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Living with Psoriatic Arthritis (PsA)

Another Spin of the Great Wheel of Biologics


#1

Welp, I’ve been on Orencia for about 4 months and if anything I’m getting worse (my skin is definitely getting worse - I haven’t had psoriasis this bad since before I was Rx’d with PsA 7 years ago). So we’re trying to switch my infusion for tomorrow to Simponi (though now I think I might be getting sick so that might be a wash, though I’m still trying to convince myself it’s just that it’s cold out and I really really need to stop smoking (I have a quit date planned for the 22nd, my last day of work before a nice 10 day vacation where I can be a grumpy pus without affecting anyone but myself)). I’ve also been much more fatigued than usual - which is saying something because my fatigue has always been awful, but right now I can easily sleep 10 hours a night and barely have energy to do regular daily tasks. But everything hurts (including my skin, and oh my scalp is just one giant plaque - it’s so bad my hair has weird cowlicks from them), and everything is awful.

Except it’s not that awful - I have been managing to take my two dogs on regular walks a couple times a week (I usually try for about every other day; it doesn’t always work out that way though), and even though my left foot (which has been a mess for over a year now) hates it I can manage it without too much pain or swelling as long as I rest after. I’ve lost about 15 pounds (give or take - I think I was at 88 kg, and I’m down to about 80 kg now), and I dumped my (now ex-)SO because all she did was add stress to my life and honestly make everything worse (there’s more to it than that, but a story for another time and place). So really - things are better, it’s just that my body is a great big pit of nope right now.

I was really hoping I was just having a post-stress flare (the summer was awful, what with being broke, breaking up with my SO, and whatnot) now that I’m not uber-stressed any more, but I’m pretty sure the meds aren’t working and I’m worried that the new meds won’t work either (or I’ll have terrible side effects like I did with Enbrel and Humira) and nothing will ever work.

This will be biologic #6. (Simponi Aria - I’ll be doing infusions)

I’ve tried so many: MTX (still on), Plaquenil (allergy), Enbrel (allergy), Humira (failed), Cimzia (failed), Cosentyx (failed), Leflunomide (failed - side effects), Otezla (failed - side effects), Orencia (failed)… Eventually I’m going to run out - even my Rheum get’s this look on her face like “what do we have left to try?” when I go in - I know we’re running out of options and it’s depressing as heck…

Ack. Oh, well thanks for listening to me complain. I hope everyone else is having better luck with their meds this year than me!


#2

You know what, for someone who has been having a pretty hard run of it, you have some amazing clarity :grinning: I can hear your frustration and I feel for you. You are doing some amazing things keeping on finding ways to walk your dogs, learning to understand your body limitations.

SO breakups are hard, but again, you recognized it wasn’t a good relationship and did something about it. It can take a while for that sort of stress to subside too (mine took over a year before I truly felt it was lessening, and it will likely never be gone - definitely a story for another place - but I have finally noticed myself getting healthier).

You really are doing all the right things, keep persisting and I hope the meds start co-operating!


#3

Thanks! I’m gonna try. I have some kind of cold or whatever I’ve caught to get over then I can hopefully start infusions again, and maybe start feeling better. I’m hoping it doesn’t take too long…


#4

Good luck! Hopefully this will be the best one for you!


#5

Oh boy that’s a lot of stress but look at you! Some thoughts about giving up smoking that might help. I’m a complete nicotine addict so I swapped cigarettes to vaping. That way I could still have the nicotine and still feel like I was smoking but I wasn’t - that was actually so good and a truly easy way to quit. The adjustment was minimal. With vaping you can then decrease the nicotine easier just slowly decreasing it. It was the only method I tried that I was successful with. Doing it cold turkey made me a complete mess, an utter mess.

I so hope this med works for you too.


#6

I’m glad vaping worked for you - unfortunately the water vapour actually irritates my asthma more than cigarettes do (weird but true). So I’m going to give going cold turkey another shot. The good news is that I’m feeling ready to quit. At this point it’s more about breaking the habit then anything else. I’m considering making myself a nice list of incentives to help me out though (stuff like, saving a butt load of :moneybag: and the fact that smoking will actually aggravate inflammation and make it worse). I’m also planning on treating myself if I get it to stick - I’m thinking something like doing a box subscription (I’m thinking either a yarn box subscription or art snacks) - if I start smoking again I won’t be able to afford them so added incentive! Lol.

