Polymylagia rheumatica and temporal arteritis?

vision blue

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A long shot but anyone have either or both of these? (they can occur together). These too are believed to occur after a viral infection and with mysterious etiology and theres no definitive diagnostic test. Theres also tons of fatigue as well as pain and limited mobility (for PR) often in shoulders, neck, hips thighs, but can be other places . For TA theres visual issues, headaches, can be scalp pain, can be face pain (danger of blindness)

Usually effects older people but i think it may be under diagnosed in younger people

Im wondering a tuallky if i have both given symptoms Unfortunately i wont be able to convince anyone because my hs CRP is ALWAYS very low even if i had raging fever and SED rarely elevated. And even tho articles say these can be normal in up to 40 percent of those with the disorders, if these non specific markers are normal they just shrug and wont consider the possibility further
 

Likaloha

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A long shot but anyone have either or both of these? (they can occur together). These too are believed to occur after a viral infection and with mysterious etiology and theres no definitive diagnostic test. Theres also tons of fatigue as well as pain and limited mobility (for PR) often in shoulders, neck, hips thighs, but can be other places . For TA theres visual issues, headaches, can be scalp pain, can be face pain (danger of blindness)

Usually effects older people but i think it may be under diagnosed in younger people

Im wondering a tuallky if i have both given symptoms Unfortunately i wont be able to convince anyone because my hs CRP is ALWAYS very low even if i had raging fever and SED rarely elevated. And even tho articles say these can be normal in up to 40 percent of those with the disorders, if these non specific markers are normal they just shrug and wont consider the possibility further
I have been diagnosed with polymyalgia rheumatica and am concerned about the possible progression to temporal arteritis or giant cell arteritis. I have seen 2 rheumatologist since being diagnosed by my old rheumy/pain doctor. I am taking small amounts of prednisone but docs are scared of the long term effects of prednisone.

there is little to read about PMR in most support groups and online.
 

Violeta

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A friend of mine has been diagnosed with it, but it's strange in that the rheumy she went to did not give her any diagnosis so she went to an Osteopath who looked at the same bloodwork and said she has PR. This started after a virus or flu in the spring of 2021. She didn't test for COVID but she may have had it.

She had done one course of pred, which helped, and didn't want to do another. The Dr prescribed hydroxychloroquine, which she's been taking since last August and not getting any relief. (I know, that makes no sense, the doctor told her it takes up to 6 months to work, then tells her she need a higher dose. )

I have seen studies that show that high dose B5 helps with rheumatoid arthritis, and PR is similar. I would try that, or at least look into it, if I were you.

Low dose hydrocortisone isn't dangerous like prednisone is, although I don't know if that would help. I would try that with high dose vitamin c if I had PR. I would try that just for ME/CFS if I could get a prescription. I told my friend about it but haven't heard back yet if she got a prescription for it.
 

Violeta

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Here's a way to diagnose it.
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC6868401/

Nevermind, I posted it as one of our dogs woke up and needed to go outside and didn't read it. Turns out that "Neutrophil‐to‐lymphocyte ratio, platelet‐to‐lymphocyte ratio, and monocyte‐to‐lymphocyte ratio levels were associated with disease activity and specific clinical features, although they could not predict prognosis in patients with PMR."

But you might find the article helpful in some other way.
 
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vision blue

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@Likaloha @Violeta
Thanks to both of you. Most interesting
Likahola- can you help me figure out if i have this? I know the official symptons but would help if your experience suggests something im not likely to cone across -

Incidentally only 15 percent get giant cell arteritis so hopefully ykure fine. As ive ne tioned im concernef ive had both for a while.

Cant blane you o the steroids

Was your SED higher? What allowed doc to diagnose with confidence?

@Violeta Vgood point about hydrocortisone vs predisone. At first I’ve been thinking what’s the point of getting officially diagnosed since I’m a very poor candidate for prednisone but maybe hydrocortisone would be different if I can negotiate for that

It’s also an interesting point about b-5 because ive had a big flare starting yesterday and happens to be 3 days after q big drop in my B vitqmin intake. Will check if b5 on that list but am guessing yes

Far as i know, hydroxyxhlo...ie plaquenil) doesnt do anything for PR but perhaps they thought she had comcommitant mAI rheumatic disease like lupus?.

