I'd love your job sixcat! I should have gone in to law (or law enforcement!).
On the dad front mine died 32 years ago but I "lost" him a bit before that to a new wife when I became surplus to requirements!
Gonzo, as far as bio's are concerned I'm at the point where I have to live TODAY. Tomorrow I'll worry about when it arrives. I lost both my parents when they were young - mother 43 (I've lived another 10 years than her so far) and my father at 58 (five to go!) .... neither cancer or PsA. There are no guarantees. Period!
The only concern is when that progression turns to symptoms...........
Everyone progresses ....
I have come to think like this, but haven't been able to articulate it. We do have a degenerative disease but bones are tough things, people are tough things too. A joint can cause discomfort, it may not work as well as it did ..... we compensate, we accommodate it, we try to ignore it. There comes a time when just a fraction more damage is the straw that breaks the camel's back, then it's a whole different ball game.
I'm glad I was floored by this disease initially because I know what it can do & how it can make me feel. If I'd seen the drugs in a primarily 'preventative' light rather than as the way to feel better as quickly as possible they might have been that bit harder to take. But knowing what I know now, I certainly would take them.
A recent Cochrane review[ sought to identify risk estimates of adverse effects associated with biologics, including anti-TNF therapies, anakinra, tocilizumab, abatacept, and rituximab. The authors found no statistically significant difference between biologics and controls. There is not many drugs you can say that with. Cochrane only reviews studies. This one involved 50,000+ patients. IF you promise to read the WHOLE STUDY and not just draw a conclusion from the conclusion ( in the abstracts, I think you will find it interesting:
My mom was diagnosed with PsA about fifteen years after damage started in her fingers. The damage wa already done to her fingers, and likely played a role in some of her other joint surgeries. She was started on Enbrel and methotrexate about two years ago, and was surprised to discover just how much of her pain was inflammatory in nature and not the result of aging (she just turned 71). The good news is that she can still benefit from aggressive treatment. But the damage is done to her hands.
Both of us have done very well on the combination of a DMARD and a biologic. While it doesnāt stop damage for me, it significantly slows it.
Thatās really interesting about you and your Mom, especially discovering the degree to which her pain was caused by inflammation. The trouble with prevention is you canāt be sure of what might have happened without it. Iām most grateful that my back continues to be pain free.
Which brings me to another point: I had been unable to exercise for a good ten years, largely because of terrible fatigue. After a year on Enbrel, I felt well enough that I wanted to exercise again, and I started to work with a physiotherapist. The biologic has enabled me to become fitter and stronger, so I guess we should offset the small risks of side effects with the benefits of being able to exercise.
A clarification here: in this discussion we have been talking about āside effectsā, by which we mean serious risks or consequences, like leukemia or non-melanoma skin cancers. We arenāt talking about nuisance side effects like the nausea of methotrexate, or the headaches that people get with some of the other DMARDS. Those kinds of nuisance side effects are very rare indeed with the biologic therapies.
That's a good point, Seenie, I forgot to make.....I've never had any side effects from Enbrel. The first few injections caused a 2" pink blotch at the injection site, but no pain whatsoever. I'm pretty sure SEs from the biologics are very rare.
I think this is a great discussion. I wonder what its originator is thinking?
GonzoPsa, I like the way you are dealing with things, clearly you're a facts person but you also admit your fears and lay them on the line for discussion. I can't read through this thread without thinking of your previous discussion about disease progression, they fit together.
As you point out, I consider myself a "facts person", and the very *last* place I typically go for facts are internet discussion forums (there is just so much mis-information out there!). But I've also come to recognize that finding broad-based, practical information on PsA is not easy. I was quite glad to have stumbled upon this site and was impressed with how much has been shared and how willing the group here is to answer very specific questions from total strangers. It wasn't until I've spent a fair amount of time cross-referencing some feedback here with other sources that I've been able to truly accept that a lot of the information and opinions here are really quite valid. Even then, there is so much passion here for certain approaches that I couldnāt help wondering if there is any alternative motive (e.g. do the pharmaceutical companies pay the moderators here to steer people to biologics so they can make more profit?). I finally asked that question directly, and was quite relived to find that it is absolutely not true.
This particular thread has been especially illuminating for me. I can see more clearly now how the treatment for my PsA has been shaped, in large part, by how willing (or unwilling) I have been to try things with my rheumatologist. Iām normally quite proud of myself as a good self-advocate (I believe in doing the least necessary to get a good outcome most of the time, so typically resist any aggressive treatment), but in this case, I probably havenāt been doing myself any big favors because Iāve excluded a whole line of potential treatment.
I want to assure you that your stories and information has been heard, and are deeply appreciated. I am convinced that biologics are the best choice for me now. Iām sure Iāll find a way to make that happen, but itās all a matter of logistics now.
The issue Iām wrestling with at this point is āhow can I afford this?ā. Iām currently covered by a high-deductible health plan with minimal prescription coverage. So I have to decide whether the potential to function better and protect myself is worth draining my retirement on. I may be able to switch insurance plans down the road, but in the US we are only allowed to do that once a year (and I just missed that window).
Both Humira and Enbrel have a copay program that are extremely easy to deal with. Humira is the easiest and most consistent. Basically all you need do is go online or call the 800 number and they will put you into their copay program. From that point forward you pay a 5 dollar copay. Enbrel has multiple plans but are similar. The others do as well, but I don't have any experience with them. Frankly for me the financial relief when I went to the biologics was immense.
