In the short time I have had this disease it seems like my body is stubbornly working against me!!!! I started out on the MTX, Plaquenil and Prednisone mix... felt a little better but still in pain!!! Then onto Arava, MTX, Plaquenil and trying to ween off the prednisone (I take 5mg BID)... felt really great for about a month and then when I tried to ween off the prednisone I started having major wake you up in the middle of the night flares!!!! You know the ones that every movement makes you start sobbing.
I really feel as though these drugs do work and then my body becomes resistant!!!! I know I had relief and I loved every minute of it while I had it. So, now I am waiting for my first shipment of Enbrel and I am petrified as to how I will be able to give myself a shot (without wasting it as it is so expensive), I am trying to stay hopeful that this will work because this really sucks!!! My RD is a great guy he told me that of all the meds I am taking that in his opinion the Prednisone is the worst. He said that five years ago where I am at would have been considered acceptable but that he wants more for me and that he really feels that Enbrel may do the trick. I am sure I will have many questions about the Enbrel so if any of you have any suggestions, or advice I welcome them!!! Thanks for letting me vent!!
Connie
Does anyone taking Enbrel have suggestions or advice?
Connie
Connie: Boy, do I hear you---were you hiding in my house and taking notes when I was first being treated for RA? :) Anyway, I was on MTX and prednisone when my RD said he wanted me to consider Enbrel. I, too, didn't know how I could get used to giving myself shots, but, remembering that I had to do that once before for a short while when recovering from hip replacement, I figured somehow I'd do it. Anything that would relieve the pain of RA! The first time was hard--I must have had that syringe in my hand for 5 minutes before I got the courage to inject it. It got progressively easier and now it's second nature and just takes a minute to do the whole process. Don't get me wrong, I'd still prefer not to have to inject but it's worth it. A couple of tips that work for me: I let the Enbrel come to room temp for about 15 minutes--it seems to lessen the sting. At first, I was doing a quick jab of the needle (in my stomach) but I've learned that sliding it in slowly at an angle is better. Then, I slowly push the plunger--it probably takes at least 30 seconds to get it all in but, again, I don't feel it as much. And that's it until the next week. As far as it's effectiveness, I was told it might work in as little as two weeks or as much as 3 months. My RD and I were both hoping I'd be "an early responder" but, unfortunately, that didn't happen. I was ready to give up on Enbrel but my RD encouraged me to stick (pardon the pun) with it longer because a few people take a long time to have it be effective. It was about 4 (yes, four!) months before it really kicked in. I wouldn't be without it now---it's been doing wonders since about February. I still have some break through pain and take Tylenol with codeine for that and I catch every cold that comes around but I still consider it worth it. As my RD told me, quality of life is really important and I want to get around. It's taken me a long time to accept (and I'm not sure I'm there yet) that this d*@* RA is not curable but can be managed. It is a limiting kind of condition and frustrates the heck out of me sometimes (see my other post about RA and fatigue) but I just keep doing whatever I can to keep it under control. Enbrel is now a way of life for me and I plan to continue it forever if it continues to be effective. Another thing I find very helpful with mobility is water aerobics exercise class sponsored by the Arthritis Foundation. I highly recommend it---exercises you can't do on land you suddenly find you can do in the warm water. You don't have to know how to swim to do them. Well, I've rambled on long enough but I really hopes this helps you and maybe others. Believe me, I know the frustrations of RA--I can't count the number of times it's had me in tears of pain and frustration. Hang in there!! Let me know if you have other questions about my experience with it. LindaWell I am new to this site, actually I just started getting on this site a few days ago. I have been doing Enbrel shots, 5o mgs for over 6 months now. I had some great success for awhile, not I am fighting a flare again, but I still feel that without the Enbrel I would be much much worse. I got on Enbrel cause I absolutely cannot do the MTX anymore, it made me so sick, and the longer I stayed on it, the worse I got as far as getting sick.
Anyhow, I cannot stand the sight of needles, cannot look when getting any kind of shot or iv. The idea of giving myself a shot seemed insane, but because of how miserable the MTX made me feel I had to try. My RD's nurse walked me through my first shot and it wasn't bad at all. Its the pen style, so you never see the needle and you don't even have to look at it when you click it. I get everything set up and I look away and then you click it like a pen and it clicks back up in about 10 seconds or so when it is done. Trust me, if I can do it anyone can.
I don't have a sig, or anything else set up yet...But I am sure I will talk to you again!
Hi Connie, It's not unusual to have to go through multiple combinations of meds till one is found that works. I've been on antibiotic protocal, Enbrel, MXT, Remicade and now Humira. Humira and MXT have worked the best. It's taken over 2 years to find the right combination. Some worked for a little while and stopped. I'm hoping that Humira works longer than the others. We'll see.
I've always said that the first thing you learn with this disease is patience. I've been on Pred. for almost 3 years and I'm finally down to 8mg. daily. There are multiple health issues and side effects from Pred use. It should be avoided for longterm use. I hope to never have to go on it again once I'm off. Your RD is correct and it sounds as if you're on the right path. If you have a good instructor to show you how to inject you'll be fine. Lindy
Thanks Linda, Midnight and Lindy. I am sure I can get over my fear of the needle because my desire to feel better is greater than my fear. I don't think my RD likes the clicky pens but who knows what I will receive. My insurance approved the Enbrel within 24 hours and I am now waiting for my shipment to arrive. I have been reading alot of the posts regarding prednisone and trying to get off it. I agree that weening off the prednisone does make me flare. I have cut back to 5mg in the a.m. and 2.5 in the p.m. since my last RD visit. I am not flaring any worse than usual and my goal is to be down to 5mg when I start the Enbrel. I want to know if the Enbrel is working or not.
Thanks again for all your advise and suggestions!!! I am praying that this will be the one... I do feel that the extremely cold weather and snow has been affecting my RA.
Connie
Connie,