I believe that my health is my responsibility. Based on my own knowledge and advise from the medical sector I should come to a decision how to proceed, with or without Prednisone. Now 6 months in this journey and found already ways to make life acceptable with PMR (in the current state), by improving my mental and bodies strength. The morning pain is slightly down and even forget sometimes during the day that I have PMR. But the smoldering inflammation has it risks but Prednisone also. I invested 4 years in eliminating many health issues and succeeded without the use of medication. My first priority is to keep my newly gained health, second to eliminate as soon as possible the root cause of PMR. Third to reduce pain and fourth to reduce the substantial time I spent daily on mitigating the side effects of PMR. Comfort and pain reduction are for me less important as long my health is not compromised. This set of issues and goals can not be solved all in once so need to to weigh the risks and benefits for each. But I can’t find yet any statistical information about the risks of not treating and treating with Prednisone. Also what influence has Prednisone on the length of PMR.
So basically on what research reumies base there treating protocols as they are likely based on the average goals and expectations from patients, and that is likely not me.
Does anyone has this information or know how to get it?
My PMR was undiagnosed for a year when it had morphed into GGA. At the time of diagnosis I couldn’t turn over in bed & consequently it was taking me 20 mins to get up. Prednisone gave me back my life & the side effects of the pred pale into insignificance against having advanced PMR & the very real risk of going blind.
Can't help with the Rheumy research, but sure others can. However, if your body is in pain then whether you ignore it or not your health is compromised. The pain is your bodies way of telling you something is wrong and please, if possible, do something about it. You can either ignore it and suffer from the effects on your quality of life and the possible/likely chance of further long term serious damage or look at the possible remedies.
Without Pred I would still be unable to move, in agony and with no life worth thinking about. Yes, like all medication it can have its side effects, many of which it is possible to mitigate with a change in lifestyle, food etc. Equally, for some people the side effects, are minimal.
The "side effects " of pred for me were being pain free after 9 months and able to work and live an almost normal life. I had no adverse side effects that I know of and just over 2 years later am off all meds and back to normal.
I suggest you look at the results of studies on stroke and heart disease were meta analysis shows that inflammation significantly increases the risk of heart attack and stroke. Good luck, I was immobile without pred and it has significantly improved my quality of life and helped me to cope. I too eat and exercise well and am very health conscious. However, I think the risk benefit balance for me is in favour of pred.
Hello. I don’t think you will find any long term, large study research where PMR patients are either treated with Pred or not. Since Pred is known to be the best drug around, ethically you can’t withhold treatment from one cohort of people as it is knowingly doing them harm and/or sentencing then to a life of misery. What research have you done yourself so far? Please send us links if you have found any because it is always interesting to have new stuff to read.
I worry about the comment, “comfort and pain reduction are for me are less important as long as my health is not compromised”. The pain and discomfort is caused by uncontrolled inflammation so it presence is a sign that it is being compromised. This is why docs are at pains to control it, not just so someone can get dressed in the morning.
Steroids are not thought to affect the course of the illness, just reduce the damaging inflammatory effect until the autoimmune activity dies down of its own accord. Up to 20% of people go on to get GCA and blindness is a high risk. I had just that and GCA and I can tell you 15mg (PMR start level) is a walk in the park compared to 60mg and above.
Bear in mind also, doctors for some unknown reason seem to never think about how the patient can mitigate the side effects such as weight gain and diabetes and rather view them as inevitable. Many on this site are living proof that this is not so but never the less their risk benefit analysis seems to never factor this in.
Thxs for your reaction and article. In the article they mention ESR of 100 or higher for GCA. My last test was 25 so still have a bit room for taking the risk until I have finished my research. I know the symptoms and won’t delay a second for treatment when I suspect GCA with prednisone. I understand that you got GCA while you were on a low dose Pred. Right. In that case I can get it also when I am on Pred., so not direct an argument for starting Pred, unless I have a higher risk without a low dose. Without statistics I stay in the dark. You are right that probably no one will go without treatment, I am stubborn I know, but got mistreated for diabetes and had to reverse it myself. My best friend was in the same boat at the same moment and continued the advise for treatment while I went my own path with Keto against mainstream protocols of that moment. Dr. Told me that I take a Huge risk eating saturated fat and denying meds. My friend got a stroke, than a heart attack and has now severe liver and kidney damages due to the medicines he used. 5 years younger than me and used statins. Hope he makes it to the end of the year. For PMR untreated I know my hearth disease risk. See my response to PMR.pro.
