Hi, I have decided against the Anti TNF drugs because of my underlying lung disease and also because my father has Pancreatic Cancer and one of the risks was pancreatic cancer.
I found it hard to look beyond the risks associated with the treatment and felt I couldn't risk being made more ill.
However my rheumatologist kept telling me that the benefits of the treatment far outweighed any suspected risk.
Unfortunately no one can tell us whether or not we will be in that small minority who do suffer the worst side effects or the larger majority who do well. there is of course those who actually have no benefit too.
I dont suppose I have been of any help as my confusion certainly didn't help me!
Hugs

I too am very confused still about taking all these meds, my mom died at 65 from pancretitis and then her liver quit working. she had crohns and R.A but the diseases dident kill her, they said the meds did. so it makes me leery to know that all these meds have chances of downfalls for me as well. and like you..rhuemy acts like it was a fluke or something with my mom. I try to just trust what doc says and enjoy feeling hopefull and have a quality life rather than quantity I guess. but it can be hard, and were the only one who can make that choice for ourselves. I pray you get the answers you need to make the right choices for you and pray for peace about it too. I know I wasent much help either...

Sorry. I meant to say TNF blocker, but you know what I'm referencing :). How many on here have tried minocycline?

I tolerated periods of fairly high levels of pain for about 25 years and was not willing to go for many of the meds. due to fear of the potential bad side effects. Finally at age 58 the pain had intensified to the point that I could not block it out. There were many days that I would take vicodin every 4 hours and then take 2 percocet at bedtime, and pray that I would not wake up. My Rheumatologist convinced me to try enbrel and my pain was 80% better in 2 weeks. I have been on it now for 2.5 years and a "bad" day is way better than a "good " day was prior to enbrel. I think for me, the pain just got bad enough, and I had gotten old enough that "long term" possible side effects were of much less concern. Enbrel has given me a life that I did not think possible. I can pick up my grandchildren without them seeing a pained expression on my face, and I live a very active life. I started running 5k races this summer and feel great. I am thankfull every day that my Rhuematologist "strongly" encouraged me to try the biologic drug.
Matt

I can totally see that Matt. I had the same relief with Enbrel myself. It's just that after having such a scary reaction to methotrexate, I feel vulnerable.

I understand the way these TNF blockers work. By suppressing the immune system for RA, they suppress our body's ability to fight a cancer cell growth. I know our bodies have random cancer - just mutant cells - everyone has them or has the potential for them. Without normal immune system action, cancer can grow and go unchecked.
I just don't get the total picture of increased risk.
I can't live hurting - agreed.
It's the hope that enbrel alone lets my immune system do it's job.

Perhaps one day, there will be a TNF blocker that can be taken for 4 months, then skipped for a couple months, etc. without the threat of losing efficacy. (allowing our immune system to patrol for cancer, etc)
Perhaps one day, we'll be cured.

My husband and mother died young from cancer. They didn't take any medications, they just got cancer and passed. It's part of life, you have no idea how your end will be, but everyones time comes sooner or later. I miss them very much, but I'm not going to live in fear of the unknown. I'm going to take the only drug, that made me able to move out of my bed, and get my life back.

I felt the way everyone does about the fear of our medicine. But oh my gosh, I couldn't walk, or use my hands, or enjoy my kids. I'm glad these drugs were made.

Is it possible to try one of the less harsher drugs like Minocycline?

Crikey Matt, you're hard as nails! I'm only one year in and think I'd top myself if I had to live like this indefinitely. Glad you finally have some relief!

Sorry I didn't read all the posts. I am on Minocycline. I started it at the beginning of Dec 2011. It's working well for me. The best place for info about it is the roadback.org there is a forum on there with lots of people that use it for their autoimmune disease.

I took Minocycline when I was first diagnosed about 6 years ago. It worked great until I developed Minocycline Induced Lupus and wound up in the hospital. Had to stop taking it and it broke my heart. The good news is that doesn't happen very often so I say go for it if you can.

There is a volunteer Maz on the roadback forum, I think she is also one of the rare people that got it, but I think she has continued her treatment with another kind of antibiotics. I guess all RA drugs have a lot of risks. I hope Minocycline works for me for a long time.....Trying hard to avoid the harsher stuff.

I also attempted other antibiotics, but they just never seemed to work. I finally had to admit defeat and go on MTX and Humira. doing very well on them I'm happy to say. : )

Horrible painful blistering rash from Remicade infusions. Ongoing since November 25, 2011. Still being treated for it and still experiencing new breakouts. I told my rheumy today I will never take Remicade again.
I'm remaining on MTX. I've taken so much prednisone in the past 2 months for this reaction that my RA is better.
TNF drugs have so many bad side effects and since I am one of those people who are allergic to so many medications, I should have known better than to try it. It's a wonder drug for many but unfortunately not for me.

I have been taking Humira for five months, and it is really starting to help. Untreated RA was worse for me than the possible side effects of the drugs. My CRP was way too high and I was in danger of heart damage. So far, no adverse affects from Humira. I am slowing getting my "life" back. I was in so much pain before Humira, that I was merely existing, not living. I am very thankful that the TNF Blockers are available. I think everyone has to weigh the benefits against the risks. When I was first diagnosed I was so certain I would not take a biologic. Then the pain became unbearable, and I am so much better because of Humira. I had no quality of life before Humira.

I ended up getting a call from Rheum doc today - told me to hurry up and get over there and they would get my finger joints injected with steroids. In the nervous space of time of being readied we talked about enbrel and other TNF blockers. Doc said he will get exact numbers for me, but basically the lymphoma risk is higher for us RAers in the first place. Then, in studies with Enbrel it's 3x general population- There was 1 case of lymphoma per 1000 patient years. roughly.
So general population would be 1 per 3000 years.

Anyway, he is very encouraged in using Enbrel in his patients. Most tend to use Biologic plus another DMARD.

I feel like I'm going to use the Enbrel and when it fails ( it seems it will one day), I'll try something like planquenil only. Still hard to wrap my head around all this.