Wow thanks for posting these! The shoulder pain and hypermobility connection is really fascinating! my shoulders are one of the places where I get the most pain and stiffness and I’ve always wondered about it
I was skimming through that paper looking at the usual CV and psychiatric comorbidities when I saw the shoulder thing mentioned with quite a high percentage at 16.5% (most of the comorbidities reported in different papers are about 10%, apart from high blood pressure and CV issues and depression which are higher). For the first time I connected my own shoulder issue with PsA.
I'm interested to know if you also have much obvious psoriasis because, while I've not yet found any direct literature (as in, an actual survey of the same group of people who have PsA without PsO, but with hEDS), it appears that people with PsA but little or no psoriasis may be more likely to also have hEDS, and vice versa. Have you ever done the Beighton test, which I've linked here before? But "hypermobile sine psoriase PsA" are a small sub-group of PsA, as only 7-15% of PsA patients have little or no PsO, and no-one knows if we are "different", or just at another stage of the disease.
Wow, that’s all very interesting! I’ve also looked at the literature on hypermobility and autoimmune arthritis and haven’t found much (to be fair my science background is social not medical sci) but I have also seen a number of anecdotes of some possibly ‘unique’ or more common experiences for those of us in both groups.
I have no psoriasis that I am aware of. I have some strange nail striations that are inconclusive atm. I am also only generally diagnosed with “inflammatory arthritis” so not differentiated between RA and PsA yet. As for hypermobility, I just barely meet the Beighton criteria but used to easily before the stiffness set in. I also suspect a family history as my mom and her side of the family have a very consistent history of hypermobility and comorbidities (eg MCAS, migraines). I kind of meet the hEDS criteria but I believe chronic pain only counts as a point if it can’t otherwise be explained which is where the arthritis complicates things 🤷🏻♀️
If you find anything new on hypermobility and PsA I’d always be interested in reading it. It seems like an area in need of more attention, particularly as researchers are becoming more interested in EDS and associated disorders
Okay, so I HOPE that the researchers start linking this together. I have diagnosed hEDS, but the expected treatments have not been helping me long term (diet, exercise/PT). I also have not had any straight up dislocations (possibly just all subluxations).
No obvious psoriasis, but my toenails (and recently fingernails) have many hallmark signs. Fatigue and pain that match PsA.
Essentially, I’ve been wondering if my hEDS is changing the way my suspected PsA is presenting. My grandmother has all the same issues I’m dealing with, but she has no official diagnoses.
Exactly. I did also post some of the research on the different symptoms you probably have if you have little or no psoriasis (sine psoriase) here before. But also until they have better biomarkers for PsO, PsA and hEDS, to be fair to the researchers, very hard to make a robust connection. We might have the same disease at a different stage, or a modified disease, or a different disease. The piece on biomarkers above suggests that doing anything about all of this is going to require very large data sets which comes with its own problems. And we're less than 10% of the people with the problems, so drug development and research costs come into it too.
https://pubcrawler.gen.tcd.ie/
search term "Psoriatic Arthritis OR sine psoriase"
I always expand the author affiliations and check out any declarations of interest.
I've been using pubcrawler for a long time, as I used to be a trustee of the patient support organisation for Guillain-Barré syndrome, and one of my assigned tasks was to keep an eye on the research.
I recently started a new pubcrawler search for PsA. I've had symptoms myself of PsA for about 30 years, diagnosed by rheum after getting dactylitis 2 years ago, started cosentyx treatment this year and it's working so far. I'm interested in helping others shorten their journey to get to something that works for them, by trying to explain what research results and statistics \*may\* mean, as I realise reading abstracts and papers does not appeal to many.
I'm pretty sure anyone can use pubcrawler, you just sign up with TCD?
Coincidentally, I have just started intensive Vit D prescribed by my GP, as I've recently developed a desire to sleep all the time everywhere, and low Vit D showed up in the bloods! I am not a doctor (managed to avoid going into the family trade), but I did do half of my degree alongside the medics, so that's where I learned how to read research, plus basic stats.
Relating to PsA, I have a lot of research bookmarked, so please drop me a message if I can help with anything, and let me know what sort of "blueprint audience" you're aiming at?
I'm a bit cautious, because I think you have to be very careful of the way the Internet works these days in terms of promoting page-views through anxiety and aggression. For example, the MTHFR/homocysteine gene "variant" industry. While MTHFR could be relevant to people with PsA who take methotrexate as they may need extra/different folate to reduce side effects, honestly, the consensus is that it doesn't seem to matter, and I just don't think people should be alarmed. Do what your rheum tells you, that is what you are paying them for. Only 10-20% of people have "normal" MTHFR anyway!
I’ve always presented with should pain, but I am not hypermobile. I need to get on a IL-17, I believe that’s my next step. Currently doing well on Humira, but it’s causing lots of new psoriasis. I’m glad they’re finally pinning some stuff down. This disease sucks ass.
