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