Previous Thread
Next Thread
Print Thread
Enbrel only once/month?
#281067 08/18/18 01:53 PM
Joined: Sep 2017
Posts: 52
M
miaoli Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Sep 2017
Posts: 52
Hey all,

I just had a visit to the rheumatologist on Thursday and asked him about self-pay for biologics. (I live in Taiwan and the insurance won't pay for biologics unless my CRP etc is above a certain threshold and mine continuously comes back normal). The rheumatologist said that I could do Enbrel just once a month since my AS hasn't progressed very far yet (it's a little annoying being told I have a mild case when I'm often in so much pain). I could afford to self pay at once a month but is that enough to do anything? The dosage guides I've read say weekly. The rheumatologist told me he wouldn't actually suggest it but that its may call to start it or not. I just told him "I have read about blood work not necessarily reflecting actual pain levels, and at least in the west I've read its becoming recommended to start biologics as soon as possible". I told him I would think about it. I'm just wondering if once/month would even make a difference. While its much more affordable to self pay here it still isn't cheap and I don't want to spend a ton of money if its not going to do anything.

He also started me on methotrexate 5mg/week so I'm going to see how that goes first. I know that's also a bit lower than a typical dose but holy heck terrible side effects. I took it Thursday night and woke up vomiting Friday morning and spent the whole day feeling like crap.

Summary if you don't feel like reading: Is Enbrel 25mg once/month enough to have any kind of effect/ worth trying?


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Enbrel only once/month?
miaoli #281069 08/18/18 04:24 PM
Joined: Jun 2016
Posts: 634
Likes: 1
W
Registered Visitor
Offline
Registered Visitor
W
Joined: Jun 2016
Posts: 634
Likes: 1
I'm not sure 25mg/month would do much of anything. 50mg/week is the normal dose for an adult. Could you afford 50mg once every two weeks? If you think you could afford that, do a trial for a few months and see if it helps. Note that, at least in the US, Enbrel's manufacturer will supply patients with two free doses per year. You could investigate if that option is available to you in Taiwan as well, which would help offset the cost of the trial.

Re: Enbrel only once/month?
miaoli #281071 08/19/18 01:59 AM
Joined: Sep 2017
Posts: 52
M
miaoli Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Sep 2017
Posts: 52
Thanks, it didn't seem to me like 25mg/month would do much. I don't know if he would be willing to prescribe a more frequent dose or not, like I said be actually said he doesn't think I need a biologic at all but he's leaving it up to me. I will check to see if enbrel has any programs here, I know that when I checked into humira there weren't any patient assistant programs I could find. It is also too expensive to self-pay for. I guess another option is investigating the costs of the other biologics. I was surprised that self-pay enbrel was less than half the cost of humira.


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID
Re: Enbrel only once/month?
miaoli #281084 08/21/18 04:22 AM
Joined: Jun 2014
Posts: 71
C
Registered Visitor
Offline
Registered Visitor
C
Joined: Jun 2014
Posts: 71
I have never heard of an adult being on such a low dose. In fact, my pediatric rheumatologist used to say she even had 4 year olds on 50 mg of Enbrel weekly. The 25 mg dose is used for little kids and it's also given weekly.
And they routinely go higher than 50 mg/week for psoriasis - often it's started at 50 mg twice a week and then tapered to once a week.

Researchers actually believe that antibodies against biologics result from too low levels of the biologic in the blood. Gastroenterologists whom routinely used Humira and Remicade (and other biologics besides Enbrel) actually monitor drug levels to make sure they do not go too low. In Inflammatory Bowel Disease, there is a clear correlation between low drug levels and antibodies (I think the correlation is less clear in rheumatic diseases but it's also less researched).

What I'm trying to say is that by taking Enbrel so infrequently, it may not just not work, but you may be setting yourself up to lose a medication because of antibodies. You'll have a very low level of Enbrel in your blood, and supposedly, that's when your body makes antibodies to the medication.

It is true that you are less likely to make antibodies to Enbrel vs. something like Remicade. But it's still possible. I would try to take the normal FDA approved dose of Enbrel, if you take it at all.

Re: Enbrel only once/month?
miaoli #281119 08/24/18 01:33 PM
Joined: Sep 2017
Posts: 52
M
miaoli Offline OP
Registered Visitor
OP Offline
Registered Visitor
M
Joined: Sep 2017
Posts: 52
Oh wow thanks for that info! I won't mess around with that dosage and discuss my options with him at my follow-up. I've decided to skip my methotrexate for now until I see him again because the side effects were so rough. I will ask him about the injection.


Dec 2016- Persistent feeling of being "off-balance", no true vertigo but feelings of dizziness.
April 2017- Pain started at first in calves, then back (location random), then knees and ankles. All diagnostic testing tried at this point normal.
Sept 2017- First visit to rheumatologist. HLA-B27+, Grade 2 sclerosis on pelvic x-ray, rheumy diagnosed AS.
Nov 2017- Cervical X-ray narrowing b/t vertebrae
Meds: Indomethacin 50mg BID

Moderated by  ElinAslanyan, RyanMiyamoto 

Link Copied to Clipboard
Powered by UBB.threads™ PHP Forum Software 7.7.4