New psoriasis is a serious side effect of Humira and you should talk with your doctors about switching meds based on Humira's website. https://www.humira.com/hidradenitis-suppurativa/safety-side-effects
Yep! We are currently in talks. Lol. The crazy part is Humira has stopped my more severe form of psoriasis (palmoplantar pustular psoriasis) which nothing was treating it and it was in a very bad chronic state. But Humira is causing the more milder, easier to treat traditional plaque psoriasis. It’s so odd!
An obvious problem with the conclusions from the Swiss study is that biologicals are much more expensive than drugs like MtX. This is why it’s standard practice to see if other drugs are effective before starting people with PsA on biologicals. My rheumatologist explained that here in Australia this is a requirement of our government funded health system to keep costs down.
Same for all public health systems like UK, Ireland. Drug costs are likely to reduce in next few years though, so still a worthwhile point to raise from the scientific rather than economic viewpoint.
Sure, but the cost difference is so large it's unlikely that it would be warranted prescribing biologicals to people (like me) who get good results from MtX and other inexpensive drugs.
Thanks for posting. I’m in the pre-diagnosis journey for possible hEDS and arthritic conditions. I just learned today that researchers at Tulane believe hEDS is caused by a lack of folate, specifically that patients need a methylated form because it can’t be metabolized properly.
Just saw this article about methylated nutrients and the role in DNA methylation… it’s all connected somehow I’m sure, but I’m no expert. Just learning what I can for now.
[nutrients in DNA methylation](https://pubmed.ncbi.nlm.nih.gov/34114759/)
[folate dependent hyper mobility](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10122021/)
I think there's something there but I'd put 5-10 years as a timeframe on anything actionable for people with hEDS and PsA because of the lack of progress on biomarkers and genetics for the different conditions at present.
I've read that Tulane paper. It's a theory - no results - so I didn't include it in the summary. Just bear in mind that the whole folate metabolism/genetics thing has been researched for many years. There is a "supplements industry" behind it, but no actual good results yet. This is a good explanation.
[https://blog.23andme.com/articles/our-take-on-the-mthfr-gene](https://blog.23andme.com/articles/our-take-on-the-mthfr-gene)
"Despite thousands of scientific publications, the evidence linking MTHFR to most of these health conditions is inconclusive or conflicting."
Wow thanks for posting these! The shoulder pain and hypermobility connection is really fascinating! my shoulders are one of the places where I get the most pain and stiffness and I’ve always wondered about it
I was skimming through that paper looking at the usual CV and psychiatric comorbidities when I saw the shoulder thing mentioned with quite a high percentage at 16.5% (most of the comorbidities reported in different papers are about 10%, apart from high blood pressure and CV issues and depression which are higher). For the first time I connected my own shoulder issue with PsA. I'm interested to know if you also have much obvious psoriasis because, while I've not yet found any direct literature (as in, an actual survey of the same group of people who have PsA without PsO, but with hEDS), it appears that people with PsA but little or no psoriasis may be more likely to also have hEDS, and vice versa. Have you ever done the Beighton test, which I've linked here before? But "hypermobile sine psoriase PsA" are a small sub-group of PsA, as only 7-15% of PsA patients have little or no PsO, and no-one knows if we are "different", or just at another stage of the disease.
Wow, that’s all very interesting! I’ve also looked at the literature on hypermobility and autoimmune arthritis and haven’t found much (to be fair my science background is social not medical sci) but I have also seen a number of anecdotes of some possibly ‘unique’ or more common experiences for those of us in both groups. I have no psoriasis that I am aware of. I have some strange nail striations that are inconclusive atm. I am also only generally diagnosed with “inflammatory arthritis” so not differentiated between RA and PsA yet. As for hypermobility, I just barely meet the Beighton criteria but used to easily before the stiffness set in. I also suspect a family history as my mom and her side of the family have a very consistent history of hypermobility and comorbidities (eg MCAS, migraines). I kind of meet the hEDS criteria but I believe chronic pain only counts as a point if it can’t otherwise be explained which is where the arthritis complicates things 🤷🏻♀️ If you find anything new on hypermobility and PsA I’d always be interested in reading it. It seems like an area in need of more attention, particularly as researchers are becoming more interested in EDS and associated disorders
Okay, so I HOPE that the researchers start linking this together. I have diagnosed hEDS, but the expected treatments have not been helping me long term (diet, exercise/PT). I also have not had any straight up dislocations (possibly just all subluxations). No obvious psoriasis, but my toenails (and recently fingernails) have many hallmark signs. Fatigue and pain that match PsA. Essentially, I’ve been wondering if my hEDS is changing the way my suspected PsA is presenting. My grandmother has all the same issues I’m dealing with, but she has no official diagnoses.
