I saw the rheumy today and received my first prescription of Enbrel. I probably won't use it for a couple of days until my test results are in. What kind of side effects are typical? Is it difficult to inject? How long before I notice any improvement? I will appreciate any information you can offer.
Andy, I've been on Enbrel for 13 months. I noticed some improvement within weeks an the improvement continued for several months, maybe six months. Then I couldn't tell I had PA anymore. I've had no side effects other than sometimes itchy at the injection site. It's probably the preservative, but it's not bad enough to make me want to bother using Enbrel in the dry form.
I've had one cold so far and it was a very normal cold. I think it's an awesome drug, as are the other biologics. It does hurt me sometimes when I inject... I wish that meant I didn't have much fat, but well I'm not that small!
Everyone is different, but I’ve been using Embrel for 4 weeks with no improvement so far. The injection hurts quiet a bit but if it helps you it’s worth it. I also get the rash at the injection site but it’s not too bothersome. I found weird that there was no rash with the first injection and 5 days after the second one I got the first rash. I hope you have better luck and feel better. My doctor told me I should feel better with the first dose, so hopefully you’ll feel the difference.
Monica, sometimes I get a rash or bump, sometimes I don't. I can never tell. It often stings a bit going in, but you get used to it pretty quick.
The doc said to go ahead and use Enbrel. I just did my first injection in my stomach and I felt nothing!! What a surprise. I hope I did it right!!!
Hoping you find relief on Embrel. I took my first shot of Humira 2 weeks ago and will finish my antibiotics before the next dose which should be Monday.
Good job Andy, way to go! I am sure you did it right it is pretty easy. I was surprised too. I just had my first infusion of Remicade yesterday. It was easier than I had hoped. No premed of Benadryl so I was able to go to the pool afterwards. No effect yet but I am hopeful!
I had my fist shot of Enbrel last week. Auto-inject pen. Couldn't even tell which thigh I used afterwards. And I really did start to feel better this week. Looking forward to shot #2!
Yay for your first infusion. Too soon to tell anything?
michael in vermont said:
Good job Andy, way to go! I am sure you did it right it is pretty easy. I was surprised too. I just had my first infusion of Remicade yesterday. It was easier than I had hoped. No premed of Benadryl so I was able to go to the pool afterwards. No effect yet but I am hopeful!
Two soon. No effect yet. They said during infusion it can take up to 2 months to see effect :-(
Give it time. I am on my eighteenth week. Starting to feel better but not 100 %.
I am giving it time but holding my breath! I went to stretch in the warm water (too sore to really exercise) and then went to have a cranial sacral massage or gentle adjustment. I am having a lot of "me" days until I feel better. Nice but very hard for this old nurse to get use to. Now I am going to have pot roast and watch a movie with my husband. With chocolate cake! I guess I could get use to this if I must.........
If you didn't have a bunch of liquid running down your side, you probably did it just fine. :) Well done!
Andy said:
The doc said to go ahead and use Enbrel. I just did my first injection in my stomach and I felt nothing!! What a surprise. I hope I did it right!!!
There was just a drop.:)
Andrew said:
If you didn't have a bunch of liquid running down your side, you probably did it just fine. :) Well done!
Andy said:The doc said to go ahead and use Enbrel. I just did my first injection in my stomach and I felt nothing!! What a surprise. I hope I did it right!!!
For me: mild nausea; diarrhea the day prior to when the next injection was due; sometimes, a red and slightly sore injection site.
