What would you not do again? | Arthritis Information

Okay everyone, fess up … what have you done that you wish you hadn’t? RA-related tales of course. Here’s my “Don’t ever do this” story:

For not particularly brilliant reasons I chose to miss 1 dose of MTX. That 1 ended up at 3 doses from bad planning and travel complications. Now, here I am, 2 ½ weeks later with only 1 dose of MTX in me and I’ve gone from near-remission to a getting worse by day flare.

While I missed the doses the MTX in my system kept my symptoms at bay. Now, as it’s building up again, I’m having the worse flare I’ve had in months. Dumb, dumb, dumb.

Oh, and of course, there is no guarantee that I’ll get back to the great state I’d achieved before. Did I say “dumb”? Anywho, mood is fine, but noggin’ in sore from banging the palm of my hand against my forehead whilst saying “D’ho!”

So fess up, what have you done that you don’t recommend to others?

Joy39232.7929976852Hi, I had a serious operation and didn't have a clue , nor did any of my doctors, what that would do to my RA. If , i had it to do over again I would have had very specific plan about pre-op., post-op., etc. I was in so much pain I can't even tell you. None of the doc's knew what to do. In my case 'the heart needed to heal', so no MTX, or Remicade for 3 months!! ONly prednisone saved my life. SarahI couldn't open my shampoo with my hands, put the bottle in my mouth and used my teeth. Joke was on me, broke my tooth and needed a crown. I would have been better off shampooing my hair with soap. Never let your flare go too long without calling the doc to do something about it. That was a costly one to learn. Got my hospital bill from when I was in the hospital. 00.00!!!! I only have to pay my co-pay part tho of 0.00. Whew. I tried to go to work today when I knew something was wrong. I have a 6:50 am class I talked myself into going since no one is around at that time to let the students know I wouldn't be there. I almost go through the class all right but I could barely stand or even sit. I started shaking so bad and I must of looked bad too because my students started to look worried.

I went back to my office and my supervisor took one look at me and asked if she could drive me home. I let her because I was in so much pain and shaking from it. It would have been much better to call in sick. I have not moved from my chair all day.

Of course I brought home papers to grade

Joy~At least now you know, right?

When I was on Humira I learned a lesson about taking your meds while you have an infection. I was almost well; but knew I wasn't completely well but didn't want to get too far behind on my meds. Well the following week I was twice as sick and that illness went on for about a month. A month without any of my RA meds just because I didn't want to wait one more week so that I was completely well. It took me several months before I caught back up. That mistake taught me that when they say not to take your meds when you have an infection....there's a good reason why.

Cool thread Joy.

Thanks, everyone! These are the types of things that newbies and oldies alike can learn from. And yup, I definitely know now!

More tales out there?

ME? noway.......lol

I am still thinking...........it takes me awhile sometimes.

Mine was taking on a new full time job, after 6 months or so of doing pretty well - I decided I would take a sitting down job - a computer call centre job, with a 12 week intensive training.

I knew I was going to be in trouble after the first 4 weeks, but persevered and that was my big mistake. I carried on for about 5 months - and then had my first flare (or relapse) as my RH. told me.

I was off work for three weeks, then RH said - ditch that job pronto.

It took me a further three months of pain and tweaking meds before it stablilised. Silly me!! Thought I was Wonder Woman. My first lesson.

Tomatoes, potatoes, bellpeppers,eggplant, etc. all night shade veggies, beware! of them. My doc said, 'no way' that these veggies would not bother me, so one summer I ate a lot of them, WElllll, I had the worst flare you can imagine. Now, I'm back to no nightshade! SarahWish I had a funny story to tell, but I haven't been dx'd long enough I guess. Great thread!!! I wish i hadnt ignored the RA in the first place, I thought if i pretended i didnt have it, it would go away

Moral of this story - remember your limitations, no matter how much of hurry you're in!

I would have gone to see a Rheumatologist alot sooner. I knew something was not right, but I kept blaming it on sports injuries from being a triathlete. It took me until I couldn't get out of bed or sleep at night because of the pain before I finally went.

