diagnosed with pmr 2018 been on pred all that time twice tapered to 0 and had to go back on. Been tapering 5mg to 1 mg 7 months. Feel dreadful. Fatigue like never known, stiff arms,shoulders, thighs, groin(hip?), hands, wrists. Sleep almost zero.
Gp totally ill informed about pred and pmr. Been referred to rheumatica 5 months ago but not even an appointment ( Shropshire)
When I was diagnosed was my shoulders and hips and was in utter agony. Pred cured it and at 5 seemed to control it. These stiffness in the places I mention and fatigue- is this likely pmr as my Gp just wants me off pred but am almost bed bound and no specialist appt on the horizon. Gp wont let me go back up on pred. Amon1 mg.
anyone comment please
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Barry2007
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Is there an alternative in the practice? Is a single private rheumy appointment an option?
And frankly - what you describe sounds to involve a fair bit of adrenal insufficiency which is hardly surprising after the time you have been on pred. But the history sounds very PMR-ish and it can last far more than 6 years - I've had it 20!
I ve been banging on about adrenal insufficiency so GP referred me both to endo and Rheumy byt 5 months later no appts. Its so hard to know wether if Gp lets me go back up on steroids or what to do what is the treatment for adrenal insufficiency. My Gp says no such thing
She to,d me to stop steroids at 5 mg as low dose and low dose steroids are not a problem it’s the strength off the dose whereas the research I have done is also the length of time.(6yrs for me). Been left alone all that time but right at this moment I wonder if I am dying. I am so despondent and feel so helpless. Last October I was cycling 50miles a day 2-3 times a week. Today can barely stand but complicated with being diagnosed with peripheral neuropathy. And like the rheumatology no appointment in 5 months to date
Are you saying your doctor told you to just stop steroids when you were at 5mg? If so I am totally speechless. No wonder you are in such pain. Can you see someone else?
My husband liked ours as well -but she didn’t diagnose my GCA (and had 18 months to do so) nor did she twig my husband’s liver cancer -but the wasn’t alone in that!
She is totally wrong I fear - and it makes me concerned about her abilities. Stopping steroids suddenly at 5mg after 6 years ABOVE 5mg would be criminal negligence if you ask me. As piglette says - did she go to medical school!!!!
DSNS is under Tapering in the FAQs. The link to them is via the box at the top of every thread under the post. Then choose the appropriate alphabetical page and scroll down it.
All she really needs to do is a basal cortisol - a blood sample taken between 9am and 1pm. That indicates where on the scale of recovery you are. 5mg is definitely plenty to suppress adrenal function so why on earth she thinks it isn't heaven only knows.
There is no good reason to refuse to do it just because you are on a low dose of pred. Above about 3mg the results are unreliable and most endos will refuse to do a synacthen test but do show if there is any recovery of function, If there is none, then it is seriously risky forcing further reduction, A basal cortisol is a simple blood test, not expensive and will filter whether there is any point doing a synacthen test because some people do recover some function - some more than others.
Hi I don’t know how to add the thanks to all on here ? A new post or?….i and a computer idiot sorry. I wen to my Gp this morning which was a telephone appt but I demanded for it to be changed. I showed her some of these comments and she denied some stuff and agreed with a lot ( not sure if genuine) as a result she is not doing basal cortisol but something with dexamethasone? But she couldn’t remember so was going to look it up! Depending on result would get urgent endo appt. Also my whining to the rheumatology appts yesterday has led to my referral being revisited.
It’s weird because am out of bed today and not as much pain but still present. I am trying to differ between side effects of steroid titration and flare? As would like to be off if could after 6 yrs. if I end up back on I will look at rthe titration methods on here. I am so glad I have found this site.
Unfortunately I think my GP is the best one at the practice and 65 yrs old ready to retire but is listening I think ? Thanks for the advice I once again.
I have had a very rough 7 yrs of life and my health is suffering as a result.
I would say the dexamethasone test is not the correct one at present - IT is to look for EXCESS production of cortisol so it would make sense to establish if you have excess cortisol in the first place, Hopefully when she looks it up she will change her mind.
However - what do I know ... And if she's the best - heaven help you!!!!
Forgot to say - she seems confused about the difference between secondary adrenal insufficiency which is like Addison's disease in that it is a SHORTAGE of cortisol and Cushings disease which is an EXCESS of cortisol and what the dexamethasone suppression test it used to confirm.
When I got back and google it exactly what I thought but if ring back another 3 week wait for telephone appt. She even said test may mean taking more steroid well that will increase the cortisol??? I hate the lot of them pompous so and sos
No - taking more steroid will DECREASE the cortisol. The test she is proposing is to do that and is used in a disease called Cushings so identify why the body is producing too much cortisol. The body knows when there are more steroids in the body so signals that not so much of the body's natural steroid, cortisol, is required. It's like the central heating, the boiler doesn't switch on if there is plenty of warmth to keep the thermostat happy. Hopefully she will either realise her mistake or when she requests the test the endocrinology department will tell her.
