Friday early evening is Enbrel time, and I am feeling like I ran out of it a day or so ago, by Saturday, wow what a difference NO LIMP today!!!!!!!!! Could even shake my behind a little, feel like I am gliding again,!!that is unheard of!! I am in love with Enbrel!!!! Don't forget, I have spondylitis and spinal stenosis, so this is a very big deal for me, just 7 weeks in, in 3 months, I may be dancing again! WOOHOO!! Screw the scooter and the wheel chair, I want to walk, I want to pick up the grandkids, I want to go shopping again, I want to be able to ride in the car, to LIVE!!!!!!!!I want to kick this disease in the teeth!!!!
Hello SK, I am soooo happy for you. I know the feeling. It is amazing how when the pain goes away how ALIVE we feel. As you know I started on Remacaide a few weeks ago. I just had my second infusion. The first one caused some stomach issues. Not the second one. Also after the first one, there was such a big improvement. Even my daughter noticed it. But my elation was short lived as it only lasted a week. This time I was no longer afraid to get the infusion but wishing I was due for another one. So I went this past Thursday. After two days of being wiped out, I once again feel pain free. I have been in pain so long I really did forget what it felt like to be pain free. so just know I am celebrating with you.
SK:
Sooooooooo happy that you feel good again!!!!!!!!!!!! I wanted to ask a question i keep seeing that people have what is spondylitis?
Thanks
Trish
So imagine how good I may feel at 12 weeks, that is the time it takes to get the full effects of the Enbrel. See my blog, 5 kinds of PsA, it will explain Spondylitis. Liz and Bumble are having great things happen from infusions too!
CONGRATULATIONS!!!! I am so happy for you! I can't remember how it feels to be without pain either. What an awsome blessing for you to have this work so quickly you only can go up from here!
WOW, you really are feeling fiiiiiiiiine, aren't you? Wow! I can feel your excitement, it's palpable. I'm so glad for you, Sk! It's like a mini-miracle. I hope it continues and you regain more health and mobility. It's astonishing to hear this, I must say. And so NICE to hear a good story about PsA.
Congrats!
That's truly amazing, Elizabeth! I'm so happy for you and SK. It sounds like some of these meds really are starting to be helpful. It must be WONDERFUL to regain some of your health and vitality again.
PS: Got your message and will respond tomorrow when I'm not so tired...
Elizabeth Rodriquez said:
Hello SK, I am soooo happy for you. I know the feeling. It is amazing how when the pain goes away how ALIVE we feel. As you know I started on Remacaide a few weeks ago. I just had my second infusion. The first one caused some stomach issues. Not the second one. Also after the first one, there was such a big improvement. Even my daughter noticed it. But my elation was short lived as it only lasted a week. This time I was no longer afraid to get the infusion but wishing I was due for another one. So I went this past Thursday. After two days of being wiped out, I once again feel pain free. I have been in pain so long I really did forget what it felt like to be pain free. so just know I am celebrating with you.
Woohoo SK! Congratulations!!!!!! I am soooo excited for you! Here's to living again and enjoying the Grandkids!!!!
That is wonderful news!!! 
To be pain free - wow, it sounds like Enbrel is the wonder drug. You have me excited now too.
Thanks everyone, it's raining today, so not feeling as great as I had been! It just never fails to 'get me'!
Baby steps SK add up, don't they?
trishdett, Spondylitis is one of the forms of PsA that primarily effects the spine. In its latter stages the bones begin to fuse. Although not the most crippling form, it considered the most painful because of the axial involvement.
Anlkylosing Spondylitis (AS) is a rather interesting disease. It really isn't a disease as much as the a condition resulting from a disease.
FWIW there is a pretty large AS community out there and they have a couple of pretty active boards. IMO they are a pretty good place to stay away from. I check in from time to time and even manage to get in a pretty good argument occasionally. Many of the folks don't actually have a diagnoses but rather are self diagnosed. While I don't deny their pain, they are a part of a larger "chronic pain community" that makes it increasingly hard to get good treatment let alone diagnoses because of the natural skepticism. As most of the pain clinics will tell you now, the treatment of chronic pain (especially with pain meds) in and of itself causes more pain.
The reason I stay they are good place to stay away from is because for most many of those folks, treatment doesn't work (Biologicals, DMRDS, NSAID therapy etc) Now whether its because they have a hyper analgesia condition, some for of fibro (although those drugs don't seem to help either) or an undiscovered disease, I don't know. BUT for someone with PsA what happens on those boards is more discouraging than helpful.
