My name is Jeff and I'm 48 yrs. of age living in Rochester, NY. I was diagnosed with PsA and Enthesitis in November 2010. Thus far most of the standard stuff hasn't worked due to GI issues. I receive accupuncture every ten days or so which provides about a week's worth of partial relief. In addition I take limited pain meds. due to my primary doctor. Both he and my rheumy indicate the only chance I have is with Enbrel. I tried to get them to consider Tetracycline based on the Road Back Foundation, but they won't. I have two young daughters and work every day, but I have to say that living with intense pain in most joints just plain sucks. I find the biggest challenge is most people just don't get it and are too ignorant to acknowledge a true chroni illness.
Welcome Jeff. Sorry you have this dx though. I'm a relative newbie to this as well. My journey towards dx started in Nov. I'm on mtx for now, but I believe Enbrel will be in my future. I was thinking about acupuncture for myself. Thanks for sharing your successes with it. Anyway, welcome to the group. You will find much support here.
Hi Jeff....so sorry you have to suffer with this horrible disease. I am glad you are getting some relief from acupuncture though, albeit temporary. I assume by your saying the "standard stuff" you mean NSAIDS when referring to GI issues? I guess in a way, you could consider yourself somewhat fortunate that your doctors are willing to start you on Enbel relatively quickly. I was diagnosed in January, after suffering since 2008, and have tried 3 months on Sulfasalazine, and now just starting Methotrexate...my Rheumatologist would NOT move me on to Enbrel or another biologic until I tried at least another 3 months of Methotrexate or another DMARD. Perhaps you have already tried those and I have not read this correctly, if so my apologies...I know of others on this board to that are waiting for the opportunity to get on to Enbrel as they have heard that it works well for alot of people.
So, I would embrace the treatment part of it, as for what other people think, you are right, they just don't get it and most are ignorant and don't bother to take the time to ask, or find out about what is wrong, or what your chronic illness is all about....but you can't change them, you just get more frustrated and angry trying to deal with them, so I have finally adapted the attitude of "F*(& Y*&, you don't know anything about me" to those people, as if they were truly important people to you, they WOULD take the time to acknowledge and learn about what is really important. Sorry if that sounds crass or rude, but it is really the only way I personally have found to stop getting frustrated by all of the selfish, uncaring jerks out there in the world. Interestingly enough, I have found out the hard way, that when you become chronically ill, you really find out who your TRUE friends are.
Sorry for your pain, physical and heartfelt. You know, even if people take the time to look up PsA, there is only so much time they spend exploring it. tnt posted the best short story I have found to date, and I suggested we print out a ream or 2 and enclose them in all cards, letters, and gifts to give everyone a short concise understanding of just what we deal with and are up against.
My Rheumy told me that many Insurances require that you start with "benign drugs" like Sulfasalazine and Methothrexate to see if they are beneficial and if you can tolerate them, before they will pay for the Enbrel, and there are at least a few who purchase out of pocket at a whopping $1,500. a weekly shot!!!!!!!!!
I have just started Enbrel, and notice a difference already after 2 shots! It is not a spectacular one, but I reallly do notice a difference, and like all the rest, it takes 3 months to feel the full effect. I am very hopeful!
I will have to familiarize myself with the Tetracycline treatment before I can comment. I do know that my GP is not for the cancer drugs used to battle PsA. He embraces the breakthroughs of the biologicals.
There are many great people here, and there is good advice and shared experience and wisdom from all walks of life from all over the world.
Ben and his friends have given us a wonderful gift here! Welcome to 'the clan'!
I'm currently on Enbrel and have had very good results in the joints in my toes, feet, ankles, knees, elbow, wrists, hands and fingers. Different things work for different people. If you're not happy with what your doctor is willing to do, get a second opinion.
Glad you are getting some relief from acupuncture. When you find something that gives you even limited relief, you are putting a W in the Win column! I haven't used Enbrel, but it's probably in my future treatment plan. I'm currently using Plaquenil and methotrexate (MTX).
I've lived with this for many years now, and in my experience, most people don't "get it" and never will. If one more well-meaning person tells me, "Oh yeah, my uncle had that and he used some snake oil..." I think I will scream! At least you don't have to endure that here. There are lots of good folks here who are good listeners and can provide a wealth of support and info. Keep us updated on your progress. Welcome!