for some reason, my RD pushed Humira from the 1st day I walked into the office. He waited the 6 months for the insurance company and then wrote the rx.
"orencia, rituxan, kineret and soon to be acterma are all biologic meds and they are not tnf blockers" How long have they been on the market? Will the same issues follow?
I saw this list, but it seems like 'the list' is the news - not the concerns. We heard about the TNFs and their possible increased risks for children earlier this year, for example.
You aren't a mouse in a cage in some bio-lab. All you have to do is this week when it's time to inject yourself with humira, just don't. Quit being a pawn to the corrupt big pharms. Show some backbone. Stand up to the the liars and crooks at the fda. Make a statement. I'm sure you don't have anything against the manufacturers of joint replacements, do you? You go girl, make a statement, show them that they aren't going to push rheumatoid arthritis drugs on you. Go to your doctor and tell him that you know he was pushing the Humira because he is in the pockets of big pharms and not because he believed that you had aggressive RA that needed to beaggressively attacked, you go girl. I heard some people say they really enjoy those morphine drips. Those motorized carts are fun too. Good luck with your crusade.
Innerglow - Thusday this was a front page story on Google news, so thanks for bringing it up - this fungal infection connection has got my attention since I have had two fungal attacks while in the sub-tropics after being diagnosed. Maybe that's the five spots that are growing in my lungs.
Catnip - the personal ignore button is a wonderful thing to practice in here ~~ good luck with your personal journey with our common diseases. Take care ~~ Cathy
I was diagnosed with RA ~5 years ago and was on Humira for 2 years. As a 20-something year old, let me just say that those 2 years on Humira were a godsend. I was in clinical remission and could do anything I put my mind to. However, this past Feb I was diagnosed with melanoma. Did the Humira cause the melanoma? We will never know. I do know that no one in my family has ever had melanoma and I've always taken precautions with the sun. Needless to say, I'm no longer on Humira and I now fully realize how wonderful a drug it is.
All of these biologics are a marvelous breakthrough in the treatment plans for those with RA and other autoimmune disorders. I and others like me are a very small percentage of adverse reactions. You have to take the good with the bad. My advice: continue with these drugs while keeping in the back of your mind the POTENTIAL for an adverse event. Use caution and when something doesn't seem right, go to the doctor and find out what is wrong. Be an advocate for yourself and keep an eye out.Welcome Libby.
Is Melanoma only related to skin cancer? (Sorry to seem ignorant) How bad is it? HOw was it discovered and treated? What's pour prognosis now?
I too am on Humira.
Melanoma is a type of skin cancer. Skin cancers range in severity from basal cell and squamous cell, which are almost always 100% curable to melanomas which are more severe and are harder to treat.
If a melanoma is caught while still under 1 millimeter, they are almost always curable by simply cutting the lesion out. The "magic number" for severity is 4 millimeters. Anything deeper than 4 millimeters calls for greater action and a poorer prognosis.
I had a worrisome mole that I had a general surgeon excise. The path report was the kicker as it confirmed melanoma at 4.9 millimeters. Luckily, I live in an area with top notch hospitals in an academic setting and the cancer program for melanoma is one of the best in the nation. I had a surgery to determine if it had spread (thankfully it had not) and to excise a greater surrounding area of the lesion.
My prognosis now is great. I have to see doctors quite frequently for checkups and I have to be constantly aware of anything amiss. But overall, things turned out well...all things considered Welcome Libby - I appreciate your post. There is good and bad with biologics and the decision to take one is not made lightly, but once made, you need to pay attention to your body and reactions. Glad that your melanoma was caught early enough and prognosis is good.
We will see if the biologics are the godsend or a nightmare. If everyone who takes them developes a cancer--I don't think that is a godsend. At that point it won't matter if you can move better--it probably won't matter! Game will be over.
[QUOTE=Catnip2]We will see if the biologics are the godsend or a nightmare. If everyone who takes them developes a cancer--I don't think that is a godsend. At that point it won't matter if you can move better--it probably won't matter! Game will be over. [/QUOTE]
Not true. If (and that's a big if) the biologics cause cancer in "everyone who takes them" but many of those same people get 5, 10, or 20 years of independent, pain-free, non-handicapped living, is it worth it? Cancer is often curable (or at least treatable). Only the individual can make the decision whether it's worth it or not.
Libby,
Were you taking methotrexate at the time? If I'm not mistaken, a side effect of mtx is melanoma. I know that anyone taking mfx is strongly advised to keep covered from the sun. This from Reuters:
Methotrexate for arthritis raises melanoma risk
June 12, 2008
NEW YORK (Reuters Health) - Patients with rheumatoid arthritis who are treated with methotrexate appear to have an elevated risk of developing melanoma compared with the general population, according to the findings of an Australian study.