Heres my two cents worth based on my experience, UNLESS you have eye involvement or gut involvement, I'd start with Enbrel. Its the easiest to inject (less painful etc) and because of the weekly dosing schedule gives steadier results PLUS if you have any P make sure that is in the diagnostic code. Two reasons. You have to demonstrate less "step therapy" you don't have to go through the NSAID regimes and very little of the DMARDS (if you are already taking MTX your in) Not only that BUT you get twice weekly dosing initially and can throughout the life of the drug.... The other reason is Biologics simply quit working. The reason is debatable but they do. That's why you want to hold humira in reserve. It is effective for eye issues and gut issues. IF you have burned through Humira when Enbrel would have worked you options are more limited.
The other thing I would tell you is avoid Remicaid. Its a great drug BUT it is the only one easily obtained under medicare. Part D coverage really sucks for those of us using biologics but Remicaid is covered by part B. You will find a few (not many) Rheumys who try to use it as soon in the process as they can. These guys own their own infusion centers it is the only time and way a Doc can make money off what he prescribes.
Keep that in BTW the docs can not and do not make any money off of prescriptions they write. Most won't even meet with the reps anymore as they can face jail time if caught.
The expense of biologics is IMO another internet myth perpetuated by the vitamin/supplement quacks right along with the cancer myth.
GonzoPsa, I mistrusted the moderators at first, too! (I admire your honesty in telling them that so early on!) But, I also thought my doctor was pushing meds because he was getting a "cut" out of it! I came to totally trust my rheumy and the moderators, though. Tntlamb is extremely knowledgeable and is pretty much an encyclopedia or Wikipedia of PsA information for us, which you already noticed, I'm sure!
I was going to tell you about Enbrel Support, but he beat me to it. The cost for my Enbrel is around $3,700.00 a month (4 sureclick injectors!), but I only pay $10 of that. I also have a high deductible insurance plan. If/when you go on Enbrel or Humira, whichever one you choose (my dermatologist gave me a choice) the doctor should offer you information on signing up for the support program.
Sometimes I think I so overpromote Enbrel that people might think I'm bought off! I'd like to be! I would like to make big money doing an Enbrel commercial--I only wish they'd "discover" me.....I've bragged about it so much, like calling it miraculous and a godsend and a lifesaver! :-)
GonzoPsa said:
Hi Sybil,
As you point out, I consider myself a "facts person", and the very *last* place I typically go for facts are internet discussion forums (there is just so much mis-information out there!). But I've also come to recognize that finding broad-based, practical information on PsA is not easy. I was quite glad to have stumbled upon this site and was impressed with how much has been shared and how willing the group here is to answer very specific questions from total strangers. It wasn't until I've spent a fair amount of time cross-referencing some feedback here with other sources that I've been able to truly accept that a lot of the information and opinions here are really quite valid. Even then, there is so much passion here for certain approaches that I couldnāt help wondering if there is any alternative motive (e.g. do the pharmaceutical companies pay the moderators here to steer people to biologics so they can make more profit?). I finally asked that question directly, and was quite relived to find that it is absolutely not true.
This particular thread has been especially illuminating for me. I can see more clearly now how the treatment for my PsA has been shaped, in large part, by how willing (or unwilling) I have been to try things with my rheumatologist. Iām normally quite proud of myself as a good self-advocate (I believe in doing the least necessary to get a good outcome most of the time, so typically resist any aggressive treatment), but in this case, I probably havenāt been doing myself any big favors because Iāve excluded a whole line of potential treatment.
I want to assure you that your stories and information has been heard, and are deeply appreciated. I am convinced that biologics are the best choice for me now. Iām sure Iāll find a way to make that happen, but itās all a matter of logistics now.
The issue Iām wrestling with at this point is āhow can I afford this?ā. Iām currently covered by a high-deductible health plan with minimal prescription coverage. So I have to decide whether the potential to function better and protect myself is worth draining my retirement on. I may be able to switch insurance plans down the road, but in the US we are only allowed to do that once a year (and I just missed that window).
Oh my! $3700 a month is much much more than I expected (and I was expecting a big price tag!). I've checked out the Enbrel website and it looks like their co-pay program is based on household income. Is that based off of tax returns or some other basis? If via tax returns, that puts me in a pickle. I started a new software business last year whereby the company gets paid up front by customers and then we pay 3rd parties for data over the course of the year. We have to pay taxes on that "up front" money (even though most of it will ultimately go to 3rd parties), but it appears that my income level is much higher than it actually is. (Things will even out and look more normal on my next tax return). The bottom line is that my tax records probably won't qualify me for the co-pay assist this year. Do I have any recourse?
I didnāt realize income was a factor. I never had to disclose our income when I signed up for Enbrel Support. Search Enbrel Support and see what info pops up. My husband and I had a decent income when I started Enbrel and we werenāt denied. Let us know how it goesā¦
I'll admit to being frustrated by the high cost of the biologics and went into total "denial" mode. I haven't really done much recently to look into this more (other than wait for my upcoming appointment with the rheumatologist). Instead, I've been focusing a planning a trip to Europe (to meet up with my son who is doing his own hiking trip there) and crossing that time off my bucket list. Whenever I think about starting biologics and the effect it will have on my retirement savings, etc., I just feel angry/frustrated, so it feels better to just wait and see what the rheumatologist recommends in a few months.