Hi, Lisa,
I felt like I was getting a cold or sinus infection yesterday, and I was so depresseed about it. The thought of not being able to take my Humira shot was almost terrifying. Luckily, the "cold" or whatever is subsiding, so I should be able to take my Humira on schedule.
I did skip just one dose of MTX once because my stomach was not doing well at the time. I take my MTX on Friday nights. By the next Friday, I was looking foward to taking it. My hands were stiff...actually I felt stiff all over. I used to wonder if it really did anything. I found out that it does work when I just skipped one week.
Hope you are doing okay now.
Blessings,
V
This happens to me every time I get a cold from one of my kids - my body can't fight it because the meds I'm on (Enbrel and Methotrexate) suppress my immune system, so it becomes a sinus infection. I have to go off my meds and take an antibiotic. Sometimes the first antibiotic doesn't work so I have to take another one. It may be weeks before I'm able to go back on my RA meds. During this time the pain, stiffness and swelling of RA slowly gets worse, AND I get a yeast infection from the antibiotic! Finally, when the infection is gone I can go back on my RA meds. I usually start to feel better the next day.
So sorry to hear that you experience this as well. But it's great that you begin to feel relief as soon as the possible after you start back on the RA drugs.
My doctor and I have finally figured out that I usually need two rounds of antibiotics to get rid of infection. I haven't developed yeast infections as a result, but this summer I experienced something new. Hairy tongue. It was gross! But easily remedied (thankfully).
Hope you continue to do well.
Thanks for replying to my comment :). I've never written on a forum before so I was a little nervous. It's great to "talk" to other people that know what I'm going through.
At this point I've been off Enbrel and methotrexate for 2 weeks and I feel like crap. But the cold is going away and didn't turn into a sinus infection or pneumonia, so I should be able to go back on them in the next few days.
BTW - what is a hairy tongue?
So glad that your infection didn't get any worse. Hopefully the drugs will kick back in quickly. A "hairy tongue" happens when the cells on top of the tongue grow longer than usual. It's really kinda gross, but in my case it was solved by extra vigorous brushing of the tongue for several days. Easier to get rid of than thrush.
I had no idea. I am so glad I read your article today! I know I have gone off the Enbrel injections for antibiotic treatment, but no-one said anything about the methotrexate!
I went off the Enbrel & MTX about the same time as you did while the neurologist was investigating my MS-like symptoms. My RA came back very fast. I know my rheumatologist always shakes her head when I say how quickly it returns and explains it takes a few weeks for it to clear & symptoms to return. However, like most informed RA patients, I know she's nuts and doesn't have a clue! LOL.
This was the longest I have been off the drugs and I was very disappointed at my body at how bad it got. I must have been delusional thinking I really wasn't a "severe" case as the doctor once told me. Oh yes I am. I was down to hobbling and unable to lift my arms and my hips and ankles became unusable. It was frightening, but I probably needed a good shaking up like that to respect my treatment a little more.
The doctors are talking about Rituxan for me too, and somehow I thought you got out of taking MTX with it, so it was good to hear from you that is not the case.
Thanks for all the very helpful information! I truly appreciate it!
Kay
Hi Kay!
I'm so sorry to hear that your RA really is "severe". It's so easy to believe that it's not really all that bad when the meds work and it doesn't seem that bad.
Hopefully getting back on methotrexate and maybe trying Rituxan will work for you. I was thinking back in time and realizing that my quality of life has improved a great deal since switching meds two years ago.
Remind me. What has been the result of the tests for your MS-like symptoms? I'm researching for a post on neurological symptoms in patients who have taken anti-TNF drugs. It's a very interesting topic.
Lisa
Same here...my rhumy has never mentioned not taking methotrexate while on antibiotics..I've had to reschedule my Remicade infusion, but he has yet to mention that I should stay off the "meth", and I recently had to do 3 rounds of antibiotics to get rid of a sinus infection. I will mention this to him at my next appointment, for sure. Thanks for the info
I really liked this post, Lisa. ""The fear of not finding relief becomes so great that it is hard to look at." Oh, yes. Recognize that one. Fear so big it's more like terror.
This summer was also time for me to revisit the place. I had to cut down on Humira and/or skip doses quite a lot - I had a flu in June that never really seemed to go away. Part of the exhaustion that made it necessary for me to go on sick leave was doing way too much, but it turns out that it was also a flare. I'd forgotten how tired RA makes you. It's a miracle I ever got anything done before the Biologics. Anyway, I finally started wondering if maybe the exhaustion was related to a bit of a flare - because it also took me a long time to figure out what was going on - and the pain in my right knee was telling me that maybe it was. So I got a normal Humira dose, damn the flu-related consequences, took a nap and woke up feeling like myself again. I still have to "fill up" on Humira and getting a cold last week so I had to skip dose didn't help the process, but... now I know what that kind of tired means. Scary stuff.
We are both very lucky people that we respond to the medication.
I take it you're all about the foot rubs again? 
Oh, absolutely, those foot rubs are back on!! I know exactly what you mean about forgetting about that RA fatigue until it has crept back in. So glad that you were able to feel like your normal self so quickly after getting some Humira back in your system. Sorry that you had such a rough summer, but glad that you are feeling better.
Yay, for drug responders. :)
Wow, thanks for bringing this to our attention. I would have never known and my Rhumy never mentioned this to me. Pretty scarry when a fellow patient is the one to learn this from and not my MD.
That is why this forum is so important.
Thanks again. Have a pain free day.
Julie
Hi Julie,
I'm just glad that my rheumy told me this and I can pass on the information. However the first time I needed antibiotics (while being on methotrexate), I didn't know this. It was when I reported the typical "what has happened since our last visit" info that my doctor asked if I had skipped the MTX. When I said no and asked why, that's when she explained it and made sure that I never forgot!
I am learning so much from you, Lene, and Kelly Young--no doctor has ever once told me there was a problem with combining antibiootics and methotrexate, and God knows, I have been on them many times. I'm realizing how very little education I have gotten through the years (55 of them) from my docs. It really angers me. I will see my rheumie Friday and I have a lot of questions for her, including maybe "Can I make an appointment with your new partner next time?" and " Does she know more than I DO about my disease?" ;)
It makes me sad to hear that the doctors aren't telling their patients some of these important things. Hard to know if it's a lack of knowledge or awareness on their part or if it's just lazy doctoring.
But the knowledge which comes from this amazing community is exciting to witness. I learn so much from every member. Sharing our experiences is so very important and it proves that even the little things can be significant.
I hope that your appointment goes well on Friday. Please let me know what your rheumatologist's responses are to your questions. ;)
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We always called it a medicated remission and I've spent lots of years in one! :) Unfortunately, that hasn't been the case for a bit.
I was off mtx for about a month and a half and I've now taken 4 doses so I've been back on it for a month....my rheumy told me 12 weeks before I could expect "results." (I hope he's lying!)
That's the one bummer about the biologicals and mtx, infection means stopping and sometimes just a few days can make a difference. I would think if I was in a medicated remission I might be pretty freaked out at the idea of taking a chance stopping my meds, too.
Looks like we're both pretty normal! :)
Hi Melissa,
I'll be happy to take a medically-induced remission anytime. :)
It doesn't seem to be fair that we might get sick (ie. infection) and then have to let ourselves get sicker (no DMARDS for a bit) just so that we can get well in the first place.
I hope that your methotrexate begins to kick in sooner rather than later. Hang in there.
And yes, it's good to know that we are "normal."