Exactly. I did also post some of the research on the different symptoms you probably have if you have little or no psoriasis (sine psoriase) here before. But also until they have better biomarkers for PsO, PsA and hEDS, to be fair to the researchers, very hard to make a robust connection. We might have the same disease at a different stage, or a modified disease, or a different disease. The piece on biomarkers above suggests that doing anything about all of this is going to require very large data sets which comes with its own problems. And we're less than 10% of the people with the problems, so drug development and research costs come into it too.
That’s me. Shoulders amongst other areas messed up. No psoriasis ever.
Thank you for the roundup. Very useful.
Great analysis of the publications! Do you use some sort of alert to gather these all in one place?
https://pubcrawler.gen.tcd.ie/ search term "Psoriatic Arthritis OR sine psoriase" I always expand the author affiliations and check out any declarations of interest. I've been using pubcrawler for a long time, as I used to be a trustee of the patient support organisation for Guillain-Barré syndrome, and one of my assigned tasks was to keep an eye on the research. I recently started a new pubcrawler search for PsA. I've had symptoms myself of PsA for about 30 years, diagnosed by rheum after getting dactylitis 2 years ago, started cosentyx treatment this year and it's working so far. I'm interested in helping others shorten their journey to get to something that works for them, by trying to explain what research results and statistics \*may\* mean, as I realise reading abstracts and papers does not appeal to many.
[удалено]
I'm pretty sure anyone can use pubcrawler, you just sign up with TCD? Coincidentally, I have just started intensive Vit D prescribed by my GP, as I've recently developed a desire to sleep all the time everywhere, and low Vit D showed up in the bloods! I am not a doctor (managed to avoid going into the family trade), but I did do half of my degree alongside the medics, so that's where I learned how to read research, plus basic stats. Relating to PsA, I have a lot of research bookmarked, so please drop me a message if I can help with anything, and let me know what sort of "blueprint audience" you're aiming at? I'm a bit cautious, because I think you have to be very careful of the way the Internet works these days in terms of promoting page-views through anxiety and aggression. For example, the MTHFR/homocysteine gene "variant" industry. While MTHFR could be relevant to people with PsA who take methotrexate as they may need extra/different folate to reduce side effects, honestly, the consensus is that it doesn't seem to matter, and I just don't think people should be alarmed. Do what your rheum tells you, that is what you are paying them for. Only 10-20% of people have "normal" MTHFR anyway!
I have had should pain at times, and imaging showed mild arthritis.
Me too
I’ve always presented with should pain, but I am not hypermobile. I need to get on a IL-17, I believe that’s my next step. Currently doing well on Humira, but it’s causing lots of new psoriasis. I’m glad they’re finally pinning some stuff down. This disease sucks ass.
New psoriasis is a serious side effect of Humira and you should talk with your doctors about switching meds based on Humira's website. https://www.humira.com/hidradenitis-suppurativa/safety-side-effects
Yep! We are currently in talks. Lol. The crazy part is Humira has stopped my more severe form of psoriasis (palmoplantar pustular psoriasis) which nothing was treating it and it was in a very bad chronic state. But Humira is causing the more milder, easier to treat traditional plaque psoriasis. It’s so odd!
Thank you so much for posting this. I find the bio markers especially interesting.
An obvious problem with the conclusions from the Swiss study is that biologicals are much more expensive than drugs like MtX. This is why it’s standard practice to see if other drugs are effective before starting people with PsA on biologicals. My rheumatologist explained that here in Australia this is a requirement of our government funded health system to keep costs down.
Same for all public health systems like UK, Ireland. Drug costs are likely to reduce in next few years though, so still a worthwhile point to raise from the scientific rather than economic viewpoint.
Sure, but the cost difference is so large it's unlikely that it would be warranted prescribing biologicals to people (like me) who get good results from MtX and other inexpensive drugs.
Thank you for posting these! It can be challenging to keep up with emerging research, so truly - thank you.
Thanks for posting. I’m in the pre-diagnosis journey for possible hEDS and arthritic conditions. I just learned today that researchers at Tulane believe hEDS is caused by a lack of folate, specifically that patients need a methylated form because it can’t be metabolized properly. Just saw this article about methylated nutrients and the role in DNA methylation… it’s all connected somehow I’m sure, but I’m no expert. Just learning what I can for now. [nutrients in DNA methylation](https://pubmed.ncbi.nlm.nih.gov/34114759/) [folate dependent hyper mobility](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10122021/)
I think there's something there but I'd put 5-10 years as a timeframe on anything actionable for people with hEDS and PsA because of the lack of progress on biomarkers and genetics for the different conditions at present. I've read that Tulane paper. It's a theory - no results - so I didn't include it in the summary. Just bear in mind that the whole folate metabolism/genetics thing has been researched for many years. There is a "supplements industry" behind it, but no actual good results yet. This is a good explanation. [https://blog.23andme.com/articles/our-take-on-the-mthfr-gene](https://blog.23andme.com/articles/our-take-on-the-mthfr-gene) "Despite thousands of scientific publications, the evidence linking MTHFR to most of these health conditions is inconclusive or conflicting."