My rheumatoid factor was 479 and I have erosions on my hands and ankles.

Thankfully...it has been exactely one year since I was diagnosed and I am back to feeling 99%. But I now know not to ignore your body!!!

Jen

Great thread!! I don't have anything to add, but I'm learning a lot.

Phats

Hey Bingethinker,

Just curious. What was some of the "crap" that the doctors wanted you to believe?

Well, hind sight is 20/20 but, I wouldn't have gone to work at my job (which I loved) where I was walking or standing all day on concrete floors. I worked in a fabric dept. of a large craft store, and I cut fabric all day, lifted heavy bolts of fabric and generally used my hands my entire shift. I went from functioning pretty well ( my hands had been hurting for a few years but I could always stop what I was doing when I was at home) but after 7 months at this job I had pain from my neck down. A lot of it is OA, but RA is in my hands and wrists, so far. The up side was I was able to keep my weight down with no problem, 117. I've gained 20 lbs

Oh, there are sooooo many, I don't know where to start. Guess I'll start at the very beginning.

Let's just say ignorance isn't bliss. I ignored RA 6 months after I got my first diagnosis and got through the initial onset. Apparently, it's common to have a severe onset then go into a false remission. That's what I did and I had damage done over a 4 year period that can't be helped medically. I went into denial. It was so much easier to accept. Don't ignore the signs and for the newbies start treatment right away. Don't wait.

I wish I had started MTX much earlier instead of the treatment that I was on. I didn't listen to my body and didn't keep up with my xrays. I waited almost 10 years to start MTX adn wish I had been more aggresive with my treatment.be born...

[QUOTE=hurts]Hi, I had a serious operation and didn't have a clue , nor did any of my doctors, what that would do to my RA. If , i had it to do over again I would have had very specific plan about pre-op., post-op., etc. I was in so much pain I can't even tell you. None of the doc's knew what to do. In my case 'the heart needed to heal', so no MTX, or Remicade for 3 months!! ONly prednisone saved my life. Sarah[/QUOTE]

Can you elaborate? I am seeing a rheumy next month for the first time, because I had major hip surgery (surgery numbers 13 and 14 ) and that's when all my symptoms really kicked in. I would be very interested to know more about the connection.

This is an easy one for me. When my rheumy first put me on Methotrexate I was as sick as a dog. I hated the stuff. Eventually I went into remission and was doing brilliantly, so I convinced myself I didn't need the methotrexate and stopped taking it. within about 6 months I was limping, within about 9 monts I was in BIG trouble. took about a year to get everything under control again and had to double the dose of Methotrexate. Never, ever, ever, ever, stop taking the methotrexate. Anna_uk

I had this disease for 15 years before a RA offered me a dmard and explained why I really needed one. He started me on gold in 1986 and I had a bad reaction in 87 which lasted for an entire year.

It was 6 or 7 years later before I got brave enough to try another dmard.

I sure wish I had not had such a horrible reaction to gold or that my doc had recommended MTX which was available (but newer) at that time.

Yes, I wish I had started mtx when it was first suggested and not put it off for 4 years, and I wish I had not ignored flare-ups etc., and pushed myself to carry/push heavy loads throughout and basically been in denial about having RA because I'm sure a lot of the damage to my joints could have been avoided or at least delayed. Its so hard to stop yourself doing what you want and accepting you shouldn't do things even when you still feel able to. By the time you actually can't because its too painful to bear, its too late.

All I know about operations and medication is that mtx makes you more liable to infection so doctors have to be aware, but I never stopped or reduced dosage for hip replacement or elbow. If you are on anti-tnf then I think there is more of a problem and that might have to be stopped before operation.

Thank you. I do appreciate this thread and, as someone posted, please elaborate about not listening to all the "Crap" that the doctor told you. I'd like to know what you might not listen to after you are experienced at this. Thanks again.

Oh, and as a newbie I commend you all on your good memory. RA hasn't touched that. I feel everything that you all posted. EX: I don't have RA, they made a mistake. I'm in remission now cause I don't hurt that bad. I don't need the meds as they are toxic. On and on. The more we are different the more we remain the same.