Hi there, I stumbled on this site numerous times while looking up info on PsA, and decided to finally join up. I've been putting up with worsening joint pain for years but in the last year it's picked up speed, this last couple months it's becoming a runaway train. It makes me sad, not just for me but my sister has this disease, too, and my mother has a preliminary diagnosis with it, too.
It worries me about work, and medications, pain management, the whole thing. I was on methotrexate but had an allergic reaction, and multiple allergies to other medications, and now am waiting for my insurance to approve Enbrel to see if that will help me some. At best insurance will agree to pay and it will work, at worst I will have to figure out paying myself and then have a severe reaction to it anyway.
Not much else to say, other than I'm only 37 and hobble around like I'm 100, it feels like my joints are all being pried apart, work getting pretty hard, and even my daily activities are becoming a real ordeal. Some days everything hurts, nearly all joints involved along with muscles and I don't even want to get out of bed. I feel like a whiner if I complain at all, but it's gotten to where I can't really hide how much I hurt or how screwy everything has become.
It just makes me sad :/
Chicken (or should I call you "Oh" or "Look"?), it makes me sad too when I hear of another person having the experiences that all too many of us here know only too well. But you've come to the right place for support and information
Yes, it's all a worry, but one of the worries you shouldn't have right now is whether your insurance will pay for Enbrel. If it doesn't, Enbrel has an assistance plan which will greatly reduce your costs. So take heart. And many people here have found the biologics (Enbrel and its cousins) to be remarkably effective, and many people live very normal lives once they find the treatment that works for them.
It is sad that you have a sister and mother walking the same road. But then again, you will understand each other in a way that nobody else can.
Thanks for the introduction. No worries about whining: if you can't whine here, where can you?
I think these boards will help you. I know how you feel and so does everybody else. The sadness to feel powerless and the constant pain that drives you mad. I can feel it in your writing. In addition, I see the additional strain seeing other members of your family suffering. Hang in there honey, I am sure that your rheumathologist will find something to make it work. You don't know if Enbrel will give you a reaction, cross your fingers and cross that bridge once you are there :) . Are you taking any Nsaids or painkillers to help you in the meantime? . Perhaps some old remedies over the counter, like hot and cold therapies can help take the edge away from the pain, if only a little. I took a nice hot bath with rosemary and eucalyptus salts yesterday and at least it helped me relax the muscles a little. If the Enbrel gets denied, fire along with your doctor an appeal letter to the insurance company and call them and ask for your Case Manager. Sometimes the squeaky wheel gets the grease. :) If everything fails, these drug companies have financial assistance programs. We will share al the info we can and help you, hang in there :) How long ago were you diagnosed? Namaste - Isabella
Welcome! Love your user name. Do you have chickens? We used to have 3, now my son's school has a flock of 5 that I'm in charge of.
I'm sorry you need our group, but it's a GREAT group. Wonderful topics in the history you can search on, answers immediately to just about anything you can ask or wonder about.
FYI, if insurance won't cover Enbrel ( and it SHOULD, most do, if you've failed other meds), be aware that Enbrel has a copay card where they will pay all copays for 6 months, and it's only something like $10 / month after that. If you can't afford the med at all, they have another assistance program. Also, your rheumy's office should have samples you can get for free to get you started while you wait for your insurance to get straightened out.
I don't know if you've used any of the injectable meds yet, but the injections are very easy and nothing to be afraid of.
Again, welcome! :)
Thanks for the great welcome, everyone!
For right now I'm only taking ibuprofen for pain, and tylenol 3 if I can't stand it any more. I was given naproxen but that didn't do anything, I was allergic to methotrexate, and am allergic to sulfa so that knocks sulfasalazine out, the rheumy also told me since I've got a fatty liver that he didn't want me to try a couple of other pill forms for fear of damaging the liver.
Getting shots doesn't really worry me, I get allergy shots every couple weeks and have an epipen...that's the one I'm afraid of using, hahaha.
I don't have chickens anymore, but my sister does and I get to fool with them anytime I want. The best chickens are usually someone elses!
Hi there. We all know how you feel. Many of us have had to give up work. This group helps lots. Not just when you are having bad days but good ones too. Welcome.
I have simple fatty liver and autoimmune hepatitis (along with Psoriatic Arthritis / Ankylosing Spondylitis). My doctor wouldn't even consider putting me on MTX with the fatty liver, so I'm not shocked that you had a bad reaction to it.I'm not even allowed to take ibuprofen or tylenol. Biologics are the way to go with your liver issues. I hope you're able to get on Enbrel soon.
As I always say, better late than never. So here’s a great big welcome to our group! We are happy to add another to our fold, and it sounds like you found us at just the right time. The best thing about this board is being able to whine, rant, laugh be silly or cry with people who really understand what you are going through. I can’t say how much this board has helped me over the last year.
It’s hard to so may times with this disease, but stay hopeful. There are only so many things that a mind can worry about at the same time.