Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think I have to come off of Enbrel.

Hi All,
I think for my own safety, I am going to have to talk my doctor out of prescribing me Enbrel. Remember when I asked about the use of Enbrel and developing blisters from it? Well since I asked that question a couple or weeks ago, I grew about 50 of them total and they are on my back and neck now too, not just on my hands and feet. New ones seem to grow about 3 days after each injection. These strange blisters don't live longer than a few days (each), but they itch like crazy.

Also, the last 2 nights in a row I had to jump up out of bed and wake up Brenda because I woke up not being able to breath well. It lasted about 10 to 15 minutes each time. This happened once about 2-3 weeks ago too, but I never said anything to anyone about it... assuming it could have been from just simply waking up the wrong way (if you know what I mean). During the daytime my breathing is fine though. It felt like my throat was closing up too, the same experiences I have with biz-bone-meds (oral), muscle relaxants, and pain killers. I had the problem much worse being on those meds though, which included swelling of my tongue. It's all allergic reactions I guess. I get a small Enbrel site reaction every other week too.

Every couple of weeks I get a small colitis like bleeding reaction too. It's not alot, but it's enough for me to notice it, and yes I actually do have ulcerative colitis as well. Overall... the colitis is getting worse than what it was before starting Enbrel.

I think the Enbrel is loosing effectiveness too. I can still get around as good as I was when I first started Enbrel (which is good), but my neck, back, and ribs are getting achier and achier each day. My neck-pain-associated-headaches are back in full force again.

First thing Monday, we are calling up my doctor to see if she can squeeze me into her nearby location that she only visits once a week, and ask to stop taking Enbrel. I think I am going to stop taking it if it gets worse, regardless of what she thinks, but that time hasn't come yet. I'll see what she says first. Oh the reason why I can't see her in Toledo is because of our car not being reliable enough to stay running that long. We just got it repaired, but I barely trust it enough to do our shopping locally. So yeah, I'm still waiting to see her, but I have managed to see my family doctor about these problems, but he didn't give an opinion or advice, instead he simply said I take too many meds.

Just consider this an update, because I'm pretty sure I already know what I am going to do... and that is to stop enbrel, or take the lesser weekly dose to see if that helps. A lesser weekly dose isn't going to do me much good AS-wise though.

So how's everyone here doing?
Take care,
James

Sorry to hear that James, I'm on enbrel (myclic pen) since January now and I just find it fantastic and have had no side effects (thank God) apart from a little site area reaction that can be a little itchy. It's like a switch has been turned that has gotten rid of my pain, unbelievable!
Hope you find something that works for you
all the best
Sham

James,

This all really stinks. I hope you get this all figured out. Would another TNF work for you?? You take too many meds??? Most of us do. So what is the point of THAT comment. What is the solution!!! All that does is make someone feel bad for being sick. SHAME ON HIM!!

Am I on too many meds too.

Remicade
Hydrocodone
Lyrica
Savella
Prednisone (migrains only)
Lorazapam
nexium
Valtrex (as needed Cold Sores)
Skalaxan (neck pain)
Clarinex
Lipitor

Makes me mad when I hear such nonsense coming out of a Doctor's mouth.

Sorry to hear about your car too. Man, when it rains it pours.

Good luck with your appointment on Monday Nice to hear from you again!!

sorry to hear about the enbrel.

and have to agree with jeffrey regarding that comment about the meds. if its followed by helpful advice on how to change it if the doctor thinks that's something that should be done, then maybe, but to just make a negative comment like that, that's not helpful. like any of us like having to take the drugs that we do, but if they make us feel better, make us more functional, keep us a little bit healthier, then we understand their importance.

Wow James, that's awful. I can't believe your doc has continued with the Embrel to this point. Please be careful not to let this allergy become life threatening, sounds pretty close to me.
Cindy

Hi Cindy,
My rheumy says it is something that she needs to see me for before she can make this type of decision. I'm not a very good mind reader but I think my family doctor was trying to say the same.
Take care,
James

James,

I think you already said it, for your own safety you need to stop, I'm not a Dr. by any means but it sure sounds like an allergic reaction and if it is involving your throat then STOP! next time it might completely close up. blisters are scary and that to me is a sign saying your body is not accepting or it is rejecting what ever is going into it.

Have you started ANY other drug or certain food or have been eating a ton of something, the only reason I am asking is when our oldest was only 4 we lived in california and we had an apricot tree, we loved them and ate alot of them in a day, I know it was the acid but Tiffany started breaking out in blisters on her bum and then got more and they started spreading, I started thinking what did we start doing or eating and then it was like PING, I made her stop eating them, she was upset but after about 3 days they dried up and were gone, so from then on she could only have 1 or 2 at a time or every other day but they were bad.

Keep us updated.

Hugs,

Lisa

Hi Sue,
More than half of what I take, my family doctor himself put me on. So it seems strange to me that he would say that comment after another doctor put me on Enbrel (which has allowed me to stop using other meds and supplements).
Hope you have been doing well.
Take care,
James

Hi Lisa.
Nothing really has changed except I haven't been supplementing for a few months now (since starting the enbrel roughly), except for when I started taking calcium and a multivitamin a week ago. Food-wise, everything is the same as before except for I have allowed myself to eat some starches that I normally wouldn't eaten before starting Enbrel. So I'm 95% positive it is the enbrel doing it. Brenda and I just decided last night that I will not be taking the Enbrel anymore. We feel it's too risky for me.
Thanks for the reply.
Take care,
James

Hi Jeff.
Nice list you have going on there. Yep, my list is a little on the lengthy side too, but I think my doctor forgets that I haven't been taking any supplemental things too. It's only prescribed stuff now (except for a multivitamin and calcium I just started the other day, because I need to stay on top of bone loss).

What he said to me kind of just bounced right off of me, and I didn't take it personally. It wasn't any information I could use though.
Take care,
James.