Fearful about starting Enbrel, need advice | Arthritis Information

I had an appointment with my RD yesterday. She's been mentioning Enbrel for several months now. I've been reluctant so she's increased the MTX a couple of times and this time she added sulfasalazine. I tried plaquenil but had a reaction.

I know she wants me to start Enbrel. I'm 58 and she said I may need my joints for a while longer. She is quite blunt.

One of my problems is I don't feel very bad at all. My toes are a bit swollen, I wouldn't even notice it and my toes are crunchy from time to time. But nothing compared to what I read here or what my mother-in-law contends with. She has lots of damage and terrible fatigue.

I'm also very scared of the drug itself, the injectible aspect, and the side effects.

Of course I was also frozen with fear when I started taking methotrexate.

I know I sound like a wuss. I have a great deal of confidence in my doctor she's very smart and very agressive, but not warm and fuzzy at all.

What do you think? I would really appreciate opinions.

Should I start Enbrel with such fairly minor symptoms? I know I should trust my doctor and I do, but I'm still scared and I didn't happen to mention it.

I would get a secord or third Opinion before takinga biologic drugDotty~

I don't know your history, and of course only you can decide what's best for you....but I was just as fearful as you when I started Humira years ago. Almost 5 years later; I'm pretty much in remission. I was having a lot of problems though when I started Humira. I had maxed out MTX at 25mg and my RD said he wouldn't increase it anymore....it was time to start a Biologic. I could barely make it up the stairs at my house without help. I was exhasted all the time and I was really at my wits end. I had numerous joints....including horrible back problems that were involved.

I can understand your hesitation though. Only having a few probelms; starting Embrel does seem extreme. I agree with 6t5frlane. Either get another opinion.....or just tell your doctor you aren't ready for that yet. What are the xrays showing? Are you seeing joint damage in your feet? It can happen very quickly and sometimes some of these doctors believe it's best to get ahead of the joint damage....and I don't totally disagree with that.

In the end it's totally up to you. Your doctor is there to advise you....but don't let him force you into something you don't feel you are ready for. I thought about it for 6 months before I finally agreed. I will say one thing though; if it's the actual injection that you are worried about; don't let that stop you. You get use to them and over time they just become routine. My husband does mine for me; but it's not that bad.

My first thought was a second opinion also, give you a peace of mind and another perspective. Good Luck,

Lisa

I found Enbrel to be a godsend.

With Enbrel I felt like I got my old life back.

Like you I was afraid of the needle aspect, but once again here is my injecting guidline post...

Your nurse will help you through it the first time, and I will warn you it will be cold and therefore sting. 2 things make it sting going in. Not letting the alcohol wipe area dry off, and not having the enbrel at BODY temp whenyou inject it. Room temp is about 70.. thats putting something nearly 30 degrees colder into your tissue..

so here you are..

I was also a needle wuss.

Even though the Enbrel, and the Humira pooped out on me I am so proud that I became adept at self injecting..

It is such a non issue now. I used to faint at finger tip blood tests..Here is what works for me.

First thing give yourself time, this isn't a facial, but it is something you are doing for you. treat it like a gift. fix a cup of coffee, go someplace quiet, play calming music.

Make sure the syringe is WARM. your body is 98.6... room temp will be a shock. I rest the syringe across the top of my coffee mug. Then just before I inject I roll it between my palms.

Ice the area of your tummy you will inject. Get it REALLY cold. I have an ice pack in a light t shirt, and leave it there for a good long time. You want that area numb. Wipe your tummy with the alcohol pad and let it dry.. Completely. The sting is mostly from wet alcohol on your skin.

Pinch up a roll of flab about the size of your thumb and finger together, check the syringe, and gently push the plunger in a little to get the air out of the syringe..

Hold the syringe like you are throwing a dart, and slide the point into the skin you have pinched up. The ice will have numbed it so much you won't feel the needle slide in.

Release the flab, and shift your fingers on the needle holding it between the index and middle finger, with the thumb on the plunger.

SLOWLY depress the plunger..I depress to a chant..."My toes won't hurt, my ankles won't hurt, my knees won't hurt, my hips won't hurt, my fingers won't hurt, my wrists won't hurt, my thumbs won't hurt, my elbows won't hurt, my shoulders won't hurt, my jaw won't hurt...this shot stings but far less than my body hurts."

