Hello from North Carolina. New kid on the block

Just wanted to introduce myself to you all and give a little info on my psa and my background. So as its says in the title I am in North Carolina, I was diagnosed with psa in may of this year a few days after my birthday what a joy right? So its beeen 2 1/2 months I guess. It has beeen a bumpy ride I can tell you that, I went through what i wouuld call your typical stage of depression for a week or so. You know the whole this is the end my life is over deal. Well im out of that now and here to say that my life is not over and this will no define me as a person. Yeah it sucks but thats life right? So a litle about my psa its in both my knees my left hand and lower back and i can start to feel pain in my ankle as well as i am getting spasims in my calfs every now and then and of course the psoriasis portion of this wonderful deases (joking) is in all the typical places worst is on my head. I currently am taking methotrexate which has helped me some with the pain defently helped with the sewlling in my knees. Over all this is new to me and not a good new but im dealing and am looking to incourage as well as be in couarge by others who know my pain and suffering and look for people to share ideas and info with as I progress on. So more about me I am 25yrs old, Happily Married to an amazing woman who is helping me thorugh these tough times. I work as a Priviate Military Contractor so my knees are my life lol. I love fishing and hiking and backpacking and will contuine to do so regardless of the pain, I have a high pain tolearnce and as my wife says Im a stubborn ass lol. I tend to joke about stuff like this its kinda my motto if i cant laugh about it, im gonna get mad about it. So i either laugh the pain off or get mad and push on. If my body wants to be a stubborn so can my brain and it does what i tell it to lol. Really Glad this site is out here and look forward to hearing from all of you. Remember we are really tough every day we fight so that makes you stronger than the average joe or jane for my lady warriors out there! So keep your head up and keep moving forward!

Best regards,
Doug K

2 Likes

Hey Doug! Glad you joined us, but sorry you qualified for the club. Yup, it’s a monster, this disease, but I think you’re going to be fine! I say that because you have the right attitude, and because we are into a whole new era of treatments, with more and more coming out all the time. And you are young enough to have a prospect of benefiting from them.

High pain tolerance, huh? Make sure your doctors know that. It’s a mixed blessing: yes, it does allow you to carry on when others would crumble. It also means that your body isn’t giving an indication of how bad your disease is. I figure my diagnosis was delayed by about 15 years because of my ability to soldier on. And then it was assessed as “mild” because I was continuing to function. Only after severe and irreparable damage was found in my feet, did someone realize that my disease was actually severe, and I received appropriate treatment. In the words of my beloved (not) GP, “When you say it hurts, other people would be screaming in agony, so we know now that need to take notice.” Easy for her to say: my tolerance for pain cost me my knees and my hips (3/4 replaced now) and the comfortable use of my feet (I have a mobility scooter and a blue parking tag). Don’t be like me, Doug: when something hurts, don’t play it down and push on.

Yes, PsA is tough, but we are tougher. That’s not an excuse, though, not to take advantage of the best care and treatment that is available to you. When you don’t take what’s available to you, PsA wins. Don’t let that happen.

So welcome here: we have a lot of really nice and interesting people who enjoy a good conversation. Join in, or start your own. We’re glad you found us, and hope that you will be too.

S

1 Like

Two and a half months? You’re going some with the positive attitude!

I kind of think that exactly the ‘right’ attitude is hard to come by. But your stubbornness coupled with your obvious realism is going to stand you in good stead for sure. I guess I’d echo Seenie on the high pain threshold double-edged sword scenario though. Me too … now that pain has been muted by very effective treatment, plus I’ve got used to it, I can barely describe where it is. It has become ‘just me’, just how things are. Yet somewhere in my stupid brain there’s the knowledge that there is pain and it does affect specific areas and it does get me down. It’s the kind of thing you’d rather not dwell on 24/7 but at certain times, e.g. rheumy appointments, it’s best to be crystal clear about such things, especially in the early days when the effectiveness of treatment is being constantly assessed.

Great news that the swelling in your knees is going down already. And that you have a wonderful wife who is fighting your corner. Pretty much sorted really! Good to meet you Dougk3.

1 Like

I definitely understand the high pain tolerance as a double edge sword lol. My family reminds me every doctor visit to tell the doc of my high pain tolerance which I have. He said yeah I figured you where the type. I try not to complain about the pain too much one of those people who feel like it’s my cross to bare. But when it comes to the doctor I tell him about every little pain just to be one the safe side. Only time will tell how my condition progress. I know my body has a tendency to build up a tolerance for medicines so will see if what I’m on last. Mornings and nights are the worst for me. What use to take 15mins to great ready now takes 45. Thanks for the response look forward to taking more

@Sybil yeah I try to keep a positive attitude about it. If you let it get to you it’ll consume you. So I push forward and look towards the future. One day at a time is how I take it. I am very lucky to have a wife who fights in my corner she has really stepped up to this new challenge. Oh I definitely let my doctor now when I have any new pain and try to give him a pain level which is hard since I guess my tolerance is different but I still try. There’s good days and bad days. I just try to focus on the good. Great to hear from you hope to talk soon.

