I have a good friend that is a GP that seems to know quite abit about Auto Immune conditions, particulary PMR. I think his wife may have PMR. But, anyway, he feels anybody that has PMR or GCA in remission can prevent another attack simply by taking a good dose of prednisone when a stressful situation occurs in your life such as an injury or surgery. Both times I've had PMR have been triggered by injury and/or surgery. I've been learning that so many others also seem triggered by stressful situations.
So, does the community think another PMR/GCA attack can be stopped by taking doses of prednisone when a very stressful situation occurs such injury/surgery?
I've been reading that this logic is used to prevent flares, but i suppose this can also be applied to PMR/GCA folks to prevent another attack.
Not in his words, but this doctor also thinks that the human body's autoimmune system is designed to fight off all these bugs and parasites and that the human body no longer has as many "parasites" to battle so it gets over excited and attacks the body when a stressor is introduced, triggering the system to attack itself
Anyway, I thought that was an interesting conversation with the GP that I thought I would share with the community.
Certainly an interesting concept - but some of us would end up on permanent pred!! How do you define a stressor that justifies how much pred I wonder?
Something that DOES concern me is the desire to double up on immunosuppressants in managing PMR/GCA in order to reduce the dose of the least immunosuppressive drug pred. It concerns top immunologists too.
I would define a stressor as surgery or a specific injury. Something out of normal, unusual. I wouldn’t consider a stressful day or a cold as a stressor such that taking prednisone to thwart off another pmr or gca attack. It would need to be something stressful to the body that normally has a defined end.
Interesting, do you know what a “good dose” means and is it a one-off? Also, what happens if the stress is sustained? I’ve heard that theory before about the need for parasites to coexist with. Tricky one because as always when we harbour potentially negative organisms there are those who are fine and those who become poorly.
I would probably consider a 20 mg of prednisone if I was in remission and had a planned surgery or a major injury to keep the body from attacking itself again. I’ve had this a few times and not even 53. So, obviously myself likes to attack myself for some reason when the body is injured badly
I don't understand the logic: as far as is known the pred doesn't have any effect on the mechanism of the autoimmune disorder. It just mops up the inflammation that is created.
I’m with Pro on that one, all it would be doing is standing there like a wicket keeper catching the balls of inflammation rather than stopping the bowler.
I can’t imagine an anaesthetist condoning this pre surgery.
Neither can I imagine pred being administered due to major injury (I’m assuming major as in a hospital inpatient) over and above possibly hydrocortisone if carrying a steroid card (or up to a year after).
Airways, breathing, circulation, pred? Can’t see it.
It wouldn’t need to be administered by anasthesiologist. Just if you are healthy, prone to pmr, and have encountered a major stressor such as surgery or injury. Talk to go or rheumatologist about getting on moderate doses of prednisone to help slow the immune system. Seems odd to me that people spend years trying to kick pmr or gca and there are absolutely no research or thoughts on how to prevent it. Particularly when research knows that 10 percent of the people get it again. I’ll be darned if I don’t try and have a plan to prevent a potential third round with pmr. Assuming I get over the second round.
Would you seriously take 20mg+ pred without telling an anaesthetist?
And the hoohaa some GPs and rheumis create when people maintain on low doses rather than reducing, I simply can’t see them prescribing a ‘just in case’ stat dose.
no silly... you get prescribed prior to the surgery by the gp. you tell the anasthesiologist you're taking prednisone prior to surgery...
I think it would help, but obviously the research is not there to back it up. Again, little is known on this subject cause there is no research. But I'd bet my house the prednisone would help slow the system down to keep it from attacking itself.
I really doubt they would decline. I was put to sleep yesterday for colonoscopy and the anasthesiologist didn't blink when i told him i was on 15 mg of prednisone. went to sleep, procedure was done, woke up, not a problem.
Yeah it went well. No polyps. My Rheumatica said my problems with pmr May be instigated by cancer. Well at least I know it’s not colon cancer. Hopefully it’s just pmr being pmr. Thanks for asking
Interesting. However, as someone whose Adrenals are pretty sluggish, I would want to know the impact of the pre-emptive strikes on other physical systems. I have had jobs where everyday can be a stressful emergency. I expect that’s why I am here.
