This is my rant. If I am going to take a risky biologic, I want to feel like Phil Mickelson and the other people on biologic commercials. I can't imagine walking peppily through an airport or playing 18 holes of golf ! I want to be one of those people who really, really feels a difference on my medication. I want something to work as well as prednisone !
I am getting ready to back on Humira, which has been the only biologic that has helped at all, but it really didn't help much. If I were to estimate, I would say that Humira put me in the ACR 20 category.
Do the risks outweigh the benefits if the benefits don't seem to be improving my quality of life ? Are they doing something, behind the scenes, that are prolonging my chances of living or really preventing joint damage ?
ME TOO! And while we are at it, I want to be rich like Phil as well.
So if you go back on Humira, now that you’ve gone through your own personal “dark age”, you will have a better idea of what it is doing for you and you will be able to make a decision about whether it’s worth taking.
As for the risks of anti-TNF therapy, if you read the research, the risks are quite favourable compared to those of other medications. Unless you are a teenage boy witih Crohn’s. All treatments, including taking tylenol and the likes, carry risks. Enbrel and Humira were amongst the first therapies, and now (about 15 years in) have a solid safety record.
For me, it boils down to quality of life vs risks. I am not bounding through airports or perfecting my golf swing, but my greatly-improved quality of life on Enbrel is well worth the finite risk it comes with. Only I can make that determination, as only you cn make your decision.
Sorry you’re in a rantin’ kinda mood, Mimi, but ranting here is good. Makes the rest of us think things through as well. Thanks.
I hope you are right ! I think I read, somewhere, that you can get better traction the second time around. I may have posted a link on here about it...
I want that too Mimi! I had a brief stretch of good with Enbrel, and then had to miss two weeks in August for minor surgery. That was August. I had a flare right after, which didn't shock me. What has surprised me is that the biologic has not gone back to working particularly well, and I'll be having a discussion about a possible switch with my rheumy next month. So frustrating. I just assumed that when I went on a biologic that all would be good in the world, and it's not.
Life isn't perfect for Phil either. He has gone through a few flares the last few years that has cost him hundreds of thousands in appearance fees. Withdrawl from tournaments, cancelled appearences etc
I can not imagine the pain he must be in on a daily basis. Two of my kids were pro athletes. One football you would expect pain, the other tennis where it was incredible. In any event he is sincerce in what the meds have done for him. Every dime he makes for endorsements plus more goes to several foundations to help patients.
How do you know this, Lamb? I wish I could read or hear him talk about how things REALLY are. I hate it for him if he is feeling crappy, but all of those ads for biologics just piss me off right now.
I'm sorry Stoney :( What do you think you would switch for the Enbrel? Stoney said:
I want that too Mimi! I had a brief stretch of good with Enbrel, and then had to miss two weeks in August for minor surgery. That was August. I had a flare right after, which didn't shock me. What has surprised me is that the biologic has not gone back to working particularly well, and I'll be having a discussion about a possible switch with my rheumy next month. So frustrating. I just assumed that when I went on a biologic that all would be good in the world, and it's not.
So, Mimi, you didn't go from bedridden to building playgrounds and squeezing oranges two minutes after starting your biologic? Maddening, isn't it? Just don't hurt yourself hurling shoes at the television.
I have also wondered what the real story on Mickelsen is. He could become a voice for a lot of people by being upfront about living with PsA, but the Enbrel people might not like the truth so much. When the ACR considers a 20%improvement a success, it's a little discouraging. I wonder, for myself, if the thousands my insurance company is spending on biologics for me is worth the gain I'm getting from them.
Stoney, I'm having the same issue with an interrupted biologic. I had to be off it for four weeks for surgery. Been back on for almost four months, and it's not as good as it was. It had really kicked in just as I had to stop it, five months after first starting it. I was hopeful that it wouldn't take another five months to get to where I was.
Sybil, count your blessings that the UK doesn't allow pharmaceutical ads. They are on television constantly, run three-page spreads in all types of magazines, full-page ads in the national newspapers. They are indeed nauseating, and there seem to be more every week.
Mimi- I think that humira was probably next on the list. I keep thinking I should call my rheumy, but at this point I just have a few more weeks. I go in every three months.
Phil is a very active ambassador for the arthritis association, as am I. Coming out as he has has potentially cost him more in endorsement and sponsorships than you might imagine. You can figure some of it out here.: http://www.oncoursewithphil.com He danced a bit about withdrawing from the British open a few yesrs ago.
Thousands of folks have had their lives returned, thousands more have finally sought treatment. Do I wish I was pain free and return to what I was doing 25 years ago you bet. Don't honestly know much about drug commercials. What little TV I watch is all DVR, so I don't ever see them. I can see where they might frustrate some, while giving hope to others.