Hi Doug. I’m glad you’ve joined us and I also applaud your attitude. The high pain tolerance can be a Godsend and a curse at the same time, so it’s good to hear you’re keeping your Dr in the loop. I wish we were all getting acquainted here under different circumstances, but then none of us would be here at all, right?! :slight_smile: My situation is/was very similar to yours. I’m about to turn 45, but my PsA began in my knees at age 25, and took another 10 yrs to start affecting my back. We kept thinking the knee problems were just an oddity, but after 5 knee surgeries, my wonderful surgeon sent me to a rheumatologist. It would take another 4 yrs (plus a swollen wrist and foot) to finally get a diagnosis, and there were another 4 knee surgeries in that same amount of time. The degeneration in the right knee was too far gone (and had accelerated severely in the those last 3 yrs) by the time I started a PsA medication. I guess I’m saying protect those knees at all costs! :slight_smile: I’m thrilled you started treatment so soon, and I hope the Methotrexate helps immensely.

1 Like

I am definitely trying to protect my knees lol since my job currently depends on them. Luckily we caught it early on. The meds help with the pain but definitely don’t stop the pain and it seems like the longer I’m on something the less effective it become have you has this similar thing happen? I do try to keep a positive attitude I think that combined with my pain tolerance and good old fashion pain killers our what keep me able to move around. I have notice my ability to run is pretty much a no go hurts alot and jogging is only a short distance. You definitely have to learn how to do some stuff in a new way. Everything I have read pretty much says the meds just help slow the progression down didn’t know if maybe you or some of the others could confirm this or not. I’m sorry you had to have surgery so much I know that is not fun. I have to say that every one I have met so far on here seems to be some of the toughest people this is truly an amazing group of individuals on here. To deal with all these struggles and to share there’s story’s like you have is truly an amazing thing and show me how tough the people with psa are. I look forward to talking more.

Doug k

Hi Doug,

I also think your positive attitude is fabulous. Like everything in this PsA world it all depends. Some people progress faster than others leading to damage, some people wax and wane without much evidence of damage occuring very fast at all. So the meds do help to slow it down, or enable some people to almost forget about it. It sadly all just depends on how your own disease progresses and indeed whether the meds help you or not. It does seem a lot of people progress through the meds eventually as either they can’t tolerate some side effects, or the meds just stop working and another one has to be tried or another combination of them.

For example mxt hates me and just remders me incapable of anything but I’m tolerating sulfasalazine well so I’m just waiting to see if it works. I understand that being that my pain levels decrease significantly and my capacity increases significantly and of course such damage as I have hasn’t progressed. It all does though take a long time.

It sounds like what you’re doing is helping you so keep on at it!

Listen to the rockgirl!

And I would add to her wisdom: be even more protective of your feet. Knees can be replaced, but foot problems are very difficult to fix. The best foot surgeon in this region told me that, basically, my arthritis damage was un-fixable. My PsA specialist (researcher) told his resident, “Never, ever let this happen to one of your patients. Never. Foot complaints always take priority.”

Because if your feet are shot, it doesn’t matter much how good your knees are.

2 Likes

I get the knee thing Doug and yup take care of them. BUT the thing that struck me in your story Is your age(25) your sex (male) 45 minutes of morning stiffness, and lower back with spasms in your ankles I’m glad you are responding to MTX but I think you need to have a talk with your rheumy. 45 minutes is too long for a male your age. I would push for some more aggresive treatment. Given your age, sex and symptoms, it just makes sense to stop any possible progression. Despite the fact you do physically active work, you really need to get into a very aggresive lower back program. The chance of Anlylosis is just too high not too. What doesn’t move will rush. Us studly guys (LOL) tend to compensate for physical deficienceys and keep going other ways which bites us in the rear on occasion.

chocolates

3 Likes

Seenie,
I absolutely love the way you write and the humor you bring with it… :slight_smile: I hadn’t given feet a single thought until last December when my foot started giving me trouble. It’s amazing how one’s focus shifts when your body’s literal foundation isn’t able to keep you upright.

2 Likes

Doug–I’ve only been on one medication for the PsA, but my troubles with medications no longer working only involved NSAIDs. I’ve been through all of them over the years, and the few that don’t wreak havoc on my stomach just don’t help with the swelling anymore. Annoying as it was, the information was very useful in convincing my Orthopedist and Rheumatologist that something had to be contributing to the chronic inflammation. I was finally able to get a reduction in swelling when I began Plaquenil last November, though it took 4-5 months. I hope you don’t see a similar problem with the PsA meds, and I will be following everyone here to learn more about that myself.

