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Living with Psoriatic Arthritis (PsA)

What a shock!


#1

Hello, what a lovely group! I’ve been reading threads on and off all day today, and wow, I feel like I’ve read the story of my life, several times over!

I was diagnosed with psoriasis in 1982 at age 16, but first noticed skin patches around age 14. Back then I was prescribed a coal tar remedy, and that was that. Minor skin condition, no big deal… Who knew what was really at stake here.

Fast forward to age 33. I was under a lot of stress. College, family, a paralyzed grandmother (accident) whom we cared for at home. I was exhausted, in pain, and had all kinds of weird symptoms popping up:

nodules on my fingers
unrelenting back pain
hip pain
tingling - pins and needles in my toes
chest pain
wrist pain
shoulder pain
weakness
exhaustion
anxiety
halo effect around lights

I ended up with diagnoses of:

Hypertension
Idiopathic peripheral neuropathy
Psoriatic Arthritis
General Anxiety Disorder
Fibromyalgia

My doctors seemed to focus on the hypertension (prescribed a beta blocker) and the anxiety (prescribed a benzodiazepine). And I’m sure hypochondriac was written in invisible ink somewhere in my charts.

I was told there wasn’t much to be done for the neuropathy, except lose weight, as they had no idea what the cause was, and I was given Celebrex and a pat on the back for the arthritis pain. After all, everyone has arthritis, so it’s no big deal, right. The rheumatologist told me, “I can prescribe Celebrex or Vioxx now, and you’ll be good to go. A year ago I would’ve told you to prepare for a wheelchair in ten years.” And proceeded to dismiss me back to my PCP.

I took Celebrex on and off, until the Vioxx scare, then I resorted to aspirin as needed. In 2013 I had surgery and can no longer take NSAIDs or aspirin. I now rely on Tylenol and Tramadol.

These past few months have been extremely difficult. I’m on the verge of giving up and filing for disability. Something I never thought I’d ever consider. I finally sought a new provider. She sent me to a new rheumatologist last week, and I will see a new neurologist in 2 days.

My new rheumatologist has left me reeling. He prescribed Methotrexate, and plans on a biologic when insurance will approve. I left there understanding that this is way more than a little bit of skin itching and discomfort along with some very painful joints. No doctor has ever made it a big deal before, and since I’ve had psoriasis and psoriatic arthritis for so long, it’s really been years since I researched it. I’m truly in shock at how it is so systemic, and leads to a shortened lifespan. This has been insidious, really. My thinking was - I’m just getting old. A new ache here, and new pain there, another knot on a finger. But, it’s ‘just arthritis’. It’s not ‘that bad’, look at everyone who’s so much worse off…
sigh.

After researching all weekend, it all fits.
All the exhaustion, the pain, the neuropathy, the cataracts (removed in November at the ripe old age of 51).

I can’t imagine what damage I may have to my cardiovascular system. That is horrifying, as heart disease is already prevalent in my family.

So here I am. 51 years old, doing what I should’ve done years ago.
One step at a time.
Labs on Tuesday after the neurology consult.
First MTX injection immediately following.
Stocking for an anti-inflammatory diet.
Likely asking for a cardiology consult.
Likely continuing plans for disability (which shames me horribly).
Discussing if the beta blocker is still the right choice.
And researching!

But, reading your posts gives me strength. The past is the past, and there’s not a thing I can do to go back and make my doctors more aware, nor make myself a better advocate for my disease.

I hope this is the dawn of a new day. I tried to make the best of my old ones, but I truly have some hope, despite my fears, that life can be less painful and more fun again.

I look forward to learning more!
Thank you! Sheila


#2

Welcome Sheila and wow - what a journey you’ve had. As we say on here, sorry you had to find us but we’re glad you’re here. It will be the dawning of a new day, new hope and new future. And you’re definitely on track to hopefully feeling a lot better. There is simply loads to research on on here and it helps. A lot.

Do have a look at all the stuff on here for first timers - it’s invaluable.


#3

Hi there Sheila, and welcome!! Reading through your post there is much there that I can relate to, although I only got the PsA diagnosis (and tentatively at that) about 18 months ago.

Yep, it’s a shock, and for me a huge relief, especially when you realise that there is treatment for this, and therefore hope for a better life ahead… I’m pleased to hear that you see it that way (that was how I saw the diagnosis too).