You should be finished then, remove the syringe, place the ice pack back on for maybe 30 seconds, and dispose of the needle...now finish your coffee.

You can do it

My RD kept recommending Enbrel to me too, and I kept putting it off for fear. Once I gave in and decided to try it, I wished I hadn't waited like I did. Enbrel has been a wonder drug for me. I've also had no side effects at all.

As far as it being an injectable, I found that injecting in the stomach was much easier than the leg or outer arm. I hardly feel anything. You can do it! It's over in just a few seconds.
kweenb2009-11-13 09:18:12

I agree with most of the posts above..

a second opinion may not be a bad idea.

I don't warm up my enbrel anymore..and since I don't..It has begun working so much better!! I am ...according to my RD when I am on the enbrel.. almost in remission....

your choice is yours........ i wish you the best.

I take enbrel and it has helped tremendously. I was scared too, but my RD really emphasized the importance of getting control over RA. In the end I'm glad I tried it.
Good luck to you.Thank-you so much for your responses. Now I wonder if any of you had fairly minor symptoms when you started enbrel.

Also can anyone who is on sulfasalazine tell me anything about it, side effects, if its helpful, etc.

I don't think the prescriptin I got is time -realeased and that is supposed to be more effective according to the the information sheet that came with the pills.

Still conflicted, but I really appreciate input, it helps me alot!

Dotty, I understand why you're reluctant. It's a big drug. It wasn't as hard a decision for me because I was so messed up and the mtx wasn't helping much on it's own. I agree that you should look into a second opinion just so that you can have the peace of mind.

Hey Dotty, I agree with others about getting a second opinion. I didn't have minor symptoms when I started using Enbrel. The MTX was doing nothing and I was taking prednisone with it and still in pain constantly! The Enbrel with the pred has stopped a TON of the pain, but not all. I was just like you though. Freaked out about a biologic, AND freaked a bit about the MTX. So I know what you are going through. For me, I would have to be in a lot of pain to go to the biologics. But that is just me. The joint damage is a different matter. If they are still seeing significant damage happening in your joints, then I would go to it. It was kind of the last resort for me. When I started Enbrel, I couldn't wipe my own butt, I needed help dressing, holding a coffee cup. I couldn't drive more than 10 miles. I had to use a motorized scooter when I went to Home Depot. in another store my DH had to puc sh me in a wheelchair.. I think that was my lowest point.

After the first shot of Enbrel I prunned a big old Lilac bush and mowed the lawn. I emptied 18 years worth of junk out of my attic.

I walked downtown. I felt like I did before RA.

not minor RA at all.

Hi Dotty -

At the time I added enbrel, I would probably rate RA activity as more mild. But, I think our doctors can sometimes feel more joints inflamed that what we can, so maybe I had more joints invoved than I thought. No significant inflammation or pain, but fatigue still an issue. My doctor felt that since I was dx early, best to knock it down, so added enbrel and it made a huge difference in lessening the fatigue and managed to keep things in control. I went from contemplating cutting hours to p/t, to still working f/t. If I don't monitor myself, I still have a joint here and there that acts up and the fatigue comes back. I find no side effects and the shot isn't too bad - 15 seconds and it's over.

Just my opinion, but be careful in comparing your RA with others. You don't always know what other conditions they may have, pain tolerance, etc. In the end, the decision should be what you're comfortable with. If you're questioning it, may mean that you need a 2nd opinion or at least, further discussion with your doctor.

Good luck with your decision. It is definitely one not not be taken lightly.

Cathy

I WISH I HAD STARTED ENBREL OR THAT ENBREL WAS AVAILABLE WHEN I HAD ONLY MINOR SYMPTOMS!!!

I waited till I was homebound with pulmonary and cardiac complications from RA before I started a biologic. If I had started it when symptoms were mild I wouldn't have the erosions, complications and joint replacements that I have now. I might have gone into remission and stayed there. Don't think for a moment that this can't happen to you because you're symptoms are mild; it could happen next week.

