does anyone here use enbrel for their RA? I am wondering how it is working for you. I had to switch from methotrexate due to hair loss. Anyone else with similar symptoms?

Hi Louie
I dont actually have experience of the drugs myself but know others' that do take enbrel and have been amazed by the improvement in their disease. Im sure other people will post messages who are on enbrel Goodluck and keep posting your progress.
wenXXX.

Hi Louie,

I have taken methotrexate and lost my hair and my liver count went sky high so they took me off it, I have taken sulphasalazine and leflunomide all with severe side effects, and my rheumatologist is seeing me in November to discuss enbrel, or remecaid, but dont know if I will get it due to strict pct guidelines here in Britain. I have heard people say that they tried all the other drugs, with no joy, and then went on to enbrel and felt absolutely brilliant again. If you do get on it and the results are good, keep us all informed. The best thing for my arthritis was methotrexate, but it didnt do the rest of me any good!! Good luck hope you feel good soon.

Ronnie :)

Hello,

I have been on Enbrel since June of 2006 & it has worked extremely well for my RA with just two exceptions.

Why do I hear so much about all these other RA medications that are being prescribed to patients for RA with SO MANY horrible side effects. Why are these Dr's starting with them? I'm just wondering. Because My first visit to my Rheumatopogist which I waited 10 months to get in to see started me right out on Enbrel in 2006 with all the posative labs. Does it all depend on a person's insurance?

1) It does absolutely no good & has no effect at all for Osteoarthritis. I have severe OA just about everywhere & had a TKR 6/07, so I have chronic pain 24/7 & have to live on pain meds 24/7. I have Diabetes & my TKR didn't have the best outcome so far but I can walk at least.

2) I can't be in the sun at all while taking enbrel. This is just how my body is with the drug because many people don't have this problem. Even with high SF sunscrean & wearing a hat all the time just 10 min of standing in the sun I would get sun poisoning (itchy blisters on my skin that was exposed). Dr took me off it for the summer because it could be life threatening. It was horrible not being on it Enbrel but also real horrible with constantly getting sun poisoning. I had no problems the summer of 2006.
I haven't spoke to my Rheumy about next year yet, but I do know I have to have something to replace it.

take Care

the cost of enbrel is 1800 per month for 8 little shots. that is why methotrexate is used first. if your hair does not fall out then you stay on the cheapest med there is whis is methotrexate.

Ive taken methotrexate which didnt help, instead all it did was have me throwing up & constant diahrea which ultimately i started bleeding from rectum
They put me on enbrel & well i will say it got my sed rate from 60 to 27 im still in alot of pain..

Also the enbrel made me burn up real bad when i went to the pool even using a 60 spf, but if i stop taking it my sed rate goes up so i guess its better then nothing

gl

Thanks Louie for letting me know why the other drugs are used first...

Venusrose,
I was never on any of the other drugs like the other posters have been on. My Rheumy went strait to Enbrel because of the complications of the other meds & it helped a lot I had real good insurance. I've been on Enbrel 1 1/2 yrs now & it's absolutely wonderful.

The reason for my post to you is to tell you that to get the full effects of Enbrel it may take 2-3 mo to get into your system. My Rheumy warned me of this when I started & asked me to be patient, it took about 2 1/2 mo for me. Just beware, for some people (includes me) Being in the sun too long while on enbrel can be life threatening. Be sure to talk to your Rheumy about this since you had that experience at the pool.

i have been on embrel over two years was good for me so i thought,no flares but recently my hair has started falling out,now have very bad alopecia,has very bad flushes at night and can just about walk,i thought it was supposed to slow down the deformity,infact im having an ankle replacement next monday,as my joints are so swollen.i had noticed sometimes my sinuses hurt,after injecting the embrel,but i am off it now for the surgery and am bedridden,so what do you do,methotrexate nearly killed me,i think that there is not enough research done before giving this drug,but then i need something to make life better.i am just 5o and my mobility is awfull,i blame the embrel,anyone has similar problems.

