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I unexpectedly found out I needed surgery on my back on a Thursday (surgery was performed four days later on Monday). I was due to take my heavy duty meds on Friday, but was told to hold off until after surgery, so I waited. The Friday after the surgery, I wasn't feeling all that great and thought I had better wait to take my RA meds. Enter week 3 without my meds and I am having complications from the surgery and my need to have another procedure to fix the problem next Wednesday. This means that by next Friday I will have gone a month without taking Plaquenil, MTX (22.5 mg) and Enbrel.
Remarkably and gratefully so, my RA has been laying low throughout this. Here's the kicker. I actually feel better not taking my meds than I was feeling while taking them. I almost feel like maybe the meds were making me feel worse. Does this sound weird?
hi graciemum sorry to read about the surgery
Yeah Boney, I've never had to be on prednisone (other than a medrol dose pack a couple of time for my back) so I have always considered myself lucky. I was sero negative when diagnosed and tested positive for anti-ccp, but it was on the low side of positive.
Doctor said it was mild ra when diagnosed, but with each passing month I felt worse and worse, and we kept layering on DMARDs. It was in the last couple of months that I felt we were finally making progress and that was when I upped my mtx and had been on Enbrel for about 2 months. Unfortunately I still had those foggy days. I have not been foggy since being off the meds. I'm probably kidding myself to think that maybe I don't need them. Oh well, I guess I should be happy that I am not in one big flare up yet...
hi gracie mum you say you are lucky not to have pred but that
is a pwerfull cocktail of meds you are on..sometimes i really wonder
about these wonder drugs. a person would think at what they cost
they would work alone.. sorry rambling on your post...
who knows maybe your ra is knocked out
I'm wishing and hoping that you don't need these drugs anymore, but I suspect they just haven't left your system yet. According to my RD, it takes a while to feel a lack of MTX and Plaq. (Don't know anything about Enbrel). When I told him I feel it within days of missing a Plaq. dose he said it means it was barely doing the job then. In your case, the meds may have been keeping things well under control and you won't feel the effects of those missing meds for a while. I sure hope I'm wrong. Please tell me in a few more weeks that I was dead wrong and that you're still feeling great. I really have no experience with it myself-it is too new to me and have never been off. I have read posts on some forums though where people went off their meds, felt good for a year, sometimes more and then the RA came back with a vengence. Then it was hard to get it under control.
I don't know what's worse-using the toxic drugs for that time span when you could have gotten along without it...or if you weren't using them was the RA quietly doing it's damage because you were not? To top it off you have to start off at square 1 with getting it under control.
Well, what I'm wondering is if the meds are making me feel worse? I don't think that I don't need them, but having been off of them it makes me wonder if part of the reason I was feeling so poorly was because of them? Does that make sense? I have never been to the point of feeling like I was fully under control while taking them. The fatigue is pretty constant, but my pain has been better. I guess time will tell. I am going to keep taking them. Maybe my back has been a source of more things symptomatically than I realized. I couldn't believe it when I had feeling in two of my toes that I hadn't had in 5 years. I've had several steroid injections in them too (ouch!) that always helped. Such a mystery. I am the type of person that likes to know the wheres and whys of everything - so you can imagine that this disease is driving me a bit bonkers in my quest to figure everything out.
wanttobeRAfree I missed your post as I was typing mine... You summed it up quite nicely. And that's exactly right. What's happening to you that you can't see? When I had my nuclear bone scan when I was getting diagnosed there was arthritic uptake everywhere. My skeleton was completely lit up. I didn't have pain everywhere though, just mostly my hands at that time. What if I had listened to the other doctors who didn't bother to do a bone scan; the one's who said nothing was wrong? Another year would have passed with all that inflammation in my body doing who knows what... It's hard to just settle in and accept it and let things fall where they will. So much is beyond our control and that's hard for me.
Hi
I was off mtx and enbrel for 3 weeks this past spring for flu/sinus infection. It didn't seem to make the RA worse, but it did slowly start causing issues by the time I started back up. I've been back on both now for 6 weeks and while I'm doing well, there is more achiness than before - I wonder if it's just taking a little longer to get back up to speed. While it's tempting to think you may not really need your meds - it's probably just not hit you yet.
Hope your follow up treatment is successful - rest up and take it easy.
graciesmom...I definitely think that any of the DMARDS can make us feel worse. You absolutely could be feeling less 'foggy' and generally better without them.
However, at this stage, I would agree that they are probably still in your system since it takes about 2mths for MTX and 3mths for Plaq to kick in.
It will be interesting to see where you are at once your back situation is sorted, in terms of DMARD use but also in terms of RA symptoms once the back is dealt with?
I often wonder with any of it is working and worth it...and am sorely tempted to pull myself off the whole darn lot of it...ARGH!!!
What stops me is that I do remember how I was before my first DMARD...extremely crippled and barely functional...
Most importantly, follow your instincts...in this process you are going through. That is absolutely essential.
I've noticed that for me the RA lays low post op, even when I've been flaring going into the surgery. I think its a combination of things..first of all the immune system has something else to worry about, we are generally vigilant about taking our post op pain meds and we are doing a lot more resting as we recover. I know that more than once I've postponed restarting my RA meds post op because I'm feeling good..I usually regret it
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