Hi Doug,

Some of the meds can be, for some people, less effective over time. This is well known for the biologics, both in studies and anecdotally - your body finds a way ‘around’ the effects of the biologic, usually by developing antibodies to it and destroying it quickly after it enters your body.

I don’t recall reading anything in the literature about this and MTX though. Whether it is becoming less effective, or your disease is becoming more aggressive probably has the same outcome, so that in combination with what TNT has said above might be a good reason to discuss some other treatments.

Yeah the methotrexate works for me right now we keep having to up the dosage only side effect I can tell it gives me is I’ll get short term memory loss or forget what I was talking about but it works out great when my wife ask me to do the dishes and I forget to do them I can just blame it on the meds lol.

@tntlamb I definitely am playing on talking to the doc about the spasms and I’ve told them about the lower back pain but they just through that in with my knees. Yeah 45mins to get ready sucks especially when I have to wake up early to compensate and any time you gotta get up earlier is no bueno for me. I’ve been starting to work out again because it seems like as soon as the psa hit me my legs just didn’t have the umph I need to get things done. Trying to sit on a toilet and not being able to hold my self up and plopping down on it creating a loud noise in a public restroom is not my idea of a fun time lol. I will definitely push the back pain again

@lisarockgirl4 I try to keep things light lol. Humor is good for the soul. Yeah my feet and knees are my life and like I said early not having the strength to gently pop a squat on the toilet but instead creating a loud thud as my knees give out on me is not my idea of a fun time in a public restroom lol. But I life it off and say shit happens

@lisarockgirl4 yeah the meth (methotrexate) it’s cooler to call it meth. Is working so far to an extent besides in the morning and night but, I just use my old man can during those times. I appreciate you sharing I’m gonna talk to my doctor about some of these meds everyone has tried it the meth fails on me. So glad this site is here.

2 Likes

@Jen75 yeah I’m gonna talk to the doc about it. It came on fast and it seems like it continues to move fast I definitely think we caught it early but it just seems like my meds aren’t working as fast or as well as the doc wants them too. I told him as long as he can keep me walking I can live with the pain. It was when it first hit me and I literally couldn’t walk with out holding on to something that scared the shadooke outte me. I hate taking the meds the side effects are crazy and if you wanna have kids that’s a no go.

Another reason to discuss alternative therapies with your rheumatologist!

And no, Doug, living with the pain is not good enough. Pain is your body’s signal that something’s wrong. And in your case (and mine) something’s VERY wrong!

OK, so I’m nagging you. :rofl:

Doug, how long have you been taking Mtx? Just for the couple of months since diagnosis, or longer for some reason? Just asking 'cos it can be quite a while before it takes effect - 6 weeks, 2 months, maybe even longer - and then some of us find that the improvement continues to build thereafter. As for side effects, I do agree nobody should have to put up with really rotten side effects but are you drinking a lot of water regularly and also taking Folic Acid? Those things are the main defence against Mtx side effects.

Also, I’ve yet to find any drug that ‘sorts the problem’ 24/7 nice and simple. Even when the improvement is downright wonderful, PsA kindly gives you ‘little reminders’ from time to time. Even when well controlled, the disease tends to wax & wane.

Ah, the public restroom. You may be the first person on here to identify that particular indignity. I’d recommend avoiding posh restaurants till your knees are a lot better. The type of place where snotty looking waiters insist on pulling your chair back … and then firmly shoving it under you. With nearly rigid knees that is quite an experience.

Again re. Mtx … in the UK where I am you pretty much have to at least try it as the first drug. Elsewhere, it still is usually the first drug. I see it as the gatekeeper to other meds. It can help quite a lot but a little patience is required, partly to wait & see and partly perhaps to let your rheumy know you’re going to work at this, that you’re deadly serious about sorting this thing. The main function of the DMARDs and the biologics is indeed to slow or prevent disease progression and joint damage and I would have thought that you’d be a candidate for biologics sooner rather than later. In any case, don’t jump ship because you and your rheumy need to find the smartest way through … a way to protect your joints and keep you working and active and take account of your age and the desire to start a family etc. It’s important to aim high!

Seenie is right to nag. I can live with the pain too if I have to … I mean, I barely noticed giving birth to my third child in terms of pain. I think having a high pain threshold is a fortunate physiological quirk with me, rather than anything to do with courage. But the pain of inflammation is one thing … the damage it signals is quite another. Let’s face it, if knees are wrecked by PsA walking is not possible.