I am so sry you are going through this, my heart goes out to you
I hope that after your surgery that it will get a lil easier for you to bare & that maybe with the physical therapy after surgery that will help

take care & please keep us updated

your in my prayers

Hi Everyone Iv been on Embrel for over 2 years and i thought it was supposed to be the best drug slowed down deformity well i must tell you all iv just had to have a total ankle replacement due to Rheumatoid arthritis,I have had this disease for 16 years and have coped up until Feb this year my walking was getting bad i had a slight limp and the pain across the top of my foot was awfull, i was on embrel 25mg at first then 5omgs a week one injection,things got so bad i saw the specialist in March referred me to a orhapedic surgeon in july i saw him and said either a fusion or replacement was my answer,i agreed to a replacement which they say gives you more movement and was told no more pain and anyway i had surgery 5th november.Whilst waiting for this idiscovered in May that i was loosing my hair and slowly had 2 big patches,at the side and the back i saw a Dermatologist and he confirmed it must be the drug,stress or something.i have had some stress like everyone,worrying about the op,but had to stop embrel 3 weeks before surgery.i am still without embrel,and guess what my hair has started coming back slowly so it seems to be Embrel is no good for me anyway,and my hands defomity isnt so bad so i am considering coming off altogether,one thing im angry for is they tell u its a drug to stop deformity so how does that wwork when i have had to have a ankle replacement,do these docters really know enough about Embrel,there are so many side effects as you know,but every person is different,thats all i can say,just discuss it thoroughly with your reumatologist,i did try Methatrexate but was very sick had to come off after a week,its hard i know but im sure now embrel is not for me. By the way i am just 50

Hi 2 weeks after the surgery im still without embrel cant believe that im doing so well no bad flares and i admit im doing a lot of resting but normally mornings is a big problem for me with the arthritis,i am just going to see if i can survive without it,as i said my hair is beginning to grow back.

I just realized that Enbrel comes with some complications i thought were raare. I had been on methotrexate. My hair fell out and I had a rash for a week. My d. switched me to Enbrel. Now I have some leisions in places I would n ot normally even think to look at. You must check your body every where. Even your genetils. If I had not had an itch there, I would not have found this issue. The results are not good. the dr. said the meds come with some complications that are usually rare. So check ladies and gentlemen. If you find a reddish brown spot, tell the dr. immeidatly because if u wait it can be dramatic. These spots indicate that the meds have cause a problem for my liver. So I traded one problem for another. I am glad I canmove but will I be if I have to go on the liver transplant list? I read it and ignored it because I wanted to walk so very much. My misfortune can be someones elses good fortune.

if there is a spell check her i dont know where.

Hi Every one, i started back on the Embrel yesterday 3 weeks after the operation ankle replacement i had only because my hands were swollen a bit and i was a bit achy,i took 50mg normal weekly dose but i will see how it works and i may try and get something else instead,I still have some hair loss and the patches are the same little hair coming through,so i think i will just watch it,as u all say there are so many side efects with embrel but what we all do if we need something,we have to do something,who thinks the new bevelled needle is so hard,i try 2 to 3 times sometimes to inject,its painfull and hard to go in,the other ones were so much better,i prefer to make up the dose myself.Methotrexate i had but had to come off after a week i was very poorly,so just talk with your Rheumy whats best for You Tess.

I have been on Embrel for 8 years.
The only side effect that I had was when I took antibiotics for a bad cold. I developed a rash. Of course, I wasn't supposed tp take antibiotics while on Embrel. I just forgot that fact> It won't happen again. I have occasional mild flairs, but otherwise can deal with this desease. Had to go off for about a month due to surgery. I coud not walk within 10 days. After I was able to go back on Embrel I immediately saw improvement again. It made me realize that I did not know how much it helped me until I didn't have it.
I have a 23 year old daughter on Embrel.
Obviously it is hereditary. It has helped her also.

I just started on enbrel 3 weeks ago and I can say my hands feel a bit better and fatigue is better. I have had severe RA the past 24 years and probably had juvenile RA since my mom says I always was achey but doctors said it was nothing. I am seeing my rheumatologist again in January for blood work to see how enbrel is doing. I am still taking methotrexate,plaquenil, azulfidine, and folic acid.

I hope all works out for you too.




does anyone here use enbrel for their RA? I am wondering how it is working for you. I had to switch from methotrexate due to hair loss. Anyone else with similar symptoms?

I use the sureclick autoinjector pen which I think is much better then syringe needle.

Hi Every one, i started back on the Embrel yesterday 3 weeks after the operation ankle replacement i had only because my hands were swollen a bit and i was a bit achy,i took 50mg normal weekly dose but i will see how it works and i may try and get something else instead,I still have some hair loss and the patches are the same little hair coming through,so i think i will just watch it,as u all say there are so many side efects with embrel but what we all do if we need something,we have to do something,who thinks the new bevelled needle is so hard,i try 2 to 3 times sometimes to inject,its painfull and hard to go in,the other ones were so much better,i prefer to make up the dose myself.Methotrexate i had but had to come off after a week i was very poorly,so just talk with your Rheumy whats best for You Tess.