There is actually no absolute link between ESR/CRP and developing GCA and any paper that suggests that is wrong. There is a proportion of patients with both who don't have ESR/CRP levels above "normal range" though that doesn't mean they aren't raised for them, it is estimated to range from about 5-20% of patients and it frequently leads to problems getting a diagnosis. There is also a form of GCA called occult GCA - absolutely no signs or symptoms until one morning they wake up blind by which time it is too late to do anything, There are plenty of people on here with GCA who didn't have an ESR of any where near 100 never mind over.
Thxs. I am Meanwhile optimal primed incase symptoms pop up. Can save a few hours by taking 60 mg pred immediately before asking my wife to bring me to the ER. Have them already in case things go out of hand.
I was one of the 20% who had normal inflammatory markers, even when my eyesight was going in A&E. 60mg Pred returned my sight in 2 hours, some are not so lucky. No I was not on any Pred when GCA started. I was 54, very fit with a good diet that had to be gluten free and largely dairy free.
I think I did actually present what amounts to a risk assessment in the post I recommended to you when you first joined. Or maybe not ...
Ongoing even generalised inflammation in the body in itself poses a long term risk - increasing the risk of some cancers and damaging the tissue where the inflammation is situated. In this case the cardiovascular system and the blood vessels, in particular, are affected, increasing the risk of stroke and heart attack if the disorder progresses to become GCA which is known to happen in patients with PMR that is not managed. Many patients have large vessel vasculitis - affecting the large arteries which supply various organs. If a patient develops GCA there is a higher risk of stroke and MI in the first year or so after diagnosis despite antiinflammatory treatment with corticosteroids. The common ultimate effect of GCA is total irreversible loss of vision unless aggressive treatment with high dose pred is initiated quickly and even then, once visual symptoms have manifested there is only a 50/50 chance of saving sight. Even within PMR the inflammation damages various tissues within the body - I have atrial fibrillation due to the damage done to the sinus node and resultant dysfunction. Whether that would have been less with earlier steroids can't be assessed but it certainly is worse during a flare so is related to the inflammation and part of the use of pred is to improve the management of an incurable cardiac problem.
There is likely to be little in the way of the risk analysis you wish to find as a simple presentation - such knowledge and decisions are made on the basis of long experience of managing the illness and reading studies related to it. I have read enough in the 12 years I have been involved with the field to be accepting of the fact that corticosteroids are currently the primary approach and mainstay of management although there are options that may mitigate the dose. However - as another patient, I cannot convey the breadth of that reading to you in a simple post. I did describe the 5 years I had unmanaged PMR and the difference pred has made to me and you will get similar testimonials from many on the forum. In the case of GCA it would be totally unethical to not treat with the aim of making such a risk ananlyis - to know someone had an illness that put their sight at risk and not treat is medical negligence at best. Suspicion of GCA is enough to initiate high dose corticosteroids. PMR is another matter I suppose
If you say you can manage the symptoms to your satisfaction and are happy to weigh the russian roulette of no pred and risk of GCA/other CV disorders associated with it in the longer term (aortic damage, stroke, MI and peripheral vascular disease) against not experiencing the risks of pred - which can also be mitigated to a great extent for many people - that is entirely your decision to make. I have no desire to exchange my life now for the 5 years pre-pred. Many of the claimed adverse effects of pred are the same as effects I experienced with unmanaged PMR - except with pred I am practically pain-free and not disabled and housebound. And a study has found that the low doses of pred usually required for PMR management do not cause any additional such effects to what can be found in an age-matched population who don't have PMR and are not on pred.
I agree with PMRPro. I "managed" my PMR for four years using a lot of other drugs (pain killers and nsaids) as I didn't want to take steroids. It did go into remission but I now know that the symptoms I had then were mild compared to when it reared its ugly head a second time about 6 years later.
So 5 years ago it returned. I couldn't get out of bed and was in constant pain. My GP talked me into trying prednisolone and startede at 30mg a day. Within 48 hours I was 75% better pain wise. Never been completely pain free and my inflammation levels remained high. This meant that for the first year I didn't get below 15mg. In fact it's only on the last year that I have got down below 5mg.
I was so glad I found this forum as I have been able to access information and advice throughout. I think had I taken steroids when first diagnosed I may well have avoided getting it so badly again.
I have had side effects such as weight gain, moon face, hair loss etc but the benefits outweigh the negatives in my view.
I do have other joint problems including osteoarthritis in spine which has not helped but I can now recognise a PMR flare from an osteoarthritis one. I am lucky in that my blood test for inflammation mirror my symptoms.
There's so many things I would do differently if I had my time over but not treating the PMR with steroids is not one of them.
