Hello everyone. I’m new here, so I thought I’d just introduce myself…
I started to get really ill about 4 years ago, but remained entirely undiagnosed and untreated for a couple of years. The first rheumy I saw in 2013 diagnosed hypermobility syndrome, the next systemic osteoarthritis and possible fibromyalgia. I had a hip replacement in 2014, and turned down foot surgery when the surgeon told me there was only a 50:50 chance of success. My hands started to deform and I grew little lumps on (what I soon realised were) my tendons; my tendons and attachment points got more and more sore, and I became less convinced that OA, HMS or FM were the explanation. My fingers and toes FELT swollen, but didn’t look very swollen, and mild skin and nail changes were dismissed as ‘probably not psoriasis’. But I developed IBS and then last summer had a couple of episodes of acute eye inflammation, and my GP sent me back to rheumatology… I was finally diagnosed with ‘inflammatory arthritis’ in November 2015, with the rheumy not committing himself to what type (largely because he wasn’t listening to me, but that’s another story!) I was put onto Hydroxychloroquine, which - ironically - caused a skin reaction, and finally just yesterday, the rheumatologist looked at a photo I had taken of my inflamed belly-button a month ago and said “That’s psoriasis, no doubt about it. With a rash like that, it’s 99% certain you have PsA”… So here I am, still processing it all… I’m currently feeling unexpectedly sad and angry - I thought I’d got through those emotions when I got my IA diagnosis in Nov, but apparently not…
I am so sorry it took so long for a diagnosis. You have been through a lot. There is a lot of good information on this site along with a lot of great support. Take time to look through the newbie's guide. It helped me a great deal when I was first diagnosed a few years ago. I have even recently looked back through since my rheumy wants me to go on Enbrel. (Just waiting for the PA from the insurance company to come through to start.) I wish you the best.
Thank you, Goofy Pirate 
Hey Flow. Whoa. What a ride. You're justified in having as many feelings as you want! We can all relate to the shock, disbelief, incredulity you are probably experiencing. Use that anger and frustration to spur you into action. Learn as much as you can about PsA and where to get treatment and help. Comb through the site and join UK support group who might be able to help with specific UK-related treatment questions. We're here to help. Use us!
Hi flow, I'm in the UK (as is mod Sybil) and have had to get to grips with the NHS/NICE treatment protocols way more than I would ever have wished so feel free to ask away for any help you need on this or anything else. Kindest, Jules
Thank you Jane! It’s amazing how good it feels to be told I’m allowed to be angry and frustrated! I’m getting my head round everything, and yes, I’ll look for the UK support group.
Thank you Jules. I’m grateful for your offer… I was just looking for the NICE protocols myself, funnily enough! Good to know there are people here I can go to if I have questions.
Yes, definitely feel free to ask about them. It goes without saying that the hospital trusts are often (usually) costs driven and may try to apply the guidelines in their own restrictive ways. Had this happen to me so I had to go into battle (and won) so have quite a bit of knowledge and experience. Also I had my care transferred out of my local trust area to a centre of PsA excellence so I know a bit about that too. Anytime you need, just ask.
Hi flow, I have just been re-visiting the NICE protocols in Cuppa House (the UK support group) which you are very welcome to join. There is a key bit of info. under 'Information for the Public':
"Who can have etanercept, infliximab and adalimumab?
You should be able to have etanercept, infliximab and adalimumab if you have three tender and three swollen joints and you have already tried at least two disease-modifying antirheumatic drugs (DMARDs), given on their own or together, but they haven’t worked."
I think that is remarkably clearly expressed for a government body! The biologic drugs mentioned are also known as Enbrel, Remicade and Humira.
You have been through so much, you are bound to feel angry and distressed. Really glad you've posted.
Thank you Jules, thank you Sybil. I appreciate your offers, info and kindness.
By the way, I can’t work out how to respond to someone’s individual comment - can anyone tell me please?
Select the "reply" tab under the comment that you want to reply to. That should work. Make sure to set your preferences to "full site"if you're using a mobile device. The mobile site restricts some features.
Hi Flow, and welcome to lwpsa. Sorry you've been through such an ordeal with getting diagnosed! :-(
The fingers and toes feeling swollen I can relate--mine felt weird, too, I described it as feeling as if they were being crushed. You may not think your fingers/hands are swollen, but after you start treatment with a biologic you might realize that, in fact, they were. I'm pretty sure my entire body was swollen because since I've been on Enbrel and my pain has diminished, my hands and feet are much bonier and my skin all over has developed a wrinkly, crepe paper look (unfortunately, because it makes me look much older). I think it looks like that now because it was all-over slightly swollen and inflamed--I always felt that the PsA was in my muscles and all my tissues because I had widespread soreness.
I hope you are able to get quick attention to your PsA now that it is officially diagnosed as that. Good luck!
Thanks. Just trying that now… I am using mobile devices, so that maybe explains it.
GrumpyCat said:
Select the “reply” tab under the comment that you want to reply to. That should work. Make sure to set your preferences to "full site"if you’re using a mobile device. The mobile site restricts some features.
Oh, I see it still adds comments to the bottom of the thread, not directly below what you’re replying to… Does it notify you I’m replying, GrumpyCat? (Sorry to be a nuisance! Hopefully asking now will save me being a bigger nuisance for longer cos I don’t know how to do it right!)
flow said:
Thanks. Just trying that now… I am using mobile devices, so that maybe explains it.
