There was a big article in the science times recently. I thought people here might be interested in reading what the NY Times science writer had to say about PMR/GCA. I'd be interested in hearing comments. I think some errors and omissions should be fixed. I don't have the bona fides to venture there though.
Getting the Right Care for Painful Autoimmune Conditions nyti.ms/33KyGfp
A very simply written, understandable, article. If only doctors and rheumatologists would hand something like this to every new PMR patient (having first explained the onset a little better perhaps - difficulty getting out of bed, getting off the toilet unaided, getting in and out of a car, not being able to drive, etc etc).
This article was posted a few days ago, not many responses, but I think the main conclusion was that the people interviewed had a “relatively” easy ride compared to patients on here. But as has been said before patients usually only come on this forum because they have a problem - so maybe there are plenty out there that do have an easier time.
healthunlocked.com/pmrgcauk....
If you read the comments we get a recommendation. They say how much better the support is here. Some of the stories are horrific including total sight loss.
Nice to see us mentioned. Dr Miller certainly has a bee in his bonnet about Lyme’s Disease doesn't he!
Just a bit!
Do you think he’s right ?
I really don’t know!
Can’t say I’ve seen any studies on it - especially in UK - maybe in US where LD may be more prolific. The initial symptoms can be confused certainly.
I got straight in on Ida’s mum link.🧐
I did have to subscribe to the NYT before I could access the article ( free) but a lot of the articles were good so I don’t mind. It was good to see a positive mention of our forum and the opinion that the U.K. knows more about PMR/GCA than the US. The article ramps up the seriousness of the conditions which isn’t always apparent with some of our medical care. Thanks for posting!
Have you read a lot of NY Times stuff? You usually get a few free - I did with this too.
It was a free subscription rather than the pound. It’s the scattering about of my details I mind.
I think for a media article it is excellent to be honest. I wondered what you thought were errors? Unfortunately, to get everything in you would need a couple of full pages and even that is a conservative estimate - and no-one would publish or read it.
Saying stroke most serious complication without mentioning irreversible loss of eyesight at same time, I know it's mentioned at beginning of article. Indicating you get better faster if diagnosed earlier (is there any evidence for that?).
I don't know but I have suspected that my swift diagnosis helped me.
I was annoyed that she didn't mentioned ultrasound to detect GCA. And I found myself wondering re connective tissue vs vasculitis disorder. Also the average time to recovery/off Prednisone was overly optimistic (see the discussion of Mrs Uffner).
Also, I wished she had mentioned cutting carbs as a way to moderate Pred. Weight Gain....if one is lucky.
I am being picky
I suppose there's only so much they can cram into one article but maybe the problem was the limited number of examples and the PMR one not really typical?
u/s isn't generally available for dx of GCA and cutting carbs is something we have discovered and push - most doctors know nothing about nutrition and not enough about pred to join the dots.
My Rheumatologist at Kaiser, HMO, has gotten U/S set up at the department here. I just wish other physicians took that same kind of initiative. I really feel blessed with the care I’ve gotten.
Someone was asking the other day if anyone did it in the USA - does your doctor know of others?
I don't know. Where does that someone live? I'm in California. I have Kaiser HMO health insurance. Redwood City, CA. I'll ask my rheumatologist.
Thank you for posting this article. I was able to access it easily.
Having lived with PMR for four and a half years, I thought it was well written, and gave a very clear explanation of the illnesses
Of course in the UK, those of us with PMR are generally treated via primary care, provided there are no complications.
There will always be differences of approach, so we need just to accept that.
My only issue is my usual bugbear, as it sort of implies PMR will be "go" relatively quickly, which only raises expectations. I just wish the article had referenced the Matteson report, which give the average of 5.9 years for PMR treated with prednisolone. If it goes into remission before that time, then that is great.
Paddy
Very interesting article. Thanks. 👍
The only thing missing I thought was that there was no mention of how important it is not to overdo things once the pain is relieved by the Pred.
Seems pretty accurate to me...
Interesting article but did anyone read the comments? The references to Lyme Disease by Dr Miller, as someone has already pointed out are interesting. He definitely has a bee in his bonnet about it but with recent coverage in the UK press about it I do wonder. Anyone know much about it? I’ve definitely had ticks before but no idea if I’ve had any testing for it. Off to check.
Another person quoted antitrypsin levels, PSV, a1-AT deficiency and PiZ allele.........off to research these now! Who knows.