I just want to be done with whatever virus I’ve caught right now though so I can get started on the Simponi! I’m feeling very impatient with it and it’s only day 2, :laughing:. But I’m not feeling too terrible (just utterly fatigued and a tiny baby cough) so I’m taking a sick day today and trying to baby this thing out of me by spending all day in bed (and maybe some house cleaning because that always makes me feel better). If I have to I’ll do bed rest through the weekend! I want to be healthy enough to start my infusions on Friday. :persevere::sweat::relieved:


#7

Do you guys have access to the nicotine patches? I lost the plot trying to go cold turkey, but they were enough just to take the edge off the physical symptoms and made a big difference to me.


#8

I’m pretty sure we have them, they’re kind of pricey though. I’ve also tried them before and just ended up smoking on top of it. :stuck_out_tongue_closed_eyes: I think my current plan is to just keep myself super busy so I don’t have too much time to think about it. I’m really hoping quitting sticks this time though. I know cold turkey is a pain, but so far it’s been the only way I’ve been able to actually make any progress at it (I’ve quit a couple times, it just never really stuck).


#9

We do in the UK, along with gum, sprays and god knows what else. I tried them all and the only thing to work for me was vaping.

The very best of luck with it @SubliminalFlicker - I’ll be willing you along on all fronts!


#10

Now’s the time, then! And do make a list of incentives!
I quit 40+ years ago. Yes, I had only smoked for about 6 years, but I was addicted and quitting was one of the hardest things I ever had to do. You can do it, though! And, cold turkey was the best way for me…I did sneak a couple puffs off butts I found–yes, crazy but that’s what a cigarette addict will do to get that little bit of nicotine–but I managed after that. They say it takes two full years to get over. To this day I sometimes feel like I’m missing something. When we quit, we drank a lot of lemonade, tomato juice and ate a lot of lemon drops. Oh, and chewing gum.
Quitting is a pain in the butt, (no pun intended) but you really will feel better–make that list!


#11

Ooh, I do love lemon drops, I may have to pick some up. I’ve been smoking for over 10 years, so I know it’s going to be tough, but I’ve got to. It’s just not sustainable anymore. :blush:

Thanks too, @Poo_therapy! I’ll be needing good thoughts. Lol.


#12

I had a close friend who quit and when he almost restarted he bought some lemon flavored nicotine mints. They are less dosage than the patches and prevented him from the act of smoking itself which made all the difference. They were very inexpensive less than $15 if I remember at regular price. Good luck! Working on getting my head into the same game so keep us informed on how it goes.


#13

Ooh. Interesting I’ll have to keep my eye out. So far my quit date is Saturday! I’ll have my last smoke Friday evening and then begin my new journey of being smoke free. Still optimistic, in fact I might be looking forward to it in a way (the amount of money I’ll be saving alone … ).


#14

Hi there @SubliminalFlicker… you really have had a rough time of it, for far too long!!!

Have you started on the Simponi? If so, how are you finding it? I know these things tend to take to time to kick in, but I mean are side effects manageable for you?

As for your quit date… all the best for it!!! I’d love to kick the habit, unfortunately I am definitely an addict of the worst kind… been a heavy smoker for over 31 years now and the only time I managed to go 24 hours without a ciggie was when I was mostly unconcious, due to surgery lol I’ve tried almost everything on the market and always end up still smoking… so to try and make it affordable I’m currently trying to grow my own tobacco… it is legal here to do here in NZ, but I can’t give it away or sell it, and there is a limit on how much we can grow/store too.

Anyways… If you manage to quit this time, you will have my utmost respect!!! I know you can do it!!! (not everyone has such poor self control as I do haha)

Kia kaha (it means: stay strong)


#15

So far the Simponi is good - my only side effect was being tired, but I was tired when I went in for the infusion so who knows if it actually made it any worse. I will probably ensure I eat beforehand next time though (I didn’t get a chance to before my appointment and I kind of regret it, lol). It does seem to already be clearing my psoriasis a bit which is nice (and I just had my first infusion this past Friday!).

I’m really looking forward to quitting smoking in a weird kind of way, so I’m hoping it sticks this time!

Thanks for the well wishes! :blush: