I read that article and found it discouraging. It's clear that much is still not well understood. It was quite technical, and I need to check on some definitions before I review it again.
The two things I took away from it is that now it is believed that PMR pts. have , subclinical GCA, and or will go on to to develop GCA and vice versa. He reminds us that emphasis on GCA has centered on the cranial symptoms; headaches and visual disturbances. It is more than that.
The writers remind us that GCA is large vessel inflammation which can be going on in the vessels in the chest, abdomen and GROIN,etc, not just the head. I know there was someone wondering about severe groin pain. Seems like a symptom of GCA (with PMR.)
The researchers thought that PMR and GCA symptoms overlap. There is a nice diagram showing the overlapping of GCA and PMR. It is as if PMR and GCA cannot be entirely separated.
The other point I noted was that he recommends Methotrexate only when a pt. has had a second relapse , and says nothing about using it as a steroid sparing treatment strategy. Azanthopine and other DMARDS were not even mentioned.
He also discussed Tocilimubab and one other "gevismubab" ? as still being under trials. I believe Tocilimubab is already in use.
That was 2 years ago so pretty recent. I thought to myself, Oh, great, there is still time for GCA to materialize in those of us who think of ourselves as PMR patients and vice versa.
They also advocate for a revision in EULAR diagnostic standards to aid in diagnostics. There is also a discussion about using ultrasound, MRI and PET scan as measures of inflammation. Neither rheumatologist I saw recommended US or PET scan, and a chest MRI was recommended, but never followed up by dr's office. And it takes forever to get approval for contrast to be used.
I also missed my chance for acute reagent testing (which must be done before taking Pred 2 weeks . ) The PA and family doctor holding down the rheumatogist's office simply forgot at my 2 week follow up to tell me or give me lab paperwork to have the acute reactant blood work, then tried to blame me for not getting it done at my 3rd visit.
I challenged him ,not too nicely , and I saw beads of sweat appear on his face. Too late now. I changed rheumatologists.
But the writers did say there is debate ongoing. I asked the neuroophthalmologist who evaluated me for temporary vision loss at a prestigious eye hospital in Philadelphia and made the comment that I had read that ophthalmologists were using infusions of Tocilimubab for GCA. His response was" it all depends on who you talk to." So there is clear uncertainty still within the research and medical community.
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It would be preferable if you could avoid posting denouncing a report if you cant provide the report for pepple to do their own reading. This leads to stress for our members which isnt acceptable. I for one have severe groin pain an NO it isnt GCA, its arthritis in my hip. Please consider our members before posting.
I sent you a message, but the article you inquired about is from British Society for Rheumatology, Oxford Academic, Rheumatology, Volume 56, Issue 4, April 2017, 506-515 by DeJaco, Duftner, Buttergoreit, Matterson & Dasgupta
I think it is a big jump in current thinking to make patients worry that groin pain could be a sign of the onset of GCA in PMR patients when it initially occurs.
The research piece is one of these articles which is looking into Professionals investigating into getting greater understanding of GCA identifying in less common vessels in the body like the groin rather than stating that all groin pain in PMR or GCA patients should be considered a flare or deterioration in a patient's disease.
It is marking that this should be considered as an option after other more common causes of the pain are ruled out, of which there are many.
Pred side effects , inactivity , arthritis , osteoporosis , cardiac , Neuralgic and circulatory issues, costochondritis , vitamin and mineral absorption , and other injury have to be ruled out by Practitioners before mentioning GCA , and Patients should be encouraged not to become anxious at the initial presentation of pains in the chest and groin if they have only been diagnosed with PMR at that time until the appropriate investigations have been done to rule out these more common causes.
Unlike with the onset of more common GCA indicators which need testing swiftly like Constant Pressure Headaches , Vision issues and Eye Pain, Scalp tenderness and Jaw Pain , Breathlessness and trouble in eating and swallowing , Spontaneous changes in Cognitive behaviour and regular dizziness.
The drug questions are ones that are ongoing as drugs like Tocilizumab are being used but it is dependent on the patient , and their response to current treatment , or their other illnesses that prevent continued use of steroid therapy.
It is also impacted by funding and the up to date knowledge of the Specialists in charge of care .
Getting to use biologics is not a given , even for those patients who do not respond well to steroids or cannot take them because of other illnesses ( like myself) until many hoops have been jumped through , and won't become common in normal mild or moderate sufferers of PMR because it is cost prohibitive and often not as reliable in dealing with inflammation as steroid use.
Although the use of MTX and other steroid sparers are being used in line with trials of the efficacy in reducing the time on steroids for patients , it is based on various trials that a not specific to GCA/ PMR research but have been available for Doctors to read and consider in front line medicine for a few years , and again, has more to do with the thinking of the Doctors you are under and the funding available .
Therefore , again , the paper is making recommendations for the future rather than a definite ' for' or ' against' as trialing many drugs and the best time to use them in GCA/ PMR is still ongoing .
A diagram showing how GCA and PMR can overlap is a good instrument to make it visually easier for Doctors or Researchers to understand how these two diseases can be linked and can follow certain pathways similar to one another only . The diagram is there to add Disease information rather than to be read as though the possibility of developing GCA after PMR , or PMR after GCA is a " given".
Thinking still suggests that although this can happen , it does not , and will not happen to all , and in terms of GCA , does not happen to most sufferers of PMR.
It's a paper that is asking helpful questions to improve diagnosis and the options for patients rather than a new set of rules set in stone for more efficient future treatment of these diseases together , or separately , and needs to be read in relation to the other wealth of material that these Professionals are already working with not as a stand alone article.
It is good to be aware of , but not become more anxious about, as a current PMR patient.
As we know stress can be the worst trigger for us all , so for some of us , especially new forum members , or patients whom suffer with additional stress related or mental health issues , it is usually better to wait to read articles until they have been more widely read and recommended as being user friendly , positive, and helpful for Patients in general.
I read the paper and, personally think this is more information in ongoing studies of PMR and GCA and some RA. It seems more of a 'refining' the diagnostics for doctors using up to date data which, by the way, is not definitive yet and says so. Just my thoughts. Glad to see they are still working on it.
Your post caught my attention as I dipped into the forum because I have commented to my rheumatologist about groin pain, chest pain and jaw issues with no mention of GCA.
Whether it is or isn't GCA I now feel less anxious continuing on 8mg daily, where I have been stuck for 18 months with occasional raises but no successful taper. My sight is deteriorating due to cataract but at that dose I can function almost normally on a daily basis, fatigue and some pain notwithstanding.
So thank you for posting and referring me to the article.
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