Anyone on Enbrel long term year please read and respond here...

** Originally posted by metfan34 **

I have been on Enbrel for 2 years now and the improvement in my psoriasis is nothing short of amazing. It gave me my life back in many ways. Since I have been on Enbrel I have had a few side effects like headaches and a cold here or there..

The past month though I have been experiencing mild tingling in my hands and throat and my tongue seems numb (really wierd). I have read all of the warnings that it may cause multiple sclerosis etc... I called my dermatologist and they said to stop taking Enbrel to see if it improves.

For those of you taking Enbrel for a long time now like me, please tell me what has been your experience with Enbrel. Have you had side effects or symptoms similar to mine.

Thanks

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** Originally posted by NL **

I was on Enbrel for over a year at a double dose. I'm not sure if this was related to Enbrel or my low blood pressure or what but I fell down hard in the middle of the night a couple times. I didn't pass out or faint, it was just like my legs gave out. Otherwise I was very fortunate to not get any extra colds, ect. while on it.

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** Originally posted by food4u **

I haven,t found anybody on here that has been on a biologic longer than I have.I have been on Enbrel for 8 years to the month.I started it Jan.2000.When I started it,Enbrel was only approved for arthritis.So,when it cleared my skin,I told my rheumy and he said oh it's probably the sun.It seemed to help my skin for about 5 years and has helped the PA enough that I am able to work.I have only been sick one time during this period.Lately though,I have been getting dizzy a lot and I get nosebleeds more often than I should.Actually,I feel like a walking lab experiment.I know they do short term studies on drugs before they are approved,but I think myself and the others that started it early on are the long term guinea pigs.Lately,I have been considering slowly going off Enbrel and following a very strict diet and no alcohol etc.This is not to say anybody else should go off it.I just feel the time is right for me to see if I can try and get weened off this drug.I have been reading a lot over in the CAM section and have been getting some useful advice over there.

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** Originally posted by Patty925 **

I have been on enbrel since July 2005 and the side effects I have seen is weight gain and High blood pressure. I had a some what numb or tingling lower lip. but just briefly. I have broken out so have to do the double dose. I plan on doing it for a month starting my lamp and then decreasing it and hopefully coming off of it this year. That is my plan I just want to clear up again and start my lamp and have it where I am using enough of a dose that when I come of the enbrel I don't break out real bad.

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** Originally posted by MikeK **

Hi metfan34,

I sorry to hear that you're going through such a rough time. I hope that it's not too serious and that your problem turns out to be unrelated to Enbrel.

I'm at work (which means that I'm NOT supposed to be here :rolleyes: ) so I'm going to have to keep this brief. Several people had had neurological issues while on a biologic medication. We haven't heard from them in a very long time (so there's a pretty good chance that they won't see this thread) so here's the links to the threads where they dicuss their experiences:

Deb (MrsPriz) discusses her experience in this thread: http://www.psoriasis.org/forum/showthread.php?t=23028

Tom (tpd70) and MaryJean (MaryJean713) discuss their experiences in this thread: http://www.psoriasis.org/forum/showthread.php?t=24030.

Cat (SeeDoubleYou) also had some issues with Enbrel and can no longer use any biologic medication. I can't find the post where she discusses her problem. I'll try to post a link later on today when I get home.

I hope this helps.

Good luck!

More later,

Mike

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** Originally posted by ktdogs6 **

The thing is is that any medication can cause side effects, even aspirin, the long touted miracle medicine. If one has any unusual symptoms, they should immediately be reported to your doc. They can help you determine what you need to do next. I don't think your problem is related to MS, though. You would have more motor problems, most likely. Get some peace of mind, though, report your problems to your doc.

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** Originally posted by ktdogs6 **

Forgot to say, I just started a clinical trial....Enbrel vs placebo. Even tho I worked in data management for clinical trials for many years (now retired), it is hard to inject myself...go figure. The nurse clinician that instructed me said one thing that made a big difference...."this medicine is really a wonderful medicine." That does not mean that a small percentage of individuals cannot have side effects, as with any other medication, even over the counter meds. What it means is if we decide to take this medicine, we have to be aware of side effects and report any unusual side effect to our doc.

Side effects are rare, but they do happen in a very low percentage of humans. That should give you a little comfort!

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** Originally posted by tiggityrigress **

I have been on Enbrel since 2005. No side effects and happy with the results. I only have problems when I get sick, I go off of it until I get better.
Hope this help! Forgot to say, I was on Enbrel 50mg/ml twice a week until this last three months when the insurance would not cover it. Now I inject once a week.

Tig

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** Originally posted by ktdogs6 **

Tiggi, daggone! You have done well and now you're having problems with your insurance covering. Contact Amgen, the maker of this drug. Pehaps you can get some relief through them. Best of luck!

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** Originally posted by tiggityrigress **

Yup Dog,

I was a Pharm Tech and I know all the strings to be pulled and have tried them all, unfortunately I am not getting any results.

