Hi, I am starting Enbrel next week (on MTX injections now). Just wondered if anyone out these may have any advice about how long it takes to work, if it works, side effects etc. Was very wary when starting MTX and feel pretty much the same about Enbrel. Have deteriorated in the last year and now have been diagnosed with AS as well as Psa. Does it get any better or is it all down hill, feeling abit down as you can probably tell. thanks for any help.
Hey Tasha,
When I started Enbrel it was like magic. I felt results from it almost immediately. I don't mean dramatic, no pain, everything is sunshine and lollipops right away, but rather immediately I started to feel some relief and lessening of symptoms. I also experienced absolutely NO side effects.
Remember, though, that everyone is different and we each have differing responses to medications. Finally, do NOT fear this drug. Fear the PsA and the AS. Good luck with that first shot--take it out of the fridge first and leave it on the counter. It will sting less!
Get it clear with your doc whether they are separate Diagnoses or you have the Spondylitis form of PsA or if you have psoriasis with AS. The approach is much different (not med wise) in terms of Physical Therapy and the diseases progress differently as well. If the meds are going to work, they work when the work. It takes up to 6 mos. although some have felt a difference on the way home.
FWIW, well of 90% of folks live normal (mostly) productive lives. of those who don't its estimated better than half could if they were willing to put forth the effort to fight the disease.
Hi janeatiu,
Thanks for your quick response. Had heard it is best to take out of fridge 30mins before, so hope it works for me, will let you know.
janeatiu said:
Hey Tasha,
When I started Enbrel it was like magic. I felt results from it almost immediately. I don't mean dramatic, no pain, everything is sunshine and lollipops right away, but rather immediately I started to feel some relief and lessening of symptoms. I also experienced absolutely NO side effects.
Remember, though, that everyone is different and we each have differing responses to medications. Finally, do NOT fear this drug. Fear the PsA and the AS. Good luck with that first shot--take it out of the fridge first and leave it on the counter. It will sting less!
Thanks for your help, I have had Psa for 10 years and now have AS, 2 different diagnoses as far as I am aware. Hope they work quickly. Thanks again.
tntlamb said:
Get it clear with your doc whether they are separate Diagnoses or you have the Spondylitis form of PsA or if you have psoriasis with AS. The approach is much different (not med wise) in terms of Physical Therapy and the diseases progress differently as well. If the meds are going to work, they work when the work. It takes up to 6 mos. although some have felt a difference on the way home.
FWIW, well of 90% of folks live normal (mostly) productive lives. of those who don't its estimated better than half could if they were willing to put forth the effort to fight the disease.
THAT just makes me crazy....... Ten years of NOT treating PsA (NSAIDs is not treatment nor are DMARD meds - they are palliative) and they finally get around to treating it after it has progressed to the point you have radiologic evidence of permanent damage. There is NO FREAKING EXCUSE for that kind of piss poor medical treatment. Now that the rant is over, If it is AS, you are likely in the window where the Biologics will stop progression and if its progressed PsA, you likely will have tremendous response when you get the right combo. In the meantime get some very specific stretches and PT for those SIs and don't miss a day (or several times a day) What doesn't move rusts, and with AS what rusts fuses. You are going to be fine
Tasha said:
Thanks for your help, I have had Psa for 10 years and now have AS, 2 different diagnoses as far as I am aware. Hope they work quickly. Thanks again.
tntlamb said:Get it clear with your doc whether they are separate Diagnoses or you have the Spondylitis form of PsA or if you have psoriasis with AS. The approach is much different (not med wise) in terms of Physical Therapy and the diseases progress differently as well. If the meds are going to work, they work when the work. It takes up to 6 mos. although some have felt a difference on the way home.
FWIW, well of 90% of folks live normal (mostly) productive lives. of those who don't its estimated better than half could if they were willing to put forth the effort to fight the disease.
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In hindsight, I have had PsA for about twenty years (undiagnosed and mis-diagnosed). After unsuccessful trials of all of the DMARDs, I started Enbrel. My first glimmers of hope (not great improvement, just little surges of energy) came almost right away. I knew it was doing something, but it took about six months before I could say I honestly felt better. The very slow improvement continued for another three months or so after that. So the better part of a year, and VERY gradual improvement. Now, after almost 18 months, I feel better than I have in, oh, about twenty years. No word of a lie: more energy, less pain, depression greatly improved, blood pressure better.
We are lucky to be living in the age that we do: it doesn’t have to be all downhill! Enbrel has truly been life-changing for me: feeling better, mentally and physically, I can now do things that I haven’t done for years, and success starts to build on itself.
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That sounds fantastic, I hope it does the same for me. I get quite depressed sometimes when i am unable to do things and my husband, who is 16 years older, is bouncing about like a spring chicken and he is 77!!
