Last week after my first dose of Enbrel I was sore, tired, and had a monster headache for a day and a half. I didnt think it had anything to do with the Enbrel. But I took my 2nd dose last night and today it is more of the same. I puffed up last night and hour after the injection and this morning I was exhausted and stiff. Now my head is killing me.
Anyone else have this or other unlisted side effects of Enbrel?
Not me, but then I don't feel anything one way or another. Wish you'd call the doc. I hope you feel better soon. I would try to get a call into the doctor's office.Left a message for the nurse about the hives but no call back...I didnt make the connection of the other stuff untill this headache started kicking in around six this evening.
Crunchy; was on Enbrel for about 9 months and didn't have any side effects. Just talk to your RD.I am so relieved that you at least called the nurse. Please do not take another dose until you hear from the doctor. Crunchy, I wish you weren't having such a hard time with this. I know you feel like your hopes are being dashed. But there's always a plan B.I know there is Remicade or Humira if Enbrel doesnt work...but the truth is, there are days when I wonder if I should maybe just stop taking everything. Probably wouldnt work huh? But sometimes I just want to quit.Definitely have wondered about that myself. That thought works only until the pain sets in or I can't walk or move in some way.
I always want to quit. Not a day goes by that I don't feel that way at some point (usually starts when the alarm goes off). My daughter has the same problem and she has so much to deal with. We have deal, I can't give up and she can't give up. No breaking the deal.
But I can sense how really discouraged you are and you have had a lot going on lately. You just didn't need to have this happen on top of it. We look to these newer medicines with such hope. It is devastating when we don't get the results we had hoped for, worse when one gets reactions like you seem to be having. As if you didn't feel bad enough already.
When they took my Remicade away, I really cried my heart out. It made such a difference for me. All my friends and family felt really bad for me because they could see what a difference it made. I guess the Enbrel must be doing something, but I don't feel like it is stopping the joint and tendon detoriation. I certainly don't get the punch out of it that I did on the Remicade. The MRI and xrays seem to support that. But maybe it will just take more time. The doctor seems to want to give it more time. So, that's okay for now. I am sustaining.
So, if the Enbrel isn't for you, it may be that something else is going to be much more powerful. Hang in there.
I am going to stick with the Enbrel for now. Am I crazy for thinking maybe none of this stuff works because I dont really have RA? Maybe I have something else and all of these drugs are just making me sicker. I know that cant be true but still....I had headaches but I think it was because I was taking my MTX and Enbrel at basically the same time, and not drinking enough water. Now that I have quit the MTX and drink tons of water, I rarely get headaches. I used to get them right after my injection. Enbrel for me is worth the headaches... even if I still had them, I would just go to a dark room with a cold face cloth and try and fall asleep. I love my Enbrel. Did you get the headaches with the MTX alone too? I am not doing mine on the same days. I am doing Enbrel on Thursday night and MTX on Sat. nights.The other thing is that Tylenol 4 always gets rid of my headaches, but so far it only takes the edge off of these. Even with the Flexeril.Crunchy-sounds like you are really having a hardI got the very bad headaches with the enbrel also, it stopped after about the 4th weekly injection, It is listed as a common side effect.
I was also tired for a day or so after and I got a site reaction, I would start itching within 20 minutes and swell at the sight. My doctor said that is a reaction to the protein and not an allergic reaction. I would take benadryl with my shot and it seemed to help with the itching.
But the bad thing was I really did not have much improvement at all with it. I sometimes think that I must not have RA either because nothing but prednisone has really worked!!!
I Hope it works well for you, my next treatment is Orencia, so I am hoping that will be my answer.
I hope you feel better!!!!
Karen
See that is the crazy thing about the hives, I dont have any site reaction at all. The hives are everywhere else. I have had problems with hives for years, but not this bad.
The headaches really kick my butt! I am not going to be able to work the day after the Enbrel injection if this continues.
I had hives all over from an allergic reaction to penicillan. Did you try taking some Benadryl yet?