GrumpyCat said:Select the “reply” tab under the comment that you want to reply to. That should work. Make sure to set your preferences to "full site"if you’re using a mobile device. The mobile site restricts some features.
Yes! That’s EXACTLY how it feels to me too, Grandma J! I have been telling doctors that my hands, feet and knees were swollen for 4-5 years now, but they don’t LOOK swollen to others, so they’ve ignored me or dismissed me as neurotic. I have now had a couple of depo steroid injections, and have been on DMARDs for almost 4 months, and my fingers, wrists, toes, ankles and knees are noticeably slimmer - but noone other than me is looking… :-/
Grandma J said:
Hi Flow, and welcome to lwpsa. Sorry you’ve been through such an ordeal with getting diagnosed!
The fingers and toes feeling swollen I can relate–mine felt weird, too, I described it as feeling as if they were being crushed. You may not think your fingers/hands are swollen, but after you start treatment with a biologic you might realize that, in fact, they were. I’m pretty sure my entire body was swollen because since I’ve been on Enbrel and my pain has diminished, my hands and feet are much bonier and my skin all over has developed a wrinkly, crepe paper look (unfortunately, because it makes me look much older). I think it looks like that now because it was all-over slightly swollen and inflamed–I always felt that the PsA was in my muscles and all my tissues because I had widespread soreness.
I hope you are able to get quick attention to your PsA now that it is officially diagnosed as that. Good luck!
I get an email that you’re replying to the past, but it depends on how each person has their notifications set up.
Thanks Grumpy Cat... I have just seen I have dozens of email notifications too! :D
GrumpyCat said:
I get an email that you're replying to the past, but it depends on how each person has their notifications set up.
Flow, mobile devices don’t play all that well with Ben’s Friends. We are working on a new platform, which will be much more user-friendly with phones and tablets.
Please feel free to be angry and vent. We’re a very understanding group, and a safe place to let it all loose. You have been through so much, and now to be told that you have this after being blown off and misdiagnosed … well, many of us here know the feeling.
Like janeatiu says, try to channel your very justified anger into action that will get you the best care that you can possibly get. Where you live, there is some world class expertise. Do whatever it takes to get there, and whatever you must to get the most aggressive treatment that you can.
One of my ways of channeling my anger (and I still have more than enough to go around) is by being here and supporting others as a mentor, coach and advocate. By golly, none of Seenie’s friends are going to get burned by this disease if she has anything to do with it!
We’re so glad that you’re here. Hope you are too.
Thank you Seenie. Much appreciated. 
One of the things that makes me so angry, and really scared too, is the thought that I’m already burned by this disease. I’ve been reading up about psoriasis, and it seems likely from what I’ve read that I have had occasional episodes of what is called ‘inverse psoriasis’ for 30 years. The first episode was in my groin, and originally diagnosed as herpes, but lab tests later ruled that out and I never got a diagnosis. So I saw GU doctors not a dermatologist, and when I subsequently had similar sores in my (what’s the official name for bum crack?!) too, and in the fold under my breasts, I didn’t even think to connect them. But they were generally similar to that belly button rash… So, 30 years of undiagnosed psoriasis, and joint pain for about a decade, and the first bit of joint damage picked up in my knee 8 years ago, when I was 42… And it has been downhill since then, with me definitely ill with symptoms entirely consistent with PsA, and seeing doctors to try to get help, since autumn 2011…
And as well as that artificial hip, I already have deformed hands and feet, and knees that will need replacing sometime, and damage in my lower spine at least…
I absolutely agree about the importance of channeling anger. I have been doing that, including in the ways you describe, helping people on other forums, since after my hip replacement in 2014. This is another level of anger though, and I'm grateful to have you lot here who understand it...
Seenie said:
Flow, mobile devices don't play all that well with Ben's Friends. We are working on a new platform, which will be much more user-friendly with phones and tablets.
Please feel free to be angry and vent. We're a very understanding group, and a safe place to let it all loose. You have been through so much, and now to be told that you have *this* after being blown off and misdiagnosed ... well, many of us here know the feeling.
Like janeatiu says, try to channel your very justified anger into action that will get you the best care that you can possibly get. Where you live, there is some world class expertise. Do whatever it takes to get there, and whatever you must to get the most aggressive treatment that you can.
One of my ways of channeling my anger (and I still have more than enough to go around) is by being here and supporting others as a mentor, coach and advocate. By golly, none of Seenie's friends are going to get burned by this disease if she has anything to do with it!
We're so glad that you're here. Hope you are too.
Some of our experiences would be funny if they weren't so sad. I had a really fun time with my inverse psoriasis back in the day. There was the consultant who was determined that I must have worms and did his bestest to find them, that was nice, and also the GP who said that my armpit psoriasis was linked to the fact that we no longer live in caves. Eh? What? Beam me up. With a look of utter disgust on her face she explained that it was due to not shaving, like a cave woman. Had I shaved those armpits I wouldn't have had any skin left.
flow said:
I've been reading up about psoriasis, and it seems likely from what I've read that I have had occasional episodes of what is called 'inverse psoriasis' for 30 years. The first episode was in my groin, and originally diagnosed as herpes, but lab tests later ruled that out and I never got a diagnosis. So I saw GU doctors not a dermatologist, and when I subsequently had similar sores in my (what's the official name for bum crack?!) too, and in the fold under my breasts, I didn't even think to connect them. But they were generally similar to that belly button rash...