I'm not expecting a whole flurry of responses to this discussion given that it's summer where most of us live (I think anyway, my geography's not up to much) and those I'm trying to 'catch' are even more likely than the rest of us to be out and about doing interesting things.
But here goes! I'd love to hear from those whose PsA has been well and truly tamed, controlled, sorted out. I reckon the membership is big enough that there might just be some of you who don't feel you need this site much anymore, but are just popping in to take a look. If so, perhaps you could tell us just how good you feel and how you got to this happy state of affairs! There must be many people whose PsA is under control / who are in 'drug-induced remission' but for obvious reasons we don't hear your stories too often.
I'll kick off by saying that I've never had a proper(?) flare since starting meds or at least nothing like the maelstrom that floored me 2 & a half years ago. There's still work to be done, but if I'd known then that such a lasting improvement was possible, I'd have been considerably less worried. And having been through that I still have a real sense of optimism about what Humira might do for me. Exercise and sensible living (mostly!) have truly helped too. It'd be so good to hear even more reason for optimism.
I'm optimistic to a degree, but there's always the thought that Enbrel will stop working or I'll get sick and have to go off it, which will upset the whole apple cart. Right now I'm feeling good, but there is still constant pain and weakness in some places-my feet and hands, and intermittent pain in several places--mostly my neck and SI joint. I walked through Sams Club this afternoon and felt like I was walking like an old person. But, despite all that, I still feel a thousand times better than I did a couple months ago... And my psoriasis has really cleared up well over the past week. So, I think Enbrel is finally getting to my skin!!!
I have to say it feels so good to be able to move faster in the morning and be minus a lot of joint pain and stiffness and fatigue. So good!!!! It's hard to remember how bad I had felt--how desperate I was feeling less than 5 months ago when I begged two doctors for prednisone! I was so sad then!!! Our kids have commented several times they're so glad their old happy mom is back!!!
Yes it would be great to hear more success stories!! It gives hope to those who are doubters (like I once was).
Two and a half years and 5 different meds later, and I'm getting there. I failed on MTX, Humira brought down the swelling but that's it, Enbrel didn't do much and Simponi wore off after the first week. Finally, Cimzia seems to be doing the trick. The stiffness in my good hand is for the most part gone and I've gone from crushing fatigue to mostly just tired Most days now I feel pretty good and there have been a few when I've felt great - like what I remember normal feeling like. So I'm happy and hoping Cimizia takes me through the long haul.
I think I consider my relationship with PsA and PsA medications as "ongoing". While, like Garndma J says, I'm oh, so much better than I was when i was first diagnosed, I don't think I'm close to feeling like I'm well. Or truly back to my old self. Even with Humira and after Enbrel and MTX and sulfasalazine and and and I'm really not all the way to better. And small fluctuations in environmental factors including stress at work, not being adequately rested, and even changes in the weather, seem to throw my body for a loop. Biologics can only do so much, I suppose. And the likelihood that I can quit my job or move somewhere the weather is pleasant and unchangeable is pretty improbable. So I doubt I'll make your list of medical remission anytime soon. But I think I still count as a success story.
You guys are all sick of hearing stories from me - so I'll just say, though I still get more tired and it happens more frequently than before onset (and apparently I am an unbearable grump when that happens), and occasionally I reach out for some OTC painkillers when my back or neck tells me they are there - I actually had the thought last week - "I think I'm in Remission." With a capital R! Its taken over a year of Humira (and a previous 6 months of Enbrel) to get here, but its a nice place to be :)
Yep - my capital R moment was when I suddenly realised that despite having had to delay my Humira by ten days due to the flu, I'd actually been feeling pretty darn good for the last 5 days since I kicked the flu good and proper! There was a temptation not to take the Humira and see if somehow I was magically in spontaneous Remission.... but luckily sanity prevailed, it was after all only about 4 weeks ago I was there with the heat packs in the microwave staring at the Tramadol in the cupboard (where I eventually decided to leave it)
This is tough for me because the last 2 weeks have been very stressful for my family. However, the Humira must be working because I am still walking. I know this doesn't sound like much but it really is a huge improvement. Thank you for reminding to take a moment to be grateful.
My rheumy showed me the PsA damage in a few of my finger and toe joints. I had circled the joints that still give me some pain on his document, and he told me now that the Enbrel is taking care of the inflammation the painful joints I have are mostly due to osteo arthritis-which I have a lot of. So, I guess I can expect to have that pain to always deal with here and there. If my neck and SI joint would stop hurting I'd feel pretty normal....and I'm confident they will because in the past p.t., ice and heat over several weeks would clear things up.
I know I am not in remission since it's only been 3 weeks since my last shot but I am feeling good. My psoriasis is 90% clear and my pain is way down. I keep having the occasional break through pains but some IBU does the trick. Still taking sleeping meds since I am a horrible sleeper. I wake constantly for no reason. Overall I am the happiest I have been in decades. Still scared the meds will wear off before the 12 weeks, but today I am happy.
I don't think I will ever feel the way I used to, but somehow find a new normal for myself. Even if that involves medications.
