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Living with Psoriatic Arthritis (PsA)

Newbie Hi

Hi

My name is Doug. This year has been a year of lots of blood tests, xrays…

My doctors tell me I have PSA. I have had pain in upper body shoulder to shoulder.

I had a melanoma so lots of drugs are out of the question. I have been just approved for Costenyx. The side effects scare the crap out of me. I am very hesitant to start as my pain threshold is a 3 and physical therapy helps.

any thoughts are welcome.

Doug

Hi Doug, and welcome! We do have lots of members who are limited with meds, for assorted reasons. Melanoma is a pretty scary reason.

The good news, is that there are so many meds, and so many different categories now. So while some medications may not be usable, there are certainly others that are.

But you asked a bigger question here. You asked about the need for medication when your pain level is reasonably low. The truth is that damage can happen, even when it doesn’t seem as though we’re having a lot of pain. That would be the primary reason to take medication to modify the disease, even if you feel that your diseased state is not bad at this moment.

Truthfully, I have this conversation with my husband. We are both lucky enough to have psoriatic arthritis. I have been on meds, including biologics, for a number of years. He is more recently diagnosed and does seem to have a milder version. I’m not sure that there’s a perfect answer, but the risks do need to be understood.

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Hi Doug,

You’ve been through the mill a bit. Melanoma and then this PsA. Frightening and exhausting in equal measure, I’m guessing.

As I’m sure you know the reason that you’ve developed PsA is due to your immune system becoming abnormal. So the way to get your immune system working more normally again is through DMARDs and/or biologics. They help it stop working away in the background messing around with joint, ligaments, tendons, and a host of other things like eyes, and internal organs. It’s for this reason your doctor is pushing the meds.

Now to some better news, Cosentyx is classed a pretty good biologic. My rheumy says it’s gold standard treatment for PsA. It only targets one bit of the protein in your T cells, called interleukin 17. That helps to make it well tolerated producing in reality few if any side effects for most people. It’s also prescribed to people who have had side effects, some serious from other PsA meds.

I’m on it and it’s my 5th med for PsA. Mxt and sulfasalazine (DMARDs) failed me along with a biosimilar to Enbrel and a biosimilar to Humira. I’m 5 weeks in now (as in just finished the loading dose) and first it’s working and secondly I’ve no side effects. Correction I’ve got one, on the day I take it, I sleep incredibly well that night. I’m very happy with that side effect and will now miss it as I go on to monthly only doses.

Just like your treatment for melanoma was serious stuff, so too are the meds used for treating PsA. This is an autoimmune disease which tends not to go away. And it causes damage, none of that is repairable. So treating it as aggressively as possible from the start is the only way to go.

When I was first diagnosed nearly 4 years ago now, I couldn’t understand why we had to take these big bang drugs, which quite frankly also scared me to death almost. The good people on here educated me and made me realise the sense of it.

Which in turn means that whilst my symptoms have at times been fairly acute and disabling, I’ve haven’t significantly yet damaged anything. Not even through side effects.

This summer I had significant hip and back pain. My rheumy counted up 48 joints which were affected and 5 of them were swollen, none of them being my hips or back either. 5 weeks after starting cosentyx, my hip and back pain has almost disappeared and I can’t see any swollen joints anymore. Suddenly I’m smiling properly again, walking my dog with gay abandon much to his delight, able to socialise more coherently and of course do my job more consistently. Feel like a million dollars presently or maybe $900,000. But that’s good enough to me.

So I hope this helps.

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Hi Doug, and welcome!

Listen to these people (Stoney and Poo) and whoever else gives you that same advice!

I was a doubter. I didn’t think I needed meds—I actually thought it would be a big pain in the butt having to take the strong meds along with all the doctor visits, etc. I didn’t find this group until the pain got unbearable (several years into being diagnosed—I had slow disease progression) and thankfully, they told me what they’re telling you. At first I argued—same old argument—the meds are dangerous, the list of SEs is beyond scary, I’m not that sick, etc., etc. I finally caved and started Enbrel July 1, 2014. The results within a few days were phenomenal and I felt 100% better!

