Just wondering if others question the inexact science of rheumatology. Seems the diagnosing is a
crap shoot, filled with what the Drs. call false negatives, and a lot of guess work. Also, is stress a major flare cause? ( PMR 1.5 mgs) This site is a blessing. TY all.
Isn’t science an inexact science?
Yes, but auto immune seems inexact to a fault. Even my rheumy indicated as such. Just gets discouraging after a while. Thx for yr reply. I was just wondering if others felt that way.
The truth is we know very little about auto immune diseases, perhaps one day things will improve. We keep being told red wine is good/bad/good/bad for us! We really are in the stone age.
Well. maybe 5 past ...
Given that we have to keep trying different things to see if they work, I guess red wine theory is another that needs testing 🍷
You are right the red wine theory definitely needs another few tests!
Sadly I do feel that way. Discouraged . I m wondering if the pred is responsible for my stress period at the mo. I went from 3 1/2 back to 5 . Pains eased, no immediate stress around , but my head is in a mess . Depression , easily raged, not consistent. Terrified it’s Alzheimer , so rather blame pred .
Depression , easily raged, not consistent.
At low levels of Pred, much more likely to be adrenals stuttering- rather than Alzheimer’s -
healthunlocked.com/pmrgcauk...
Oh I do hope so DorsettLady. Husbands eyeballs pop, he quietly goes the other way and later it is like nothing happened . 😳
He’s probably as confused and worried as you…. it’s not always easy to talk about.
mines just the same and son. “Just pull yourself “😂
Hopefully it will pass for both of us .😁
Sounds like you have a good husband.
I get that, yes....
Have to say I'm grumpier in the mornings now and have some irrational thoughts at times. Come the afternoon and evening though, I'm positive, active and cheerful......
Yep, problem is we are a very diverse group of people with different lifestyles and habits as well as genetic make-up so what might be true for one is not true for all. I seem to be one of those people....I have all the symptoms of PMR (sister and mum have it and my symptoms seem identical) but because a blood test (anti-CCP) indicated RA, I'm being treated for that. Thing is while the positive blood test does mean I will develop RA it's not proof that I have it now. Likewise for my family members that are on the PMR treatment pathway a negative RA blood test does not mean 100% that they don't have RA. So who is getting the right treatment? All of us - because the blood test is conclusive, only me - because we all have RA and they are seronegative or only them - because although I have a positive blood test, I also have PMR and the RA is minor (I will say that the RA drugs are important anyway to stop the symptoms developing whether or not it's active).
Stress is a major factor in flares.
TY so much. Validating. I Gottarelax too. 
ALL medicine is a fairly inexact science - it involves the human body and is more a dark art ...
Yes - stress is a major trigger to start and for flares.
We have a radio program called White Coat Black Art!
cbc.ca/listen/live-radio/1-...
TY R U in Nova Scotia? Wish I was. I am a Mainer but am in Florida and its darned hot. Heat index 115. Interesting title of radio program.
Yes. Be careful what you wish for! Our heat index probably hasn't gone higher than high 30s Celsius which is about the only good thing I can tell you. This may not be the case in coming years as the North Atlantic is getting too warm. NS has suffered its own share of climate related disasters this year, so I suspect there aren't any truly safe places any more. Started with an unusually mild winter with the exception of a very short extraordinary cold snap which decimated a number of crops, including killing grape vines and destroying nascent fruit blossoms. The cold weather didn't last long enough to kill off the invasive pests. Winter drought was followed by unprecendented forest fires which destroyed many homes. Then we had a whole month of drizzle and rain and fog, and since then the occasional sunny day, including days of horrible heat and humidity, interspersed with horrific rain events which have caused major flooding and infrastructure damage. And the mayor of our biggest city is still yammering on about bringing a CFL team here, complete with building a white elephant stadium while hundreds of people have become homeless over the past few years because of things like "renovictions". Meanwhile covid has become a forbidden word, ignored by the authorities, and people are still getting sick and dying. Going to hospital even to the ER I now consider would be a death sentence for people like me. I despair for the human race.
you need a laugh to cheer you up. Get Farley Mowat The Boat that wouldn't Float.
Oddly enough the best book I've read lately for improving general outlook is I Want A Better Catastrophe by Andrew Boyd. Not a barrel of laughs, but what I need.
Long time since I read any Farley Mowat, however, so maybe time to check him out of the library. The Dog Who Wouldn't Be and Owls in the Family?
