High all. Well my hard head & not taking the mtx has come around to bite me in the ass. My bloodwork came back last week. In the month I quit taking the sulfazine and my refusal to take more than one dose of mtx, my numbers went back up. Suprise. I hated the side effects of the mtx, but it looks like I'm starting back up again tomorrow. I'm already gearing up for the lecture from my doc. Bummed out how this disease is in control of every aspect of my life. I didn't even realize how emotional bullsh*t can cause a flare. For the first time in my life, I've busted out in hives. What up w/ that? Really? Anyone else out there a rebel like me? I question everything. What about giving up the drink for mtx? I like my wine. Damn it.
Monk320,
I have to ask. Why did you only take one dose of methotrexate?
I also take Plaquenil. I tried the sulfasalazine, but had terrible side effects with it. Just couldn't tolerate it. I kept putting off taking methotrexate because it scared me to death. Eventually, I started flaring constantly and couldn't stand it. I gave in and I've now had 3 doses, but only at 7.5 mg. I believe it's a low dose. I haven't had any side effects yet.
I never really drank much but my RD said I could have two drinks a month. I've read some RDs say their patients should limit the drinking to two drinks per week. My RD seems more conservative.
I totally agree that emotional stress can make it worse. I recently lost my father and it sent me in a tailspin! I've never had any problems with hives - that sounds like an allergic reaction to me. Maybe someone else can shed some light on that.
I agree.... Damn it. Sometimes I get downright depressed dealing with all the pain.
Monk, I really understand your resistance to the MTX. It scared me too and I resisted, but after 9 weeks I have no side effects, but I'm not sure it's working either. I take 20 mg. weekly and Plaquenil twice a day. My Dr. said I could have an occasional drink, but I've decided to be very careful with my liver and abstain completely. Better safe than sorry.
kweenb, I have a question. I didn't realize emotions could have any effect on RA type issues (I have UCTD and a high ANCA/vasculitic neuropathy?) For a few days I felt great and thought we had finally found the source of my problems, but after working a bit too hard for a couple of days and being somewhat stressed, I'm feeling terrible today and all my left-sided weakness and tense muscle issues are back. I guess I'm expecting too much from the meds. I thought once they "kicked" it would keep it under control, not just when I'm behaving myself perfectly and keeping activity to a minimum. What kind of life is that? (Better than the alternative, I guess!)
I injected my first dose of mtx and just felt soooo gross. First the Zombie thing, then everything I ate or drank went right thru me. Really, I felt sicker. Fear kept me from repeating the misery the following week. So, I'll do it for a month and see how it goes. My doc said I could drink, just not w/in the first 3 days of the mtx injection. Even so, went right thru me and made me feel awful. We are taking the same mix of drugs it looks like. How long did it take for you to feel comfortable taking the mtx? I think I've been in denial since my diagnosis. Feel like I'm talking about someone else & not me most days. Does that sound weird?
MXT side effects get better as time goes on. You have to decide which is more important - your enjoyment of wine or your life without the pain and damage of RA. No one can tell you what to do. It's your decision. The side effects get better over time and you have to make up your mind to ride them out. Some people are deathly ill and can't take MXT, but most of us can. It wasn't fun for any of us for the first month or two but you get through it because there's hope.
None of us wanted to take meds that could possibly kill us and there aren't any longterm studies to show us what the future holds. I look at it as killing myself to live.
A rebel or in denial? Being a rebel had nothing to do with my refusal to start the meds, it was all about denial. Denial caused irreversible damage to several of my joints and caused a great deal of emotional pain. So far, denial has caused me more grief and problems than the medications. You don't have to give up wine but you do have to drink in moderation. I have one glass of wine weekly. To me that's moderate. Moderate may have a different meaning to you. Just use good judgement. Lindy
I guess I 'm lucky as the MTX only makes me feel tired the next day, not with it mentally, but that's it. I have lost hair at the beginning of the 'session' with 20mtx,but I am careful and use one of those long tined combs, and am careful when I 'brush' . After color it was the worst. But it will grow back, a promise from my doc.