Enbrel hasn’t caused me one SE. I love my weekly injection because I can’t imagine having the PsA pain again.

I have other health problems which maybe or maybe not are connected with my PsA. Enbrel can’t help them, but I know Enbrel doesn’t cause them. Several of my problems—painful, damaged feet, neck, back—are a result of damage from PsA prior to taking Enbrel. I have to live with the pain from that damage! Other health problems I have are probably genetic and have no connection to PsA or Enbrel.

So, please take heed to the wonderful moderators here and others who share their experience. They’ve been where you are. They want you to be healthy.

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thank you for the thoughtful response. I have a lot of soul searching to do and the feedback helps

thank you

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First i wish you the best in your journey. I pain is so minimal now . I also have alot of soul searching to do at this stage. thank you for your thoughts as they do help me in my process

thank you so much

Hi dfpsa,

whatever you decide, please let us know how you get on. If you need to get things off your chest, you’ll be amongst friends.

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Hi Doug, I’m Susan. I’m five years in - with a full year of horrible while I was being diagnosed and cycling through the various 3 month trials before a med could be diagnosed as having “failed”. I was miserable, and frightened, but the folks here saw me through. I can see that agreeing to a med when you aren’t really suffering might seem counterintuitive, but so much forever-damage could be done before you reached your breaking pain threshold. And, take it from me, the “gap period” while a med is first introduced is even harder when you are feeling such pain.
I’m in a pretty good place right now, something I honestly couldn’t even imagine when I was first diagnosed.

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Hello, hello!
Welcome and know that you are among friends. When I first was diagnosed I was in a very dark place that these lovely people were my lifeline. I was also afraid of the medications and it took me a long time to trust in my doctors and the process.

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Hi doug I am new here,and just learning how this site works.I have Advanced PSA,and treatments,and meds can only keep me comfortable.I am on anti depressants,and have to every careful what others i take.most of the meds these days do not help me at all.i have had my share of injections,and do not want to get anymore because they are not working.the meds i need are not available here.i have to go out of town,and I am not physically able.my pain is a 5,but some days it nearly reaches 10.I need physical therapy,meds,and all that,but I am so tired of going from doctor to doctor,and being told that they can not do anything for me.I hope we can be friends,and share ideas,suggestions,or confide in one another.god bless you,and I pray you feel better your newbi friend Carl

Hello dfpsa

I see your welcome here has been just as warm and supportive as it was when I arrived in '11. (That was a very bad year.) I was diagnosed then after years of misdiagnoses and being blown off. I soldiered on for a long time, like you are doing now. Difference is, you know what you have, and you can make decisions about your treatment.

By the time I found a good doc and the good doc got me on the good meds, I’d already lost two knees and a hip. The titanium ones are great, I have to admit, but I’d rather have my own, thank you. The really tragic loss for me has been catastrophic damage to my feet: walking will always be painful for me. All of that happened fairly quickly, while I soldiered, grinning and bearing it. In retrospect, my doctors wondered how I managed. But I did.

Around here we say “fear the disease, not the drugs”. I didn’t get treatment, and I didn’t push hard for a diagnosis, because I was able to put up with the pain. It wasn’t a choice for me, I just didn’t know what I had. If I had known what lack of treatment was doing to me, would I have taken the meds? Damned right I would have. You have a choice.

Whatever you decide is right for you is just fine, but please know your enemy. It can be a formidable one that can change your life. Personal pain perception and PsA can be a dangerous mix.

We’re glad that you found us! As you see, we are happy to tell our stories and support each other in decision making. There’s no right answer: only the answer that is right for you.

Seenie

PS How do we pronounce your screen name? :stuck_out_tongue_winking_eye:

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Same here. And it’s very disappointing. It’s disappointing when most people our age use walking as their main exercise. With feet like this, you avoid walking as much as possible, and never EVER walk long distances.
For me, it’s been difficult to accept because my parents had good feet–my mom’s 94 and her feet aren’t painful at all, plus she never gets swollen ankles!!! I also have bad ankles. My orthopedic doctor told me about ankle replacements. They’re nowhere near as common as knee and hip replacements, so I sort of feel sorry for myself that my ankles are nearly shot! And, I’m not even carrying too much extra weight around!
It could be worse, though. Much, much worse. I thank my lucky stars every day for what I do have and that I have Enbrel to take away a lot of the PsA symptoms. I think it’s just hard learning we can’t take anything for granted and we need to do the best with what we have, and accept and embrace our imperfections and all the annoyances and inconveniences of having a chronic disease.