No idea! I was self employed so there was always a degree of stress. I cannot pinpoint any one trigger. I do think that there may be genetics at play as my maternal grandmother and aunt had "rheumatism" and looking back I can recognise their symptoms and think it may have been PMR. I didn't know my paternal grandmother but my father tells me she suffered from "Rheumatics" and I wouldn't be at all surprised if she had PMR too! In those days doctors were never questions and rheumatism was a catch all diagnosis for unexplained joint/muscle problems.
Thxs for your extended answer. By the way Russian roulette is simple to crack in regard to risk. One bullet in six chambers, I won’t take it. PMR and Prednisone have much more variables. As former CEO I am used to make decisions on solid and compleet information. And used to take full responsibility for my own decisions. And deal with my own ethics as well. Please note I am not trying to convince people to change anything. I did research on the risk for heart attack. There seems to be a strong correlation between hs CRP and HbA1c. Therefore I worked my HbA1C down from diabetic to 5.2 in last 4 years. As my hs CRP is still relative low for a PMR case (6.9 ) I am not in panic, but the risk is still far to high for sleeping comfortable. Also started 5 days ago LDN 1.5 mg. Hope to see results in a few weeks or otherwise increase the dose. Not expecting the silver bullet but might have some effect. Will run tests again in a few weeks to evaluate my situation.And here is the catch. Bringing my CRP down with pred than my HbA1c goes up tempering the benefit and complicating my health with other issues. I am still very insuline resistent, so get likely the full blow on Prednisone.While writing this reaction I could not direct find the table, but will dig it up and share it. Diabetes related issues are very familiar to me and scaring me as much. So have to find the less worst scenario.
In regard to your reference artikel I wonder why there are strong warnings for various extra risks related with Prednisone on the label as your artikel says the risk is the same in compare to people who don’t use it. For me conflicting but might be related to a low dose only. Or to the fact that the side effects are neutralized by the urge for PMR patients to change there lifestyle, something that can be seen on this blog as well.
In the long term, the warnings of side effects for any medication are based on the reports from users. Not on reports for similar adverse effects from non-users except during the clinical trials nowadays when a placebo group is always included in blinded trials. Most come from post-marketing feedback using the adverse events reporting system. You would be surprised perhaps at the incidence of similar adverse effects in the placebo group - the nocebo effect. If it is suggested there are possible adverse effects, people will develop them from water it they think it might be the drug they are taking!
There is no risk for people not using pred - these are effects often ascribed to pred that are occuring anyway. I had PMR for 5 years no pred. In that time I had weight gain, mood swings, depression, irritability, my hair lost condition and other things that escape me now that I often hear ascribed to pred. In fact, other than the weight gain where the weight redistributed itself to the usual pred-related places, those problems improved on pred. Once I discovered that cutting carbs helped the weight problem that improved too. You have to remember that PMR does come in various manifestation and for the patient who is in a wheelchair or confined to bed because of the symptoms, and it does happen, the likelihood of weight gain and the inactivity contribute to an increased risk of developing diabetes and osteoporosis, never mind depression and other mental health problems. Nothing in physiology or medicine is a simple quid pro quo.
My relative risk for CVD is 1.43 currently for what it is worth. My HbA1C is lower than there lowest cut off and my CRP is more than double than there max. cut of. So assume my risk is higher.
Here's a link to some research about the effects of Pred. The researchers think that there should be more interest in the long term effects of the drug - especially the adrenaline insufficiency. The article offers a good explanation of how pred works and how the metabolism is affected.
Thxs. This is a great artikel for getting a part of the puzzle. It gives a big warning for experiencing a sudden heavy stress situation. As I am at the moment experimenting with short burst of extreme stress on the body, to activate not used path ways, to improve my blood circulation and to make my body and mind stronger. It is clear I have to stop it when on Prednisone and should not promote it on this forum. Talking about hot baths, sauna ( direct ice baths afterwards), only ice baths and breathing technics. When coming out of an ice bath I am for almost 2 hours completely pain free, super relaxed and feel like superman. But don’t do this on Pred.
The big stress situation is a problem when one is on low doses of Pred after being on higher adrenally suppressive doses of Pred, until the adrenal function restores itself. When on higher doses it is like having super cortisol levels so stress isn’t going to cause a crisis. I do take issue with the extreme stress making you feel better therefore it’s good. Your endorphin production goes into overdrive in these situations and since this is a powerful feel good ‘drug’ because it works on the opiate receptors in the brain. It is also a pain killer you will feel better for a couple of hours and then it wears off. This is one reason why people get hooked on extreme gym workouts. This is doing nothing for the inflammation I suspect because the symptoms come back when the endorphins wear off.
