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NikkiNicole
03-29-2014, 03:26 AM
I do not want to take my medication anymore!!!!

I accidentally missed my dose last week, and felt better for it. Which is odd, because I was worried there was also some sort of "taper schedule" I was supposed to follow with MTX. I didn't feel any worse, I felt better. Not better in the sense of Weg's/GPA being gone, but better that I wasn't feeling fuzzy headed and lethargic with that weird feeling in the back of my throat.

Which has now only left me feeling like I don't want to take my medicines anymore. Has anyone else ever done this? Has anyone quit their meds just like that? I know that would be dangerous but ... I'm starting to think I'd rather have the alternative than this feeling.

I know I NEED to take them, and I know I WILL continue to ... I just work so many long hours, and have to be so focused while at work that I don't want that feeling anymore. I want to feel normal again.

Anyway, I just thought I would own up to my major boo-boo. :confused1:

Dirty Don
03-29-2014, 04:14 AM
We all make booboos, especially under the duress of this disease...now stop thinking about it, get on with it, you have made major improvements lately, keep making them...so saith the Dirty!!!

MikeG-2012
03-29-2014, 04:53 AM
I was on Mychophenolate, which failed for me and I had a flare, but that was a drug option for this disease. I've been on Azathioprine since October Nikki, and don't have those side effects like you described from the Methotrexate.

Is it possible to switch your meds to try others that might be a better match for you? It seems these days we do hae choices, right?

After my last flare up, I don;t think I'd be stopping my meds cold turkey--even if I did feel better stopping them. <sigh>

Talk to your doc and see what he/she thinks.

NikkiNicole
03-29-2014, 05:11 AM
I need to email the good doctor today anyway. Not for any particular reason, just to check in but ... I guess now I have a reason. It was so nice to be able to just deal with feeling fatigued and blah. At least my brain was sharp!
I'll be a good girl and get back on the horse, although just thinking about it makes me cringe.

KimH
03-29-2014, 05:19 AM
Hi Nikki, I had stopped both MTX and CTX cold turkey and I didn't have any kind of withdrawal. I did stop them according to drs orders. I would look at those blue CTX pills every morning wondering what damage it was doing to me. I had wanted to stop it months before my rheumatologist gave me the go ahead. I was too worried about flaring and becoming sicker. Will your dr work with you to change your meds? It breaks my heart to read all that you are dealing with at such a young age. I have a seriously ill daughter who is now 32 so I can understand your frustrations as a young woman and can relate because I am a weggie too. Words can sound so hallow when one is in pain but hang in there, never give up, bug your doctor and take care of yourself! Thinking of you! Kim

NikkiNicole
03-29-2014, 05:42 AM
Thanks, Kim.
The emails have been sent. I remember my doc talking about the meds that MikeG is on. She was thinking of switching me over to that because I still wasn't feeling better. So, I asked her about that again.
I've been having a LOT of trouble sleeping, so with a heavy heart, I am switching back to my full time night shift because I can't do the half/half stuff anymore. I can't seem to have a regular routine and routine is what I need.
I've been having a LOT of pain in my stomach and lower abdomen, not sure if it's related to my IUD. I would think after 6 months, the pain would have leveled off. Otherwise, why would anyone tolerate this damn thing!!!
I'm anxiously awaiting what the doctors say.
I am trying desperately to hang in there.

renidrag
03-29-2014, 06:17 AM
You can hang in there, you have to, "so saith the Dirty". Can Batman be far behind? Me? I don't have the words of the Dirty nor the power of Batman, but will be hoping this works out for you soon.
Dale

Deborah T
03-29-2014, 07:23 AM
Hi Nikki -

It has been so long since I've felt "normal" that I can't remember what that feels like. I hate medication too.....and I love medication. I can't imagine where I would be without it. Work with your doc. Mike is right, maybe there is another drug that is a better fit for you . I take my MTX subQ weekly every Friday night to avoid the s/e while I'm working M-F, 9-5.

Also, one thing that helped was cutting my hours at work from 50-60 hour weeks to 35-40 hour weeks. My bosses understand and would rather have me work a regular week than leave. This has helped considerably by decreasing some of
the work-related stress in my life.

Whatever you decide, I hope you find comfort.

Blessings -
Deborah T.

NikkiNicole
03-29-2014, 07:50 AM
I'd love to have a set day that I can take it without having to factor work into it. Unfortunately, I'm in shift work and I'm an "on-call" person so I can be called in at any time. So, it's something I need to learn how to live with. I'm waiting to hear back from my doctor so I can make those changes.

woz
03-29-2014, 03:48 PM
Hi Nikki,

Its hard to feel normal when you combine work that is demanding + wegs, I have had a few aches and pains lately, and like everybody else, I have wondered is it the wegs, the medication, or the job I do. I work a reasonably physical job, 5 days a week, and before wegs, had no problems, Now I have a few aches and pains, that are unknown, so the doctor tells me, my bloodwork is great, dont worry about it they tell me. So I decided to go off my meds for a week(now back on them, better the devil you know, than the one you don't) I am not prepared to go backwards, I know I have to take my meds, or risk going back to the start again. I felt a lot better, (drug free), a lot more get up and go, not as many aches and pains, so the next time I see my doctor, I am going to try and get a change in my meds, I am currently on azathiaprine, for maintence only. I am not suggesting for you to try this, because each of us have a different cocktail of wegs, what I would suggest, is to talk to your doctor, and see if other medication may be better for you. You might have to look at work that is stress free, because your health comes first. I know work all around the world is hard to come by, but your health is the most important thing, and you have come a long way, and I am sure you don't want to go back to square one again. Just keep doing what you are doing, you are improving, YOU WILL BEAT THIS.

Regards Woz....

Alysia
03-29-2014, 06:33 PM
https://scontent-b-lhr.xx.fbcdn.net/hphotos-frc3/t1.0-9/1964875_1478887958990016_2064136814_n.jpg

Alysia
03-29-2014, 06:35 PM
You can hang in there, you have to, "so saith the Dirty". Can Batman be far behind? Me? I don't have the words of the Dirty nor the power of Batman, but will be hoping this works out for you soon.
Dale

you have your own special power as well, Dale :wub:

Melly
04-11-2014, 10:15 AM
I went off of my Azathioprine against my doctor's advice in December, and I have no regrets. I am not advocating this for you, because I don't know your situation, but it was the right choice for me. I feel like a new person. I have so much more energy and am happier in general. I don't feel dizzy or nauseated at times anymore. But I was in a healthy place with my WG at the time. I had been on AZA for around 5 years and had no flares, just lingering sinus issues that I suspect will last my lifetime.

As with anything, don't make any rash decisions. Think how far you've come and the progress you've made. If you feel like you have a bit more road to travel until you're in a good place, play it safe and stay with your meds. :)

NikkiNicole
04-11-2014, 12:06 PM
My doctor wants me to have a phone appointment with her to discuss switching to AZA. I don't want to switch to anything but NO meds. I know that's probably not possible. Although, on some days, I think I'm not as bad off as some people and should not be on anything. I'm one of those cases where it's not "keeping me alive".
I've become rather jaded about my sickness, and have moments where I want to ignore it and pretend it's not there.
I haven't had that appointment yet since I haven't been off work enough to make that call. Ugh.