Something to think about, that’s for sure. I have to say, major stress events kick me in the backside! I’m talking big here. I have helped myself to an extra couple mg when life hurls a big pile of “doo” my way and find it a successful way to deal with the inevitable day after flare. I never considered doing the same when prednisone is at zero🤔.
Interesting, but I not sure that many GPs in the UK would be happy to prescribe steroids before an operation “ just in case” of a subsequent flare; and if like me you had been in remission for 2 years before a planned knee replacement any tablets I had left from my GCA treatment would be out of date and too low in dose to be effective anyway.
However, having said that, having 2 replacement operations within 6 months of each other may well have caused a flare of my GCA.
Bit difficult to ascertain initially as I have arthritic shoulders and my GP who used to give steroid injections has retired so no recent treatment, and therefore more painful than usual.
My ESR was raised, but only discovered by chance because I had included it my annual blood tests in February . On test results under GP’s guidance took 20mg for 5 days, ESR retested, reduced - so steroids stopped.
Following GP appointment and further investigation “we” decided inflammation could have been raised as a result of replacement operations - knee in particular can cause that apparently.
I’m still not 100% sure, as shoulder pains have increased again, so I have tried a couple of experiments with self medicating the remaining Pred I have. In April 10 days at 10mg certainly cleared most pain, and this week 5 days at 7.5mg seems to have worked - so is it a GCA flare or just controlling any remaining inflammation from the ops?
Have an appointment with Orthopaedics tomorrow, and another ESR test and GP appointment booked next month, when “we” shall decide the way forward.
Thank you. But 2 joint replacements probably have not helped that. Still they have been very successful - so if they’ve caused a reoccurrence it’s a small price to pay.
Would I rather be virtually housebound and in constant pain - or on Pred? No contest really.
When I know I’ll let others know.
Both times I've had PMR, it's been at a time when I was arguably the best health I've ever been since say 30 years old. Prior to PMR both times, I had no colds or flu's or sniffles at least 2 years prior. My cardiovascular system was exceptional. I was in incredible shape. This gives some creedance to the thought that PMR could be created by a stressor(injury or surgery) and that the autoimmune system was "bored" and felt as though it had to attack something... That's why I think the immune system could be slowed back by prednisone when a major stressor such as injury or surgery to prevent an autoimmune attack. Particularly when the body is healthy. This, I feel, could be a preemptive strike to prevent a healthy body from attacking itself. As I understand, the prednisone slows back your autoimmune functions.
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this is copied straight out of google, so it's got to be true:
"Steroid drugs, such as prednisone, work by lowering the activity of the immune system. The immune system is your body's defense system. Steroids work by slowing your body's response to disease or injury. Prednisone can help lower certain immune-related symptoms, including inflammation and swelling."
Steroids work by slowing your body's response to disease or injury.... So, prednisone could slow the response. This, I feel, could be a preemptive strike to PMR/GCA.
Not necessarily at all. Everyone has different effects due to pred and you cannot generalise at all. I have had various events where the pred has made not the slightest difference to healing - from torn ligaments to surgery.
It doesn't sound like the advice I usually receive or have read about from people on the forum.
There are alot of dynamics in surgery or trauma incidents , like accident or injury.
I know some people have been advised in the past to reduce Pred before some types of surgery because of immunity / healing concerns .
Other people discuss being given a boost of Pred during or post operation but under regulation by the doctors involved in the procedure and after care.
When it comes to an accident or injury you can't take extra Pred before the event because you don't know it is going to happen.
After the event people aren't usually advised to take extra doses immediately either , again as the incident itself may not bring on a flare of PMR but could cause other injury related pain that will respond to standard pain relief .
In cases of stress , trauma , or injury it is usually best to be guided by your bodies reaction and whether you can feel the warning signs of PMR flare from the symptoms that present themselves.
It is the warning sign which is used to take a increased dose to prevent a full on flare , rather than an assumption that a flare could happen so an increase should be taken just in case.
The same is true for other causes of flares in PMR pain and warning signs from over activity like stressful events , holidays , big family occasions.
