Exactly. Nobody has a clue what price is paid by athletes or any other success for that matter. I deal with a young woman who is a Division 1 volleyball player. I have seen her come into the Student health service for her Remicade in a wheelchair with tears streaming down her face. Between sobs she is dictating a "paper" for one of her classes on her I phone. She of course because of NCAA regulations can't take steroids or pain meds. 2 years ago she had a kidney transplant because of the Granulomas. She has to work out HARD to get the adrenalin levels up so she can maintain some level of pain control. Its a hell of alot more than a "positive attitude," its a positive life style. When she works with other JIA kids at camp, they all want to be like her. NOT ONCE has she ever let her guard down beyond saying how much she looks forward to her infusions and repeating over and over to the kids you deal with what you handed and move on.
In my daughters years including those on the tour I only heard her complain ONCE about the pain. She passed out at the Rolex from, a combination of things, heat the biggest. It was match point against Serena. her complaint as they had her packed in ice, was that she would never be able to say she lost to Serena, but rather that she had to forfeit.
You need to understand these people live as if there was nothing wrong. They may explain circumstances, but even that is a stretch. So while Phils "story" may be weak to some, that is exactly how a pro athlete deals with it. "This is what happened, this is what I did."
I don't begrudge anybody ranting from time to time. But don't compare. We are all different. Your "8" may be somebody elses goal and there "3"
mataribot said:
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?
I did have a life-changing experience with Remicade. I was able to hike, was losing weight, feeling good, and put away all mobility devices. It was wonderful while it lasted. It's amazing what these drugs are capable of, if you can find the right combination and dosage and if your body cooperates. ;)
Thats right. Duplicating experiences doesn't always work out. Between 3 of my kids they each have 7 years of college. One they call "Your Honor" one they call "Coach Dano" and the third you call to fix your lawn mower.
nym said:
I did have a life-changing experience with Remicade. I was able to hike, was losing weight, feeling good, and put away all mobility devices. It was wonderful while it lasted. It's amazing what these drugs are capable of, if you can find the right combination and dosage and if your body cooperates. ;)
I think when you weigh the risks against the benefits it just depends on each person what is really worth it. I want to feel like Phil too ! I still have to watch what a do and how often. It gets really annoying, painful at times still and just a big fat drag that I can't go out and do what I want. Makes me think about all the things I should have done when I had the chance.
Anyway, I agree with Seenie. Know you'll have a good measure of just how much it is helping. I had to go off Enbrel for a few weeks. It's amazing how fast the pain came back. Now even with the pain I do get while on this med, I realize how much it really helps me.
As afraid of the biologics I was for their potential SEs, now that I'm feeling so much better from Enbrel I'm way more afraid of NOT being on it! Yes, life isn't perfect. Someone said on a different thread something to the effect that maybe some of our new pain is a result of feeling better and overdoing it. And, I realized how good I felt the first two months on Enbrel I probably did overdo it and cause my back to act up. It seems like there's a lot of pain now, but it still isn't as bad--or at least it's different--than it used to be, and it's not as depressing.
I am with you 100%.... and I have never felt "painfree" on Enbrel or Humira. Enbrel worked for about 8-9 months, cleared my skin somewhat and decreased some pain but Sed Rate level never went to a decent level. Then onto Humira and I have just stopped the Humira injections because it was failing. Never feeling great, it kept most of my lesions at bay so I was living with it thinnking it was saving my joints too....but I started to get small patches again and then I developed severe foot pain and neck and back pain that has kept me out of work....so it is bad!!!
After complaining about the increase in pain and the numbness in my feet and hands, rheumy referred me to Ortho. who deals with spines...Well, my MRI's showed advanced arthritic changes causing spinal nerve root compression and spinal stenosis consistent withchanges that occur with PsA. . So....my question was Did the Humira do what it was supposed to do??? No one can answer.....I was told by Rheumy " Some medications don't always work"...Really so I was using the Humira for about 8 years for what reason???? Very frustrating.....and I have the very same question as you.....If it's not improving the quality of life should I have continued??? I answer a resounding NO at this point....
Rheumy prescribed a new drug Otezla.....just been on for about a month and I don't feel any better. So question is Will it take all my pain away? Will I have the level of pain I have now and not develop any new pain??? Can't seem to find any answers.
I am really gong to have to think about staying on this drug if I don't get any relief.....
Sorry to be so long winded...I just feel your frustration !!
I wonder if some people need an increased dose. When I started Enbrel it was 50mg twice a week for 3 months, then down to once a week. I'm wondering if I could always have it twice a week it would stop my psoriasis and PsA completely instead of just 75 or 80%. I wonder if the price of it is the reason we just can't be prescribed higher doses?
According to my doc, many of the injectibles aren't as effective for folks who are overweight. I am overweight and that is why he likes infusion meds for those of us who need a higher dose for our weight. Winnie, I am so sorry to hear of your difficulties with Humira. It could be that it slowed the progression but didn't stop it ? Like you, I have so many questions.
Actually you can have it twice a week for psoriasis. Its approved for it.
Grandma J said:
I wonder if some people need an increased dose. When I started Enbrel it was 50mg twice a week for 3 months, then down to once a week. I'm wondering if I could always have it twice a week it would stop my psoriasis and PsA completely instead of just 75 or 80%. I wonder if the price of it is the reason we just can't be prescribed higher doses?
There is no evidence that max dose of Enbrel has statistical significance over the normal does for PsA. However it might help speed up the process of getting rid of psoriasis to a degree. However, once you plateau you may be able to reduce dose.