Here’s to an awesome 2018 for you, now that you are starting on the path to treatment!! Hang out around here, the people here are awesome!! Learn as much as you can… most importantly learn how to approach things with your rheumy too… It sounds like you’ve got yourself a good rheumy there… that will bode well for getting you on to the right treatment for you ASAP :smile:


#4

Welcome!


#5

Welcome! Yes. The diagnosis and the treatment can feel pretty shocking. I love that you’re ready to face this head on though, and let the past be the past. And it’s not too late for more aggressive treatment. My mom started treatment about 10 to 15 years after having substantial damage. She still has benefited greatly!


#6

SheilaM,

I’m so glad for you you’ve found this place! So many of us were in your same boat in the past and we’ve (a lot of us) have come nearly full-circle in our outlook and how much better we feel since finding this site and getting on the right meds!

I quoted you because that’s how it is!!! “just arthritis” – and most of us have symptoms to varying degrees from day to day or even hour to hour! You sit there and wonder if something needs to be changed in your diet, or maybe an attitude adjustment, or whatever, until it gets to where there are no times when you feel normal and most days you feel like cr*p!!! About every/other month I used to write on my calendar “feel good day”, and that was I’m sure not a perfect day but symptoms weren’t the most intense!

I was 60 - July 1, 2014 - when I started Enbrel (3-1/2 years ago). When I was at the end of my rope around March of 2014, I found this website. I didn’t know really how to approach an online support group and thankfully the moderators and some others were so nice to me. They convinced me I needed to do something before PsA wrecked my body completely–I was afraid of the meds, especially DMARDS and biologics. But, I honestly felt I wouldn’t make it to my 70th birthday I felt so sick.

Enbrel gave me back my life. I still have complaints and problems, mostly because PsA does its damage and sort of sinisterly, but I don’t feel like I’ll die before my 70th birthday, and that alone says a lot for Enbrel.

It’s so good to hear your new rheumatologist listened to you and is on the right track! I love your attitude -

I can envision a girl named Sheila smiling ear to ear! So happy for you! There is hope! :grinning:


#7

Welcome, Sheila

Take heart: you have been diagnosed properly, and you have a rheumatologist who “gets” PsA, and he has a treatment plan that is properly aggressive. Like you say, the past is past and there’s nothing that you can do about it. However, also know that biologic therapy (the only therapy conclusively proven to make a big difference to people with PsA) only became available in the early 2000s, and it was about ten years after that that they came into common use. Starting treatment when you were first diagnosed might not have done you a lot of good. Anyway, it is what it is.

Promise me you won’t file for disability until you’ve given the biologic a fair shake? There’s someone else here who was contemplating throwing in the towel, and we made her promise the same … now who was that? Hey guys, help me out here … Anyway, she improved so much that the disability card got thrown out and she’s still going strong.

I was given Celebrex and a pat on the back for the arthritis pain. After all, everyone has arthritis, so it’s no big deal, right.

Maybe @Sybil will tell her story about that one.

You’ve really done your homework: the idea that this is a systemic disease is an important one about which many people are either ignorant, or in denial. Make no mistake: this disease, while it usually “picks on” tendons and joints, can attack virtually any tissue in your body. We have members who have PsA in places that you didn’t even know you had places.

Finally, seeing you are into reasearch (good for you …), you might be interested in a book which has been like a bible to some of us:
Psoriatic Arthritis: The Facts by Gladman and Chandran.
The Kindle version is a bargain. It’s a bit dated (mostly in terms of biologic treatments that are available) but still a really good guide. My most important takeaway from the book is that early and aggressive treatment gives the best prognosis. An me I had neither early nor aggressive, but I’m still doing pretty well.

We’re glad that you found us, Sheila!

Seenie


#8

Thank you all so much for encouragement and sharing your stories. :two_hearts:
So MUCH positivity.
And validation.
I’m terrified, but it’s better to not feel so alone. I look forward to getting to ‘know’ each of you, even though I’m so sorry you have this terrible thing, too.

I don’t discuss my P or PsA very much, and rarely with strangers. Today I mentioned it to a coworker. I sure didn’t expect her to reply that she has a 9 year old granddaughter with psoriasis, topically treated by only her PCP. I implored her to get her granddaughter to a rheumatologist, and better yet a pediatric one, ASAP.