Seenie said:
In hindsight, I have had PsA for about twenty years (undiagnosed and mis-diagnosed). After unsuccessful trials of all of the DMARDs, I started Enbrel. My first glimmers of hope (not great improvement, just little surges of energy) came almost right away. I knew it was doing something, but it took about six months before I could say I honestly felt better. The very slow improvement continued for another three months or so after that. So the better part of a year, and VERY gradual improvement. Now, after almost 18 months, I feel better than I have in, oh, about twenty years. No word of a lie: more energy, less pain, depression greatly improved, blood pressure better.
We are lucky to be living in the age that we do: it doesn't have to be all downhill! Enbrel has truly been life-changing for me: feeling better, mentally and physically, I can now do things that I haven't done for years, and success starts to build on itself.
Oh thank you! It ,makes me feel better just knowing that there are people out there who understand. I know I need to keep mobile, everything does seem to cease up and they have alreay found that there is some fusing of the spine so I will take your advice. Thank you for your help and advice.
tntlamb said:
THAT just makes me crazy....... Ten years of NOT treating PsA (NSAIDs is not treatment nor are DMARD meds - they are palliative) and they finally get around to treating it after it has progressed to the point you have radiologic evidence of permanent damage. There is NO FREAKING EXCUSE for that kind of piss poor medical treatment. Now that the rant is over, If it is AS, you are likely in the window where the Biologics will stop progression and if its progressed PsA, you likely will have tremendous response when you get the right combo. In the meantime get some very specific stretches and PT for those SIs and don't miss a day (or several times a day) What doesn't move rusts, and with AS what rusts fuses. You are going to be fine
Tasha said:
Thanks for your help, I have had Psa for 10 years and now have AS, 2 different diagnoses as far as I am aware. Hope they work quickly. Thanks again.
tntlamb said:Get it clear with your doc whether they are separate Diagnoses or you have the Spondylitis form of PsA or if you have psoriasis with AS. The approach is much different (not med wise) in terms of Physical Therapy and the diseases progress differently as well. If the meds are going to work, they work when the work. It takes up to 6 mos. although some have felt a difference on the way home.
FWIW, well of 90% of folks live normal (mostly) productive lives. of those who don't its estimated better than half could if they were willing to put forth the effort to fight the disease.
Hi Tasha! Well, we are the same age (I turned 61 today!) and a lot the same in that we didn't go on a biologic right away. Oh, my doc tried pushing it on me, but I was afraid. I can tell you now that I've been on Enbrel for 2+ months I feel 1,000 times better. There are quite a few of us who had no or very minimal side effects. I have spine damage and AS, so I've been dealing with some nasty back pain lately. But, since the Enbrel is working so well, I don't have all the other stiffness and fatigue, so it's easier to deal with the back pain. I keep saying once we get my back feeling better, I'll feel like $1,000,000 !!! I haven't felt that good in so many years I can't remember what normal feels like! I'm sure everyone with PsA can relate!
I'm like janeatiu--the first shot made a difference--and my psoriasis is almost gone, too. Also, I don't take any DMARDS.
Good luck! Keep us posted!
Hi Grandma J, Everyone is so helpful on this site! After these responses I am almost looking forward to starting Enbrel. Was a bit concerned about the cancer side but if it means I can get my life back, (cannot remember what that is like!) it will be marvellous. So pleased it has helped you and hope it will ne the same for me. Side effects seem to be much less than Mtx so here goes and will let all you kind people know how I get on. Thank you!
Grandma J said:
Hi Tasha! Well, we are the same age (I turned 61 today!) and a lot the same in that we didn't go on a biologic right away. Oh, my doc tried pushing it on me, but I was afraid. I can tell you now that I've been on Enbrel for 2+ months I feel 1,000 times better. There are quite a few of us who had no or very minimal side effects. I have spine damage and AS, so I've been dealing with some nasty back pain lately. But, since the Enbrel is working so well, I don't have all the other stiffness and fatigue, so it's easier to deal with the back pain. I keep saying once we get my back feeling better, I'll feel like $1,000,000 !!! I haven't felt that good in so many years I can't remember what normal feels like! I'm sure everyone with PsA can relate!
I'm like janeatiu--the first shot made a difference--and my psoriasis is almost gone, too. Also, I don't take any DMARDS.
Good luck! Keep us posted!
There is no cancer slde, except drama queens on the internet who sadly suck others in and worse put them off from treatment. Now if you were a teenage boy with Chrons disease, there is slightly higher risk. Haven't met one yet who didn't take the med in heartbeat. Its single digits per tens of thousands. There is a higher risk of cancer with RA to begin with.
Tasha, some people will quote the 2006 study which suggested a triple increase in cancer risk for biologics users. If you read the fine print on that one, three times a very small risk is still a very small risk. For me, the quality of life question would trump the cancer risk question, hands down, even if the increased risk were significant. But it’s not. Unless, like tntlamb says, you are a teenage boy with Crohn’s.
