Hi whoever you are!

General
1

We have loads of new members, every week they (you!) keep on coming. The majority don't post though. That's not surprising - this site's so informative, there are many very useful articles in the 'Newbies Guide to PsA' and the search facility can provide answers to a huge range of questions - no wonder many of you don't feel the need to post. So for those of you who choose not to enter into discussions, we hope you find plenty of information and experiences that help you to live well with PsA.

But ..... I can't help wondering about those we don't get to 'meet'. So I'm sending out a call here to anyone who's not posted yet to pop in, even if just this once. What you say is up to you but I'm especially interested in whether you've found what you're looking for and whether it has helped. And it would be a real bonus if you were to let us know how you're doing. Maybe you feel your PsA is too 'mild' for you to need regular support from a forum such as this .... if so, let us know how little PsA affects your life - there will be plenty of newly diagnosed folk who'll be very interested to hear that!

Looking forward to hearing from you!

2

I'm reading this at work and realizing that PsA now affects me in ways that are manageable and tolerable--this wasn't the case when I was newly diagnosed. I have this site to thank for putting me on the road to recovery. Reading about others' experiences and asking questions when I needed to helped me to better understand how to talk to by rheumatologist and what to expect with my medications. This site--whether I was actively participating or lurking in the background--became a source of considerable comfort and hope.

I do wonder, like you Sybil, how others who don't post much feel about their experience here and how useful they find the site.

3

Hi Sybil....OMG I just looked at the Members section and there are so many newcomers. I wish we could have a meet and greet!!! We're all in the same boat and what I thought was such a rare disease, years ago hearing that 5% of people with psoriasis would develop PsA--yeah, right! Now we know that number has increased! Look at all these people just joining the support group with their horrible symptoms and how many are out there undiagnosed, misdiagnosed, and people who would like the help of a support group like this but don't know such a thing exists (like me for the 6 years I knew I had PsA and wasn't told and didn't know to go looking online).

It's so sad.....maybe someday there'll be a cure! Let's hope!

Hi to all newbies who have or haven't joined any discussions. Maybe some of us (me) need the connection with others who are in the same situation and we have an easier time venting our frustrations and fears. It's way easier for me to talk with these people than my friends, coworkers and family. Here, everybody understands where you're coming from, whether or not they've had all the same symptoms. We all agree, it's an ugly disease and it's nice to be able to lean on each other!

4

I'm not exactly new, but I don't post much. Nothing to lose by jumping in.

There are things I like very much about this site. You all have done a great job writing up basic information and getting it in order so it can be easily found. This site is moderated. The only other PsA site I've found is not, and there are too many flame wars, trolls, etc. I'm too old and cranky for that. I'm all for evidence-based medicine and appreciate that being the focus here.

So, why am I not more active? A few reasons.

The request often goes out to use the search function before starting a topic that may have risen before. OK, I'll just read old posts, even if they are somewhat peripheral to my current concern. Don't want to annoy anyone by asking something that's already been covered.

There is a narrative here: you get diagnosed, you fall into "the gap" for a bit, then life again becomes sweet. This is not how my story is unfolding right now. Not to say it won't later, but every joint I've had imaging done on is pretty well jacked, and treatment is not yet wildly successful, four tries with three biologics later.

I recently read a statement on this site that synovitis has nothing to do with PsA. I have some synovitis, tenosynovitis as well. Does this disqualify me? I don't know. The prevailing attitude towards prednisone is pretty negative. I would love to get off it, but that's just not feasible right now. My rheumy, primary, and endocrinologist are all on board with this, by the way. It's a low dose, I seem to be tolerating it well, but I feel that here, taking it is nothing to advertise. Oops, I just did!

It feels to me like there is an orthodoxy, and I don't always fit. I don't necessarily want to share my experiences on others' posts if what I have to add doesn't meet the standard of discourse.

Having the posts divided up into categories is a mixed blessing. It allows me to skip the one section that doesn't interest me in the least and the one I aged out of a few decades ago, but I probably miss things in other sections that I might find helpful or interesting, or that I might have have some insight on to share with someone else. I'd guess the same is true for others. With eleven sections, I'm sure I have missed plenty of posts on my random trips through here.

I said at the top that having the site moderated is a good thing, but I wonder if it does squelch discussion a bit sometimes. You all truly seem like lovely people, but I wonder if all the posts from people with a title under their photos makes folks feel that the question has already been answered by an expert. Which you all are, but the effect might be like the kids clamming up when the teacher walks into the room.

I'm not sure this is the sort of answer you were looking for, Sybil. It is obvious that a number of you put a lot of time and energy into this site, and it shows. Lots of great info here, and thanks for all you guys do. The discussions, though, don't always feel quite as open or welcoming to me as they do in other places. Maybe I just don't fit this particular mold, maybe I'm overthinking things. One person's late-night opinions.