Thank you, As I said she said that adrenal insufficiency is not really a “thing”and is argued about amongst Drs. Your life in their hands, just want to feel me. I am suffering low mood and anxiety but not sure related or just frustrated with debilitation and unable to partake in life
Not argued about by any doctor who has dealt with an adrenal crisis in a pred patient and the endocrinologists developed a new emergency steroid card during Covid. She will kill someone one day with that attitude. What DOESN'T exist is "adrenal fatigue" but that is an entirely different concept. And she should know the difference.
She needs this card brought to her attention - because it was created because of people like her. I;d speak to the practice manager - as long as it isn't her!!!
To be fair she may have said fatigue and I am just getting wrapped up in stuff I don’t know about and it is my error but I don’t know, I am just there for help. Thank you
But the point is, you do have signs of adrenal insufficiency, which she should recognise and test for, And she told you to just stop a considerable dose of pred after you have been on pred for some time - which suppresses adrenal function which takes time to recover. And she is suggesting an inappropriate test for your problem, you certainly don't have Cushing disease. Some of us develop Cushings syndrome because of the high doses of pred we are on but that is obvious why. You likely problem is LOW cortisol, not high.
Hi I don’t know whether I made myself very clear. When she suggested I come off them I initiated my own titration knowing stopping them is stupid as with most medications. And used a chart from a site in America. I wish I had found this beforehand, so, I have titrated from 5 to 1 mg managing myself over 7 months. I was suffering the fatigue even on 5 but the pain has ensued since 3 mg and I have been trying to look at as side effect of stopping but can see from the flare article that’s not so as way after 2 weeks. I spoke to a lady at the polymyalgia society who suggested I did 5 mg for a week then go back to 1mg which I did but don’t think felt any better. To me 6 yrs of steroids makes me think I have adrenal insufficiency not Cushing although a slim chap I have developed a big gut and don’t drink and eat well.
You are never tapering relentlessly to zero when you have PMR. You are tapering the dose in a process called titration to find the lowest effective dose for you at any given time. At 5mg it is impossible to know whether the underlying autoimmune disorder that causes the inflammation has burnt out or if it is still active. What you are describing is a combination of the PMR still being active AND your adrenal function not having kept up with the dose reduction. We see it a lot - doctors are convinced fter x years it can't be PMR so the patient doesn't need pred, they should stop it.
The adding 5mg for a couple of weeks is what we suggest for a flare due to overshooting the dose but we say to go back to the last dose at which you were good - and if 1mg wasn't wnough before adding the 5mg, it is unlikely to be enough after either.
Thanks for all the effort you are putting in for me, but it makes me feel very despondent as the dr today said no dose change. I only have a few 1mgs left and no 5 mgs. I fear I am going to suffer yet more. It takes 3 weeks for a telephone appt where I am. Also Drs dont like taking “ advice” do they. Why are GPs expected to manage this
Morning, sorry to ask. After going to the Drs yesterday, I have been up in the night with excruciating pain in my hands, and general stiffness but a new symptom right buttock and tissues up to and including my rib cage only right sided. Struggling to hold iPad today. Also my skin is peeling really awfully arms legs and feet. I showed her this yesterday and said nothing. Ihave looked through faq and cant see ribs buttocks one sided but am struggling holding the iPad. Does this sound like pmr. I just want go back on pred to stop this misery. Living alone I cannot function but was able go Drs yest but today awful
For what it's worth, my pmr presented with one sided rib pain (amongst neck pain, also)..not buttock pain though. I also had hip pain, but since I have had that side hip problem for many years, it's hard for me to tell what exactly is the cause every time it flares up.
They aren't actually - when they are out of their depth they are supposed to refer to specialists or at least seek advice. However - that requires awareness of their own limitations.
One sided buttock pain can be sacroiliac joint or tight muscles. If you are unable to mobilise or function because of pain you would be within your rights to call 999 for assistance - you may wait a while, that all depends. Is the peeling skin sudden? Just the sort of peeling from dry skin or more than that? None of that sounds like PMR itself although the buttock pain can be associated with it if you have something called myofascial pain syndrome as part of it.
Well I got a text from my dr today saying the test she wants to do is only done at hospital so have to wait, no offer of increase of steroids back to another 3 week appt. I hate them they need a royal commission on their service.