Funny thing about playgrounds though, The ambassadors and teen JIA group just worked on one for the new Ronald McDonald house, so it does happen. The real story on Phil is what you see. He plays when exhausted, in pain, and works out several hours everyday. As he has said there were times he couldn’t get out of bed. The other person worth listening to is Venus Williams.
The adrenaline, the rush. I played in a football game with a fracture skull and a broken ribs. Afterwards it was a trip to the ER and significant amount morphine.
Some athletes cheat and use drugs during games, but that is the minority. There are others players who cut years off their lives playing with diseases.
Can you imagine being diabetic and playing football? How can you keep your BS level eating 15k per day and probably burning that much a game?
In part answer to a bit of your question - is it helping if you are barely making ACR20 - obviously everyone is different and there is no real way to answer that definitively for you, but if you look at the article below, it looks like for one of the biologics at least, there is significantly less joint damage in complete non-responders.
I've seen the OnCourseWithPhil website and I think it is wonderful that he is a spokesperson and philanthropist, however, my point is that while he pushes through the pain to play golf, etc, many of us simply can't and therein lies the rub. The commercials give some of us the impression that we will be able to do that, and that was my original point.
I want to feel good enough to soldier through 18 holes of golf or a tennis tourney and as it is I can barely make it through my day at my part time job. A short trip to the grocery is a monumental task.
I want to feel as good as Venus and Phil. Even if that is crappy but able to win tennis or golf tourneys. Rant over :)
Jen, that is the kind of information I was hoping to find. Now if I could find something similar with a PsA patient instead of an RA patient with Humira instead of Infliximab, I would be getting excited about now.
sybil said:
That's so interesting Jen, guess it helps answer this question that many of us must ask ourselves at some point.
Jen said:
In part answer to a bit of your question - is it helping if you are barely making ACR20 - obviously everyone is different and there is no real way to answer that definitively for you, but if you look at the article below, it looks like for one of the biologics at least, there is significantly less joint damage in complete non-responders.
I know I am strong ! As much as I whine ( This IS the rant board, right?) I have been able to plunge the depths of perseverance, patience and longsuffering and I have survived. I have even thrived in some ways. I have reinvented my life and discovered that I was born to be an artist. I would have never had the courage to pursue my artwork full time had it not been for PsA. However, I am struggling through making truly informed decisions about treatment. I really, really need to know that there is peer reviewed evidence to suggest a significant benefit to taking a biologic when I don't feel like Phil or those people on the ads.
I am emotionally processing what seems to be a future where I am not really going to feel like playing 18 holes of golf no matter how determined I am to suck it up and do it through steely determination.
Can I get an Amen from anyone ? Help a sista out, y'all ?
Thanks for listening :)
Louise said:
So, Mimi, you didn't go from bedridden to building playgrounds and squeezing oranges two minutes after starting your biologic? Maddening, isn't it? Just don't hurt yourself hurling shoes at the television.
I have also wondered what the real story on Mickelsen is. He could become a voice for a lot of people by being upfront about living with PsA, but the Enbrel people might not like the truth so much. When the ACR considers a 20%improvement a success, it's a little discouraging. I wonder, for myself, if the thousands my insurance company is spending on biologics for me is worth the gain I'm getting from them.
Stoney, I'm having the same issue with an interrupted biologic. I had to be off it for four weeks for surgery. Been back on for almost four months, and it's not as good as it was. It had really kicked in just as I had to stop it, five months after first starting it. I was hopeful that it wouldn't take another five months to get to where I was.
Sybil, count your blessings that the UK doesn't allow pharmaceutical ads. They are on television constantly, run three-page spreads in all types of magazines, full-page ads in the national newspapers. They are indeed nauseating, and there seem to be more every week.
Right this moment I am heartily sick of it all. I do not want to have to 'suck it up' or 'push through' ...... it makes me (******* insert any 'unhappy' expletive/description of your choice *******) to have to do everything with pain. And the pain sucks away any possible enjoyment anyway.
One hour of gentle walking Christmas shopping was all I could manage last week before I couldn't walk another step. And I hasten to add that this is with a biologic that is helping, a bit. The best 'bit' is that I can sit around doing nothing without any pain.
I raise a seasonal glass to emotional processing.
mimiB said:
......... I am emotionally processing what seems to be a future where I am not really going to feel like playing 18 holes of golf no matter how determined I am to suck it up and do it through steely determination.
Can I get an Amen from anyone ? Help a sista out, y'all ?
Mimi, that article is a keeper! I’m not a religious person either, and it really struck a chord with me, especially at this time of the year. How about making a separate post of it?