Hello Everyone! I need some help. To get to the heart of the matter, I do not think that Embrel is working well for me. But to be honest I am not sure what it I should expect from this med? That is why I have been trying to wait it out in hopes my pain will resolve but I have pain in all my joints. It started after I weaned myself off Prednisone. I was so excited to be off as I had gained so much weight (I have now lost 17lbs. in 2 weeks!) and was having so many side effects including diabetes. I cannot take anti-inflammatories because I am on a blood thinner too. So my options are very small. Could someone who is on Embrel tell me if they too have pain and stiffness in their joints? I do not have the swelling I used to have so that is good. But, it is hard to move because I am sooo stiff. Would appreciate your answers. And, I wish you all the best. Susan Lee
i have a few question for you
1. how long have you been the enbrel?
2.as far as your pain - how bad from 1 to 10?
3. what kind of routine do you have?
4. do you eat a lot of carbs?
Thanks for answering! Here are my answers...
1. I have been on Enbrel for 7 months!
2. When it hits all my joints I would say an 8. But it is the stiffness that is really hard.
3. Good routine...busy lady but rest each afternoon for a short time...good life...eager to keep going!
4. No I do not eat a lot of carbs because I am trying to loose weight
How long have you had RA? Did you have the same problem? I would like to know more about you, too! Susan Lee
Hi Susan,
I have been on Enbrel since July; I also take Cyclosporin and currently have weaned my pred down to 2mg. I have no stiffness and no pain apart from my shoulder, which I think is due to the pressure I put on it on a daily basis (carrying a bag of heavy books around all day and writing a lot) - even that is not terrible, I'd give it a pain rating of 4 compared to what I was used to. I am concerned that the Enbrel does not seem to working on its own for you, do you take anything else with it? Could you bear a low maintenance dose of Pred if it helped?
Best,
Moonie
Hi Moonie...Thanks for answering. I think you are getting more out of the Embrel than I am. I have read that not all of us react to the meds in the same way. I am going to see my Rheumatologist soon but I wanted to know how Embrel is working for others. Seems most have to be on a pain med too. Something I rarely do. And no...I have made up my mind not to take anymore Prednisone. I have taken it off and on for almost 30 years and I have finally said "no more". But my question is...is Embrel really working if you still have pain in all your joints? It is so expensive that I sometimes wonder if I am waisting money? But then I remember how bad it was before when my feet were so swollen and painful that I could hardly walk. So I guess it is helping. Hope you are having a good day! Susan Lee
Susan Lee,
I am not getting much from Enbrel either. I have been on it for 3 months and I do not feel any better. Like you, constant stiffness/ joint pain. Only now it is worse than before. My inflammation is also down but not helping with the stiffness/pain, even using Celebrex for the OA and more Tramadol that I have ever taken before. I will be seeing my RA doctor this Tuesday and I expect to get some answers as to why this is not working. I bet, I will have to go on another helper drug and also take the Enbrel 2 times a week oppose to once a week. I will let you know what I was told and what we will be doing different. Don't stop taking it, I tried that and the outcome was not pleasant but definitely make sure your Doctor knows exactly what is going on with you and tell him/her that you want to try something else with it to see if you can get better results.
Hang in there, Susan Lee...It will get better. We have to keep believing that.
Toni
Well being from the UK I don't have to pay for my medications, but I can guess that it must be an additional factor to consider if you are not happy with the drug. I would certainly mention your feelings to your rheumatologist; they may just prescribe a different biologic. My RD seems quite surprised at how I have benefited from Enbrel as I am quite a severe case, he had even sorted everything out for me to try Kineret next! Just goes to show that because something works for one, doesn't mean it will work for everyone else and vica versa. I also can understand your feelings about Prednisone, having been on it for 10 years I'm hoping to wean off it completely too. I hope you get sorted soon, but stick with it in the meantime,
Take care,
Moonie
Susan;
1. are you taking a companion med with enbrel like mtx or arava?
2. which arthritis do you have.
3. when does the stiffnes start in the morning, or after you have sat down for awhile and then go to get up.
I have been on enbrel for over 7 months now,but my enbrel is with a companion drug and that has made me almost virtually pain free. There are programs out there that can help you get your enbrel for a much lower price or even for free. For stiffness I find I get stiff in the joints after I sit for awhile so I had to learn to get up and move around some, if I don't do that I can end up hobbling for a few hours or more. check the website under waddles post for help for paying less on meds and this is suppose to be another www.ppax.org hope this helps. meme
Thanks Moonie for caring. I am so happy to hear that Embrel works for you! Please keep in touch. It is wonderful to hear good news!
Thanks Meme...I will certainly stick with it until I see the doctor. As for the companion drug, I cannot take Mtx because I have trouble breathing and trouble with my liver enzymes. And, I cannot take anti-inflammatories because I am on a blood thinner. But maybe the doctor will have another idea. I have the utmost confidence in him. Thanks also for the website. I am not worried about the cost of the meds if it helps! I just don't want to waist the money if it isn't doing its job! Know what I mean?
Take care everyone and have a good evening! Susan Lee
Susan Lee, Is Arava a blood thinner? I know that is an alternative to mtx with Enbrel. Sounds like a change in biologic may be a good idea. I think I have better results with my Enbrel than you and I have not been on it for more than six weeks with low dose mtx. I have read many posts from people who were not successful on one biologic, tried another, and SHAZAM - SUCCESS. Wishing you some magic.