I returned to Enbrel because I have been on every biologic drug, methotrexate and prednisone and have not had relief. I took Enbrel 8 years ago and after it worked I wondered why I was giving myself the shots. I had no inflamation and my psoraisis was 99 % clear. I am hoping for similar results this time.
I am sorry to have to say, but once we are into PsA, we in it for life. All these meds do is to attempt to slow down the course of the disease. There is no cure so far, and only your body will determine which meds work and for how long.
I just posted before reading your comments. My post was basically who has knowledge of Enbrel and Methotrexate. I have been on Enbrel for about 2.5 years and the psoriasis is coming back, the Arthritis is still in check though. Before the Enbrel I was also on Humira, which lasted just over 2 years before the psoriasis came back. In both cases the arthritis stayed under control, no real issues with my joints at all. I believe that I will soon be looking for another replacement. Best of luck mate, my concern now is that soon I will be starting a new career in Real Estate, I don't think psoriasis on my hands will help in an already competitive market.
Hi Philly and Michael....I got put on Remicade on 3/2011....did Enbrel 3 yrs/Humira 5 yrs/Rituxan 1 yr....then i got the pustular psoriasis (palms-soles) and skin doc put me on double Enbrel 100Mg a week. And it didn't work on peelings. Always on Mtx, except last yr, when i was off of it for 3 months..Fatty liver is way better now, so back on Mtx
Remicade, Mtx, Celebrex i am taking now, along with 4 mg folic, to help the liver...peelings are way way better now!
tkrlady,
You are the first person that I know of that was given more than 50 mg a week of Enbrel, unless I missed a post. I am curious if they would give that amount to someone who only had the Arthritis, not the psoriasis. I surely feel like I run out of Enblel about 2 days before the shot is due. Probably not yet, today was my 12th shot. Guess I will find out next week.
Wishing you all WELL,
SK
My PsA is an aggressive one. I have been sick for only 6 years. Diagnosiswise, only 4.
Psoriasis flares come and go and can be hidden. Not every person with psoriasis gets the arthritis. I got the arthritis part only, but my nephew got the skin disease. Relax.
Hi Sk!...Do you do Enbrel, twice week, at 25mg each shot?
sorry not that computer saavy, but this is from Enbrel site, scroll down to bottom
it says adult PSO?..i have to look that up!...2 50mg a week for 3 months
now thats what skin doctor prescribed for me, but i got lost in the system..I stopped going to skin doc, and let rheumy handle it
Switched rheummies, and by that time, i had been on that double dose Enbrel for about 14 months i think...I told her the new rheummy, could i go back on enbrel, she went and got a copy of enbrel recomendations, for the psoriatric...3 months for 2, 50mg of enbrel...it was great on my joints, but wasn't helping the peelings like Remicade..The old rheummy should have known it's only recommended for 3 months that starting dose of 100mg.
He didn't want to believe it was psoriasis, kept saying ezcema..and made the skin doctor make the call.
Glad i changed rheummies!
HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use Enbrel
safely and effectively. See full prescribing information for Enbrel.
Enbrel
® (etanercept)
Solution for Subcutaneous Use
Initial U.S. Approval: 1998
WARNINGS:
SERIOUS INFECTIONS AND MALIGNANCIES
See full prescribing information for complete boxed warning.
SERIOUS INFECTIONS
Increased risk of serious infections leading to hospitalization or
death, including tuberculosis (TB), bacterial sepsis, invasive fungal
infections (such as histoplasmosis), and infections due to other
opportunistic pathogens. (5.1)
Enbrel should be discontinued if a patient develops a serious
infection or sepsis during treatment. (5.1)
Perform test for latent TB; if positive, start treatment for TB prior
to starting Enbrel. (5.1)
Monitor all patients for active TB during treatment, even if initial
latent TB test is negative. (5.1)
MALIGNANCIES
Lymphoma and other malignancies, some fatal, have been reported
in children and adolescent patients treated with TNF blockers,
including Enbrel. (5.3)
----------------------------RECENT MAJOR CHANGES--------------------------
Boxed Warning 09/2011
Dosage and Administration, Monitoring to Assess Safety (2.5) 09/2011
Warnings and Precautions, Serious Infections (5.1) 09/2011
Warnings and Precautions, Malignancies (5.3) 02/2011
----------------------------INDICATIONS AND USAGE---------------------------
Enbrel is a tumor necrosis factor (TNF) blocker indicated for the treatment of:
Rheumatoid Arthritis (RA) (1.1)
Polyarticular Juvenile Idiopathic Arthritis (JIA) in patients aged 2 years
or older (1.2)
Psoriatic Arthritis (PsA) (1.3)
Ankylosing Spondylitis (AS) (1.4)
Plaque Psoriasis (PsO) (1.5)
----------------------DOSAGE AND ADMINISTRATION-----------------------
Enbrel is administered by subcutaneous injection.