She said there were no parameters to judge it on which I know is incorrect. I have ordered and paid for one on line which I can ill afford really but cant wait when feel so ill. Thanks for your input, greatly appreciated. She’s too long in the tooth. Did you see GP voted the most Entitled staff in nhs today😂
When I have taken empirical articles in before asking her to read she said she was the dr and I was the patient and had access to material I hadnt and she was highly trained. Some people satisfied but not me
Good grief...I'm glad you seem to have shaken the doctor into some action. Hopefullly, you will be able to get some realistic and accurate info! Please let us all know how your get on. We assume educated Doctors KNOW something to help and diagnose, sadly that is not always the case...even here in the States!! My best💞
Do you mean your doctor just “told you to stop steroids at 5mg”.
Is she actually a doctor or someone who’s pretending to be one? Who in their professional right mind would tell someone to “just stop the steroids”. If only! I’d definitely ask to swap to another doctor at the practice (I have done this in the past).
Maybe you could call the rheumatologist department at the hospital & ask where you are on the list for an appointment?
See this re adrenals and what happens to them when you are on steroids - and you need to reduce steroids slowly once you get to low doses to nudge the adrenals to wake up again..
Would say a combinations flaring and adrenals struggling (fatigue is typical symptom).
Any possibility of seeing another GP in surgery - one that has a better understanding of PMR etc. Most would say that that reducing from 5mg had been much too quick -that when you need to slow fine for your illness and your adrenals
See this re adrenals - and your GP is putting you at risk of an adrenal crisis… she needs to be aware of that..
I was horrified to read this , Barry . I was also diagnosed in 2018 and have never been able to get lower than 8 mg . I am trying , but am under no pressure at all from my GP , who is very supportive. My latest rheumatologist told me that I may never get below 5 mg and he didn’t seem concerned by that . You need to find a GP who understands about PMR and adrenaline deficiency. Good luck !
I to confirmed PMR in June 2018 and started 25 mg and then upped to 20 mg. I have been trying over the past year to drop below 7mg. Even 1/4 mg reduction renders me exhausted and sleeping daytime and 10 hours at night. My GP is supportive, and understands quality of life important. I am not at the moment under pressure.
after seeing your post l am feeling so sorry for you , l was diagnosed in 2020 and have been on and off pred since then. I too was bed ridden and living on my own made me want to just give up on life. My brother moved in to look after me and over the coming weeks my mood and my pain l started to get better, l now have a heart condition and see the doctor on a fortnightly basis. All this whilst trying to run a business that lm needed in 6 days a week !!! I would give it up but the staff would not have jobs, l feel so exhausted l go to work plod through the day in a body and face l don’t recognise in the mirror anymore, a grumpy
As you can read we are all up in arms about how this doctor has been treating you. I feel so badly that you are in such pain.
I have two thoughts. Can you see anyone privately? Is there anyone who can take you to someone somewhere else.? I don’t know where you live but this seems like a serious medical crisis. I can’t imagine being knocked off Prednisone in this brutal way.
My second thought is show your GP this site and the responses especially of our experts. If it doesn’t educate her perhaps it would scare her that people are witnessing what looks like malpractice.
Can only agree with all the comments here about your GP. Where do these people come from. Going from 5.0mg to 1.0mg would have taken me a minimum of forty five weeks.
I too am shocked. This group was recommended by the GP (foreign) who diagnosed gca and pmr for me so show it to your GP. After many years I have got down to 3 pred and am taking the next drop very slowly. I am sure adrenal insuffiency features on the NHS website. Be assertive and get a better doctor.
I have also had PMR since 2018 and have been off prednisone a few times. Currently, I am steady on MTX and 12.5 mg of prednisone. I have done a lot of research regarding the duration of PMR, as most sources state it lasts 1-2 years. However, what is often missed is that people relapse, and more than half require treatment for much longer, some even indefinitely. Please see below for references. It is from a ChatGPT OpenAI query and nicely consolidates the knowledge. Even here in Denmark, where the rheumatology society has been very conservative, this is recognized, as well as the involvement of the hands and feet. Maybe show this to your GP:
"1) Initial Response and Relapse: While many patients initially respond well to corticosteroid treatment and may see significant improvement within 1-2 years, a substantial number experience relapses. These relapses can occur during the tapering process or after discontinuation of corticosteroids, effectively extending the duration of the disease beyond the initial treatment period (The Rheumatologist) (Mayo Clinic Connect).
2) Chronic Management: For patients who relapse, PMR often becomes a chronic condition requiring long-term management. This might involve continuous low-dose corticosteroids or the addition of steroid-sparing agents like methotrexate or biologics such as tocilizumab to manage symptoms and reduce the risk of further relapses (CCJM) (The Rheumatologist).
3) Long-Term Outlook: The duration of PMR can thus vary significantly. Some patients might achieve remission within a few years, while others may deal with the condition for many years, experiencing periodic flare-ups that necessitate ongoing treatment adjustments and monitoring (The Rheumatologist) (Mayo Clinic Connect).