As for side efffects, these medications (which I refer to as “designer meds”) are so carefully engineered and targeted in their action that they almost never have side effects. The most likely side effect is a site reaction – like a large bug bite where you injected. A non-event, really. For some of us, the worst side effect is financial, which won’t be a problem in the UK.
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Hi Tasha, I'm in the UK too. I'm now on my second biologic, Simponi, after Humira didn't work for me. I think the only two side effects I've ever had from either bio was feeling a bit flu-like for a day after my first Simponi injection and I had a bit of a teeny-weeny pin prick site reaction last month because I rushed the injection and made a bit of a dogs dinner of it. That compares to a whole host of constant unpleasantness with the DMARDS not to mention what the PsA itself does.
I take a blood pressure medication which has a proven increased cancer risk but without it death from a heart attack or stroke is pretty likely. I try not to worry about things which 'might' happen as a result of any of the medications, I want and need to live now and live as well as I can. Fear is only False Expectation Appearing Real (I think that comes from Feel The Fear, But Do It Anyway by Susan Jeffers).
Wishing you good luck with the Enbrel. It may take a few weeks to kick in but it could be sooner .... it was for me with the Simponi.
Hi Jules, Thanks for your reply. I have been reasonably OK with Dmards apart from infections, chest infections and pneumonia, not reasonably OK I suppose. The pneumonia was the frightening thing, I was in hospital for a week. But you are right, I need to live now and try not to worry about the future, and if it works as well for me as it has for some of the epople who have replied then that will be great. Thanks a lot for your help!
Jules said:
Hi Tasha, I'm in the UK too. I'm now on my second biologic, Simponi, after Humira didn't work for me. I think the only two side effects I've ever had from either bio was feeling a bit flu-like for a day after my first Simponi injection and I had a bit of a teeny-weeny pin prick site reaction last month because I rushed the injection and made a bit of a dogs dinner of it. That compares to a whole host of constant unpleasantness with the DMARDS not to mention what the PsA itself does.
I take a blood pressure medication which has a proven increased cancer risk but without it death from a heart attack or stroke is pretty likely. I try not to worry about things which 'might' happen as a result of any of the medications, I want and need to live now and live as well as I can. Fear is only False Expectation Appearing Real (I think that comes from Feel The Fear, But Do It Anyway by Susan Jeffers).
Wishing you good luck with the Enbrel. It may take a few weeks to kick in but it could be sooner .... it was for me with the Simponi.
Thank you again, I think the hospital just feel they have to tell you everything so you cannot come back at them. I love the way tntlamb tells it how it is!!!
Seenie said:
Tasha, some people will quote the 2006 study which suggested a triple increase in cancer risk for biologics users. If you read the fine print on that one, three times a very small risk is still a very small risk. For me, the quality of life question would trump the cancer risk question, hands down, even if the increased risk were significant. But it's not. Unless, like tntlamb says, you are a teenage boy with Crohn's.
As for side efffects, these medications (which I refer to as "designer meds") are so carefully engineered and targeted in their action that they almost never have side effects. The most likely side effect is a site reaction -- like a large bug bite where you injected. A non-event, really. For some of us, the worst side effect is financial, which won't be a problem in the UK.
My Enbrel 2x/week is actually working so well I'm increasing the days between shots now. Today I'll give my shot and its been 5 days and I feel good. At the end of this month my dose is changing to 1x/week, so I thought I should start stretching doses out a bit to get my body accustomed to less Enbrel. That way I'll have a few extra injections always on hand in case there's a delayed shipment.
Can't wait to hear how you do. If you don't like needles, there's the"Sureclick" injectors. They're a breeze!
My dose is once a week and although I am not overkeen on injecting myself, I inject mtx so I am used to it. It is just having to do 2 injections a week. But I am told Mtx is going over to a pen, which my Rheumy nurse showed me, but I really struggled to use the demo because my hands are bad, the syringe was easier for me to manipulate.
Grandma J said:
My Enbrel 2x/week is actually working so well I'm increasing the days between shots now. Today I'll give my shot and its been 5 days and I feel good. At the end of this month my dose is changing to 1x/week, so I thought I should start stretching doses out a bit to get my body accustomed to less Enbrel. That way I'll have a few extra injections always on hand in case there's a delayed shipment.
Can't wait to hear how you do. If you don't like needles, there's the"Sureclick" injectors. They're a breeze!
I am new here but I am really scared to start Enbrel. I am a smoker so the cancer chance might increase with Enbrel, so don’t know if I should start it?
Hi Tasha. Funny - I’m looking at Enbrel too (hopefully) so it was nice to see your post, and timely. I have booked with my family doc to get the TB test (RA had told me I needed this done before I could apply for Enbrel) My hubby is 12 yrs older then me too. Hoping you do amazing on it!