My hold on The Boat Who Wouldn't Float has just come in. I hope it ends more happily than The Dog Who Wouldn't Be, but I have been enjoying immersion in Mowat's work. Thank you for your recommendation. Discovered that he was born in Belleville, Ontario, where my daughter and family live, so when he describes the area (Lake Ontario, Bay of Quinte, etc) I can actually visualise it!
TY so much. ON 1 1/2 and w/not go back up unless I absolutely have to. Will rely on Tylenol as long as I can. Sickness and death of a loved one. Very Stressful!!.
I'm so sorry to hear this. Look after yourself. This is the time to be be very kind to yourself.
"Sickness and death of a loved one. Very Stressful"
Yes - been there done that. And you may need some extra pred just for that as the demands on your body require a bit more cortisol - and if your adrenals can't come up with the goods, maybe you need some steroid in tablet form. I did and I was on a lot more pred than you at the time.
Loss and grief from the death of a loved one can be very stressful….and so can the fallout such as all of the responsibilities and administration that follows. In turn, this certainly can impact PMR and even require higher doses of pred to avoid a flare. This I know from experience.
Never underestimate the negative impact of stress on our condition…even good stress like getting married, travelling, retiring, etc.
Most people on this forum will tell you that too much stress will cause flares. I also have to keep an eye on my diet, sleep and exercise to keep things on a low ebb.
Some medical science is very straightforward - the setting of bones, the stitching of wounds, antibiotics for infections, childbirth ... The immune system, though, is something else entirely. Very complex. A lot more like cancer, or schizophrenia, or something like that.
I think sometimes we think that medical science is a lot more advanced than it is. Maybe we take the broken bones, cuts, and everyday problems and extrapolate that everything else is like that too. The human body can be ridiculously complex.
I think we're still in early days when it comes to autoimmune diseases. If you think about it, the idea of autoimmunity itself dates back only to the 1950s (Freund).
I remember being finally diagnosed and feeling like I was out there on the cutting edge of medical science. It was actually kind of fun at the time. Now, though, I've learning that that comes with way too many uncertainty, confusion, frustrations & drawbacks
I wonder what it was the old folks called rheumatiz over 100 yrs ago.
I was thinking the same thing about my mother's complaints of rheumatism. No pills were taken. Oil of wintergreen was used, which had a strong smell.
Think they just called it part of the "process of getting old", which probably covered a multitude of problems which are diagnosed as something specific today.
yes either getting old gracefully or a crotchety old timer who grumbles. Must have been excruciatingly painful.
Yey, I'm sure they had to put up with a lot of probably uneccessary pain and discomfort.
My late father and his mother both had severe arthritis..The only treatment was aspirin which gave them both dreadful stomach ulcers. I remember as a child being told Granny having 'Rheumatism in her head' . That didn't make sense to me at the time, but having developed cervical spondylitis myself in my late twenties I know how much she suffered. How she coped without strong painkillers I don't know. They were tough in those days!
Most certainly - often discussed on here……and no Pred to help in most cases
YOWZA!
Both my maternal grandfather and a sister of my grandmother almost certainly had PMR in the 1950s. It was put down to rheumaticks and a consequence of aging. No treatment, they just got on with it.
Same with my Mum. Rotten.
After the brain the immune system is the least well understood aspect of the human body
I always find the diagnosis thru steriods strange .. ie if they work you have PMR if not you don't! Any other conditions diagnosed this way. ? ?
It isn't actually quite as simple as that and it isn't 100% failsafe even if some doctors think it is. But PMR is characteristic in responding quickly and dramatically to a moderate dose of pred - moderate being 15-20mg in general. Using a much higher dose takes away the evidence value as other things such as inflammatory arthritis will respond to higher doses. The pattern of response over time is also helpful - some people respond a bit but slowly and then stall. Others respond initially but then the symptoms return. Still difficult to work out what's what since the PMR response only happens if you are on the right dose and 15mg often ISN'T enough.
One dr wanted to give me the highest dose possible another at the same surgery wanted to give me the lowest!! Felt very random!! Thx message
If you consider science to be a systematic study of natural phenomena, it makes more sense. In the case of a lot of bodily processes, including autoimmune, we still have some way to go with that study. Until doctors have better tools in terms of detection and diagnosis, they are working with one arm behind their back, and have to relay to a degree on judgement and experience and a significant amount of good luck. And at the moment, the treatments themselves are often pretty blunt instruments. The cynical bit comes in when you wonder why we aren't further down the road, when autoimmune conditions of one sort or another are fairly common and then you realise that unless someone can make a lot of money from investing in the study, progress will be slow. Mind you, I have been reading about the number of middle aged people stopping work due to ill health and the consequential loss of an experienced work force, the government are considering a number of initiatives to get us all back to work. So maybe they will start chucking some money at it soon. Good luck with that one. My body and mind are both knackered. In my case, they would have had to improve the work environment long ago instead of flogging me half to death first. There's my cynical bit for the day. The good bit is that I don't have to go to work, I'm not rich, but I'm not cold and I'm not going to starve either.
