Hi, I am quite new to this site and would welcome any advice or info regarding biologics. I have been on MTX injections for two years, tablets prior to that for a couple of years. My rheumy wanted to add leflunomide as well. Just had MRI scan which has shown inflammation of my spine and now they are checking me for ankylosing spondylitis. had an appt to see my usual rheumy but she was not there and the guy I saw was not very helpful. Told me leflunomide will not work on my spine and they will go down the biologics route. Gave me leaflets on enbrel,humira and simponi and told me to read them and choose which one I wanted to use (I kid you not!!). (I am in UK incidently). He told me to carry on with just MTX and when they have done tests for TB and hepatitis they will then put me on these anti TNF's. He mentioned a link with cancer but did not explain anything and did not even explain what ankylosing spondylitis was. Had heard of it but did not know exactly what it is. Feeling confused, fed-up, in pain and would welcome any advice etc. from anyone out there. You all seem to be very helpful. Thanks.
The brochure thing is very common, These meds cost $40,000/year USD The docs don't want the appearance of a conflict of interest when you go back he is more likley to offer more information
If you are handling MTX even moderately well most docs will leave you on it as it is very helpful with peripheral symptoms and certainly help you through that gap period and dramatically increase the life of the biologics as well as Their effectiveness.
As far as the cancer goes, there were during the clinical trials several incidences reported of a particular type of cancer. 12 years post market studies still haven't provided any link between tnf therapy and cancer. The numbers however still exost. its about 2 per 100,000.
Ankylosing Spondylitis is quite simply (depending on what country you are in) a description of inflammatory arthritis that is primarily spinal in nature and effects the SI joints. Left untreated, inflammation from AS can cause the formation of syndesmophytes (a particular kind of bone spur) that lead to spinal fusion.)
Leflunomide absolutely will not help your spine. Were it me BTW based on comments on these boards, I'd start with Enbrel. And as funny as it may sound it comes out on top in consumers report. The three meds mentioned all do the same thing the only difference being Humira has more effect on Inflammatory issues with the eyes. Unless you have them I have always thought it best to keep that one in reserve.........
Welcome to the site! As I'm sure you're already aware, they have to list off all potential side effects. Here's the basic thing. . . The disease will do far more damage than the "possible" side effects.
In terms of picking a biologic, it's a bit of a crap shoot, and the only way to know what will work is to try it. My doctor was on the fence between Enbrel and Humira for the first one to try, and wound up opting for Enbrel. I'm having a good response to it, so it's a nice start.
You can search the site, but it's reasonable to expect minimal side effects. The most common side effect is infection, but it just means being a bit more cautious. I've been exposed to massive amounts of cooties since I started, and haven't gotten sick at all. Both of my own kids have been sick, the families and the kids that I babysit for have been sick, etc. No problem.
That's a lot to get dumped in your lap at once. Hopefully you can see your regular rheumy for your next appointment, who can explain things a bit better.
Because you are special here the rough draft of an the intro to an article the mod team is working on (we will have specifics on some of the meds later)
Biologic medications target molecules on cells of the immune system, joints, and the products that are secreted in the joints, all of which can cause inflammation and joint destruction. Unlike other medications that treat PsA after it has occurred, biologics attempt to stop it from happening. There are several types of biologics, each of which targets a specific type of molecule involved in this process.
Biologics that bind tumor necrosis factor (TNF) include etanercept, adalimumab, infliximab, certolizumab pegol, and golimumab. These are called anti-TNF agents or TNF inhibitors. There are newer biologics that target other molecules instead of TNF..
Biologics like all the “good meds” put you in the “gap” Some folks start to get immediate results, especially with skin, others take several months. Biologics may be used alone or in combination with other DMARDs (eg, methotrexate), NSAIDs, and/orglucocorticoids (steroids).
All biologic agents must be injected. Some can be injected under the skin by the patient, a family member, or nurse. There are others that must be injected into a vein, which is typically done in a doctor's office or clinic; this takes between one and three hours to complete.
Biologics are perhaps the most controversial medications we take. While most of us who have been around awhile prefer them and frankly as the “gap process” Look forward to the day we can start them because they are so much more pleasant to take with fewer side effects, the internet would lead you to believe otherwise.
When the “right to know” laws were passed back in the 80’s one of the more fortunate or less fortunate depending on your reference outcomes was that every “occurrence” with a medication during clinical trials had to be listed. With the biologics one of those occurrences was an very slight increase over the placebo group in certain types of cancers. Statistically these occurrences could have been classified as “outliers” because of the right to know laws they had to be listed anyway. In 10 years of post market studies, they still have not been able to establish any evidence that the biologics were the cause. These are immuno-suppresent drugs as are many of the meds we take. The best person to discuss these issues with is your physician. He is far more reliable than strangers on the Internet. Millions are taking them and benefiting from them. They simply are too busy enjoying life to spend time in Internet chat rooms informing the world of their “problems”
Arthritis research UK have some good literature -I've tried to put the link through to AS for you, they have lots of good information on the drugs as well which may help you in your choice.
www.arthritisresearchuk.org/system/search-results.aspx?keywords=ankylosing+spondylitits
Lamb and Stoney are right. BTW, when Lamb quotes statistics, you can be sure he’s got them right. He’s a stats kinda guy, our resident expert in all things to do with research.
Although the drugs do sound scary, trust me, the disease is truly something to be feared. I have extensive joint damage (I’ll spare you the details for now, Lamb doesn’t want to hear about it again, LOL). Last week one of our members had a heart attack that her cardiologist said was a direct result of her PsA. There are some threads running right now about eye problems and the risks of not treating them. Things like that, and the terrible damage to quality of life that this disease causes, are much more frightening to me than a very small rise in my chance of getting a cancer. Our mantra here is “Fear the disease, not the drugs”, and with good reason.
Wow!! This site and all the people on it are amazing. Thank you to all of you for your help and advice and information. You have made it much clearer and far less frightening. Thanks especially to TNTLamb for all the info and statistics - it makes sense and you have all helped me to make a decision. It is really nice to have people to talk to who can understand what you are feeling. i get people saying to me all the time "You look so well, I cannot imagine there is anything wrong with you!". thanks again to you all for your advice.
tntlamb said:
The brochure thing is very common, These meds cost $40,000/year USD The docs don't want the appearance of a conflict of interest when you go back he is more likley to offer more information
If you are handling MTX even moderately well most docs will leave you on it as it is very helpful with peripheral symptoms and certainly help you through that gap period and dramatically increase the life of the biologics as well as Their effectiveness.
As far as the cancer goes, there were during the clinical trials several incidences reported of a particular type of cancer. 12 years post market studies still haven't provided any link between tnf therapy and cancer. The numbers however still exost. its about 2 per 100,000.
Ankylosing Spondylitis is quite simply (depending on what country you are in) a description of inflammatory arthritis that is primarily spinal in nature and effects the SI joints. Left untreated, inflammation from AS can cause the formation of syndesmophytes (a particular kind of bone spur) that lead to spinal fusion.)
Leflunomide absolutely will not help your spine. Were it me BTW based on comments on these boards, I'd start with Enbrel. And as funny as it may sound it comes out on top in consumers report. The three meds mentioned all do the same thing the only difference being Humira has more effect on Inflammatory issues with the eyes. Unless you have them I have always thought it best to keep that one in reserve.........