Correct. In fact LDN medicine works also with the same logic. Pushing up adrenaline 3 fold after about 3 hours. Seems to last longer but to short on it yet to see some results. LDN seems to be longer effective and also reducing inflammation, but it is still experimental, of label, not well known and not mainstream. Will see with further blood tests what it gives.
I have monocular vision following an extremely late diagnosis of GCA - in fact post sight loss - and extremely lucky due to fast acting Ophthamologist and large doses of Pred.
For 2 weeks (the longest and most stressful in my life, even more stress than bereavement) nobody was sure other eye would be/could be saved, fortunately it was.
And although I’m obviously biased, I know that without steroids I would have lost all sight, and despite the risks (perceived or actual) of being on Pred to me there was no hesitation in taking first, subsequent or last dose.
My response may not be based on the statistical advice you require, but it is based on a primeval urge to retain what sight I had on 14th April 2012...
..that I have done, and fortunately the side effects of Pred were minimal and in the great scheme of things almost irrelevant.
Were you already on the Pred for PMR with a low dose when you got GCA? If a Low dose is preventing the proces of getting GCA I will for sure see this as a plus.
No I never had PMR, and I hadn’t been diagnosed with GCA either....I had symptoms for 18months but they were misdiagnosed as others things including frozen shoulder etc.
I had never heard of either until I was diagnosed in hospital A& E and then I researched them.
A low dose is no guarantee of not getting GCA, that invariably needs a much bigger dose -
PMR - starting dose 12.5-25mg
GCA - starting dose 40-60mg - in my case 80mg.
Some people have both from outset, others may find GCA comes along after a year or more than PMR, or conversely PMR follows GCA but that doesn’t seem as common.
I associate my getting PMR from my use of Simvistatin from 2013-2015. I had the same symptoms then, and when I quit taking statins, the shoulder, neck, hips, wrists, and hands quit aching. Five years later they all came back in the form of PMR.
So. . . . . If you are taking any statin drugs for cholesterol, I would suggest you cease doing so immediately.
I agree. But I would make my homework first and if my Doctor is advising against it, ask why. If he can’t answer, or clearly is not update on new research or is not allowed from the hospital to follow other protocols I am wary. In my country hospitals are candy shops/ drug dealers who stick to outdate protocols that are keeping you hooked on them. It is for them all about money and Big Pharma.In Europe it is more government organized so probably better. Realize also that one specialist can’t know everything. It happend me once that I visit the hospital for 2 different reasons on the same day. For blood sugar she advised me to do more sports and eat healthy. I was already following the advise of the hospital nutritionist and walked, swam, biked, sea kayaked, hiked for an average of 4 hours a day. When I told her this she said that I clearly didn’t take her advice serious enough and she doubted my words, as my sugar creeped up. Next visit to the bone and muscle doktor because I had serious muscle issues that were not resolving. He advised me to slow down, because I had to realize that I was an old man. When I told him that I am only 58 yrs young, that I would not give up on my body yet and that another specialist told me the opposite he became angry and told me that if I don’t listen to his advise I will be on his operating table within a month. If protocols don’t work they seem to think that it is the patient who is the problem. I solved it myself within 4 months by doing tons of research and implement the findings. Both issues had the same root cause. Carb sensitivity.
See for statins on youtube David Diamond - Demonizing and deception in cholesterol research. Can a statin doctor fan debunk this video if he looks at it?
Finding the root cause is my priority. I think the most likely cause for me is natural plant warfare chemicals. Oxalates (google Sally K. Norton) or lectins (Paul Mason). But likely it is for everybody different.
When you started statins did they warn you for possible getting PMR? As I saw in the literature that it is a known possible cause? I don’t use it, so have to look at other possibilities. The root causes are probably for everyone different. In my case I suspect Oxalates (google Sally K. Norton). A second one for me could be lectins (google Paul Mason, lectins). So I eliminate them as much as possible in my diet since 5 months (carnivore, which is also zero carb and zero fiber). I changed my meat from chicken en pork to beef mainly, for getting the right omega 3 and 6 balance ( since 2 months). Do many other things at the same time as the inflammation clock is ticking. But most of them have only effect after many months or not at all in the case I am looking in the wrong direction. So this portal is very helpfully in getting the complete picture, so everyone many thxs.
I had shingles and then PMR. Anyone who has had chicken pox a a child still carries the dormant virus in the body. It can erupt due to several reasons, stress to the body and mind included. I used to be a competitive long distance runner, so have always done the "right" things concerning diet and exercise.
Not only did the doc not warn me (and this was before I started researching on my own), he said nothing about taking CoQ10 supplements. He just kept insisting on my taking Simvistatin. Like I said, once I read about another guy my age, having the same exact symptoms, I quit. And changed doctors.But guess what, the new Internal Medicine doc, spent a lot of time trying to get me to take a different brand of statin. Regardless of how I reacted to statins. It’s like they are all in lockstep.