My rheumy said there isn't much incentive for the pharmaceutical companies, as not enough sufferers to warrant the output of research money. 
But, that's just his opinion. And then before I left, he made sure to give me a brochure about a new PMR med. So, I guess they found some money and the drug companies are having the Drs. spread the word. And the beat goes on. I'm sure someone will want to know....the name of the med is Kevzara
I think the average age of PMR sufferers has a lot to do with it, aswell.
The problem is that the "average age 72" they quote is at age of diagnosis - many younger patients wait a long time to be diagnosed. It took me 5 years to get a label and many are assured it is fibro bevause they are too young for PMR. And obviously that increases the average.
More recently there have been loads of much younger patients - and adding in the rapidly rising retirement age, the economic effect is increasing.
It's an irony, isn't it? I was diagnosed 64, but reckon I had it since early 40s. Amazing that I managed to hold down a job until age 62, considering how ill I felt for the last few years. But as I have commented before, if you rule someone out on the basis of their age, younger patients will never figure in the main cohort of patients. Often when learning about disease, the outliers often tell you more about a condition than those who are considered classic. It's a foolish mistake.
My husband had a Dr., who always said that if you wanted to know what was wrong with the patient, ask him.
I agree with you, it does get frustrating.
The real and immediate problem is that many doctors, in their arrogance, act as if it is straightforward and apply a standard treatment. Perhaps they even believe it, in which case they are deluded as well as arrogant. Some of the experiences on the forum are horrendous. The rheumys I have come across have been pretty consistent and helpful but I think they are more cautious with GCA. It's when you get into PMR territory that some of them become ageist, sexist and patronising.
Hi there just have to say I don't have a Rhemu, as soon as I said no to methotrexate he didn't want to know,and the few time I did see him was a wasted day thy said and done nothing, hope you have better luck. X
common story on here Harrywogan. Sad isn't it?
Well I stayed with mine because I needed the Pred scripts and my PCP wouldn't give them to me.
One hundred percent agree. New rheumatologist says I don't have PMR, but instead have arthritis although I have all the symptoms of PMR and no traditional arthritis symptoms (I have no pain in hands, knees or feet). I am VERY DISCOURAGED.
I can relate. Changed rheumys and carried the misdiag of RA along with me. Had to fight with him for almost year to get Pred. ( Have a hx with PMR, so know how it feels. ) Have appt with him so have to hurry reply. Re. RA My factor was neg, my CCG? ( sp) was neg. I had no synovitis in my hands, Xrays were neg for OA . He finally gave in and gave me the pred ( big deal 10 mgs) but it has worked. He continues to call it RA/PMR. I told him I dont want to carry a false diag around with me, He wont change it. Talk about discouraging. For a year I went to him and walked away angry and disgusted. And minus $40. Was too hard to get an appt with another so I stuck it out so I could get the Pred. Suggest you get a new Dr. but continue with this one till you can. Good luck to you.
Yes I feel like it’s a crap shoot. I was given Humira and swelled like a turkey so if had to go to the hospital put me on 60 MG’s. My RA at that time said I don’t understand why these drugs don’t work for everyone I was shocked I said to her because everybody’s body is different. She never like that answer and I do feel absolutely that stress that can come from childhood along the way path of your life has a lot with it RA .
Wow, is this some long thread! You hit a deep vein, bonmaine!
Yes, rheumatology IS a dark art and far from a science. My gastroenterologist told me that that is why he didn't become a rheumy! Judging from how few rheumatologists there are in my area and how many people need them, I think there are lots of doctors like him who decided to avoid the field.
Of all the medical areas, rheumatology seems (at least to me) to be the least understood. That said, I am grateful for the little that IS known.
I recently polled about 5 or 6 participants on this forum who live in the northeast U.S. for whether they had a rheumy they could recommend. All but one said "no" and one said "You don't want mine; I'm looking for another." And one said he had a new (to him) rheumy who he thinks is great. (I'm checking into that one, once I can switch my insurance to an insurance he accepts.)
Good to get all the validation. on this site. TY I met with him today and we had a good discussion on how rheumatology is inexact and in its infancy. He feels confident in the future of medicine, AI etc. Said he likes the science because of its inexactness and trying to figure out the answer. I thought to self well at least he's honest but that info will make some of us uncomfortable.