No on hashimotos but my mother did. Why- do you suspect a connection?

Justcsaw your link. I havent hit the literature yet except do remember a while back when i started looking about how a lot do not have elwvated esr or crp
My neutrophil to lymphocyte ratio on high side becaue i tend to have too liw lymphocytes
 

Violeta

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I saw some studies that said that taking hydroxychloroquine made further deterioration less likely. It hasn't done a thing for her and I think the doctor that prescribed it shouldn't have. No other diseases involved.

I asked about the hashimoto's because my friend does have that, possible had COVID before the polymyalgia rheumatica symptoms started, and Covid is known to make viruses kick in. EBV is frequently involved with Hashimoto's. I saw one study today in Wiley's online saying that EBV dna in blood of those with rheumatoid arthritis is higher than in healthy controls. They included PR in the study, but I didn't see them break down the various factions of the group in the results. It was a long study though, and I am having pretty bad fatigue issues this week. If you want the link I can get it.
 

Likaloha

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I cannot remember how I was officially diagnosed. I know my chief complaints were terrible pain in shoulders and hips and decreased function. Separate from my fibro pain, myofascial pain, OA pain, etc.
 

vision blue

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Had a televisit with rheum yeaterday. Based on symptoms he wanted to test for it even before i had a chance to bring it up. He particularly seemed swayed when i mentioned the arns felt too heavy to lift . And when i brought up visual oddities snd scalp tenderness

@Likaloha @Violeta Did you or friend by chance have any preceding sinus issue, most especially anything involving mold or fungus or allergy to such?
 

Violeta

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Had a televisit with rheum yeaterday. Based on symptoms he wanted to test for it even before i had a chance to bring it up. He particularly seemed swayed when i mentioned the arns felt too heavy to lift . And when i brought up visual oddities snd scalp tenderness

@Likaloha @Violeta Did you or friend by chance have any preceding sinus issue, most especially anything involving mold or fungus or allergy to such?
The only thing I know about my friend is that she had a virus before it started. She didn't get tested so she doesn't know what the virus was.

Let us know what your doctor finds, and what tests he uses to make a diagnosis.

Have you tried any meds or natural remedies that helped?
 

vision blue

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This rheum happens to be good. he's in his 70s and has the common sense you don't find anymore. I had read that up to 40 percent of folk do not have elevated sed rate. And my sed rate only goes up rarely, evne with inflammation. So I discussed this with him. He sensibly said sure, you can have it with a normal sed rate but the problem is how can we give (risky) high dose prednisone or an invasive biopsy without better evidence? Good point!

yes on natural stuff. Can I PM you?
 

vision blue

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I cannot remember how I was officially diagnosed. I know my chief complaints were terrible pain in shoulders and hips and decreased function. Separate from my fibro pain, myofascial pain, OA pain, etc.
my rheum felt the arms too heavy to stay up was a big deal. good pont that we can tell it's a different pain.
 

Violeta

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This rheum happens to be good. he's in his 70s and has the common sense you don't find anymore. I had read that up to 40 percent of folk do not have elevated sed rate. And my sed rate only goes up rarely, evne with inflammation. So I discussed this with him. He sensibly said sure, you can have it with a normal sed rate but the problem is how can we give (risky) high dose prednisone or an invasive biopsy without better evidence? Good point!

yes on natural stuff. Can I PM you?
Yes, please do.