My cholesterol didn’t vary from 235 to 240, whether I was taking statins or not. Both my father and mother had high cholesterol and lived into their 90’s. My 42 year old daughter, competes in half IronMan marathons and probably a 3% body fat. Her cholesterol has always been above 220.
Drilling down those doctors are mentaly hacked by BigPharma or have financial interest or forgot why you are visiting them. Assume your goal was becomming and stay healthy and live a long live in happiness. Why are those doctors only focussed on Cholesterol levels.Was that your goal?
Meanwhile rigid research find out that LDL cholesterol is a bad predictor for CVD. HDL is and the ratio tri/HDL.
That people checked in the hospital with CVD are having also often low LDL, so causation is not proven.
That people with high cholesterol often live longer. That mortality and disease as diabetis, cancer, .... are higher on statins when the benefits are not very clear. So why statins?
David Diamond debunked it nicely on YouTube.
It will take probably another 5 years before everyone realized they are tricked. I bet that BigPharma will wait an oder 5 years ( to let the dust settle) and than they will come up with a new revolutionary pill to increase LDL. For Prednisone I am less worried that BigPharma manipulates dokters and patients, as it is a generetic drug.
Also, after taking Prednisone for seven months, I developed Macular Degeneration. The Ophthalmologist suggested one of the causes could be steroids. So I am in the process of changing my PMR medication from Prednisone to Hydroxychloroquine. So far, it seems to be working and I quickly reduced my Pred from 6mg /day to 1mg (in 1mg /day increments every seven days).
That’s what I have read also. HCQ causing vision problems. The doc said Pred is much more dangerous used in the short term (1 year or less) than HCQ is used throughout your lifetime (Lupus patients).
Objective criteria should be used in a broad evaluation of any drug. Bad, good, .... is for everyone different.Than comparissons can be made over all options and decisions can be made with each patient based on his goals and medical background. Hope the medical sector will clear the mist for us and share it with us, so we can take our own responsibility in decisions.
Well I'm in trouble then aren't I? After nearly 12 years of pred all I can report is 11 years of an enabled life and no identifiable adverse effects. No symptoms of Cushings, not even moonface (even though I've been overweight most of my life), no change in bone density, no sign of diabetes, skin and hair are fine, have a waist and normal legs (not a lemon on cocktail sticks). Increases in inflammation in a flare make the atrial fibrillation caused by the PMR a/i disorder worse. Doctors are unreasonably terrified of using pred - even when it is a lifesaver. If they concentrated on the mitigation of any adverse effects it would serve their patients much better than telling them it is dangerous. By doing that, when pred use is inescapable as in acute GCA, patients are too scared to accept that and that doesn't help with adverse effects either.
Like Hosers2, I recently switched to Hydroxychloroquine after a year on pred for taper resistant PMR symptoms. Pred worked like a dream for reducing my pain and fatigue, but it gave me heart pounding anxiety and weight related side effects. But 4months on I’ve now found great relief with HCQ together with a much lower pred dose (down to 7mg from 25mg at my highest). Hopefully I will be able to continue my reduction...But as PMRpro correctly pointed out HCQ is not risk free by any means and I am monitored for retinal toxicity. But if tolerated well, HCQ has a long history as a successful long term treatment for several chronic autoimmune conditions. Unlike pred or methotrexate, it is an immune modulator not a suppressor so systematic effects are much less. Anyway, here is a link to a small, but valid study following PMR patients without pred treatment. It finds that many patients actually go on to develop an antibody negative Rheumatoid Arthritis. The author argues that that their results show HCQ to be a rational alternative to pred, but more studies like this are definitely required to validate these findings.
Polymyalgia rheumatica: observations of disease evolution without corticosteroid treatment
Results: ...after 6 months of HCQ use, 80% achieved remission...
Conclusion: ....Treatment of acute PMR with HCQ was a rational alternative to CS [corticosteroids] use even if progressive additive synovitis had not yet occurred.
There is some dispute amongst rheumatologists that it is entirely valid - the platform at the time had a very dodgy reputation for its peer review process.
I don't understand how he can effectively say that most PMR diagnoses are really RA. Pred wouldn't prevent or even disguise a progression in RA symptoms so the evidence is still there and would be accompanied by difficulty in reducing the pred dose. I had had untreated PMR for over 5 years before I saw a rheumy who took any interest and he did exhaustive tests for RA, including imaging. If HCQ were really so wonderful for RA, how come methotrexate is the gold standard first line approach for RA throughout the world? I'm not saying it doesn't work - obviously it does for some, but his evidence doesn't entirely add up.