These may also cause a need for an short increase in steroids ( or step back in your taper) , but shouldn't be judged as though it will definitely mean an increased dose and be taken automatically in a " prevention is better than cure" sense.
In many of these scenarios rather than instantly increasing the dose before or instantly when something occurs , it's often advised to use better planning .
By this I mean , we often suggest people be aware of when events are going happen and make sure they do not try to continue tapering their dose at the same time ( as the two types of stress could cause a flare).
Also, that sufferers plan their day , weekend or week to prevent the need to increase the dose by adding enough rest between the activities .
Also reducing stress by giving out the more physical jobs and preparations to others or spreading out chores over many more days.
Planning prevents the need for that possible increase of Pred.
If you chose the sort of preemptive strike with considerable increases of Pred without knowing the need for it , it is likely to eventually create the same negative pattern over time of " yoyoing" that many people go through at the beginning of their lifestyle adjustment to GCA/ PMR .
When people try to taper too quickly or do too much then have to boost the dose to compensate for it , therefore actually lengthening the time it takes for them to control PMR and taper off the steroids.
This is a great response. But people, such as me, who are inclined to getting pmr, and are healthy with full remission are subject to a stressor such as a planned surgery or an injury, what do you have to lose if you get on prednisone for a few weeks to settle the immune system down? I see this may not allow you to heal as quickly but it sure seems better than to have pmr again for years. The is little risk to get on prednisone as a preemptive strike, but the rewards are huge if you can dodge another round of pmr
I can understand your point , especially as you are conscious that surgery or injury may have been the final stressor for your initial episode and recurrence of PMR , but it really isn't quite as simple as your view implies.
Taking steroids like Pred reduces your immunity . Slowing down the reaction of the immune system , rather than just stopping it " overreacting" which happens when taking steroids is not the best course to take if you aren't sure that PMR is present or going to return.
It could cause the sort of infection reaction or slow healing to the system that rather than stopping or reducing a flare could actually cause one if the PMR is still part of your system but at present you are symptom free.
The bodies reaction to the return of a drug with a number of side effects could equally cause another type of body stress that could bring on a new attack.
Sometimes autoimmunity is a reaction to inappropriate drug use even if it is using a drug that you have taken before.
PMR isn't like an infection , it's a self limiting disease.
Taking Pred before a possible event isn't like boosting your defences as you might to protect yourself from the flu (like taking vitamins and minerals , eating the right foods , rest , exercise etc. )
Pred doesn't act like a vaccine.
If it did Doctors would be recommending all past sufferers to be taking a healthy dose of it to keep PMR at bay before major events after they are in Club Zero .
If you have had PMR once and then get it again , especially if the disease has not been inactive for very long , it is more likely that PMR was still present in your system and would rise its head whether you took the steroid or not.
Taking steroids , just in case , especially when PMR is in full remission rather than being preventative could actually be more dangerous , especially if your adrenal function after long term steroid use is still low.
And as someone else pointed out , the shelf life of steroids is short , so if you have been in full remission for a long time the drug would be out of date and again possibly cause more harm than good.
When you were in full remission , how long was the period of time between your two PMR episodes?
Just reading back through your posts , when you joined 25 days ago you didn't mention that you were diagnosed with PMR six years ago , just that you had, had knee surgery which had similar symptoms to those that you were having three weeks ago when you were diagnosed and new to PMR.
Were you actually diagnosed with PMR after the knee surgery and put on steroids for it then as well or are you just assuming that you were suffering with it back then too because the symptoms were similar?
Yeah the symptoms are very similar this time as last. I was never diagnosed with pmr las time. But I have no doubt it was the same thing as now what I have now. The pain was not forgettable and relentless particularly in the shoulders. Both times the worst pain I’ve ever had.
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I never took prednisone the first time six years ago. Just lots of ibuprofen which barely helped.
To be honest , as you were not diagnosed with PMR specifically six years ago it would be wrong to speculate on that .
What I will say though is that if the confirmed diagnosis of PMR that you got three weeks ago is the " second" episode you have discussed , you are not , as you say, in full remission but actually still have PMR , it's just that the pain/ inflammation is currently under a certain level of management .