I think I’m finished being quiet. My quietness did nothing for me, and it’s long past time this is recognized for the serious disease that it is.

Hugs to you all, and thank you for you kind welcome, and sharing a part of your stories.


#9

I absolutely look forward to reading books and links you all share. While doctors have the education to treat, I know from experience it’s the patients who generally hold the bottom line when it comes to knowledge!


#10

Psoriasis alone, especially at that age (9 years old) typically requires nothing more than topical treatment. Any joint pain, lots of “overuse injuries”, etc, especially with joint swelling, should get her a referral to a pediatric rheumatologist. If I remember right only about 30% of people with psoriasis will develop PsA.

That said, genetics plays a big role. Both my kids are screwed. I have PsA, and now my husband does too. My 15 year old just started seeing a pediatric rheumatologist. This was based on the referral from a orthopedist, as well as blood work that was suspicious. So far my 11 year old looks fine.


#11

Sheila, I’m not saying not to go to the neurologist. But if any kind of intervention is proposed, I’d hold off until your disease is under control. I had pins and needles in my feet (as well as horrid pain). I had nerve conduction studies, which didn’t show much. I also had rather bad carpal tunnel in one wrist, and moderately bad CT in the other. The same month that I had the CT release on my worse wrist, I was diagnosed with PsA.

At that point, I put off having the release done on the other wrist. I had worse issues. After eighteen months of messing around with DMARDs under the direction of a rheumie who was sure I had mild disease, I bolted to the PsA research clinic, where they said my disease was severe and that I had a lot of damage. They put me on a biologic posthaste.

The Enbrel started to take effect slowly, and after a few months I realized that my wrist was fine and the pins and needles were gone from my feet. Keep that in mind.

And I still need you to promise that you won’t even think about disability until your rheumatologist has given a biologic drug a good trial.

Promise?
Image result for promise? Picture


#12

Me too! And those pains (pins and needles–or what I called walking on a bed of burning railroad spikes) those pains are gone. But, they did leave their “footprint” haha no pun intended – and my feet are not good. I know the PsA type of pain is gone, but the damaged cartilage type of pain will never be gone! So, even if you can get on a biologic that will take the nerve pain and all that away, the sooner the better, you might have some damage to your joints and tendons. I did leave it go for wayyyy too long–I think Seenie did too because she had a doctor who didn’t realize how severe her PsA was. Seenie, you have damaged feet, too, right?

Good luck–I hope, Sheila, you don’t have the damage yet! It’s really weird how you can think everything is fine–my feet felt great for about 8 months on Enbrel and then, whoa, some major pain hit. I’m just grateful the Enbrel is doing its job keeping the swelling down and there’s really no tendonitis anymore. That, in itself, is good enough for me at this point!!!


#13

Yes, exactly. I had complained about sore feet (amongst other things) for years. Finally, an x-ray showed erosions in my feet. I got referred to a rheumatologist. She treated me for mild disease and refused a biologic because she said my disease wasn’t severe. My question (in retrospect): how could she have seen my PsA as mild when I already had damage visible in my feet? :thinking:

By the time I’d bolted from her, and the PsA specialists put me on a biologic, and it took hold, the damage had got even worse. I was sent to a top foot surgeon. He said the damage was too widespread to operate.

I have limited mobility, and I am very restricted in what I can wear on my feet.

So yes, Sheila needs to protect herself from having this disease wreck her joints. Hips and knees can be replaced, as can lots of other joints. But broken feet, not so much.


#14

Same here…my feet have “aged” so much with the damage in the past couple of years that orthotics and “fancy special” shoes aren’t helping and there’s really nothing to help joints where the cartilage is completely eroded away…walking is always uncomfortable and it’s impossible to walk any distance at all anymore…1/2 block and it becomes exhausting because my feet hurt so bad…the foot and ankle doctor told me the cartilage is worn thin between my ankle and my feet, so I’m not too optimistic about my ankles staying normal and strong. He did tell me that the surgery for that joint has come a long way and it could be an option some day!

Just saying…bad feet are the pits!


#15

Wow! Sounds like we’re all singing off the same page. You’re not nuts or a wuss or alone.
Sheila, so sorry you have to take this journey but so glad you found us to travel with. I’ve been reading on this site for a few years but didn’t post anything until last week and was steered to what I hope is a great doc. Have already seen 2 others but “l can’t get no sat-is-fac-tion” (that song really dates me…:roll_eyes:) I have an appt with him Tuesday so hopefully 3rd times the charm.
Hang in there and let us know how you’re doing.


