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Ankylosing spondylitis - Enbrel

Posted , 7 users are following.

Jesobel78
Jesobel78

Hi Im 34 years old diagnosed with as last year after over 10 years of agony with no one listening. Finally I got the diagnosis and my rheumatologist started me on enbrel last Nov. The change was unbelievable. Since then I have put on 21lbs even though I have improved my diet. For the last few weeks pain has been creeping back in and I've started using codrydramol again. I've also started with chest pain (not the as pain I had before in my chest). This has resulted in having ECG and being put on aspirin and statins. I've also had an echocardiogram today as there were minor abnormalities in my ECG. Wanting really to talk to people on enbrel. Have they had any of these side effects? Did the drug stop working as well at any point? Thanks

0 likes, 8 replies

8 Replies

  • emm2
    emm2

    Posted

    hi there im 38 and got my diagnosis about 3 years ago after 7 years of waiting i now to cut a long story short have been on enbrel for the the last 6 months and to be honest havent to me had much sucsess.i havent had any problems taking it but im exhausted all the time and still have alot of pain which has now been made worse by reducing my anti inflams. sorry im not much help but i hope you feel better.
  • debbi0140
    debbi0140

    Posted

    I've been on enbrel for about a year after trying Humaira which had nasty side effects eg, chest pains and my hair falling out in clumps. I didn't think that the enbrel was working that great till I was off of it recently for surgery. After 10 weeks of being off and now on my 3rd week being back on it I can definitely say it is working. I'm still exhausted and takin pain medication even just to make it through the day. I've heard that after being on a bio med that you will have to change it periodically as the body does get "used" to it. Hope that's been sone help and good luck
  • Jesobel78
    Jesobel78

    Posted

    I am absolutely disgusted by this comment there is no cure for this disease and no amount of positive attitude will change that I am reporting your comment and will also be contacting amazon
  • Jesobel78
    Jesobel78

    Posted

    And I've shared your comments on every as support group on Facebook so that everyone else can see that our disease is all about our attitude
  • Emis_Moderator
    Emis_Moderator

    Posted

    I have deleted the comment referred to above and deactivated the user who has been posting throughout the site.

    Regards,

    Alan

  • Jesobel78
    Jesobel78

    Posted

    Thanks Alan it's greatly appreciated as the post rather annoyed me as you could probably tell!
  • Sddsxxs
    Sddsxxs Jesobel78

    Posted

    Hey Jesobel

    Sorry this response is so late but I myself was on embrel and Indomethacin for about 4 1/2 years.  Sometimes it did feel like the shot wasn't working.  If you have any chest pains towards the end of the week before your about to take embrel you should stay clear from embrel until the pain is gone.  I too thought for a long time that Embrel was unbelievable and I settled on the fact that i would have to take it the rest of my life.  I got tired of the the flare ups even while taking embrel and indomethacin.  I since have been off embrel for about 4 months and changed my complete diet.  Today just 4 months on the diet and 4 months off embrel i feel way better then any day i felt with embrel and I think in just a few months i would be completely free (why didn't i do this before =().  Its rare to run into people with AS but one of my best friends went through it before i did.  I was diagnosed at 29 while he was diagnosed at 21.  Today he eats anything he wants, drinks anything he wants.  He also decided one day to change his diet and if you saw him today you would not belive that he once could barely walk.  I would not call it a cure but remission is just as good enough for me. 

    I was really bad for years and i could not turn my neck or lean over.  I had a hard time sleeping and my jaws locked up all the time.  I felt like i had needles everyday running through my body.  I started a new diet by doing a little research and taking bits and pieces from other people and making my own diet.  I dont know if it will work for you but I would think its worth a try? 

    Snacks: 

    Greek yorgurt with 1 1/2 table spoon of flaxseeds.2 times a day

    Blueberry when i want fruit

    White Rice cakes fried in seaseme oil, topped with Honey and Kimchi (< my fav snack)

    orange juice

    white rice wrapped in seaweek. sometimes with tuna

    drinks:  water 8-10 cups a day of water

                  orange juice which i listed

                  barley tea ( they say not to eat barley but it doesn't effect me at all

                  actually it makes me feel better )

    lunch and dinner

                 gluten free 7 grain wheat bread toast with tuna

                 mackerel

                 porridge

                 grass feed meat and vegetables

                 jasmine white rice

                 lots of side dishes from the korean market

                 look up kimchi chige its yummy and has everything you need

    i continue to add stuff and my marker is about 6 hours.  if i dont have any flare ups within 6 hours then i add it to my list to eat. 

    i dont take any medication but i do take 4 pills of omega 3 a daily.