Tig

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** Originally posted by tpd70 **

Metfan34,

I am sorry to hear about your problems with biologicals. If you read the link that MikeK put up about my situation, you will see similar issues in my case. It was a very scary time in my life in 2 ways. Humira really gave me my life back and I was so scared to be without it and to lose function in your arms and hands is a very bad feeling too!

Here is what has happened to me over the last 10 months or so. After I went off Humira the neuropathy (medical term for the numbness) went away fairly rapidly. I was on 50 units of MTX weekly (injection, the pills made me sick). This was taking the very top edge of pain off, but not working completely. I had an elissa IGga blood test done in May and started taking out the foods that showed reactive for me and saw huge results coupled with MTX. (search my other posts if you want more info) I would have my blood tested every 4 weeks to check my liver and all was well until October and November where my liver enzymes were very elevated. Dr. took me off MTX and my P and PA erupted within 2 weeks. My rhuemy was at a cross roads of what to do with me as I was out of options. We had a long discussion and decided to try Enbrel. I guess Enbrel works a little differently than Humira and doesn't attack the TNF quite as "violently". My Rhuemy has 2 opinions on what caused my neuropathy. Either the ingredients of Humira did it or the lack of TNF in my system caused it. Our immediate goal is to get through 2008 with no problems caused by Enbrel. (He said some new things are in the pipeline for me to try). I did 4 weekly shots to start and now I am going as long as I can between shots (up to 11 days so far) to reduce exposure. So far, so good. I am being super aware of my body to make sure no issues arise being back on a biological. I am feeling much better now, not as good as the haydays of Humira, but good enough to walk, move my hands etc.

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** Originally posted by metfan34 **

Thanks all for the information. I am going to see my dermatologist in 2 weeks to discuss this with him. The Enbrel just worked so well with my psoriasis that I am afraid to stop taking it even with the negative symptoms I am experiencing. But I will probably have to.

I was on MTX and PUVA before and it did not work near as well as the Enbrel. Plus the PUVA takes so much time out of your life going to the office all the time etc....The MTX cleared me some but I was always nauseated while on the MTX. I do not know what to do at this point. I will have to find another treatment option soon.

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** Originally posted by metfan34 **

I am going to the dermatologist today . I will let you know what we decide to do about the Enbrel etc....

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** Originally posted by metfan34 **

The dermatologist wants me to see a Nuerologist before I restart Enbrel again. I have an appointment soon. I will see if the Nuerologist thinks my symptoms are linked to the Enbrel or not.

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** Originally posted by MikeK **

Thanks for the update. I'm glad that your derm referred you to a neurologist. Hopefully, the problems that you are experiencing will be something that's easy to treat and has nothing to do with Enbrel.

Good luck. Keep us posted and I hope you get some answers soon. Feel better!

Mike

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** Originally posted by SCCatman **

Yuo should also call enliven services. They track such things, and may have more info.
Dennis

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** Originally posted by deemah **

If the symptoms you are experiencing are related to Enbrel, do they go away in time after you stop taking Enbrel? Does anyone know?

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** Originally posted by TheOne1313 **

I was on Enbrel for over a year at a double dose. I'm not sure if this was related to Enbrel or my low blood pressure or what but I fell down hard in the middle of the night a couple times. I didn't pass out or faint, it was just like my legs gave out. Otherwise I was very fortunate to not get any extra colds, ect. while on it.

Wow thats weird. I thought I was the only one but apparently not. Anyways I was on Humira and I got sick and my legs did the very same thing. I had to go to the ER and in a couple of days my leg got better.

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** Originally posted by NL **

TheOne1313: I'm on Humira now and hoping that doesn't happen again. Did the doctors give you any reason for it. I didn't go to the ER or anything....I was able to stand up in about a minute. It scared me. Did you have low blood pressure?

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** Originally posted by TheOne1313 **

nope. In fact, they really couldnt tell me much about it. They performed a bunch of tests and found nothing. But I think it was my fault. I had the flu at the time and me foolishly kept taking Humira.....so im thinking that it was the combination between the two that may have done it to me. I woke up one morning to turn the alarm clock off and I fell. I stayed home for work that day and there was times thoughtout the day i kept falling so I decided to go to the ER. My leg just felt real weak. I had trouble lifting it up in the air......they thought maybe it was a nuerological problem. But slowly I regained strength and I was able to come home in 3 days. I continued with the Humira for 9 months afterwards with no issues like that. Unfortunately, in october my liver enzymes levels were raised and they took me off Humira. For 2 years it completely cleared me up tho. Now im thinking the next option is Enbrel, but first they need to see whats up with my liver.

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** Originally posted by TJM718 **

I was on Enbrel for about two to three years and Humira for about the last three or four. No noticeable side effects. I don't get sick anymore often than before biologics. The only quirk has been guttate flareups for the first time in my life. Derms say no relation. Saw derm last week - biggie in NY derm scene, nice guy - told me to keep on Humira. I am glad this post is here though as it's important. I hope we get some good information out of this and that anyone having medical problems gets some relief.

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