My turn at this

After reading as much as I can, I’m finally getting the courage to introduce myself. My name is Fran (62) and I’m a PsA sufferer (among other diagnoses). My diagnosis came in late July this year and,at that time was going through a flare that I didn’t know was a flare. I hadn’t heard of PsA before (maybe once or twice in a commercial) but never took notice. My new primary had suggested I see a Rheumy to rule out RA. It took a month and a half to get in to her but was well worth the wait. She ruled out RA but threw in PsA to look at. At the time, I was thinking I was going loony with everything that was going wrong with me. I usually laugh at my aches and pains in life but was not laughing about things anymore. It took from then till now to be able to wrap my head around this and accept what was going on and not beat myself up because of it. I haven’t started any meds yet (she wanted to hold off because of the meds being pretty intense and I was ending that flare). Since then, I’ve started with CBD oil to help the inflammation and mmj edibles for the pain (I can’t take Advils or anything like it because of stomach problems). This has worked so far to help keep the small flares and daily pain down a bit. Not perfect but it helps (my wife is the one who started noticing an improvement after three weeks). I would hate to see what condition I would be in without it. I know some day the meds are in my future but I’m trying to hold off as long as possible. I do have my good days and bad days like all of you but I take one day at a time and get through. I’ve stopped beating myself up for the bad days and now accept them.
At this time I would like to thank all who have written about their battle with PsA because this is where I learn from you to get though it. Please excuse any bad typing (TY spellcheck) or long sentences. I have a tendency to be wordy (is that a word?)…



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I think it is–it’s in my vocabulary anyway, as most here would attest to. :roll_eyes:

Welcome, Luthier. Sorry you had to join us, but hey, it’s a nice group! I’m glad you found us! I get you when you say it took awhile to wrap your head around it. It is a shocker to get a diagnosis of something that’s chronic and crippling and just a big pain in the a** most of the time, but I guess it’s good to know so you can do something about it.
I imagine recently it’s seemed like the bad days were way outnumbering the good. I used to write on my calendar “feel good day” so I could keep track of the few of those I had. That’s when you finally decide enough is enough!
Hang in there and I hope you continue to do well with the mmj and CBD oil, but I can tell you the serious meds–the ones (biologics) you’ve seen on the TV commercials–aren’t bad at all and most of us have no SEs from them. Enbrel has been working like a charm for me for 3-1/2 years now.
Good luck!

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Thanks for the welcome. After sleeping for the past twelve hours (something I have never done in my entire life), I’m just having a chance to get back to the forum. I still woke up wanting to go back to bed and still feeling like I’ve been in a trainwreck. Gotta love this PsA stuff.

Sorry, my right hand must have hit a key to post the above reply by accident without finishing it. Throw in Osteoarthritis of both thumb joints on both hands and the knees and I’m in great shape.
Grandma-J, thank you for the input of the meds that help you. When last time I saw the rheumy, she said the first thing would be Mtx. Since I last saw her, I’ve been diagnosed also with Gastritis of the stomach and esophagus, along with duodenal ulcer disease. Limits what can be taken orally. Now throw in a slight dislike of needles and it makes a mess of things. I should be seeing her in a few weeks to get her caught up on everything going on with me and see where I go from there. As much as the oil and edibles help, I think I’m ready for what she wants me to go on. Thanks again for the input.


You’re welcome!
For me, it always helps to get up and move. Before I had PsA I literally flew out of bed in the morning to shut off my alarm and was always a morning person—never had any stiffness or pain, just raring to go! PsA really changed all that! During the “gap” before I started Enbrel it was extremely painful to roll over in bed (my back) and to get up I had to brace myself one side on the bed and the other, the wall, to carefully move out of the bedroom! Now, because of a lot of things (damage to my lower back and feet mainly) I get up slowly and carefully, but the thing that helps the most is icing my lower back for a few minutes in my chair while watching the morning news :fearful::confounded::worried::sleeping: and then just getting up and moving around.
The thumb joints–yes, the knees–no! Sorry to hear your knees are bad, too.
And, geez, did your stomach have to get in on the party??? I wouldn’t doubt that is PsA, too–I think it affects tissue more than anyone knew a few years back.
Most people here dislike the sureclick auto injectors, but I love them. I press it on my stomach and never have to see the needle. It hurts a little, but I have an aversion to sticking needles into myself, too, so it’s the only method for me!

A big warm welcome to you, Luthier. Sorry you “qualify” for the club though.

BUT you know why you’re feeling like this now, so it’s OK. Listen to your body, that’s a really important thing to do.