5

I have to say I don’t get any bad vibes from this group. I’m 100% sure I go overboard with my frequent comments and am certain I am annoying (I know this because I even annoy myself sometimes haha) but people, especially some of the moderators, are really nice to me and everybody. I joined another group awhile back but people were making really stupid remarks, putting people down and downright verbally fighting with each other. I haven’t been back there since. I felt welcome from the get-go here. I apologize that I don’t always check out past discussions, but when I have I’ve found some to be really old and for the newbies I think they probably don’t want to dig so far to find information they’re seeking.

6

I’m new. I generally have been able to find answers to my questions by searching the site. The questions that remain after searching are generally the unanswerable ones. I haven’t commented otherwise as I don’t have much experience to share - so far I’m just surviving.
~Sia

7

Hi everybody; I'm also reading this at work on my lunch hour. I'm glad I found this group, and I have learned some things. Sometimes I feel like I don't know enough to even ask questions. Today, I'm having a bad day, and it's one of those days where I'm just sick of the pain. I think this group would be a good support system, because sometimes I can't even stand listening to myself sometimes when I'm complaining to my friends. I am thankful to the people that started this site, and those who keep it going. Oh, and I think another reason I haven't posted too much is basic shyness.

8

Just a thought which came to me while reading Louise's post is whether there is somewhere on the site that the mods could post a short biography about themselves, their backgrounds and any specific interests/qualifications relevant to PsA as this might help our new members to get to know them a bit better. Maybe something a bit different to their general profile page?

This might be especially helpful to people who don't read or post often as they may miss information about some of the specific expertise an individual mod brings to the site.

9

I don't think when you are encouraged to search old posts that is in lieu of asking, at least it not supposed to be. Its so you get the most information. When something has been discussed several times while its new to you, some of our members just don't feel up to answering it again OR they have moved on and aren't here anymore.

So please feel free to ask. I get very disturbed with a do a search reply.

Everybody's journey is their own, and what you see here is the journey most PsA patients take. I would hope nobody would feel left out or unwelcome because theirs is different. it certainly isn't intentional. As far as the Predi, We have all taken it. but as far as the general dislike for it and why, its worth considering that their experiences may be something to learn from.......... We all have to do what we have to do. We just need to be sure the price is one we are willing to pay. There are no refunds

10

Louise, your comments are really thought-provoking. You’re right: this site is VERY moderated. Sometimes I think we moderate too much, but then again, unless there is careful oversight, you end up with inaccurate information, put-downs, trolls and flame wars. We’ve all seen them and they aren’t pretty. And if you want something that deters people from posting … getting flamed will do that for sure!



We did the categories and set up the Newbies’ Guide for the purpose of letting people find reliable answers easily, and exactly when they need them. That’s a good thing, but then people take the info and wander off. Maybe that not such a good thing. And your point about disappearing when life’s under control again is well taken. We know that happens.



Does anyone have ideas for stimulating PsA-related conversations here? We do get to know people, and it’s always lovely when we do, but there are so many friends that we haven’t met yet! How can we encourage a more meet-and-greet online culture, while maintaining our commitment to accurate information and evidence-based treatments?

11

Well we can chat and send private messages to our friends. I guess that is sort of a meet and greet. I really enjoy that. It’s fun to talk one on one with someone who feels like a friend so far away! Also, the varied opinions as well as evidence-based information can all be helpful. Sometimes it’s interesting to hear of some natural remedy as long as people are made aware that it isn’t endorsed by the medical community but it is something we can try if we so choose. I became desperate for real “medicine” after attempting a cure through at least 25 natural remedies. I don’t regret that because I would have always wondered if I made the right final decision about biologics had I not tried the diets and herbals first. Something that comes to mind is celiac disease and how that is controlled by eliminating msg. It still seems possible to me that there could be something we eat or don’t eat that may make our immune system go haywire. I should be sleeping but this is a good place for me when I have insomnia.

12

Mod intros would be a great idea!

I had something else to say, but my short-term memory is shot. LOL

Oh...and as far as unanswerable questions go - ask away! It gives others an opportunity to know they're not alone in having those unanswerable questions and lets some of us who have btdt to chime in with suggestions on how to make peace with the unanswerables.

13

Hi! I’m brand new to the group. I just took my starting dose of Humira (80mg) on Tuesday and I have felt so terrible ever since. I am hurting all over. Is this normal?

14

Thanks Sybil! Finally today, 4 days after my starting dose, I am finally beginning to feel better. I will post in “medications” though because I have other questions. Thanks so much for replying.