Just some numbers over 60% of PsA get relief with NSAIDS, of the 40% that don't about 50% get help with DMRDS. Now it starts to get tricky 60% get help with their FIRST biological, by the time they get to the end of the possibilities, its almost STATISTICALLY shown that nearly 100% get help. (assuming of course they have one of the family of autoimmune diseases)
When folks come to the boards its usually because they are in the "finding something to work" stage. Ther are two problems there. First finding something to work IS art not science and it takes time, sometimes several years after Dx. (each treatment takes time to decide if its having effect then tweaking it ie combining either a DMRD with a biologic, or adding a NSAID, improving the body with PT and exercise that treatment makes possible etc. Now not all docs are artists and we are facing the "NEW" thing in medicine call "evidence base" while it seems like a really good idea (and most of the time it is) - A patient presents with a certain set of symptoms these are the steps... Its saved a lot of lives in the ER (especially women with heart problems) Everyone gets a better response and theoretically better care. The docs are trained with this model rather than the old seat of the pants Dx> The smart docs use this broader knowledge base and couple it with experience (and some gut feelings) to provide better care yet. problem is at least close to half of us have Docs who graduated in the bottom half of their class..... The proble with evidence based medicine is that most of the time it has been used as an economic model. The best treatment with this disease is the most expensive (DUH!) so Insurance companies, Governments etc institute evidence based models as requirement.
Heres the difference. (and my story) I had some heart problems, the doc went through all kinds of gyrations and treatments. I finally ended up in a heart center miles from home for an ablation While I was there the EP doc looked at my legs trying to decide which one to use and noticed I was "Blooming." he started asking some questions etc etc. and finally said that he thought my problems were probably caused by the psoriasis. (yeah right) A couple years late I went into heart failure. (That treatment is brutal you want side effects play with Beta Blockers and Ace inhibitors) Doc said the same thing. Okay NOW they had my attention.
About the same time My son was deployed again and we got my Granddaughter to care for (his wife had passed several years earlier. Anyway the deployment didn't go well.... and we got permanent custody. His paperwork wasn't quite right and moving the girl across state lines with her handicaps permanently got into a real squirting match as she was now on SSI and not tricare. Anyway fighting a legal battle 1000 miles away lead me to take a leave from the university. I was part time so had to pay for medical insurance, not a problem because having success to the U health center a 10 grand deductible made perfect sense. However on leave all had was the major medical. I was in getting some skin cancer burned off and couldn't get off the table (You know when you wish you had zirks in joints and wish someone could bump a little grease in) Anyway I was at the Rheumys office a few days latter.
She poked, prodded took a LONG history of me, my sister, Mom (both had psoriasis and severe problems later on but was never called PsA) and started the list, X-Rays, MRIs, Gene tests etc etc. I looked her dumfounded and said I guess you didn't realize I really don't have insurance..... She at me said "really? That's great news," "I need to get a TB test... I told her I had just had one for the state a week or two ago.) She told me she'd be right back. She was with the "blue Box" (The enbrel start up Kit) (BTW Enbrel has the best assistance program for uninsured)
I asked he about a Dx, and she said it was obvious, if the Enbrel (or another) didn't work, she'd revisit it. I took my first shot in the office, and I swear, I could feel a difference on the way home. By morning my scale was gone. We have done some work since, I have the spodylitis type, I got clearance to go back to golf and I play with a retired neurologist and Ortho who remind me every game if any of the surgeries were worth a hoot, they;d have them.. (although they admit I'll probably need to trade in my shoulders one of these days.
It sad that evidence based medicine improperly applied has someone like Seenie taking drugs that aren't working all that well, but worse have taken away her retirement Job and one of her joys in life. I'd be on every politicos back like flys on S*** were I her.
Bet you never ask another question Trish - sorry, But I do need to rant now and again.....
trishdett said:
SK:
Sooooooooo happy that you feel good again!!!!!!!!!!!! I wanted to ask a question i keep seeing that people have what is spondylitis?
Thanks
Trish
Hi, SK - I'm so happy to hear that you're having success with Enbrel. I know how you feel - kind of like the Tin Man from the Wizard of Oz when he was rusted stiff and all he could say was "Oilcan!" When you find something that works, it's like Dorothy came along with the oil and lubricated your joints so you can run through the field of poppies. There's such a sense of joy and movement!