Yep, long haul flights, long working hours, and every challenge to my immune system you can name - in the last 4 months alone, Dengue Fever, Salmonella, and Influenza A.
I have a strong suspicion that if I took it a bit easier, I really would be in remission with a capital R, and those little flares I get from time to time might be fewer and further in-between, or not at all. And I am thinking very seriously about it (I don't want to add Malaria and Ebola to the list above...... ).
But as you say, the important thing is to feel "good enough"- ie good enough to do and feel the important things - not much point in carefully getting to, and staying, remission with a capital R if I'm not doing the things that are important to me (which is a whole other subject!).
sybil said:
I gather your work is pretty demanding, so for you to say you think you're in remission is really interesting, given the degree to which your body's tested by long haul flights and so on.
Jen said:
Yep - my capital R moment was when I suddenly realised that despite having had to delay my Humira by ten days due to the flu, I'd actually been feeling pretty darn good for the last 5 days since I kicked the flu good and proper! There was a temptation not to take the Humira and see if somehow I was magically in spontaneous Remission.... but luckily sanity prevailed, it was after all only about 4 weeks ago I was there with the heat packs in the microwave staring at the Tramadol in the cupboard (where I eventually decided to leave it)
Jenn. I sincerely doubt your PsA or life would be improved if you compromised your life and quit living it on your terms. Infact its MORE likley it would get worse. You didn't get better until you took this job.....
May I be so bold as to ask what the hell you are thinking??? You got flu from your daughter for gosh sake, who probably gt it from snotty little girl in a play group somewhere something you will be far more exposed to and less control over than being in Africa............... I got salmonella at the fair last week. You got that crap because you were living your life not because you chose NOT to be a desk jockey.
Preach it, lamb! ALso, what the hell did you eat at the fair that gave you salmonella? Isn't everything deep fried on a stick?
tntlamb said:
May I be so bold as to ask what the hell you are thinking??? You got flu from your daughter for gosh sake, who probably gt it from snotty little girl in a play group somewhere something you will be far more exposed to and less control over than being in Africa............... I got salmonella at the fair last week. You got that crap because you were living your life not because you chose NOT to be a desk jockey.
Ah Lamb, I wouldn't go do something that didn't have some serious element of fun! of course ironically, the flu was the thing that knocked the stuffing out of me, not the Dengue or the Salmonella (and my daughter definitely got it from a kid at daycare)! Having said that, I do think Malaria or Ebola might be a substantial challenge...
But I'm with Jane, more interestingly, how on earth did you get salmonella a the fair last week?????? In Australia that'd be in the national news and we'd be having our own "outbreak"!!!!
tntlamb said:
Jenn. I sincerely doubt your PsA or life would be improved if you compromised your life and quit living it on your terms. Infact its MORE likley it would get worse. You didn't get better until you took this job.....
May I be so bold as to ask what the hell you are thinking??? You got flu from your daughter for gosh sake, who probably gt it from snotty little girl in a play group somewhere something you will be far more exposed to and less control over than being in Africa............... I got salmonella at the fair last week. You got that crap because you were living your life not because you chose NOT to be a desk jockey.
You use the same meds for malaria as you do for PsA you know........... Ebola could be a problem. malaria is only a problem if it flares. You are already prewired for dealing with flares :-)
lt could also have been the Viking(s) (Swedish meat ball batter dipped and deepfried) deep fried twinkies, deep fried oreos, tater pig (a potatoe with a hole drilled through it and stuffed with a ling sausage) Possibly the lefsa, tacos, corn on the cob, cheeseburger, or eggrolls. Then it could of been the Zipper (one of the Carnival rides) that my grandaughter and her two girlfriends were afraid to ride without me among other several. Anyway things didn't "come up" until I was socializing in the Beer Gardens.................. I learned my lesson several years ago about the beer gardens and mechanical bull. I love the fair. I did delay both my MTX and Enbrel a day. Thay seem to be working. As ol ol Ernie (hemmingway) used to say; "Always do sober what you said you'd do drunk"
It didn't "come up" until you were socialising in the Beer Gardens? Now call me a skeptic, but here in Australia nobody would believe your story about salmonella!
You've got to watch that Viking nosh. 'Living History' job over the summer of 2011 up in Shetland. Now that was wild & woolly come to think of it. We were left to our own devices with no facilities, this was our dinner. I've not felt right since but it was a blast.
tntlamb said:
lt could also have been the Viking(s) (Swedish meat ball batter dipped and deepfried) deep fried twinkies, deep fried oreos, tater pig (a potatoe with a hole drilled through it and stuffed with a ling sausage) Possibly the lefsa, tacos, corn on the cob, cheeseburger, or eggrolls. Then it could of been the Zipper (one of the Carnival rides) that my grandaughter and her two girlfriends were afraid to ride without me among other several. Anyway things didn't "come up" until I was socializing in the Beer Gardens.................. I learned my lesson several years ago about the beer gardens and mechanical bull. I love the fair. I did delay both my MTX and Enbrel a day. Thay seem to be working. As ol ol Ernie (hemmingway) used to say; "Always do sober what you said you'd do drunk"