I completely agree with you about the claim regarding the underlying RA. But it’s a bit of a circular argument to say that HCQ doesn’t work if pred and methotrexate are gold standard treatments - nobody will try HCQ if it is not recommended. I just think that a reported 80% remission rate should not just be accepted blindly, but surely more studies are required to validate or dismiss this finding?
Oh definitely - but it is the funding that is the problem. There was a study that showed no benefit in PMR using HCQ which is why it doesn't get much mention. So it is one-all!
The last thing I want to come across as is confrontational about this, especially to you PMRpro. I honestly find your advice and knowledge second to none. But I agree, funding for health research is always an issue. What with most PMR suffers being ladies “of a certain age”, our conditions typically come low down on the list of research priorities. My interest in this came when two rheumatologists disagreed on my PMR diagnosis with the second suggesting HCQ for something more chronic. I was terrified to try it as I believed it would not help if I actually had PMR as pred was allowing me to live my life. I was only able to find the research I posted regarding HCQ treatment for PMR. I remember looking at one negative piece of evidence that was listed in some guidelines but I dismissed it at the time. I guess this is the research you are referring to? Perhaps you have the link as I’d like to look at it again to see if it is a fair comparison. 😉I would say that length of treatment would be an important factor as after 4 months I continue to get an improving effect from HCQ..
Thank you for the links. Sorry to disagree, but I'd go a lot further than say that this isn't a fabulous study. In fairness to the guidelines (from your second link) the panel state that HCQ has only been investigated by a "single very low [quality of evidence] retrospective study reporting no benefit regarding relapse rate". But after taking a closer look, I am actually angry that this single piece of research is being used to underpin guidelines that dismiss HCQ as a potential PMR treatment option. I am especially angry if any members of this panel take a superior view on the scientific rigour of the American Brawer study compared to the one that they cite.
The work cited in the guidelines is a study by Lee and colleagues who analysed the treatment, clinical course, relapse and remission of 78 Korean patients over the course of at least one year (the precise study length is not specified). Of the 78 patient cohort, only 24 were prescribed HCQ and their the only clear statement relating to HCQ was: "Hydroxychloroquine was used in 24 patients (61.5 %) and methotrexate in 12 patients (30.8 %). Patients who took hydroxychloroquine (83.3 %, p = 0.019) had relapse more frequently." Their definition of relapse was: "Relapse was defined as an aggravation or reappearance of clinical symptoms associated with an elevated ESR or CRP (ESR > 30 mm/h, CRP > 0.5 mg/dl) in a patient receiving steroid or after discontinuation of treatment." This suggests that the full extent of their HCQ assessment was to ask whether after removal of HCQ treatment following PMR symptom relief, did patients relapse within (around) a year. This in no way provides any clue as to whether HCQ can provide some relief from PMR symptoms - however, this is what is implied by the panel guidelines. Although Lee and colleagues define some of the steroid doses in this study, they provide no details of the HCQ or MTX dosages tested, whether either DMARD was used alone or in addition to steroid treatment or for how long. In my book, a lack of these details make it a poor piece of research, especially in comparison to the Brawer study. Yes it was also a relatively small study of a total of 62 patients in comparison the ones carried out say for for methotrexate (results from a total of 194 patients were assessed during the guideline preparation), but at least all important details were included.
It also has be said that perhaps caution should be exercised when using results from Korean cohorts to guide treatment of western PMR patients. An epidemiological study from Kim and colleagues (2014. Epidemiology, health services and outcome research) confirmed that the incidence and prevalence rate of PMR in South Korea is much lower than in western populations and they cite both genetic and environmental factors as playing important roles in the pathogenesis of PMR.
So maybe not a fair comparison after all... do you agree that this puts the current research tally more like 1-nil in favour of potential HCQ effectiveness? 😉 Obviously more studies need to be carried out. But it just surprises me that there would be any reluctance to this idea. So many rheumies pressure patients to go through unrealistic pred tapers and frighten them with the horrors of long term steroid use. Guidelines suggest they can only offer methotrexate as an alternative for some. Given its track record for lower toxicity and relatively low price, I’d have thought they’d be falling over themselves to determine HCQ effectiveness for PMR. Especially, if as Brawer reports, it could result in up to 80% remission of PMR symptoms in western patients 🤷♀️
I really am not convinced by Brawer (but I sit on the fence) - nor are a few rheumies I've discussed it with. It is only very recently that I have heard people on HCQ say it helps them - and there have been anecdotal reports from members of forums for some years. I also know several people with the vision problems - and unless rheumies use it properly and monitor that remains a risk. As I say, I suspect there may be a sub-population for whom it works, just as there is a sub-population of RA patients for whom it works.