Dr. Rachelle Buchbinder, at Monash University, and colleagues studied 458 patients with rheumatoid arthritis who started methotrexate therapy at six private rheumatology practices in Melbourne, Victoria, before June 1986. The medical records showed that 64 malignancies were diagnosed during the follow-up period, which averaged 9.3 years, and an additional 9 cases were diagnosed after the patients had exited follow-up.
Malignancy rates in the general population were determined from the Victorian State Cancer Registry and the National Death Index. The complete findings are reported in the June 15 issue of Arthritis & Rheumatism.
Melanoma, the most serious type of skin cancer, also has a greater tendency to spread and is associated with higher mortality rates compared with other types of skin cancer. According to U.S. government statistics reported between 2001 and 2005, the average age at diagnosis was 59 years. Less than 1 percent of cases were diagnosed in patients under 20 years old. The highest rates, at 19.5 percent, were among individuals between 45 and 54 years. Adjusting the data for age, the mortality rate was 2.7 per 100,000 men and women per year. The average age at death was 68 years old.
Methotrexate is considered a second-line therapy for rheumatoid arthritis; it is used when the first-line drugs are not effective. The mechanism of action for this drug in rheumatoid arthritis is not completely understood. It appears to work, at least in part, by altering immunity, which may play a role in rheumatoid arthritis.
The investigators estimated that there was a 50 percent increase in the risk of this malignancy among the rheumatoid arthritis patients compared with the general population. Methotrexate-treated patients also had five-times the risk of non-Hodgkin's lymphoma, three-times the risk of lung cancer and three times the risk of melanoma.
The increased risk of malignancy in general, and of lymphoma and lung cancer in particular, has been previously reported, but the association between methotrexate treatment for rheumatoid arthritis and melanoma is a novel finding, Buchbinder's group explains.
However, Australian residents in general are more susceptible to melanoma, due in part to the outdoor lifestyle there and the reduced ozone layer, the authors note. Therefore, "further investigation is needed to determine whether this risk is unique to Australia," along with the role of methotrexate's immune system suppression and environmental factors, such as exposure to UV radiation, the development of this malignancy.
Nevertheless, Buchbinder and her colleagues conclude that the findings "may support a role for regular skin cancer screening for all patients with rheumatoid arthritis, particularly those receiving immunosuppressive therapy." [END]
Apparently mtx kills cancer by attacking fast growing cells which cancer cells are. The only problem is that bone, skin and stomach cells are also fast growing cells if I'm not mistaken.
AIDS was the catalyst for rushing meds to market - when people are dropping like flies, it seemed like a good trade off. It was only supposed to be for people who were going to die before the med could be throughly tested. But when we opened the door just a bit, Pandora got out.
Jas - how many people on this board get 5, 10 or 15 years of the same biologic? We've got only one or two that made it 5 years if I'm reading the same posts you have. JoeM's wife is at 5 years, I think. And a few other people. The rest seem to get 3 years, tops. Then less and less with each successive med. I've just crossed the 2 year mark with AP - haven't made the 5 year mark. I should make at least 7 but...
Pip
[QUOTE=Pip!]AIDS was the catalyst for rushing meds to market - when people are dropping like flies, it seemed like a good trade off. It was only supposed to be for people who were going to die before the med could be throughly tested. But when we opened the door just a bit, Pandora got out.
Sometimes the point of these FDA "lists" (as well as black box warnings)and the news they generate serve simply to underline the serious side affects of these drugs. They benefit us by making our doctors become more aware of certain symptoms and catching these problems early on.
Libby was diagnosed with melanoma. If this becomes prevalent in those using TNF blockers maybe a regular screening by a dermatologist would become mandatory for those patients. Much like eye exams are for those on plaquenil. That's why I agree with Jas to hold off on these new meds as long as you get relief from the more conventional DMARDS. I reached that point 3 years ago and I have now been on Enbrel 2-1/2 years. I am fully aware of the potential infection and cancer risks (among others). If I developed cancer in a few years would it be worth it? Perhaps not, but for now I am living life to the fullest and I am making the best choices for myself from what I know NOW.[QUOTE=hessalina]Sometimes the point of these FDA "lists" (as well as black box warnings)and the news they generate serve simply to underline the serious side affects of these drugs. They benefit us by making our doctors become more aware of certain symptoms and catching these problems early on.