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Hi

Sorry have been very busy with the end of year stuff
I am sorry for your pain but wish the best for you and all that have reached out

I am trying a holistic approach for the next 3 months. I have done a lot of reading about natural anti inflammatory things

I start my day with a green drink . kale/some fruit like pineapple/lemon water/ginger /tumeric/ chia/flax seeds . i avoid gluten and limit most things that cause inflamtion in body
i also use cbd which helps as well.

considering it is the beginning for me i am trying the natural way to heal body

we will see
happy holidays

Doug

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Hi Doug,

Great to hear that you’re finding some complementary ways to help with the PsA. There are plenty of ways you can make some adjustments and find natural ways to reduce inflammation and pain, and if you’d like to check out what other people in the community have tried, feel free to visit this link below: https://discussion.livingwithpsoriaticarthritis.org/c/complementary-therapies/11

Wishing the best for you this new year! Hope you can keep us posted on your progress.

Hi again Doug.

Recent thoughts / experiences are prompting me to recommend caution about over-reliance on complementary meds.

Here goes: for me, onset of PsA was severe and very painful. I knew the drugs for inflammatory arthritis could be very good and I wanted them. It was quite clear-cut in my case.

Getting on for 8 years later - I’m on Imraldi, previously Humira, I take Mtx too and the biologic / Mtx combo has served me very well indeed. I am often very physically able. So able in fact that I sometimes forget about PsA. And then I have ‘wake-up moments’.

One such moment occurred yesterday. I have sailed through the Xmas celebrations despite ceaseless toil. And yet. My right hand. That is one very important appendage and it is painful despite my best efforts to ignore the pain and increasing stiffness. I have PsA erosions in that hand. The erosive process has continued slowly but surely despite the drugs - heaven knows what would have happened without them.

PsA can move around. Maybe it will leave my right hand alone after a while. Or maybe not. Yesterday I admitted to myself that keyboard typing is hard, that turning the pages of a book is painful, that it takes about 30 minutes every night to find a comfortable position for my hand before I can sleep. And I paint & draw, that’s what I do. I had a ten-minute panic about what the future might hold. My husband quietly admitted that he was already concerned - he is wise and observant.

Doug, I have had so little pain in the last few years. PsA has done the worst damage to my right foot and I don’t think that has ever hurt! It’s the relatively unscathed left one that complains!

Please be aware that this truly is one sneaky disease. Pain is not a good indicator of disease progression or lack of it. Sometimes affected joints can’t even be bothered to swell - well, my foot never has anyway. Have you had any images done of affected joints? At the very least, a growing ‘bank’ of baseline images could help to keep a check on whether your PsA is destructive. But pre-emptive action should be kept in mind.

@Sybil is so right Doug, there’s no natural method to ‘cure’ an abnormal immune system which is why you have PsA. Otherwise we’d all be doing it and indeed our doctors would be prescribing it the world over. Whilst it’s marvellous to fill your body with natural foodstuffs it won’t make your immune system behave itself, sadly. All the stuff you’ve read and researched is sadly mostly unproved and ill researched.

If it helps you when I was first diagnosed I had a temper tantrum about the meds I was expected to take - for an entire year. Until finally the pain and incapacity had me seek out the best PsA specialist I could find in the UK, thanks to the lovely people on here. I’ve had a bumpy road since but not as bumpy as that year and I’ve never looked back. Right now I’m basking in a biologic (my 3rd) which is really working for me. It’s so incredible to be pain free and able do most things I want to. Seriously incredible. It’s also incredible to know from scans and xrays that irrespective on how the various meds I’ve tried made me feel, we’re still head on the damage issue, I’ve thankfully got little or none yet. But I get that checked regularly.