You have medications available to you and you're in early stages of the disease, why wouldn't you want to achieve remission and lessen any symptoms that you have? I fear the disease much more than I fear the drugs. The disease doesn't go away on it's own.

Like I said I wish I had been able to start a biologic in my early stage of the disease. Now I'm waiting to go on Orencia infusions. I've been through all the dmards and biologics.

I'm really sorry that you have RA and maybe you should seek a second opinion but if you have confidence in your RD then I think a second opinion may tell you the exact same thing that your current RD is telling you. The most current treatment guidelines is to start a dmard and a biologic in the early stages and add another dmard if necessary. I'm taking 3 dmards along with a biologic. Treatment is a crap shoot and can change at any time depending on how you respond.

I can only tell you where I've been and how it's affected me, you have to make up your own mind. I'm also on Sulfasalazine and I haven't had any negative side effects. Take care and let us know how you're doing. Lindy

Drs have enough research that shows that aggressive treatment is the way to go and I am sure that is why your Dr suggested you go with Enbrel. It is a huge decision as it does bring some risks however it is very powerful. It took me a year to decide and I spoke to a number of Drs including an infectious disease Dr, but in the end I had no choice since by then I was in alot of pain from waiting so long.

I feel like my feet now have long term damage and will never be the same again.

I wouldn't worry at all about the injection part. I started a year ago and I use the pen which anounts to taking it our of the frig 20 minutes before hand. Holding it down on my thigh, pressing the top (like clicking a pen), holding it till it clicks again and then I'm done. I never see a needle. The medicine does sting as it goes in but is gone in seconds.

Yes! I have been on Enbrel since Feb 2008. I am thankful for this drug. My symptoms were severe, b/c it took so long to diagnose.

My suggestion would be to quickly do research on your own so that you can be comfortable with your decision; however, I have been hearing that aggressive treatment early is your best bet for long term positive outcome. Bottom line, if I were you, I would start Enbrel with minor symptoms if you have RA. Chances are RA won't be that big of a deal in your life if you take that route.

I was on MTX, but stopped due to WBC. So now it's plaquenil and enbrel.

I was FRIGHTENED about needles. Within a short time I got over it. It's not a big deal anymore giving myself the shot. Enbrel is wonderful.

Nori

I'm so happy with all the replies. It's really helpful for me to have different opinions. I'm leaning in the direction of taking Enbrel. My doctor is all about prevention.

I did think she was a bit sarcarcastic when she said I may not know pain now but I will when I have joint erosions. She's a bit formidible but she certainly has a point.

Thanks again. I'll let you know what I decide.

PS - I use the regular pre-filled syringe. I like it, b/c I control the medicine going in. Typically no stinging at all. If pre-filled syringe, you put it in a 45 degree angle. If pen, I believe it's 90 degree angle. Either way you get instructions before.You don't know how I envy those of you who can use Enbrel or any of the newer biologics. I'm stuck with MTX because I have latent TB.

You definitely should treat Enbrel like a wonderful gift.

I am sorry to hear that Sam. Will there be a point in the future when you can use a biological?

Nori

No, no point in the future.

Before starting a patient on one of these biologics a TB test is done. If you are positive then either the physician will not give you the biologic, or will treat you for the TB first and then give you the biologic.

The treatment for TB is very hard on the liver and the FDA does not recommend such treatment if you are over the age of 50 [or is it 55?]. Of course, if you actually have full-blown, activated TB, you will be given the TB treatment regardless of your age.

Since I am in my early 60's, treatment for latent TB is contraindicated.

I must say that MTX, coupled with Kenalog injection into the joints as I need them, has served me well. However, I'm fairly certainly I would be a lot better if I could take the biologics.

So go for it!

Sam1234,

I am sorry to hear that. I'm glad you have something that is working for you.

Nori

Nori,

My real point was to tell you I think the new biologics are a real gift. Go for it!

Hey Sam,

Oh this wasn't my post. I agree with you about biologics and was giving Dotty (?) the same advice to go for it!

Enbrel is the only thing that has made a difference for me, and I wish I was allowed to start it sooner, prior to not being able to squeeze toothpaste, etc. I had to beg for it. My doctor was an idiot. But that's another story.

Nori