So many of us here can relate to what you said about going loony! By the time I was diagnosed (after about fifteen years of complaints) I was so convinced I was a hypochondriac and completely nutz that I quit mentioning most of it to my doctor. I mean, there was just no point, and I’m sure she was relieved that this hypochondriac finally shut up already.

I know some day the meds are in my future but I’m trying to hold off as long as possible.

I get it, a lot of us do. But here we have a mantra about that: fear the disease, not the drugs. I held off a long time, but in my case it wasn’t intentional: I had these crazy symptoms, blood work that was normal, and x-rays that seemed to be fine. I accepted my doctor’s opinion that there really wasn’t much wrong with me, and I managed to avoid meds for about 15 years. Today I have two prosthetic knees, one hip, and another hip that is on its last leg. My feet have been damaged beyond repair. Don’t get me started: let’s just say I wish I hadn’t waited so long to get on the good meds, even if the delay was unintentional.

Here’s a book you might like. Lots of it consider it our PsA “bible”. They emphatically make the point that early and aggressive treatment gives the best long-term outcome. I think that you need to have a serious discussion about that with your rheumatologist. BTW, I’m impressed that once you got to the rheum, you were diagnosed fairly quickly. It doesn’t always happen that way.

Again, a warm welcome to you. Great that you joined, even if it’s too bad that you’ve got what it takes to join our club.

Thanks Grandma_J and Seenie for the encouragement to go for the meds sooner than later. I was telling my wife this morning that, with the way I was feeling, that I thought it was time. I keep thinking “imagine what things would be like if I wasn’t doing the oil or edibles”. I’m glad she still listens to my complaints. My next rheumy visit, I’ll be asking for the next step. Things seem to be progressing faster than I would like.
As for an early diagnosis, the symptoms actually started a couple years ago (possibly longer than that). My primary, at the time, was a “got a symptom, here’s a pill” type of doctor. I went from my old primary and two useless specialists to a new primary and, now, nine specialist. But, at least, I’m getting answers. I went through a long flare that finally got me to a rheumatologist and she is great. She understands where I am coming from and is willing to work with me. That flare had also brought on some depression that ended right before seeing her for the first time.
Thanks for the book recommendation. I, now, am always looking for information about this. This forum has been a good source for helping me. I’m also doing a daily journal just to keep track of things. I’m a good one for forgetting symptoms that had aggravated me in the past. My wife has a better memory than me of what I’ve been through. This journal is now my tale of this journey. I can refer to this to remember when and what was acting up at the time and when the good days happen. This also enables me to mark the important things to bring to the doctors attention of what has been going on.
Again, I’m a little too longwinded here. Unfortunately, for all of you, I’m sure more will be coming out of me in the future. Thank you all again for the welcome.

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For a lot of us the symptoms come on slow and gradual, and then suddenly snowball into something unbearable. I was diagnosed for 6 years before I felt like I had to “do something” to rid myself of the symptoms. Actually at about the 5-year point I was starting to feel pretty sick and for the last year before I went on Enbrel I felt terrible most of the time. I was 60 then, and I kept saying there’s no way I’m going to make it past 70–maybe not even to 70!
What a difference Enbrel made! I’m
always disappointed when I hear people had a bad reaction to it or any of the other biologics. But, I really think most people do well on them. You won’t know until you try! I was so negative about the meds. I, too, wanted to wait it out for as long as possible. But, that really wasn’t the best approach. I didn’t think it would help my PsA and then I’d be really depressed. So, you can imagine how happy I was and still am that it works for me! I sure hope you have great results from whatever biologic you choose (and yes, you’ll have some say in what one to use). I chose Enbrel because it’s once a week and I thought if I had a bad reaction to it, it would only be for a week. I know, sounds crazy! :joy: But, I am a pessimist.
I hope you have a success story like mine and so many others here! There’s not much worse than feeling sick all day every day. It’s nice to have a partner who listens to you and understands what you’re going through, too! :blush:


Hi Luthier and welcome!

You sound eminently equipped to battle this disease. Especially in the wife department. Plus you ponder and digest information.

PsA runs deep, it affects the whole body and the mind. At the same time it does seem to respond really well to lifestyle changes and certain complementary approaches. Therefore dealing with it can be flipping time consuming!

The way I look at it the biologics are the closest thing to tackling PsA at source rather than the (nonetheless useful) tinkering at the edges. I stumbled on, literally, on Methotrexate and other traditional DMARDs and saw quite a bit of improvement. But Humira was a sea change.

