u/ilovehovercraft

Hello! I'm reaching out here on behalf of my husband who has had a wild ride of the past 11 months while trying to get diagnosed. Has anyone out there really struggled with getting their type of Arthritis properly diagnosed? After months of turmoil, it seems like my husband's newest diagnosis is Palmar Fasciitis and Polyarthritis Syndrome (PFPAS) which is incredibly rare, scary, and he is not in the typical demographic for it - he is a 40M - typical patient is an 80F with ovarian cancer. It is classified as a paraneoplastic syndrome, meaning it either occurs from the body's reaction to an active cancer, or precludes a future cancer that could be found in the coming years. There are rare instances of idiopathic autoimmune cases but they are few. Before this, he was thought to have sero-negative RA. We then considered Eosinophilic Fasciitis (EF) due to an idea his rheum had and a "groove sign" symptom, which led us to the path of PFPAS. He has extensive tennosynovitis, synnovitis, fascia thickening, loss of full hand mobility, and everything is in pain all the time. Prednisone, even high doses do nothing. Humira has done nothing, he is now trying MTX and Enbril together but it seems with PFPAS nothing works usually. He has has an extensive work up at the point with more to come still. Only abnormal results in bloodwork are persistently high eosinophils, low b12, and positive IgG and IgM results for Parvovirus B19 (negative PCR though), though he was never sick the past year. If anyone has EF or PFPAS I would love to hear from you, either below or in a PM. Thanks for your time!

Hello everyone! I'm writing this on behalf of my husband who takes Quilipta. This is a bit of a shot in the dark, but we don't want to leave any stone unturned in the case there is anyone else out there that may have had a similar experience while on this medication. I have read through many of the posts on here and comments in relation to all the side effects of this medication (I'm sorry, they sound awful!) and I'm wondering if anyone has had anything that has made them develop Rheumatoid Arthritis(RA), any kind of Fasciitis, Eosinophilic Fasciitis, or Palmar Fasciitis and Polyarthritis Syndrome. I know there are papers that account for the fact that a connection has been established with a rare incidence of RA, and I'm wondering if there is anyone out there who has experienced this. Sorry, this is long!

My husband has suffered from migraines the entire time I have known him. As of a few years ago in the fall of 2024, it was getting so bad and he tried seeing a new neurologist to see if they could prescribe anything. The doctor he saw was very helpful and gave him 60mg of Quilipta. Within a week or two it seemed like a miracle drug. It was like an instant cure for him and he was so happy. He never experienced any of the side effects I see people mention on here (like extreme nausea, aversion to food, heightened anxiety, tachycardia, etc). Fast forward to September of 2025, he started having joint pain and stiffness in his hands and lower arms. For a few weeks he attributed it to gardening and maybe straining them from doing push ups. A month after it started it was still happening, which we thought was odd, but not unheard of for maybe pulling muscles. At the same time while this was happening, he seemed to be dealing with a GI issue that would not go away that we thought at the time maybe was triggered by a meal he ate. That seemed to take the front and center stage for a while, and he was tested for different things which all came back negative. The symptoms he experienced were sharp gas pains and cramps along with a very gurgly stomach. (This still has not gone away 10 months later btw). This stomach thing could all be a red herring and not related, but I wanted to mention it anyways due to the high incidence I'm seeing in this forum of GI issues.

The real issue that took center stage in January of this year was the extreme increase in joint pain and stiffness throughout his whole body. At first it was just his hands and arms, and slowly it has been going everywhere and causing tendon restriction and loss of full mobility. In March we started going to a Rheumatologist, and since then it has been a wild ride of figuring out what is going on with him. For the past few months his diagnosis has been sero-negative rheumatoid arthritis, all while bordering on hyper eosinophilia with below normal B12 count (crazy for a meat eater!) - other than that his labs are remarkably normal. He has extensive tennosynovitis and synnovitis in his forearms and hands, and he knows it's in his toes, legs, and neck. He is in pain and aching all the time and is miserable. No medication works or helps. He's tried different biologics used for RA and prednisone does absolutely nothing, even high doses. He is currently on Methrotrexate and just started Enbril. Since he is a scientist he has looked into all of the different aspects of this extensively and read so many papers trying to figure out what in the world is happening to him. We've even been to an infectious disease doctors who was great. We have a potential lead from that which may be as possible as any side effect from Quilipta, but I don't want to make this post longer than it needs to be.

This past week we saw another Rheumatologist who is a colleague of the one we had been seeing. This is because when my husband was describing new arm restrictions he was experiencing, she thought of a condition called Eosinophilic Fasciitis (EF), which is very very rare and she thought unlikely as it wouldn't be a perfect match. Long story short, my husband read some papers and discovered he was experiencing a weird symptom of said condition called the "groove sign" - look it up - it's pretty weird! He went into the doctors and got looked over again and they agreed, he had this "groove sign" though he didn't have other hallmarks of said condition, and they instead told him he has something called Palmar Fasciitis and Polyarthritis Syndrome (PFPAS) - even rarer than EF! And even more depressing the more we read about it due to the affiliation with cancer, so now in top of him suffering from what seems to be a continued tightening of the fascia all over the body, pain, and loss of hand mobility, we also have to get all these cancer screenings done now, and be on the look out for the foreseeable future all the time for cancer! It's been quite the year, and we are only 40. Most people who get this condition seem to be 80 yr old women with ovarian cancer - so my husband is quite the outlier, so we can't help but question - what is really going on and what is the mechanism behind it?

And this brings us back to Quilipta - which he has continued to take all this time. He considered the possibility of going off of it about a month and half ago wondering - is it causing all of this? So he did a short 2 week trial going off. The headaches came back almost instantly and made him completely miserable on top of the pain he already is experiencing. Since it didn't change any of his symptoms he decided to start taking it again, but a lower dose and has been on 30mg since. But that leads us to wonder how long it would take to get out of his system entirely. I've noticed so many of you who had trouble with it saying it felt like it took months for the side effects to wear off. We had written off the idea that Quilipta could be related, but are questioning it again now because of a paper my husband and dad have been combing through about PFPAS. In case reports where PFPAS was not triggered by an underlying cancer (87% seem to be) 7 cases were adverse reactions to tuberculosis medications. My father is a chemist / toxicologist and noticed a chemical compound in the center of the Quilipta chemical structure that is incredibly similar to one that is in this tuberculosis medication. We can't help but wonder about this, and if this could be the source of an adverse reaction.

I know this was long, thank you for reading. If you have experienced anything in the least bit similar, I would love to hear from you, either below, or in a PM. Thank you!!