Spot on for your last part. The general attitude in the health care is we know and we know what the best is for you. But we are all different and therefore we should get more information to make our own decisions and free of commercial interest. Ofcourse there is a categorie of patients that expect a quick fix and leave it to the doctor completely. I have only one body I am not going to waist it and want to decide myself based on the pro en cons of each treatment. And here is the catch, I can't get it and I don't understand why alternatives, risk assements and costs are not offered in a treatment plan. Maybe I am arrogant if I say that I don't feel stupid.
Started LDN not known and available in my country, Although it is not a silver bullet and not researched in depth in effectivness for PMR (works for Fibro in 50 % of the cases) it has no serious side effects and is very cheap. Waiting for research from BigPharma? Forget it as they can't make money with it, so LDN probably will never make it to the mainstream. And if it is not mainstream the attitude is we don't recommend it.
DadCue, I'm sorry to hear that you received similar responses when posting about TCZ as an alternative PMR treatment. As I've said before, I have the utmost respect for PMRpro and others that regularly post on this wonderful forum. From my perspective, the short-fall in the research has been clearly acknowledged here, but as a responsible forum ambassador PMRpro also rightly conveyed guidelines that dictate many rheumatologists views on alternatives to pred. These guidelines were written by the experts and I believe that conveying these recommendations is a wholly ethical way for any forum member to respond to queries regarding pred alternatives.
However, after looking over a small fraction of the available literature on this topic, I have been shocked by the flimsy nature of evidence* used to underpin the bold statement that there are no real alternatives to pred. Perhaps, a more valid statement would be: there has been insufficient research to fully investigate alternative PMR treatments? I guess that this ultimately leads to the same outcome for us as patients, since rheumatologists have to adhere to these guidelines when deciding our treatment plans...
Whilst anecdotal posts suggesting alternative treatments are clearly not valid research results, I agree that a lot could be gained from them being shared and discussed more freely here (as long as they are clearly labelled as anecdotes to avoid any fake news issues).
(*Full disclosure to anyone rightfully questioning my ability to assess the quality of scientific research. No, I am not a health-care professional but I hold a biomedical undergraduate degree and PhD in molecular biology. I have published 12 peer reviewed research articles and 2 reviews. During my 10 year scientific career, I have also gained extensive experience on the opposite side of the peer review process.)
Why don't you gather your findings together and send it to Prof Sarah Mackie at Leeds? She is very open to ideas for looking at improvements on current practice in PMR. I would like to point out that the "pred is the only real option" comment is based on pure practicalities. Nothing else is approved for PMR in any country (including the USA last time I looked) and some healthcare systems don't have a lot of option for off-label use. TCZ has been through clinical trials for GCA - not PMR other than a few very small pilot studies. Clinical trial results are required for western drugs approval authorities to consider it - I don't know about other systems which is why I don't include them.
Funding for expensive medications is usually subject to conditions - and in the UK and Australia that is for limited use for certain proven diagnoses of GCA and Takayasu's disease. There is also a limitation to the duration of the treatment. So, under current regulation, corticosteroids remain the mainstay of management of PMR. It is the only drug shown to reliably manage the symptoms. TCZ would do it, I'm sure, but unless you have the money to pay for it yourself you aren't going to get it, not even with private insurance cover - which even if it did cough up for TCZ initially would make the renewal premium so high you might as well pay for it yourself. They don't "do" chronic illness cover so they can keep their premiums appealing.
I completely understand the cost issue you highlight, but this cannot be a legitimate argument for any resistance to trialling HCQ. The BNF indicates HCQ costs £7.11 for one month supply at 400 mg per day (maximum dosage) compared to £8.90 to supply someone with 10mg prednisolone per day for a month.... the overall cost is likely to be much more for pred when you factor in the long term health impacts effects that are well documented for both drugs. Furthermore, HCQ is not a new wonder drug. It was originally approved for medical use in 1955 and in 2017 it was listed as the 128th most commonly prescribed medication in the US so all it’s pros and cons are well documented. HCQ could potentially provide a great alternative for many people who desperately looking for long term PMR relief from a medicine that is less toxic than steroids or methotrexate. Surely it can’t just be me who thinks that this type of trial would be something worth supporting..
I was just quoting 1mg tablet costs from BNF NICE.. still somewhat relevant for people not wishing to take multiples of 5mg. Also, as I said, any cost benefit analysis would also include long term health implications. But sorry, isn’t this just splitting hairs?! Im confused that I seem to be meet by an adamant defense of the pred or pain status quo that many PMR suffers grapple with daily. I’m just pointing out what I believe to be a potential oversight for an alternative treatment option. Sorry, I’m just not one to lay down and accept a situation that I believe to be unfair!