4) Individual Variability: The variability in the course of PMR among different individuals means that while the average duration might be 1-2 years for initial symptom management, the overall experience of the disease can be much longer for those who relapse or have a more resistant form of the condition (The Rheumatologist) (Mayo Clinic Connect).
In summary, while the initial treatment period for PMR might be 1-2 years, the potential for relapses means that for many patients, the condition lasts longer and requires ongoing management. "
this post has been helpful to me Barry. I have been off steroids for about 3 weeks after having been on them for almost 5 years. I’m sorry you are in such pain. My biggest complaint is pain and stiffness in my fingers. Sometimes it feels like they are locking. I’ve also had the mood changes and fatigue. The link Dorset lady posted helped me pinpoint some of my symptoms related to low cortisol. I see my gp tomorrow and I’ll ask for a basal cortisol blood test to see what’s going on. It feels different than PMR. This forum truly is a lifesaver!!
I am still new to this but I have been fortunate to have a great rheumatologist. I have been unable for a year to get below 5mg and we are trying once again (with support of methetrexate) and she has encouraged me to increase back up to the previous dose anytime I return back to the PMR symptoms. We are trying it slowly again 1 mg decrease every 2 weeks til Sept. I feel your frustration.
I hate to suggest this, but a reduction of 1 mg every two weeks is not slow. Rule of thumb is not to taper by more than 10% of the dose, and below 10 mg that would be half a mg. Moreover it's important to stay on the new dose long enough to know that it is still enough to control the symptoms, which is usually one month to six weeks. The speed of the attempted taper may well be the reason you are unable to get below 5 mg. However it is also possible that disease activity is still enough to require that dose for a bit longer. Many of us get "stuck" at a certain level. In my case, for example, I was relatively lucky to get stuck at around 2 mg, but I was indeed stuck there for several years before eventually being able to reach zero.
Pred does not cure PMR, nothing does. But it controls symptoms until natural remission occurs.
As HeronNS has said reducing every 2 weeks is not slow even with MTX in the mix. And below 5mg much better to reduce 0..5mg time.
I took me as long to reduce from 10mg to zero as it did to get from 80mg to 10mg… once you get below 5mg it needs fo be really slowly…very little wriggle room unlike much higher doses. Too quick and all you end up doing is causing a flare - we see it time and time again on here.
Indeed. I took a year to get from 15 to 3 (which is amazingly good by any PMR standards). Then another year to reach 1.5, which proved too low. And another six years or so to get to zero.
Yes I am learning that the hard way. I have been on the prednisone for a year and a half and started at 80 mg. The lovely support group I engage with warned me about the « yo yoing » and I am trying to be more patient. Seems that when I go below 5 especially I see 2.5 I flare and my crp rises again. . 🥲 my husband keeps reminding me it’s not a race to get off the prednisone.
"Seems that when I go below 5 especially I see 2.5 I flare and my crp rises again"
That suggests to me that that has happened more than once? That is your body telling you that you have arrived at your destination: the lowest effective dose. Or the lowest dose that gives you the same relief you got with the starting dose. You aren't heding relentlessly to zero - you are doing something called titrating the dose to find the optimum dose for you.
I like my GP too, but when she says my pain (exactly like yours) is not a flare because my CRP is 5.3, up from 3. She says it's just arthritis which I have a wee bit in my hip, then I have lost faith in her "knowledge" of PMR and possibly GCA (no one will take the time to find out). I'm tapering from 10.5 to 10 mg, but the GP and rheumy would have me down to 5 by now and then possibly in adrenal issues, because the rheumy says "that doesn't happen to everyone". I find .5 reduction tolerable, but 1.0 causes pain issues. Ugh.
I haven’t seen a rheumy in 6 yrs despite suffering and largely managing my own steroids. The only input I have really had was I want you off them! I was seen by 2 empathetic muscloskeletal Drs in February, was referred as urgent to a rheumy and that referral was lost for 4 months due to “ human “ error. I was re referred and another rheumy dr at hospital downgraded it to routine. So months later still don’t even have an appointment. If you look at what the hospital trusts and Nice say they totally ignore it and I am surprised more people don’t die
Hi Barry. I'm in Nova Scotia, CA and my rheumy is notorious for "losing" paperwork. Thank goodness she found the referral to my Osteoporosis Specialist and then she was able to see me almost immediately. I feel your pain and frustration. I have 10 compression fractures. Had rheumy been on the ball she would have caught the bone loss on my first dexa. All the best to you. Keep at it.
how awful, i do wish they would do their homework before giving such restrictive advice - which is exactly what it is and not binding you must do. If I were you I’d print off some references and take them into the surgery for her to review. Then ask for a prescription for 5 mg pred for at least a month.
On another note, did I hear correctly, or was my attention drifting regarding elevatedIL6 levels now being used as indicative of PMR? Was it my interpretation, or are the diagnostic indicators becoming more restrictive? Think I may need to re-watch the videos.
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