I’ll say one last thing; your better off keeping some of your psoriasis to prevent the removal of your biologic. Then they make you ROT six months for your psoriasis to recover enough to get your biologic back. Sounds silly, but it’s been happening more and more these days…
Haha! Hmmmm, that's interesting. Well, I don't understand why they don't treat PsA like psoriasis and do the double-dosing for IT for starters! That doesn't make sense to me at all. I lived with psoriasis for almost 40 years before I said enough is enough! If my PsA symptoms hadn't been so bad I would've probably just continued to put up with the psoriasis. And, I had a moderate to severe case of it.
I'm sure studies must show that double-dosing doesn't make a difference for PsA relief. So, I wonder if I show my dermy the residual psoriasis on my legs, will she double the dose again?
tntlamb said:
Actually you can have it twice a week for psoriasis. Its approved for it.
Grandma J said:
I wonder if some people need an increased dose. When I started Enbrel it was 50mg twice a week for 3 months, then down to once a week. I'm wondering if I could always have it twice a week it would stop my psoriasis and PsA completely instead of just 75 or 80%. I wonder if the price of it is the reason we just can't be prescribed higher doses?
In the end, the double dosing doesn’t really matter. The end result is same, the only difference is the double dose gets psoriasis suffers there quicker. Around 6 months or so the drug typically plateaus and you may get a little psoriasis back. I haven’t seen any data that suggests upping the dose helps.
I’ve always given myself 2 injections per week when I was using Enbrel and it was prescribed for severe psoriasis and PsA. I never sent to one injection and I have used it over a period of 6-8 months both times. The Humira I originally started once a week then when the lesions had cleared, I went to once every other week and I did that for about 10 years. Unfortunately it failed a couple months ago.
I recently read an article in the NPF magazine about people developing antibodies to the biologics and this can cause then to fail over time. Did anyone else read this and what do you think? My rheumy said we do but he doesn’t think that is why they fail…anyone else have this experience?
Not yet, but I've only been on a biologic for 6 months. So, Enbrel didn't work real well for you but humira did? That's reassuring--I mean 10 years sounds promising. I'm sure, now that the humira has failed, 10 years doesn't matter, because you're not feeling well.
Is your doctor considering another biologic, as in maybe trying Enbrel again?
WinnieBobinnieBear said:
I've always given myself 2 injections per week when I was using Enbrel and it was prescribed for severe psoriasis and PsA. I never sent to one injection and I have used it over a period of 6-8 months both times. The Humira I originally started once a week then when the lesions had cleared, I went to once every other week and I did that for about 10 years. Unfortunately it failed a couple months ago. I recently read an article in the NPF magazine about people developing antibodies to the biologics and this can cause then to fail over time. Did anyone else read this and what do you think? My rheumy said we do but he doesn't think that is why they fail...anyone else have this experience?
I’ve wondered about the double dosing myself, and I’ve come to this conclusion. The biologics are good money makers for the drug companies. They test extensively to find what the best dose is for each condition that they treat with the bio. Double dosing must be advantageous to skin disease. If studies showed that doubling the dose worked for joint disease, they would certainly recommend that because it would double their profits. Presumably their studies don’t justify doing that.
Yes, The Enbrel initially gave me some clearance of the lesions but then I hit a plateau. My rheumy then changed me to Humira and I cleared completely and felt much better and less stiffness and swelling.
He did try the Enbrel again but my blood worked showed that over the 4 month period my inflammation marker continued to rise and I felt no relief.
The doctor has prescribed "Otezla" it is a relatively new medication that works a little differently by affecting PN6? I have been trying to find more information on it because I am having a hard time understanding how it works. I just like to educate myself on how the medications work so I am not just taking the medication arbitrarily. I like knowing how it is affecting my body and how it changes it.
I am thankful for the 10 years because it gave me the best chance at being lesion free and have less pain when I was raising my boys. I was able to keep up with them, swim, wear shorts, go on outings and not experience the stares. I know they felt them too because they would ask me why people stare and don't ask questions like I taught them to do? Now I have 3 grandchildren and even though I am having trouble playing and walking with them like I want, I can still sit and read to them , giving me time with them.
Grandma J said:
Not yet, but I've only been on a biologic for 6 months. So, Enbrel didn't work real well for you but humira did? That's reassuring--I mean 10 years sounds promising. I'm sure, now that the humira has failed, 10 years doesn't matter, because you're not feeling well.
Is your doctor considering another biologic, as in maybe trying Enbrel again?
WinnieBobinnieBear said:
I've always given myself 2 injections per week when I was using Enbrel and it was prescribed for severe psoriasis and PsA. I never sent to one injection and I have used it over a period of 6-8 months both times. The Humira I originally started once a week then when the lesions had cleared, I went to once every other week and I did that for about 10 years. Unfortunately it failed a couple months ago. I recently read an article in the NPF magazine about people developing antibodies to the biologics and this can cause then to fail over time. Did anyone else read this and what do you think? My rheumy said we do but he doesn't think that is why they fail...anyone else have this experience?
I've wondered about the double dosing myself, and I've come to this conclusion. The biologics are good money makers for the drug companies. They test extensively to find what the best dose is for each condition that they treat with the bio. Double dosing must be advantageous to skin disease. If studies showed that doubling the dose worked for joint disease, they would certainly recommend that because it would double their profits. Presumably their studies don't justify doing that.
The suggested retail price is based loosely on FMV of similar drugs on the market for the disease. Being how the cost to manufacture biologics is high to start with, and if the higher dose isn’t a significant improvement, I could see them not recommend it
I like that about Humira. I had the choice of Enbrel or Humira and I chose Enbrel. Only because shots are more frequent and I thought if I got SEs or caught a "bug" while on it, it would be out of my system faster. But, I'm hearing so much good about Humira--when it works, it really WORKS!