Adult RA and PsA (2.1)
50 mg once weekly with or without methotrexate (MTX)
AS (2.1)
50 mg once weekly
Adult PsO (2.2)
50 mg twice weekly for 3 months, followed by 50 mg once weekly
JIA (2.3)
0.8 mg/kg weekly, with a maximum of 50 mg per week
I currently get a shot every 3 - 4 days, 8 (50mg) injections per month. My Dermy upt the dose once the weekly dose started to show signs of regression. 12 shots is about 3 months, I'm assuming they gave you a double dose to start. You may be right, it could be too early to up the dose. I'm actually going to ask if I can take 2 doses on the same day per week..that would be 100mg in one shot per week, instaed of 50mg over 3-4 day intervals. I will keep you posted.
SK said:
tkrlady,
You are the first person that I know of that was given more than 50 mg a week of Enbrel, unless I missed a post. I am curious if they would give that amount to someone who only had the Arthritis, not the psoriasis. I surely feel like I run out of Enblel about 2 days before the shot is due. Probably not yet, today was my 12th shot. Guess I will find out next week.
Wishing you all WELL,
SK
Michael, i did the 50 mg shots, twice a week, never 2... 50mg shots in one day...was probably something like tuesday and saturday
I injected on sides of stoamch...thighs always got a big bruise for me
I looked it up..PsO probably means psoriatric arthopathy
Hi Lady, and Michael,
I take 1 shot a week of 50 mg. No high dose to start, just at 50 mg once a week, the whole way. PsO, it looks like you are right, with arthopathy. Looking at it would almost make you thing Psoriasis and Osteoarthritis, but I think you are correct.
I know for sure the Enbrel is not helping the severe wrist pain, never did figure out what that was about, but am learning that it is a common problem with Lupus, they still suspect SLE. Talked to one young gal who was actually dx with Lupus by wrist pain, and another one that said she was given Rituzan and it really helped her wrists. I will hopefully know more on Friday. When the wrist pain exceeds the back pain...
These Rheumatologists surely have their hands full with us, especially with ones like me with so many, hard to tell what is causing what.
Wishing you all a good weekend, a PAINFREE ONE!
SK
tkrlady said:
Hi Sk!...Do you do Enbrel, twice week, at 25mg each shot?
sorry not that computer saavy, but this is from Enbrel site, scroll down to bottom
it says adult PSO?..i have to look that up!...2 50mg a week for 3 months
now thats what skin doctor prescribed for me, but i got lost in the system..I stopped going to skin doc, and let rheumy handle it
Switched rheummies, and by that time, i had been on that double dose Enbrel for about 14 months i think...I told her the new rheummy, could i go back on enbrel, she went and got a copy of enbrel recomendations, for the psoriatric...3 months for 2, 50mg of enbrel...it was great on my joints, but wasn't helping the peelings like Remicade..The old rheummy should have known it's only recommended for 3 months that starting dose of 100mg.
He didn't want to believe it was psoriasis, kept saying ezcema..and made the skin doctor make the call.
Glad i changed rheummies!
HIGHLIGHTS OF PRESCRIBING INFORMATION
These highlights do not include all the information needed to use Enbrel
safely and effectively. See full prescribing information for Enbrel.
Enbrel
® (etanercept)
Solution for Subcutaneous Use
Initial U.S. Approval: 1998
WARNINGS:
SERIOUS INFECTIONS AND MALIGNANCIES
See full prescribing information for complete boxed warning.