    2 months ago carried my 8 month old baby boy up diamond head with no rest and zero pain during and after so that will tell you how much better i'm feeling today.  if you have any questions feel free to ask.  i have been through almost all medications and honestly nothing comes close to changing my diet and how i feel today. my="" fav="" snack)="" orange="" juice="" white="" rice="" wrapped="" in="" seaweek.="" sometimes="" with="" tuna="" drinks: ="" water="" 8-10="" cups="" a="" day="" of="" water=""              ="" orange="" juice="" which="" i="" listed=""              ="" barley="" tea="" (="" they="" say="" not="" to="" eat="" barley="" but="" it="" doesn't="" effect="" me="" at="" all=""              ="" actually="" it="" makes="" me="" feel="" better="" )="" lunch="" and="" dinner=""             ="" gluten="" free="" 7="" grain="" wheat="" bread="" toast="" with="" tuna=""             ="" mackerel=""             ="" porridge=""             ="" grass="" feed="" meat="" and="" vegetables=""             ="" jasmine="" white="" rice=""             ="" lots="" of="" side="" dishes="" from="" the="" korean="" market=""             ="" look="" up="" kimchi="" chige="" its="" yummy="" and="" has="" everything="" you="" need="" i="" continue="" to="" add="" stuff="" and="" my="" marker="" is="" about="" 6="" hours. ="" if="" i="" dont="" have="" any="" flare="" ups="" within="" 6="" hours="" then="" i="" add="" it="" to="" my="" list="" to="" eat. ="" i="" dont="" take="" any="" medication="" but="" i="" do="" take="" 4="" pills="" of="" omega="" 3="" a="" daily.="" 2="" months="" ago="" carried="" my="" 8="" month="" old="" baby="" boy="" up="" diamond="" head="" with="" no="" rest="" and="" zero="" pain="" during="" and="" after="" so="" that="" will="" tell="" you="" how="" much="" better="" i'm="" feeling="" today. ="" if="" you="" have="" any="" questions="" feel="" free="" to="" ask. ="" i="" have="" been="" through="" almost="" all="" medications="" and="" honestly="" nothing="" comes="" close="" to="" changing="" my="" diet="" and="" how="" i="" feel="">

    orange juice

    white rice wrapped in seaweek. sometimes with tuna

    drinks:  water 8-10 cups a day of water

                  orange juice which i listed

                  barley tea ( they say not to eat barley but it doesn't effect me at all

                  actually it makes me feel better )

    lunch and dinner

                 gluten free 7 grain wheat bread toast with tuna

                 mackerel

                 porridge

                 grass feed meat and vegetables

                 jasmine white rice

                 lots of side dishes from the korean market

                 look up kimchi chige its yummy and has everything you need

    i continue to add stuff and my marker is about 6 hours.  if i dont have any flare ups within 6 hours then i add it to my list to eat. 

    i dont take any medication but i do take 4 pills of omega 3 a daily.

    2 months ago carried my 8 month old baby boy up diamond head with no rest and zero pain during and after so that will tell you how much better i'm feeling today.  if you have any questions feel free to ask.  i have been through almost all medications and honestly nothing comes close to changing my diet and how i feel today.>

    • tim411
      tim411 Sddsxxs

      Posted

      Hi Sddsxxs,

      I am 25 and have been diasnosed with AS roughly 1.5 years ago (been taking an NSAID everyday since) but have had pain for the last 7 odd years. I want to get off the NSAID knowing the long term implications and have briefly tested the no-starch diet which has worked to an extent (although I believe I need to try it for a lot longer) For E.G if I went starch free for 5 days I would get no flares but still have an ache all over my body and resport back to the NSAID.

      My question is, how long until you were pain free? the difficult part is coming to work trying to be on the diet as I feel the lack of energy (especially being in sales) -

      My second question is you mention your friend is now able to eat anything, can you please elaborate?

      Any information would be greatly helpful.

      Regards,

      Tim

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