i am going off mtx because my husband and I are thinking about having another baby. Before I was able to tell my dr this, he had already recommended that i switch to enbrel. I dont understand why. For the most part mtx 15mg per week was helping me. I know my dr wants me to use enbrel because it is a better drug apparently.. but these are the issues I am having with this; my dr has told me I have moderate PsA and it has been a lot better since Ive been on mtx....so why not increase my dose of mtx before putting me on enbrel. Wouldnt that make more sense. I thought enbrel was a last resort drug and for moderate to severe arthritis. i am scared of the serious side effects of enbrel and I dont know if they are worth the risk when I have been doing ok on mtx and that I havent tried increasing it..i may feel even better if my dose of mtx was increased. I just think my dr is pushing enbrel on me when it is not necessary and it is not safe for me...i have a history of serious leg infections and I have to be hopsitalized and in addition before and after the hospitalization, I am on bed rest at home with nursing care. My last leg infection was 2 yrs ago and the one before that was 3 yrs ago. I had 2 serious leg infections in 2 yrs. I spend so much time recovering. The last one was really scary because they had a hard time controlling it. I was an emotional wreck. My husband and I do not have much help with our children so if anything goes wrong we are doomed. It is only my husband that is working as I am a stay at home mother so when Im in hospital my husband has to stay off work to look after the kids. We need his job. I dont need more infections because I already get them. I also consider myself lucky that i havent gotten one in 2 yrs. I didnt take any medications during my leg infections ever because I was diagnosed and put on treatmt after the last one. Ive read enbrel carries a risk of serious cellulitis infections and people with a current infection or a history of reoccurring infections should stay off enbrel. I am really scared what if I start enbrel and get another infection. I did let the dr know of my concerns. this is after our appointmt with his secretary because my appointmt where he told me to go on enbrel was so rushed. He gave me a booklet about the drug to take home and that was that. I was able to tell him i may want to have another child and he said thats ok enbrel is safe, for use in pregnancy. Im not even sure of this. Heard conflicting things. I am waiting to hear back frm my dr about my concerns. In the mean time ive started the enrollment process for enbrel and found out if my insurance covers it then I'll get 100% coverage so I need not to worry. I was wondering what any of you think of my situation with my reoccuring leg infections and going on enbrel. Is there not any other medication I can take for PsA that would be safe in pregnancy and that doesnt carry such a big risk of serious infection like enbrel does....Im willing to go back to mtx later after pregnancy with an increased dose. I have to see what my dr says.
The risk of infection with Enbrel is LESS than that with either MTX or Prednisone unless you have or are exposed to TB or spend a lot of time in tropical jungles with wet socks. The incidence of infection requiring hospitalization with Enbrel is no higher than without. That being said some have the normal things (colds etc) last longer......
More MTX isn't likley to be better..... But it is harder on YOU than a biological. At your age aggressive treatment NOW will have a better result later. It takes months for these drugs to get one where they need to be. Changing back and forth
Thanks for your reply. It is the opposite from what i read. But much more positive. I am getting my info from the company drug info booklet. Mtx fact sheet doesnt mention such a high risk warning of infection like enbrel does. They note it but the warning is not as severe. Nor is the warning for cancer on their literature. They could be not telling us properly. I am not entriely comfortable on mtx either but the risk of infection and cancer are less frm what i have read & I need to take something and I agree I need to be on some sort of aggressive treatment but Im just not so sure enbrel is for me...is it not a last resort medication...I do understand that more mtx wouldnt be good..could increase my risk for infection even more...the more you take the greater the risk im sure. So you think instead of increasing the dose I should just go on enbrel. That's better. Im just so afraid. The warning on enbrel by the company itself is so scary esp for someone who already gets serious skin infections without the influence of medication.Also the language the company uses is scary. They specifically write on their info booklet that some people have died from serious infection and cancer while taking this drug. Ive also read personal accounts and there are some scary stories out there. But I do understand that you;ll always hear more people complaining, more horror stories than good news stories..that's just how life is, how people are. Your reply is refreshing and encouraging and definitely will put more thought into it. I understand too how important it is to get aggressive treatment while young and it takes time for drugs to get the full effect. I am just confused with the company's warning. Glad to be a member of this group to gain a better understanding of this disease and the treatments for it.