Unfortunately, Enbrel didn't work for me. I tried it for 3 months and nothing. Tried Remicade for three months, and it was working, but then I had a reaction. Am now on Simponi. I woke up the day after my first injection and couldn't believe it: I could move! I hurried to do everything I had to that day in case it wore off. It's been 2 weeks and it hasn't worn off yet. Am hoping the relief stays.
Hey Tee!
I am so sincerely glad that you had such wonderful success with the Simponi, that drug is not mentioned much on here, so I need to look it up and become more familiar with it. You are so fortunate to have finally found what works for you! I hope it always does. I applaud you for your courage in trying all the ones before it, and not giving up hope or treatment.
I know that I posted that I was not feeling as great today because of the rain, but should have gone on to say that I realize that I will always 'feel' the rain, BUT feel better than I ever have before when it was raining!
I feel I owe it to my son and grandkids to stay on the path with meds, take part in the surveys the drug companies sponsor, giving them all the info I can provide as far as how I benefit from them and to make them aware of any side effects I may be having.
Nice to share your success story!
SK
wow and thank you... and lol yes i will ask more questions just not now thanks again
Trish
tntlamb said:
Baby steps SK add up, don't they?
trishdett, Spondylitis is one of the forms of PsA that primarily effects the spine. In its latter stages the bones begin to fuse. Although not the most crippling form, it considered the most painful because of the axial involvement.
Anlkylosing Spondylitis (AS) is a rather interesting disease. It really isn't a disease as much as the a condition resulting from a disease.
FWIW there is a pretty large AS community out there and they have a couple of pretty active boards. IMO they are a pretty good place to stay away from. I check in from time to time and even manage to get in a pretty good argument occasionally. Many of the folks don't actually have a diagnoses but rather are self diagnosed. While I don't deny their pain, they are a part of a larger "chronic pain community" that makes it increasingly hard to get good treatment let alone diagnoses because of the natural skepticism. As most of the pain clinics will tell you now, the treatment of chronic pain (especially with pain meds) in and of itself causes more pain.
The reason I stay they are good place to stay away from is because for most many of those folks, treatment doesn't work (Biologicals, DMRDS, NSAID therapy etc) Now whether its because they have a hyper analgesia condition, some for of fibro (although those drugs don't seem to help either) or an undiscovered disease, I don't know. BUT for someone with PsA what happens on those boards is more discouraging than helpful.
Just some numbers over 60% of PsA get relief with NSAIDS, of the 40% that don't about 50% get help with DMRDS. Now it starts to get tricky 60% get help with their FIRST biological, by the time they get to the end of the possibilities, its almost STATISTICALLY shown that nearly 100% get help. (assuming of course they have one of the family of autoimmune diseases)
When folks come to the boards its usually because they are in the "finding something to work" stage. Ther are two problems there. First finding something to work IS art not science and it takes time, sometimes several years after Dx. (each treatment takes time to decide if its having effect then tweaking it ie combining either a DMRD with a biologic, or adding a NSAID, improving the body with PT and exercise that treatment makes possible etc. Now not all docs are artists and we are facing the "NEW" thing in medicine call "evidence base" while it seems like a really good idea (and most of the time it is) - A patient presents with a certain set of symptoms these are the steps... Its saved a lot of lives in the ER (especially women with heart problems) Everyone gets a better response and theoretically better care. The docs are trained with this model rather than the old seat of the pants Dx> The smart docs use this broader knowledge base and couple it with experience (and some gut feelings) to provide better care yet. problem is at least close to half of us have Docs who graduated in the bottom half of their class..... The proble with evidence based medicine is that most of the time it has been used as an economic model. The best treatment with this disease is the most expensive (DUH!) so Insurance companies, Governments etc institute evidence based models as requirement.
Heres the difference. (and my story) I had some heart problems, the doc went through all kinds of gyrations and treatments. I finally ended up in a heart center miles from home for an ablation While I was there the EP doc looked at my legs trying to decide which one to use and noticed I was "Blooming." he started asking some questions etc etc. and finally said that he thought my problems were probably caused by the psoriasis. (yeah right) A couple years late I went into heart failure. (That treatment is brutal you want side effects play with Beta Blockers and Ace inhibitors) Doc said the same thing. Okay NOW they had my attention.About the same time My son was deployed again and we got my Granddaughter to care for (his wife had passed several years earlier. Anyway the deployment didn't go well.... and we got permanent custody. His paperwork wasn't quite right and moving the girl across state lines with her handicaps permanently got into a real squirting match as she was now on SSI and not tricare. Anyway fighting a legal battle 1000 miles away lead me to take a leave from the university. I was part time so had to pay for medical insurance, not a problem because having success to the U health center a 10 grand deductible made perfect sense. However on leave all had was the major medical. I was in getting some skin cancer burned off and couldn't get off the table (You know when you wish you had zirks in joints and wish someone could bump a little grease in) Anyway I was at the Rheumys office a few days latter.