Libby was diagnosed with melanoma. If this becomes prevalent in those using TNF blockers maybe a regular screening by a dermatologist would become mandatory for those patients. Much like eye exams are for those on plaquenil. That's why I agree with Jas to hold off on these new meds as long as you get relief from the more conventional DMARDS. I reached that point 3 years ago and I have now been on Enbrel 2-1/2 years. I am fully aware of the potential infection and cancer risks (among others). If I developed cancer in a few years would it be worth it? Perhaps not, but for now I am living life to the fullest and I am making the best choices for myself from what I know NOW.[/QUOTE]
Those are some very good points. I've had RA for 9 years now and it wasn't well controlled until I started Rituxan 15 months ago.
I had more concerns about joint damage and heart issues than whether or not down the road I might get cancer. I have major joint damage from all those years of uncontrolled RA , some which can't be repaired at this point. Also, my father who had both RA and Myasthenia Gravis died from a massive heart attack when he was 59.
As of 2007, it is estimated that 1.5 million people had used TNF blockers to treat their RA. Is it worth the risk/benefit?...I can't answer that for anyone but myself. No one can know what meds are going to cause cancer down the line. I do know that RA patients with severe or uncontrolled RA have a much increased risk for Lymphoma.
MY RD and PCP are sticklers for getting regular check-ups (ie...Mammograms and other cancer screening), keeping your weight, blood pressure and cholesteral under control, along with eating a healthy diet and exercising.
I follow their reccomedations and like with every other medical procedure or med, I realize there are no guarantees. I've never had any serious or significant side effect from any of these meds. (I was however allergic to Humira) And while I know some people refuse to use Rituxan because of their concerns about the side effects, it has made a huge difference in my life with RA and brought me oh so close to being in remission..............
Lynn492008-09-08 10:46:21We also don't know how many RA patients might have gotten cancer even if they never took a biologic or even a regular DMARD. People do get cancer. I'm not saying we should take these side effects lightly, but that each person needs to weigh the risks for themselves, including the risks of letting inflammation run rampant in your body creating increased risk for heart attack and stroke.
Anyway, if the FDA report gets people to pay closer attention to the risks and any side effects they notice, then that's a good thing.
Yes
People do get cancer and heart disease.
People with RA are at greater risk for coronary artery (heart) disease and certain cancers with or without treatment.
I spent way too many years without DMARD treatment due to a severe reaction to gold injections. I told my drs that RA won't kill me but that strong drug might. The heart disease and cancers were not a well known connection with RA 20 years ago.
All I can say is that I'm really grateful for the internet, for this forum, and for TNF drugs (I have been on them 9 years now).
Everybody should keep in mind that if a drug or herbal remedy is strong enough to help, it is also strong enough to hurt. Treatment and non-treatment both have risks. And even when you play it safe, you won't get out of this life alive. Take educated risks based on facts and reason, rather than acting or not acting out of fear. That is the best humans can do.
I suppose at 54 I am braver or more willing to take risks with drugs that might help me than I was at age 21. But there are now so many more choices.
marian2008-09-08 13:24:59Ditto Marian. I too am grateful, for the internet and its easy access to information -- in the '70s I had to go to a medical library at a hospital for info on RA; for this forum - diagnosed in my mid-20s, there were no other RAers I could talk to except for those in my doc's waiting room; and for biologics -- for me, enbrel along w/mtx has controlled RA and slowed down further joint damage.
The warnings about these meds makes me more proactive: have annual flu shot and tb test, see RA and primary doc regularly, develop healthier habits -- eating a good diet, managing stress.
I am more comfortable with the decisions about RA meds I've made; I've had four joint replacements and don't relish the thought of more.
I have always said only take the stronger meds; including MTX if you feel you need them. All too often doctors are prescribing these medication right off the bat without even trying the weaker DMARDS. I started on weaker DMARDS and really feel like they bought me a lot of time before having to change to stronger medications. I think Biologics and even MTX are great medications; but I do think that the doctors are pushing some people to take them when they could (maybe) take something less toxic and get pretty good results. It's certainly worth a try.
Hopefully some of our younger friends or those that are just being dx'ed will read this thread and not just accept what ever their doctors put in front of them. I don't believe anyone should be afraid to take theses medications if they have tried other things without success.....but know your options.
Knowledge is power! Learn, learn, learn all you can about RA and the medications used to treat it.
The worst part to me is not that the meds have risks; the worst part is expressed in RAHater's venting thread.....you take the risk, then present with warning signs that are ignored or downplayed; you aren't taken seriously at a time when it means the most.
I saw it happen to my daughter - three years old, on as much or more inj. mtx as many of you adults, coughing her head off and running a high temp. We were sent home because her lungs sounded clear. I know now that listening to that dr. put her life at risk. She did have pneumonia, we found out when we went back to our regular ped.
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