I thought my knees were done for, they were very swollen for a few years and are affected by quite a bit of secondary osteoarthritis, but once I started Humira back in 2014 they improved no end. A few months back I was driving along and saw my neighbour’s daschund tearing along the middle of the busy road in a state of distress. Without thinking I parked up and gave chase. Yep, I ran! I didn’t catch it, someone else did, but the thrill of the chase! This was not such a great idea actually but I think it says something. Time was I couldn’t walk at all.


Thank you all for the encouragement to finally start the meds. Not sure where she’ll start me because a lot has happened since last seeing her. I’m sure with the stomach with the way it is (this diagnosis came after the last time I saw her), will probably limit, to degree, what she will start me with.
Sybil, I have two Great Danes that keep me moving as much as I can do these days. most days, these days, are pretty tough trying to stay up with them. Going for a run again with them would be great (hasn’t happened for quite a few months). Walks with them are getting harder to do.

Again, thanks for the encouragement everyone. I always looked at it as a possibility that if the meds stop working, next thing you know, you’re in worst shape than you were before taking them (besides worrying about the side effects). Being self-employed makes me stress a little more about the situation. It’s only recently I’m learning to get my head around this to help keep the stress down. Would hate to have something happen that keeps me from working. As it stands, the thumb joints in both hands are blown out (OA) and will only get better by surgery. I can’t do the few months of recuperation for each hand and be out of work for that kind of time. Out of the three things I need to do my work (hands, hearing and eye sight), two are going on me (hands and hearing). If I can get some of the results that some of you are having with the meds, it will be worth it. Will post back as to what she starts me with and hopefully, with some good results. Thanks again for the encouragement


Welcome! This is a great group-- super informative and supportive. It is a safe place to vent, question, gain knowledge and offer your thoughts and support. Sorry you have to join the club, but it is a pretty cool club :slight_smile:


Hey Luthier, long time no see!
What’s up? Did you get going with some medication, and if so, how’s it going?

Hi Seenie,
Hope you are doing well. It took a while to find something that finally worked. Plaquenil is the drug of choice for now. I found that Plaquenil will knock the pain from an 8-9 (without Plaquenil) down to a 3-4 level. I know it’s not a cure all or that it will work forever but, right now, my bad days are better than what my good days were without it. I have also found a 1:1 whole plant extract (CBD / THC tincture) that helps knock the pain down to a 1-2 level. Taken sublingual, it works for about 4-6 hours for me. For now, I’m just riding the wave till things stop working.

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Hi @Luthier,
Just noticed this discussion was active a few days ago!
My husband took Plaquenil for almost two years. A couple months ago he decided to go off it…his doc said give it a month or so and see how you feel. My husband hadn’t thought Plaquenil was effective (he had some pain—his diagnosis was RA, but I think it should be PsA because there’s psoriasis in his family).
Well, he’s been off it for about 6 weeks and the pain is getting worse by the day.
I think simply because the meds aren’t totally 100% effective, we tend to not realize how effective they actually are.
I hope you have continued improved health!

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Hey Grandma_J,
I think you are 100% correct in regards to medications, because as patients we manage symptoms everyday, we don’t realise how effective some meds are. I know for myself, I can easily become addicted to the meds, so I try to regulate my intake. If I keep taking pain meds as a preventative they lose their effectiveness when they are needed. My wife ‘tries’ to have me take the darn things ‘every 4 hours’ as per the recommended dosage. But in doing so, if I have ‘break through’ pain, they don’t work as well. If my discomfort is climbing (and climbing) I know I then need medication.

Merl from the Moderator Support Team

Hi @GrandmaJ,
I agree with you and Merl on this one. Just because the pains are still there to some degree, doesn’t mean the meds aren’t working for you. I’m never 100% pain free. The Plaquenil and tincture knock it down to the point where I can function through daily life. I would love to stop taking all the meds that I’m on but, in reality, if I do, I take the chance of feeling a lot worse when the meds wear off. I still have good days/bad days but the bad days are better than what my good days use to be without the Plaquenil. For right now, Plaquenil is working for me (along with the tincture) to keep the pain down. Because of stomach problems, I can’t take any of the usual pain meds. I also realize the Plaquenil can stop working at some point but, for now, I’m sticking with what works until the day when I have to try something else.

GrandmaJ, I hope your husband finds the med(s) that can help him.

He’s going back on Plaquenil ASAP!

Hi @Grandma_J,
I’m glad to hear he’s going back on it. I hope it doesn’t take as long to kick in. I’ve never gone off since starting it so I’m not sure if the wait time is the same. Hopefully not. I hope he starts to get relief sooner than later.