She poked, prodded took a LONG history of me, my sister, Mom (both had psoriasis and severe problems later on but was never called PsA) and started the list, X-Rays, MRIs, Gene tests etc etc. I looked her dumfounded and said I guess you didn't realize I really don't have insurance..... She at me said "really? That's great news," "I need to get a TB test... I told her I had just had one for the state a week or two ago.) She told me she'd be right back. She was with the "blue Box" (The enbrel start up Kit) (BTW Enbrel has the best assistance program for uninsured)
I asked he about a Dx, and she said it was obvious, if the Enbrel (or another) didn't work, she'd revisit it. I took my first shot in the office, and I swear, I could feel a difference on the way home. By morning my scale was gone. We have done some work since, I have the spodylitis type, I got clearance to go back to golf and I play with a retired neurologist and Ortho who remind me every game if any of the surgeries were worth a hoot, they;d have them.. (although they admit I'll probably need to trade in my shoulders one of these days.
It sad that evidence based medicine improperly applied has someone like Seenie taking drugs that aren't working all that well, but worse have taken away her retirement Job and one of her joys in life. I'd be on every politicos back like flys on S*** were I her.
Bet you never ask another question Trish - sorry, But I do need to rant now and again.....
trishdett said:SK:
Sooooooooo happy that you feel good again!!!!!!!!!!!! I wanted to ask a question i keep seeing that people have what is spondylitis?
Thanks
Trish
I've taken Enbrel for 6 weeks. How long does it usually take to know if it is going to help?
Hi Yvonne,
I can only speak for myself, but I have recently noticed a pronounced difference on Thursday or Friday, like it is wearing off, I take the shot Friday early evening, and had a great Saturday, however there were no storms that day, so at this point and perhaps always, I will still feel those. Surely there can still be flares.
Enbrel, like the other drugs, state that it takes 3 months to determine if a drug is working, however, some feel a difference right away or before the 3 months. I actually felt it working at the first shot, but it was not pronounced enough to celebrate until this Saturday.
I sincerely wish you the best of results, hope you wake up one day very soon and find your life has changed for the better because of Enbrel, and I hope that remains a success.
Be well, be happy,
SK
Chart those changes. Almost as accurate as the weather, is a little patch of psoriasis on my right knee. The minute that starts to "burn" I know the Enbrel is giving up for the week. It varies (as to when) some but if I react right away, things don't go any further. I'm now about every 5 days to inject. Since I found my "indicator" those "recovery times" are virtually non existent. Yes you can still get flares. I'm in one now. (the only one in about 18 mos.) I had some iriditis about six months ago. These things are pretty easy to respond too.
So you run short too? Do you take more than a 50mg a week shot, or is that as high as the dose goes, lamb? That is the highest I have seen on post or on product info.
Its weird more than 50 mg per week for PsA is off label.....
BUT
you can take 50 mg twice a week for psoriasis. (Have your rheumy speaks to your skin guy if your insurance gives you grief) You just need to have a definite pattern, not pain. Remeber your Rheumys job is to control the disease pain control is a bonus.
Humira can go to weekly with the full dose too. for the same reason, although they are more likely to add MTX before that happens.
NO skin Dr, NO psoriasis, just PsA. can't take MX or SZ. Will find out more end of next month with Rheum, but was curious about the dosing. It is as I thought, but we will see what the superstar Rheum has in mind for me! Could be the stenosis eating this up! Who knows!
Thanks everyone!
tntlamb said:
Its weird more than 50 mg per week for PsA is off label.....
BUT
you can take 50 mg twice a week for psoriasis. (Have your rheumy speaks to your skin guy if your insurance gives you grief) You just need to have a definite pattern, not pain. Remeber your Rheumys job is to control the disease pain control is a bonus.
Humira can go to weekly with the full dose too. for the same reason, although they are more likely to add MTX before that happens.