And my friend did a course of pred, which did help the pain, but as you know, you cannot safely stay on it long term. Her pain returned soon after discontinuing it.
 

vision blue

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@Violeta

Thanks. I will look up the study and that word I’m unfamiliar with. I’m behind on sending you the message I plan to… My biggest concern is that I also have giant cell arteritis which is affecting my vision. I’ve had peculiar visual anomalies for a while now and I have some other signs of giant cell arteritis. I had all of these even before I had the symptoms of PM grade but it’s tricky because I get so many symptoms with my current mix of illnesses That it may not be that and it could just be a coincidence
 

Violeta

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@Violeta

Thanks. I will look up the study and that word I’m unfamiliar with. I’m behind on sending you the message I plan to… My biggest concern is that I also have giant cell arteritis which is affecting my vision. I’ve had peculiar visual anomalies for a while now and I have some other signs of giant cell arteritis. I had all of these even before I had the symptoms of PM grade but it’s tricky because I get so many symptoms with my current mix of illnesses That it may not be that and it could just be a coincidence
So sorry to hear about the vision problem. I hope I put the right link, I had been looking at a few.

I am so tired right now but I will get the study that says that andrographis actually helps.

"This study is the first to demonstrate that the frequency of Treg cells is decreased in patients with GCA and patients with PMR, and that CD161+CD4+ T lymphocytes, differentiated into Th1 cells and Th17 cells, are involved in the pathogenesis of GCA and PMR."

When I clicked on this study I got a message that the connection wasn't private so I'll just put this paragraph that was on google.

Andrographolide ameliorate rheumatoid arthritis by promoting the development of regulatory T cells
M Rifai'i - Journal of Tropical Life Science, 2010 - jtrolis.ub.ac.id
Andrographolide is important material present in Andrographis paniculata. This material can
promote T cell to develop into regulatory T cell, CD4+ CD25+. CD4+ CD25+ regulatory T (T
reg) cells, a component of the innate immune response, which play a key role in the
maintenance of self-tolerance, have become the focus of numerous studies over the last
decade. These cells have the potential to be exploited to treat autoimmune disease. In this
experiment we showed that the induction of regulatory cells in vivo has a healing effect..."
 

Violeta

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I found this in a study about giant cell arteritis.

Acetylsalicylic acid has a role as adjuvant therapy, partially by inhibiting inflammation and partially through anti-platelet effects 7,

Have you tried aspirin, alka seltzer, or white willow bark?

The amazing thing about andrographis is it reduces Th1 and Th17, unlike steroids which only reduce Th17.

"Andrographolide treatment resulted in a decreased percentage of T helper (Th)1 and Th17 cells and an increased proportion of Th2 cells
 

mermaid

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Hi there @vision blue I didn't know about this post when I replied to you via pm re the Polymyalgia Rheumatica. As I said, I have had 2 female friends and one male friend who had PR. Standard treatment is to give steroids and then very slowly reduce them over months though I guess it depends on the person's reactions.

The man who was in his 70s recovered reasonably quickly but the 2 women, who incidentally both have underactive thyroid (likely to be Hashimoto's though I don't know for sure) took a long time (months) to recover. In fact, one of my friends who developed it last summer still has it and is still reducing slowly. Taking steroids is not great for osteoporosis of course, and all 3 of the people are small boned and more likely to have that, though my friend who still has it, is on HRT still so that may help her. They may give out the bone drugs if you are on steroids for a long time, but they are not great either (in my opinion).

None of them had Giant Cell Arteritis to my knowledge though.
 

vision blue

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@Violeta thanks for the info. Alas salicylates give me bad vertigo Have not been able to twke aspirin for years. These days not even tomatoes

PMR is self limiting even without steroids BUT its the giant cell arteritis that woukd be problem

Cobfusing tho because More I think about it,, the more I think I have had episodes with this with these muscles/connective tissue before often triggered by an infection of some sort. Either is doesn’t fit the pattern properly or people have been wrong that it is just a one time thing affecting old people

Btw, Ive read some claims polymylagia rheumatica is not an actually a muscle problem but is more synovial lining but I might be wrong. Or Perhaps not everybody agrees

I have an eye appointment next week. It’s only with a retinal guy and not a Nuro ophthalmologist and I still don’t know if I’m going to keep it. I remain unvaccinated and it’s a big risk not to mention the exhaustion factor and getting myself there and having to deal with the aftermath of dilating with a considerable an argument with them to only dilate one eye and to Dilute the dilation And wash it out right awayI just can’t deal with that anymore

Will read rest pf posts when getca bit more stamina

Thanks everyonr