Do any of you ever consider not taking all of these drugs? I'm so sick of swallowing pills that the thought of adding one more makes me gag. I mean really....how can we weed them out so that we only take what we need to take?! I've been taking all of these medications for years and my RA is not and never has been in control. Soon, I'll be starting Remicade to see if it works since my current treatment doesn't seem to be doing much. I'd really like to just start over as it seems like I'm taking so many drugs that aren't doing much if anything at all. I don't feel any different on this whole list of pills I pop than I felt on Enbrel alone...absolutely no different. I am going to discuss this with my RD as I feel that the amount of medications I take with little to no results is ridiculous.
For those of you on Remicade, can you give me some feedback on how long it took for you to feel the effects? I know it varies, I'm just looking for a general timeline. I've wasted so much time on treatments. I've decided to try the Remicade but I want to put some sort of time frame on it and if it doesn't work I'm seriously considering trying AP. Perhaps the Remicade will work and I'm hoping that it does but if not maybe I'm just not a good canidate for the RA drugs.
I'm sorry if my posts don't seem very postivie today or if they seem grumpy. I'm kind of pissy today and not sure why...probably just tired.
Peace & Love...Neasy
Im sorry your not feeling well. Id be grumpy and pissy too if my meds werent working. Have you been on mtx at all? Did you try your med in conjunction with the enbrel or even humira? Hope the remicade does the trick for you I so understand where you are coming from. I am on a huge list myself and yes, I have considered several times to just stop them all.. As you, I don't ever feel my disease is under control so its like, why bother taking all this crap? Its ok to be pissy now and then!!!Neasy, I understand exactly what you're going through. It took almost 10 years to find the right combination of drugs. I'd start a new drug, get better, then it would stop working, etc., etc.
I've been on Remicade and MXT for about 1.5 years and I had 5 infusions before I noticed a difference. The meds have been adjusted 3 times since I've started. I'm at least 60% better than before these meds. For me that's a HUGE difference in how I feel. I don't expect the meds to make me pain free because of damage.
Right now I have no pain from the waist up, except for the damage pain and a pain pill takes care of that. My back, buttocks, thighs, kness, ankles, and feet have been absolute torture the last few weeks and I just started Lyrica, Vitamin D, and Magnesium. Fibro and sciatica decided to join the disease mix. I got up this morning virtually pain free. I just cleaned the kitchen, tore the stove apart and cleaned, and am starting to feel some twinges and burning in my feet. I think Lyrica is starting to work already.
It's so frustrating to keep changing meds and I hope Remicade works for you. Are you on MXT? Just don't expect miracles for about 5 weeks. You can PM me if you need any further info. Keep us posted. I've been thinking about and wondering where you were. Lindy
Sometimes I think about not taking them and early in my diagnosis I did not take the non essential ones for a few days (essential being the pred - I didn't fancy adrenal failure!). Lets just say I won't be repeating the experiment any time soon.
Now I've found a med combo that seems to be working I don't mind having to take them so much. Although some days it is still a shock, going from being a girl who would only take a paracetamol if she couldn't move, to having to take 4-5 different meds daily.
I hope things improve for you soon.
Hi Neasy,
I also so understand how you feel. I want to let you know that a little over a year ago I stopped my RA meds. I can tell you that no matter how bad I felt with the meds things did get much worse so I trotted back to my Dr. (with head down) begging for them back. She was really nice about it. I am still hunting for the right med combo and will never do that again.
Take care
Hey Neasy, I know how you fell about swallowing all those pills. I really hate the weekly pills (MTX, Fosomax) because I've had to reschedule countless times because I forgot to take them.
Since you already know that everyone is different when it comes to taking meds, I've never know 2 people to be on the same timeline when it comes to Remicade. I started to feel the effects after my 2nd infusion which would have been about 6 weeks. After my 3rd or 4th infusion and ever since, my RA has been under control after running rampant for 15 yrs. One other thing that I've noticed about myself and I haven't met anyone else who experiences this.....I always have a burst of energy after my infusions that usually lasts until the next day. I really have a hard time sleeping the night of my infusion but usually the energy subsides the next day.
I truly hope that you have as good of results as I have had with the Remicade. I know you've heard it millions of times, but try to be patient. It took me 15 yrs. to find something to finally get my RA under control. Good Luck!
neasy, I totally understand how you are feeling. I scheduled an appt with each of my doctors - internist, rheumy, neurologist, pain dr, and one i cant think of. I took in two copies of my meds to each appt and asked each what I could eliminate all said nothing right now. In fact one more med got added.... at least i tried. Ugh!Neasy,
This is what I'm struggling with right now, too. I feel no differently than before I started Remicade. I'm going in for my 4th infusion the end of the month. Actually, now that I think about it, I'm not as fatigued as I use to be. I don't know if that's from the remicade or not. The pain is the same as before though. But, as Linda said, maybe with the damage, we can't expect to be out of pain intirely. All I know is that it's frustrating. Take care. We're here for you.
Neasy it is hard not to grip about the number of pills when still living with pain every day.
I thought maybe Remicade helped after 1st infusion, was pretty sure after the 2nd, and it got even better with the 3rd. The 3rd one begins the every 8 weeks thing. They try to load you up with the 1st 3. So I think you should know if it helps after the 3rd one.
I really hope it helps you a lot and right away. The stiffness getting better was the 1st thing I noticed.
I feel the same way too. But when i try to wean down on any pred or nsaids it realize how much worse it could be and then end up at square one and ending up with an increase in dose or new prescription.