In fact, it’s my 46th birthday, and I admit that I am struggling - as I always seem to on birthdays for some reason. Especially in my 40s. My 40th birthday took place about two months before I got my sudden onset of PsA. I was happy, healthy, and had plenty to look forward to after finishing my PhD and about to start a career teaching and researching. So, the idea of life beginning at 40, seems a bit a**e about face (as my mum would say!)
But I confess that with each birthday I do sit here and wonder “how many more will I have until the PsA gets so bad that it zaps every enjoyment out of life?” And I’m sure I can’t be alone in that. At the moment, I still have these weird tingling/trembling/shaking things going on - which, from a common sense point of view, seem to be related to amitrytaline which I am taking for my stomach. And it works for my stomach, which is the annoying thing. And I sit here wondering whether I would be happy to have the trembling feeling if it means I can live my life without worrying about going to the loo every day. The answer is “probably” providing I could be absolutely sure that it was those tablets causing it. I doubt we can do that unless we stop them for a while - and I’ve said we can do that at the end of March once my gig is out of the way. The trembling feeling occured in bed last night (it normally doesn’t happen during the night), and so I swapped ends of the bed and slept with my head at the foot - which is higher. And it went. Which makes me wonder if it’s really the tablets, or some inflammation somewhere caused a trapped nerve or something of that ilk. Who knows?!
But each birthday seems to have yet another different symptom associated with it, and I always wonder “what delights will we have during the next twelve months!” I think, in all likelihood, I will have to 'fess up in April at my next hospital jaunt and tell them that the Benapali, like me, isn’t working as well as it used to. Perhaps a change of meds will reinvigorate me. I certainly seem to be stumbling from day to day at the moment, rather than having much enjoyment. The pain has been getting worse in my knee, and the shoulders ache badly. I guess I’ll have to take that plunge, and be done with it.
Happy birthday to you! I totally feel your pain. I’ll be forty-nine this summer and adding more and more things on. But, that said, there’s not much Choice other than to Keep On Keepin On. so some friends and I are already starting to discuss our 50th birthdays because half my neighborhood is turning 50 in the same year. And it’s a big birthday so we may as well celebrate it big! And if I’m recovering from yet another surgery or dealing with yet another condition, it just means that I’m still pushing through.
Happy Birthday, @darinfan, and may you have many more but ones where you can actually say you’re looking forward to a good year because you’re feeling better!
Only someone with PsA or a very understanding person can comprehend what you’re going through.
My forties weren’t full of PsA, so I feel really bad for those out there who were diagnosed in their 40s, 30s, 20s or younger…it’s just not fair. I did have psoriasis, but other than being embarrassed about it I didn’t let it run my life. The 40s brought back problems, neck pain and plantar fasciitis, but not the typical symptoms of PsA that came on in my 50s.
By the time I was 60 I didn’t think I’d make it to 70. I can’t imagine how much worse that is in your shoes—feeling like you can’t handle many more years of it and you’re ONLY 46. Oh, to be 46 again!!!
I hope things turn around this year and there’s a biologic that can help. Hang in there!
Happy birthday from me too. I’ve recently turned 58 but in all honesty in my head I’m still in my 30’s. Bodywise, heck knows. I am better than I was aged 54 when PsA hit me out of nowhere though.
Meds wise I think you and me started Benepali around the same time. I stayed on it 11 months, but it only truly worked for me from around month 6 to 9 then went rapidly downhill. It was like a switch went on and then just went off. It couldn’t cope with the compressed lumbar fractures in my spine. Imaraldi just hated me so I only lasted 8 weeks on it, side effects were reigniting my asthma after 10 plus years being fine, making me poo for England and having me wading through a impending sense of doom persistently.
I’m now in month 4 of Cosentyx - the 5 weeks loading doses were amazing. I’ve plataued (spelling???) somewhat since on the monthly dose. But I’m still ‘better’ than I was. But it’s not ‘amazing’ anymore. I’m back at rheumy at the end of March so we’ll see. I’d prefer to be taking this every 2 weeks instead of every 4 weeks I think. I’m on the max dose of it already at 300mgs so I’ve nowhere to go with it either but I’m loathe to change meds yet again. My thoughts are to give it a full year at least.
I don’t really know what my expectations of a med should be though. Should they always be at the ‘amazing’ stage or is the OK but too many ‘niggles and issues’ stage what it is. I really don’t know that. I know when a med is working and I know when it really isn’t, but I’m never sure if the inbetween stuff is really the ‘best’ it stays maintenance wise.
Hi again…
I’m convinced the pain I deal with now isn’t PsA pain. When I started Enbrel several years ago, the symptoms I was having miraculously vanished and I haven’t had them since, other than mildly a few times. Those symptoms were the crushing fatigue, painful stiffness everywhere and puffy hands and feet with the constant wanting to stretch my fingers…oh, and the tendinitis!!!
My podiatrist told me my feet are severely damaged from OA, he didn’t think there was PsA damage in them, but I’m pretty sure my rheumy would disagree. OA can cause tons of pain, though, and no biologic will fix that. I think initially the damage was from PsA and OA is secondary to that.
About 3 years ago, most of the damage in my hands and feet was deemed to be OA (ultrasounds and x-rays). Last year x-rays of the same areas showed further deterioration and, guess what, suddenly the damage was interpreted as PsA erosions.
I hear it’s not necessarily that easy to tell the difference. A lot hangs on the quality of imaging and experience of the radiographers.
Damage is damage, though. I do agree, damage from whatever cause is painful and potentially disabling.
Thank you for the replies. As you know, I’m always worried that things get put down to PsA which aren’t actually PsA - but then I also tend to think that it would be a bit random of the current problems were completely unrelated.
I think with the Benapali, the problem came last summer when I was doing and on again, off again, thing because of my stomach issues, and eventually the PsA found a way around the Benapali and has become “resistant” to it. Certainly, I will have to talk to the rheumy in April!
I’m firmly of this view as you know. I guess I’m lucky PsA hit me so suddenly - it means my initial base line x-rays were pretty free of any damage howsoever caused. I haven’t had years of no diagnosis and constant PsA issues to muddy those films in the way some of you have. No OA damage showed up and no PsA damage showed up beyond a little toe, which I broke when I was 12 so not surprising on that one. I have a little damage on a hip and my hips have engaged with PsA from about month 6 of suffering it. The hip x-rays were done a year after that.
I’m 48 and ended up on a ametripylene in addition to my other drugs and injections and them was switched to neotripylene (I found after a few weeks the ametripylene was making me depressed). The neotripylene worked well on my nerve pain initially but then I did start getting electric/nerve tingling. I stopped for a few weeks and lost the nerve pain but then started to feel generally worse. Since Xmas I’m trying to mix it up- some nights I take it, other nights I don’t which is a bit hit and miss but better than before
Sorry for delay, Chris. It seems to come and go for me, but thankfully is a bit better at the moment. I’m hoping it stays that way, but an re evaluating at the end of March to see what is the best option.