I hope you stick out the mtx (you could take 1/2 one day and 1/2 the next day?), My doc says it 'works better' if you take it all a once, but if you feel awful .....that's not good.
good luck with all of this and please know we've all been exactly where you are....we've just had it proven to us we NEED those meds. Lynda
Monk320,
I'm not taking the injectable methotrexate. I'm taking the pills.
Did you take folic acid too? It's supposed to help with the side effects. I started my folic acid the same day I started the methotrexate.
Jesse88,
When I was first diagnosed, I was given Plaquenil. It worked great and I had almost no symptoms. Just some occasional aches when I worked too hard like shoveling snow from the driveway. Also some aches when I was really stressed. But, nothing so bad that I needed pain pills. I think cutting back on the Plaquenil was the big mistake. I think I gave the RA an inch and it took a mile. I'm hoping that the methotrexate will eventually give me the same repsonse I orginally had with the Plaquenil. (Fingers crossed!) I can deal with the aches, but the flares are horrendous.
Hi Monk320 - I'm sorry to hear about your experience on MTX. I was on it for about a year - I didn't realize how terrible I felt until I was off of it. I had too many side effects and my quality of life was just in the toilet.
Everybody certainly has different experiences with it - and it works really well for some. I would definitely recommend giving it some time. If you find after a couple of months or whatnot that the side effects are just too much and you are not feeling good - then try something different.
It's just not good the way we have to continually try to balance what is the "right thing to do" when all of our options kind of suck. Best wishes to you and I hope you find the right combo.
Hugs,
Jen
Thanks for your response kweenb. I just realized I never really asked a clear question, so I appreciate your taking the time to answer at all. My brain is in such a fog and I don't know if it's the illness, the meds or if I'm just getting mentally lazy from being retired for the past four years. Anyway, my question to you and others is, what is your personal definition of a flare?
I think a flare is when one or more of your joints blow up, get hot and red and very painful. But not the daily aches that we all seem to have. But, I'm just new to RA too, so maybe I'm wrong.
Linda
Hi Monk320 et al,
Just wanted to tell you how much MTX has helped my RA. I've been on it for about 6 and a half years and it has helped me so much. I know this is true because a former rheum (seeing that I am seronegative) thought a temporary rise in my LFTs meant that my meds were the cause. He took me off MTX and Arava. Since these meds stay in your system for weeks afterward, I thought I was doing great. However, after a few months the pain returned with a vengeance. I ended up having a big time flare that was so utterly painful...my rt wrist swelled up and each movement brought me to tears with the pain. Luckily for me I had sought out a new rheum while the meds were still relatively working in my system. My new doctor injected my wrist with blessed relief...steroids...and he also had me resume my meds. That's been nearly 3 years ago and I haven't looked back. I did have to go with Remicade last summer because the MTX wasn't enough by itself. In combo with the Remi, I am truly doing great.
Jesse88--my personal definition of a flare is when the pain is widespread and unrelenting. When my joint swells up and the pain makes washing my hair impossible. I can take the day to day aches and pains. It's when I am not able to do "normal stuff" that I know it's a flare that has me in its hold. I used to get them a few times a year and get the Medrol dosepack to handle them. But since I'm doing the MTX/Remi combination, I am doing much better. There are some bad days with pain...but it is still tolerable. When you've already experienced the debilitating pain, swelling, and stiffness and are not able to raise your arms above your head--or brush your teeth--then just days with pain and fatigue are far more tolerable by contrast.
Molly Bee
Hi Monk,
Thanks for your responses. I'm still learning about all this medical stuff and since everyone and their responses are different, it's going to take a while to sort it all out. However, the voices of experience are so valuable. I can totally understand the resistance to mtx. Scary stuff.
However, it really works for me in combo with my humira. I inject and don't have that many side effects. Only really tired the next day. But mtx increases adenosine (an ani inflammatory we naturally produce) and that promotes sleep. So go figure.
I hope you do very well on the mtx. Always remember that we are here for ya!
Thank you Everyone for your positive words. I feel like I have my own personal cheerleading squad. Big deal, huge. Yeup, denial is not a river in egypt. It's my middle name! K, off I go to inject and take the rest of my meds. I really do appreiciate everyones input. I don't know what I'd do w/out this great site.
Monk