After reading the article the question that I have is in these 2 quotes; " No one knows why a person’s immune system suddenly attacks the body’s own connective tissue" and the second quote; "blood tests are done to rule out conditions like rheumatoid arthritis, lupus, Lyme disease, vasculitis". So speaking of PMR specifically, Is this disease a vasculitis or/and a connective tissue disorder? Or is connective tissue also mean blood vessels?
Oh thank you for researching this Poopadoop. Now it is making sense to me. I read the part on the article where you can have all of the connective tissue diseases at once. HELP!!!!!!!!!! God forbid.
Hello everyone, my first time commenting and glad to find you all. I'm coming up on 2 years with PMR myself, was thankful to be diagnosed within a week by the ortho I was seeing for knee injury that would not go away (I think it triggered PMR) and after a rough first year on prednisone I got a new rheumatologist. I'm now tapering on methylprednisolone, currently doing DSNS to try to get off in a few months! At 3/2.5 mg now and hopeful, but realistic. I know how it goes. I was happy to see this article and shared it on my Facebook page for friends who are curious about what I have. I too thought the PMR example was not typical -- where is the person who woke up at 3 am one day and could not raise their arms without stabbing daggers? Oh, that was me lol. I commented on one of the comments by another "younger" patient with my story (I was 51 when diagnosed, pulling down that age average). I am in New York and work with the media, so if there are any things in the story that really need correcting, I can contact the reporter. I'm not sure any PMR stuff rises to the level of requesting a correction, but I don't know as much about GCA. Let me know if I can assist. Hang in there, everyone!
It sounds like your taper is going well. I was also that person who woke up one day unable to move! At 48, my doctors refuse to agree that I have PMR, opting instead for RA despite negative RA tests and xrays. Makes me wonder how many others are in the same situation and if that average age would come down significantly if they dropped the “requirement” of being over 50 for a PMR diagnosis.
Lots! If our experiences are anything to go by!!!!!!!
Grrrr! So frustrating! That sounds like PMR to me as well, no matter your age. Hoping you are doing as well as possible.
You know what's interesting, I did wake up at 3 am one day in agony, but looking back, I realized I had noticed little things for 2+ years. After diagnosis, I found an old Google search I had saved for "shoulder bursitis" from several years ago, when my shoulders were hurting if a chose to lie on my side too long. Eventually, that stopped. My knees would ache after sitting in the movie theater or air flight for more years than I can remember. I had a bad incident where we walked/light hiked up a small mountain for about 45 minutes, and I could barely walk on the way down or for the rest of the day due to knee pain. The next day they were fine. I attributed all of this stuff to aging after 40. I think something was going on with inflammation for a number of years prior to the "fateful day." So I would have been about 46-48 when it all started as well! Perhaps go for a second opinion? Are RA meds helping?
My PCP had started me on steroids and although my rheumy wanted to put me on methotrexate, I refused for now. So I am only on prednisone and tapering 2.5mg every 2 weeks. It’s a faster taper than normal but so far it’s ok. If the pain flares I will slow it down more.
"currently doing DSNS to try to get off in a few months"
DSNS won't get you off quicker - the only time you will get off pred is when the underlying autoimmune disorder burns out and goes into remission. DSNS doesn't influence that at all - all it does is make it more comfortable on the way and identify the "right dose" more accurately.
I was also 51 when it started, but it crept up slowly for me. Until one day I DID seize up completely ...
I know, but when I try to reduce too quickly or in too large an incremental dosage, I feel horrible from steroid withdrawal 
I have used a more standard method of tapering to get from 40 to 3 mg per my rheumatologist, but dropping these lower doses was not working well, so I'm trying the DSNS to hopefully wean my body off slowly enough that it does not complain.
I should say, I am hoping I am already in remission and just dealing with steroid side effects and withdrawal at this point. To be able to function at 3 mg a day is awesome. I have had one flare, when I tried to reduce by too much last Nov 2018, but returning to the higher dose kept the shoulder pain in check, and I waited for a over a month to start reducing again. So I am hopeful that my PMR is already in remission now, and I'm trying to get off of the steroids to see how I will really feel as a non-medicated person. I am hopeful!
3mg, even 1mg can be enough to keep it at bay - as many people can testify ...
Yes, I'm so thankful to be down from 40 mg! But I suppose I won't really know if I am in remission until I try to reduce further. I have questions about steroid side effects and will search for other threads on that topic.
What is a long time with pmr.
Long time pmr sufferer
Womans Weekly has an article on PMR & GCA
PMR and night time headaches
This article is not about PMR, but we can relate...
