actually you don't have a choice,just have to take what ever it takes, to have a life without too much pain
I've managed to get down to 4 mg in just over 12 months but at my recent rheumy visit, he just said I needed to keep reducing. Unfortunately he's one of those who seems to think that you need to get off pred as soon as possible. He dismissed the pain at the top of my spine as wear and tear even when I said that I was only 55 and had never been ill in my life until the PMR symptoms started when I was 53. I still suspect Psoriatic Arthritis but he won't have it. He kept saying I have busitis in my hip even though I told him the MRI showed Inflamed tendons. I think if you do get a decent rheumy you are very lucky. I'm just going to plod on with the reducing .5 per month and see what happens. As long as I don't get a bad flare I think I can cope.
My Rheumatologist told me last week that I have Psoriatic Arthritis causing widespread joint pain. I have Psoriasis in my feet only and scarlet burning feet in bed at night. I have had it for years longer than my PMR diagnosis 3 years ago, it was discounted then because of the localised nature of my Psoriasis. I was also told I had Fibromyalgia by my first Rheumatologist, this has never been mentioned again. I think they guess.
Yes, I don't have much faith to be honest. I've had psoriasis sine I was a teenager so maybe I just think it's more likely to be Psoriatic Arthritis. I really dislike the way my rheumy wants me to get off the pred, as if any of us want to be on it longer than we have to. The only reason I'm going along with it, is to see if it has been masking anything else. Do you think you have had Psoriatic Arthritis all along, rather than PMR, or can you have both?
I think you can have both. It was however, being used as a lever to get me off 5.5mgs of Pred alongside Methotrexate. The Psoriasis is getting more troublesome as I reduce. My ears are itching, I used to have it badly in my ears, they went back to normal with Pred. Maybe that’s the big secret, Pred helps many things.
It is!
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