SERIOUS INFECTIONS
Increased risk of serious infections leading to hospitalization or
death, including tuberculosis (TB), bacterial sepsis, invasive fungal
infections (such as histoplasmosis), and infections due to other
opportunistic pathogens. (5.1)
Enbrel should be discontinued if a patient develops a serious
infection or sepsis during treatment. (5.1)
Perform test for latent TB; if positive, start treatment for TB prior
to starting Enbrel. (5.1)
Monitor all patients for active TB during treatment, even if initial
latent TB test is negative. (5.1)
MALIGNANCIES
Lymphoma and other malignancies, some fatal, have been reported
in children and adolescent patients treated with TNF blockers,
including Enbrel. (5.3)
----------------------------RECENT MAJOR CHANGES--------------------------
Boxed Warning 09/2011
Dosage and Administration, Monitoring to Assess Safety (2.5) 09/2011
Warnings and Precautions, Serious Infections (5.1) 09/2011
Warnings and Precautions, Malignancies (5.3) 02/2011
----------------------------INDICATIONS AND USAGE---------------------------
Enbrel is a tumor necrosis factor (TNF) blocker indicated for the treatment of:
Rheumatoid Arthritis (RA) (1.1)
Polyarticular Juvenile Idiopathic Arthritis (JIA) in patients aged 2 years
or older (1.2)
Psoriatic Arthritis (PsA) (1.3)
Ankylosing Spondylitis (AS) (1.4)
Plaque Psoriasis (PsO) (1.5)
----------------------DOSAGE AND ADMINISTRATION-----------------------
Enbrel is administered by subcutaneous injection.
Adult RA and PsA (2.1)
50 mg once weekly with or without methotrexate (MTX)
AS (2.1)
50 mg once weekly
Adult PsO (2.2)
50 mg twice weekly for 3 months, followed by 50 mg once weekly
JIA (2.3)
0.8 mg/kg weekly, with a maximum of 50 mg per week
I would like to state right from the start. I have no idea what I'm talking about.
That said and out of the way, now my theory.
I think after a while, your body gets use to a drug and finds away around it. I think that is the case with Enbrel. Here is the direct quote from their website:
ENBREL was shown to be effective in about 50% of psoriatic arthritis patients who used it. Clinical responses were apparent at the time of the first visit (4 weeks) and were maintained through 6 months of therapy.
I maybe totally wrong, but my guess is that after 6 months, Enbrel started to be ineffective to some of the patients after six months. I really don't think changing your injection site or changing the injection day is going to confuse things up. So why would the Enbrel support line suggest that? Well, there is this little 5 letter word "MONEY". If they get you to stay on it a little longer then they will get more money out of you or your insurance. Think about it. It cost between $1,000.00-$1,800.00 a month (depending on who you ask). Hey if I were a Pharmaceutical Company, I would want you to stay on it forever. It's not going to hurt them if they can get you to keep trying it for as long as possible.
I hate to say this, but I am curious to see what Phil Mickelson(the pro golfer) will do when he has to switch drugs.
Philly said:
Thanks tntlamb, I already change the dosing site from the top of one leg to the other, but I can go back to the stomach where I used to put the humira. I can also change the day easily. I might move it forward it a day, so that I get it slightly more often. Certainly worth a try. I don't think I can actually increase the dose though, but I can ask my Dr.
tntlamb said:I thought it was losing the "punch" called Enbrel folks and they said, it wasn't so much that (although it was possible) as much as the immune system getting complacent. Their recommendation was to up the dose for a few months and change the dosing site, time/day, etc. as it may confuse things enough to get going..... (probably not hard as it doesn't take much to confuse the rest of me anyway)
Visiting with my Doc, I learned from her that one of the more difficult things she deals with is reluctance to change Biologicals because of fear the new one won't work as well as the old one..... (She didn't have any answers)
Hi MajorFlake,
I think the 6 months is just how long they funded the initial study so that they could get approval for the drug. I suspect it is not worth their while to study long term effectiveness. I don't know if they even keep any statistics on long term use. I get your point that it is in their interests to keep us on it for as long as possible. I have had a pretty good run on it and I have no complaints about Enbrel, but as you say, I think my body is finding ways around it now. That said I am going to start taking it a bit more often, maybe every six days and change the injection sites to see if that helps. The longer I get effective relief though it the better as far as I am concerned.
Enbrel asked me to take part in their research, by answering questions regarding my progress, I agreed. This past Friday marked my 3 months, no word, no call, no e-mail as yet. Wonder when they contact you?
OBTW, have not had one single severe muscle attack since I began the Enbrel, hope it stays that way!
I think changing the injection site would be a good idea, just to give that part of the body a break from all the injections. I don't know if changing the site to make the drug more effective is true, but I believe changing the site after a couple of months is not a bad idea. That said, I wouldn't be surprised if a site becomes less effective after long periods of injections. It doesn't hurt to try, I'm going to pay more attention to see if there is a little improvement, its tough, because we get good spells and bad, and in the past I have not looked at that connection. Thanks for all the replies....brilliant stuff
Agreed Michael, I will also add to you that I am always better in the summer, Winters are very bad on me. So that is when the true test will take place!