Let me ask you something else or anyone who would like to apply.. I am not in any constant pain. When I do experience pain it lasts only 1 min and because it is in my foot i cant walk and its such a bad shooting pain..thats how i describe it but it doesnt last more than 1 min and i just stop where I am , cant walk. Sometimes it happens after standing after I try to walk again..before mtx , i got this pain more frequently but still it lasted no longer than a minute each time. I have limited mobility in my toes only in the way that i cant wiggle them , i really have to try and build up to it before i can and never like the toes on the other foot.- muscles are very weak. I feel stiffness in that foot all the time. But no constant pain. Sometimes the stiffness is uncomfortable to sleep. I walk a lot and it helps me ...i dont feel the stuffness then. I feel normal. I cant walk hours like i used to but i am very active. I keep myself busy around the house and I go for a 30 min walk every day., more sometimes. I sometimes have to break up the walk into smaller walks. I dont feel like Im suffering but I do see a difference frm last yr. I cant do any cardio or run (it creates alot of pain and Im prone to injury like sprains etc). But for me I dont need to do any thing like that. As long as I can walk a lot I'm happy. Before mtx i got the pains more often and it was hard to sleep or sit in a chair even because of the stiffness. So it did get better being on mtx but things should be better as per my dr. My dr has looked at my foot, still sees the swelling and the stiffness..it is so obvious...and said I should switch to enbrel. i have heard aggressive treatment is the best even in the beginning. Is that why my dr may have suggested enbrel. It's aggressive but neccessary? He didnt know I had a history of serious cellulitis infecitons when he reccommended enbrel and I am waiting to hear back frm him if I should continue with it. Unfortunately i cant go back to mtx so it will be enbrel or something else. Im sorry for making it seem like enbrel is a big deal but to go frm no disease to a disease, frm no medication to medication...so fast - if felt like this has all happened over night. It's too much at times. And like I said you hear more bad things than good things which doesnt help. Thanks
beecreek said:
Thanks for your reply. It is the opposite from what i read. But much more positive. I am getting my info from the company drug info booklet. Mtx fact sheet doesnt mention such a high risk warning of infection like enbrel does. They note it but the warning is not as severe. Nor is the warning for cancer on their literature. They could be not telling us properly. I am not entriely comfortable on mtx either but the risk of infection and cancer are less frm what i have read & I need to take something and I agree I need to be on some sort of aggressive treatment but Im just not so sure enbrel is for me...is it not a last resort medication...I do understand that more mtx wouldnt be good..could increase my risk for infection even more...the more you take the greater the risk im sure. So you think instead of increasing the dose I should just go on enbrel. That's better. Im just so afraid. The warning on enbrel by the company itself is so scary esp for someone who already gets serious skin infections without the influence of medication.Also the language the company uses is scary. They specifically write on their info booklet that some people have died from serious infection and cancer while taking this drug. Ive also read personal accounts and there are some scary stories out there. But I do understand that you;ll always hear more people complaining, more horror stories than good news stories..that's just how life is, how people are. Your reply is refreshing and encouraging and definitely will put more thought into it. I understand too how important it is to get aggressive treatment while young and it takes time for drugs to get the full effect. I am just confused with the company's warning. Glad to be a member of this group to gain a better understanding of this disease and the treatments for it.
The warnings you are referring to are from the initial applications. there are studies done prior to approval. They generally are a fairly small population 500 - 1000 so numbers can be skewed pretty easily. There is a reason for this. The study is repeated with several populations. Once the drug is approved the "warnings etc" are pretty much cast in stone. Then after the drug is in use they monitor it in what is called aftermarket studies. The data becomes more and more "accurate" (or at least indicitve of what really happens.) If it get worse the drug is reviewed. but if it gets better, interrstingly not much changes. The after market data is not as easily found, but its out there.Most docs won't refer to it what they may do is answer a specific question, what they are most likely to do is hand you a brochure and tell you to read it and do your research. (This means they disagree with the prescribing information)
If you really want to know whats what you can access the "real stuff" if you cl;ick into the "For health Care Proffessionals" prescribing information on the drug companies websites. Its frankly a bit complicated to ferret through.
You asked why it isn't as strong for MTX? thats because the have NEVER been any approval studies for MTX like the initial studies for the biologics. Its operating off the fact its an approved drug being prescribed at 1/100th the dose it was approved at. The fact that most of the patients using MTX in the initial study DIED has nothing to do with it (much) It is a chemo therapy drug for colon cancer. More to the point these folks all hadall the condition (infections cancer etc) so it is hard to know if MTX caused new ones. thats a bit overstating by the approval of low dose MTX for arthritis really was based on whether or not it worked for the NEW conditions. But just like Enbrel there have been aftermarket studies:
http://rheumatology.oxfordjournals.org/content/48/8/867
Heres the thing. The chance of serious side effects aren't much higher than taking nothing with ANY of these drugs. There is a chance of some really annoying side effects for sure.
But ask any of us who have been around for a while The CERTAINTY that this disease will do some very bad things if not treated makes those chances of side effects almost not worth considering. A lot of us are old farts who in the eyses of you youngins lives are almost over anyway. But ask any of us if we have taken these drugs when we were your age in order to make our lives and the lives of our children better (had they been available) I'd be very surprised if anyone would have said no. I'm not trying to make light of your concerns/fears at all.