#16

Hi again, Sheila…I’m hoping things are happening as you had mentioned you had labs on Tuesday and some upcoming appointments.

I reread your “story” and couldn’t help but notice what you wrote about your cardiovascular system. All the inflammation over the years apparently does its damage to that…although, like you, heart disease is prevalent in my family as both a brother and sister had heart attacks–63 and 51!

Well, I thought that wouldn’t be me, even though I’m the one with PsA and all that inflammation rampant in my body–they’re both “healthy”, except they both smoked all their lives up until their heart attacks, and I wasn’t a smoker.

I should have known the PsA inflammation was probably affecting my cardiovascular system. I’ve been taking blood pressure pills since 50 and my doctor kept pushing me to take a statin for my high cholesterol, but I chose to do the natural approach and take fish oil instead. I had a really good HDL and that gave me confidence my arteries wouldn’t clog.

Well, my approach didn’t work–I nearly had a heart attack in 2016, just before my 63rd birthday. I was having a lot of stress at work for awhile, but that probably wasn’t the only culprit–I think inflammation had a lot to do with it–even though at the time I had been on Enbrel 2 years and it was working well to keep the inflammation down…

Just wanted to tell you, make sure they keep an eye on your heart, blood pressure and cholesterol. I was shocked when I had the blockage and had to get a stent put in because I was this close " " to having a heart attack! The pain was so weird it was similar to tendonitis I had in my shoulders and when I got the actual chest pain, it was weird but not overwhelming. It was scary because it felt “different” than any chest pain I had ever had – and as we all know, PsA can cause tons of chest pains so it’s hard to know what’s heart and what’s joints/ribs, etc.

Neither of my parents had serious heart disease, but the fact that 2 siblings had had heart attacks was more the indicator that there was a factor for other siblings to have heart problems, too, according to my cardiologist. Food for thought…


#17

Oh, my goodness! Thank you all!!!
I have been busy the past two days with appointments and work.

I feel so much caring and kindness already. :heart:

I already have a lot of damage from basically having no treatment for this disease for 35 years. Some may wonder at that, but I grew up with a mother who made me out to be a liar anytime I complained about any pain, throughout my entire childhood. It’s hard to get past the feeling that your health doesn’t matter when that’s how you are conditioned. Plus a rheumatologist, neurologist, AND my PCP back then seemed to think I was a couple of pats on the back was all I needed, even after giving me these diagnoses.

Now, I can’t function well. I’ve put one foot in front of the other until I couldn’t take one more step, and then I took another step. And another. Until I found myself at crash and burn. That’s how I got here.

I certainly appreciate the support of everyone! Right now my fingers are pretty painful to type much and hold my iPad, but I want to respond to each and will soon.

I want to reread posts, and really take time to absorb information when I feel a bit better. I’m one day post-methotrexate, my first dose. Not really feeling too well, even with the folate on board.

I look forward to spending more time on this site and getting to know you each better. :blush:

Hugs!


#18

This is my worst hand - has anyone seen significant decrease in nodules with biologics? Or even methotrexate?
Any reversing or regaining flexibility?

I’m not really in a flare right now… I just had a good 6 weeks of eye drop steroids and was surprised at how they tamed some of the pain and swelling, even at that low of a dose.

I have nail involvement but thank goodness it’s just a couple of toes!

These fingers do not work well anymore for drawing blood or lifting on patients. I’m an RN as well as an MLT (lab tech). Those of us in healthcare take care of everyone but ourselves!


#19

Those nodules look like Bouchard (or is it Heberden) nodules. Those are from osteoarthritis. The problem is that minor changes in the joint from inflammatory arthritis can set the stage for osteoarthritis.

My mom’s hands started out with an initial diagnosis of osteoarthritis that they later changed to psoriatic arthritis. And she did have nodules, but that didn’t explain how some joints auto fused.


#20

It is. And I have nodules on one knee as well. I’m hoping some med will help stop them, as everytime I’m inflamed these get worse. My fingers will do the sausage look (as they were at initial diagnosis along with nail pitting).

It’s also in my right shoulder, back, and hips, and a couple of toes. Nail pitting occurs on and off.

These started when I was early 30s. I’m now 51, so the progression hasn’t been quickly.