IL-6 AND PMR

[papadapadoo]

I cannot find this article here and I found it very helpful in understanding our disease. Written for medical professionals, it is still pretty easy to read and it explains the relationship between cytokines and PMR, as well as the rational for the new biologics. The article was quoted in the Mayo Clinic forum, (connect.mayoclinic.org/grou... which I find very helpful.

pmrandil6.com/il-6-and-pmr/

[PMRpro Ambassador]

Good one - thank you!

[Maisie1958]

this is excellent 👍

[LucilleG]

Great article with an easy to understand accompanying video...thanks for sharing!

[cycli]

Thanks for this. Have read it and posted to my Rheumatologist.

[winfong]

I had the same problem. Just click on the 2nd link and you're good to go.

[papadapadoo]

No. I found this info on the Mayo Clinic support site--was trying to give credit for it, not post it there!

[papadapadoo]

Ah, I see. Perhaps the redirect was the problem? Maybe this will get us to the Mayo Support site: tinyurl.com/mayo-pmr.

[agingfeminist]

excellent. Many thanks for posting this.

[agingfeminist]

I found this very inter4esting but of course lots of unanswered questions. Any ideas about why the particular muscles affected by PMR are targeted? And also why does it ever get better/go into remission?

[papadapadoo in reply to agingfeminist]

Well, it's a mystery! The targeted muscles may be different for various people, and no one knows why PMR is "self-limiting." I'm just grateful that someday it will go away.

[PMRpro Ambassador in reply to papadapadoo]

PMR isn't always self-limiting. It has been said for a long time about 5% have it for life. And the vast majority have it far longer than 2 years.

[papadapadoo in reply to PMRpro]

Ouch.

[PMRpro Ambassador in reply to papadapadoo]

I've had it for over 18 years ...

[sidra1968 in reply to agingfeminist]

My theory is it attacked my weaker spots. Old injuries or torn areas..or areas that had surgery. That's where my pains are concentrated anyway

[Bramble2000]

So, if I’ve understood correctly, the Humira I was taking - an anti TNF - for my Ankylosing Spondylitis, was indeed helping my PMR symptoms and bringing down my CRP levels, like I thought it was until my Rheumy stopped it!

[PMRpro Ambassador in reply to Bramble2000]

I think it is possibly more likely that the AS could have been causing the symptoms - I just mentioned someone off one of the forums who was diagnosed with PMR and GCA was suspected. She responded reasonably to high enough pred but her doctors weren't prepared to give enough for good symptom control. She eventually saw Sarah Mackie, this was some years ago, Sarah was relatively easily attainable then! The patient mentioned night time back pain that was too early to be typical PMR - an MRI showed it was AS, the neck changes were causing low blood flow to the head and mimicking GCA symptoms.

PMR isn't generally associated with TNF and the 2015 Recommendations warn again the use of anti-TNF medications as they are associated with adverse effects but with little benefit in PMR. It could be a factor in some PMR though so some patients might get some benefit and you may be one. But whatever the label - it is crazy to stop a medication that is providing benefit to a patient.

[Bramble2000 in reply to PMRpro]

All I know is:

* on recent MRI’s my AS is “quiet”.

* on recent pet/Ct scan, PMR lit up like a Christmas tree.

My symptoms are much more PMR than AS. The reason the Rheumy stopped the Humira was because the AS didn’t appear to be active on that one snapshot in time.

[PMRpro Ambassador in reply to Bramble2000]

Fair enough - what is important is that whatever you are offered works for you. And these days there is no real excuse about identifying which cytokine is doing the damage. The tests may not be available in every hospital but they are available.

Didn't occur to him that the Humira was controlling the AS? See it all the time with pred - the patient has no pain or raised markers so the doctor assumes the PMR is quiescent, not that the pred is doing its job. How much difference did the lack of Humira make to you?

[Bramble2000 in reply to PMRpro]

I only had about 8 weeks of it so hard to tell really but the CRP was starting to come down. I’m seeing him on Monday and don’t really know what to say? I can’t take the steroids, I can’t take Methotrexate but I do well on Humira and Cosentyx. He says my AS is quiet so didn’t want to put me back on Humira but I argued that my pain could be peripheral AS. He agreed but then I had the pet/Ct scan which showed PMR loud and clear. That’s when he took me off the Humira and started the steroids. I think at that point the CRP has started to lower. It’s a complex picture, I know. He does my head in and the wall goes up when I’m in front of him and I sort of give up.

[PMRpro Ambassador in reply to Bramble2000]

He needs to treat the patient in front of him and NOT the textbook. I know the 2015 Recommendations warn against Humira and co - BUT they also say that that is because of potential adverse effects versus lack of benefit. So if YOU do well on Humira, that negates that argument.

[Bramble2000 in reply to PMRpro]

thanks. I’ll see what he says.

[cycli in reply to Bramble2000]

good luck. It's confusing but you seem to understand it better than your medical professional.

[Bramble2000 in reply to cycli]

probably. Been at this game a long time! 😆🙄

[cycli in reply to Bramble2000]

I can see from your profile that you have good cause for self advocation. All that going on doesn't help diagnosis and being young brings out the ill informed opinions.You must have thought many times "when will this ever end" hoping the inflammation is under control and things improve for you

[Bramble2000 in reply to cycli]

thanks

[sidra1968]

Thank you!

[Bcol]

Thank you for posting this, a very interesting read and listen. Still very insistent on the 50+ years though.

[Bramble2000 in reply to Bcol]

the 50+ thing caused years of a delay in diagnosis for me. Mine started at age 48.