Are you paying for a clinical trial? That really is what it comes down to.
It would have to be a proper randomised and regulated study to mean anything - and that costs 10s of thousands of pounds to set up even a small study and even if the medication is cheap as chips. Testing and assessment requires more time than a straightforward OP visit and under controlled conditions with documentaion. That takes staff, staff costs are high. One study a few years ago was put on hold for months when a research fellow left to go to a "real" job - and the funding for a replacement was held up.
Not related to PMR, but one of the reasons my husband retired early was because the study time allocation he had had to carry out similar studies, superviing a Fellow usually, was removed under his NHS contract - he was never paid directly for much of his research done in the UK and all analysis and writing was done in his own time, evenings and weekends at home. The same for grant applications. We used leave allocation to go to science meetings and he was scientific editor for a proceedings until last year in order to have the travel and accommodation to it covered. I did the technical and, latterly, the language editing for it - our lives were governed by that from July until after xmas every year. I haven't been on holiday without a computer and needing wifi access for years!
And when it comes to TCZ - it may work wonderfully well, but at £12K per year per patient just for the drug without monitoring it isn't going to replace pred for all PMR patients in the UK any time soon.
suggests about a quarter of us have "Long PMR" but there is no way to identify who is at risk of that at the outset, there have been studies on differentiating between LORA and PMR and that is next to impossible. So you would have to treat pretty much all cases to avoid the Long PMR GC factor.
I saw this video in my initial research. She is lucky that she could get finally a prescription from a LND familiar doktor. I live not in the US and doctors, although they do online consultation, would not help peole in other countries. So had to solve it without any assistence myself. On blogs I found a solid client oriented pharmacy in India,which is not accredited, that was willing to send me 20 50 mg pills with a prescription. I wrote my own, explaining why I can't get one, what I am going to do with it and refered to extensive research in regard to the safety. They accepted it and sent me the pills for around 1$ a pill. I crushed 1 pill, desolved it in 50 ml distilled water to make a low dose possible. Use now 1.5 ml per day in a glass of water =1.5 mg. The research dose is 4.5 mg so I start very low.Please note the FDA didn't approved it yet in a low dose for auto immune diseases, so even in the US it is in de grey zone. In my country it is also illegal to import medicines. Ibuprofen comes over the counter and is by far more dangerous.
Only 10 days on it. Will give it a few weeks, see how I feel and run ESR and CRP and let you know. I don't expect the same spectacular results as pred, but for my situation it might be usefull.
These are all very interesting comments. Being relatively new to PMR (June 2020), I definitely do not claim any expertise. Nor to I have any healthcare credentials. I have been a general contractor my whole life. So I have been pretty active, and physically fit most of my 71 years.
I only have my own experience to judge by. When I was diagnosed with Macular Degeneration, I had just reduced my Prednisone from 8mg to 7mg I had been on a schedule to reduce Prednisone by 1mg every month.
The rheumatologist agreed to make the switch, put me on 400mg Hydroxychloroquine and said I should reduce the Pred by 1mg every five days. And to take 10mg Methotrexate once a week. She also prescribed 1mg Folic Acid per day. I have followed those recommendations, other than I took seven days for each drop. I am currently taking 1mg Pred and will until the full two months on HCQ has happened. I have not had a re-occurrence of PMR to date. And all my monthly bloodwork have shown normal levels.
Dropping Prednisone from 7mg to 1mg in 6 weeks seems pretty drastic, just based on others experience on this blog. Yet, it has worked good for me so far. Of course, I pray that the HCQ will actually work for me. If it does, while anecdotal, it still could be an alternative to steroids.
"It isn't that drastic"It is for a patient who has been on longterm pred as most are in PMR - it is too fast to allow safe return of adrenal function and would put many patients at risk of an adrenal crisis. It is perfectly acceptable for a patient who has previously shown adequate adrenal function and has only been on that level of dose previously or higher for a short time. The steroid sparers may spare the pred dose - but only low pred for long enough will allow the return of adrenal function in a safe manner. And for that the patient either needs pred or hydrocortisone for adrenal support while the HPA axis regulates itself.
A reminder to everyone that this is the forum for PMRGCAuk and we are guided by our UK consultant rheumatologists and therefore promote treatment in line with their medical advice.
Whilst some of you are looking for different answers, they might not be found here.
Also, I'd like to remind members to consider their words and tone in their responses to each other. I will keep an eye on this thread and will remove any comments that are not considerate of the person they are replying to or to others.
Fran
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