I assume you are still taking Pred and are not tapering yet .
Or , if you have already begun to taper too quickly , or have already decided to come off your medication , it is not surprising that you are concerned that PMR pain will pop up again . You'll have reoccurring symptoms / flares very soon from any number of triggers if you are not on medication because you do not recover from PMR in a month.
I do think you are still in the period of acceptance , and learning to understand the simple facts of the disease , and how to adapt your lifestyle needs to accommodate PMR , need to be your priority right now.
Three weeks into diagnosis and treatment isn't the time for theorising on the philosophical and medical questions surrounding PMR .
It's not the time for dinner party style debate .
Now is the time to ask for more simple and practical advice .
It's the time to listen to the advice of other forum members who are further down the PMR treatment route and have valuable experience to offer , and learn which more tried and tested tips and techniques would be of more benefit to your individual needs.
Concentrate on what is under your control right now and you will feel alot more comfortable with learning to live with your PMR.
And who will provide the funding? It all sounds easy - it is far from it.
"sure feels like PMR"
Possibly - but PMR is not the disease, it is the name given to a particular set of symptoms that tend to go together and which are the outward expression of an underlying disorder. There are probably 8 or so conditions which can present with very similar symptoms of stiffness and muscle pain but they can range from certain cancers to other autoimmune forms of inflammatory arthritis. Patients who have been diagnosed as having PMR have been found to be more likely to be diagnosed with cancer in the first year after diagnosis, the incidence falls thereafter. That isn't just because they are often under greater medical observation but because the original diagnosis was wrong, the PMR was due to the cancer, treating the cancer treats the PMR. The same applies when inflammatory arthritides present with polymyalgic symptoms but without joint erosion or, in the case of spondyloarthropathies, without the other typical signs such as psoriasis or uveitis. Something like 1 in 6 cases of "PMR" turn out to be something else altogether.
You have a PMR diagnosis now , of course that it is not speculation , but you are finding it difficult to adjust just as we all did .
You certainly shouldn't stop posting , but starting with posts asking the questions you need most help with or finding what direction you can get support from for your individual needs , that will help you most.
As time goes on , keep posting to let us know your progress , ask for other types of support ( practical and emotional ) you need which will change as you taper or symptoms change , and you will also be able to help others with tips of your own based on your individual success and experience and give encouragement to new members who join and are in the position you are in now.
Eventually , you will have read lots of the research and facts and know which are most credible or practical in PMR management and be able to point others towards reading or advice that will help them too .
You will have a full book of your own tips that you can post and pass on and become an " Aunt" yourself , that's how we all help support each other through on our forum.
For now take the helping hand we are very happy to give.
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Hi
No, l don’t think quoting posting is a good idea, as Blearyeyed has said, it’s now time to learn to adapt to your condition & leave ‘The Big Questions’ until you are more settled on your Meds.
I fell quite spectacularly a week ago and have had a stressful month work wise and am not doing well PMR (I think) wise at the moment. Also feels like I have flu like symptoms, super tired, arms / shoulders heavy, pain in neck and back of thighs.
"Patients on chronic steroid therapy may develop secondary adrenal insufficiency that can manifest as full-blown adrenal crisis in the perioperative period. When these patients present for surgery, the anesthesiologist must decide whether to administer perioperative stress-dose steroids to mitigate this rare but potentially fatal complication of chronic steroid use. In doing so, the patient’s risk for adrenal crisis must be weighed against the risks of unnecessary steroid supplementation."
This article includes a interesting table describing Surgical Stress by Procedure and Recommended Steroid Dosing (table 2)
I've just read through the thread and my personal opinion is there's no point taking pred "just in case". Considering how difficult it can be to taper off pred even when one is apparently in remission I don't know why one would risk taking it when there are no symptoms, only a (probably remote) potential for symptoms. PMR/GCA can't be prevented except possibly by lifestyle changes. I don't quibble with the necessity for pred in the case of surgery, or as treatment for other conditions which arise. But for PMR/GCA, I'd just keep plodding on through the taper as well as I can, and never take it again if I successfully achieved Club Zero.
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