Also, the problem with hives that you have had in the past, is that triggered by emotions or stress or by a particular allergen? I was thinking if they were triggered at all by stress that this sudden influx of new medication might be causing the initial response of hives. With Remicade, they give you benadryl with your first few infusions to make sure there is no allergic reaction.
You are also allowed to call doctor's on the weekend. I don't do that much, but it would be worth not suffering so much.
Crunchy, I just want to see you feel better.
Oh yeah, I have been taking allergy medicine every 4-6 hours. The hives were determined to not be caused by stress, allergies, or Thyroid problems (which I dont have). Basically I was told that it was just one of those things. I think it all is tied in with a screwed up inflammatory response. That is why I dont think that they are an allergic reaction to the Enbrel, I just think that they are worse because of the Enbrel. I take chlortrimaton...once a day usually to control the hives, but it can be taken every 4-6 hrs and I have been taking it that ofter the past few days, or phenergan which is also an anti-histamine. I also have some clariton that I might try. I cant take Benedryl unless I want to be knocked out for 18hrs.Crunchy, I get headaches sporadically from enbrel as well as some sinus congestion and a little bit of a runny nose. I consistently get a site reaction although it has gotten much better in the year I've been on it. Drink a lot of water with it and try not to schedule it the same day as MTX (if you're on it). My dermatologist says if you get a site reaction , You're allergic to it. I was still advised to continue it. You might try the enbrel hot line although they're more interested in covering themselves than helping and will tell you to call your own doctor not matter what you say.I dont get any reaction at the site which really suprised me, and the hives didnt start untill 5 days after the injection. I think I am just crazy. Crazy body that does things with no rhyme or reason.I, for one, will not go back on Enbrel because of these side effects - they are too debilitating to have such severe migraines.
Good luck, not everyone gets the same side effects, I might have just been one of the 'lucky' ones !
Ouchy
Thanks Ouchy---I will stay with the Enbrel for a few weeks to see if the headaches subside, but if not I may ask about something else. I took the Enbrel on Thursday night and I felt like crap untill about 4 o'clock Saturday. That is 48 hours lost and now I need to go take my MTX shot. I am willing to give it a fair chance...but seriously...I still have moments where I think maybe I just wont take anything and see what happens...
So the Remicade is working well for you?
:Remicade seems to only work for about 3-4 weeks for me. I have the infusions every 6 weeks. My RD added Plaquinel about 3 weeks ago. Am going to keep with the Remicade for several more months - they can up the frequency to 4 weeks I am told so might do that.
Like you, I have to admit I have toyed with the idea of quitting them all - but I think it would probably be a mistake to do. Have worked so hard to get this far !
I too think about what would happen if I just stopped taking all this toxic medicine. My rheumy says I'll be completely disabled in 5-10 years. Sometimes I don't know if I really have RA? I've been diagnosed with so many autoimmune and other diseases and doctors keep changing their minds and adding to list of what I have and meds I must take. I do have a positive rheumatoid factor. Does that mean I definitely have an autoimmune disease?
I have one friend with RA who just stopped taking her meds and went to an alternative person who did all kinds of allergy testing. She put her on a very strict vegetarian diet with a lot of veggie juices and stopped all sugar and prepared food. She claims she is improved.
Im fairly new to these boards but I read your post and you sounded so discoureged and I feel so bad that the Enbrel may have caused a reaction,I hope things get better for you soonCrunchy
The first two shots of enbrel caused me to sleep most of the day of the shot and the entire next day. Other than that I had no reaction...no headaches, itching, etc. But, like you said, taht was a day and a half lost. The third and fourth shot I had no reaction at all so please just give it a little more time to work.
Like the rest of you I get tired of trying this and taking that and wonder if I would feel better by just dumping all the meds I have-I would definitely have more space in my cabinet!!
Hang in there Crunchy and I'll be praying that the enbrel works for you and the isde effects go away.
Crucnchy ?, and others... my sig tells it all, but just in case you're wondering -Funny you say that now...the first 2 shots I did go on about my business and I got headaches. The 3rd shot I laid down after and I was okay.
I also wondered if I was getting it in the muscle on the first 2 injections. I did them in my arms, the last one was in my belly-no muscle there!