Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hello...how are you.....(no I'm not going to start singing Telephone Line) Been a while since I been here. Don't like the change all that much but I need support as we all do.
I take my 1 ML injection on Tuesday mornings. I do pretty good all day Tuesday (thanks to doc upping my Folic Acid to 2 mg a day) But come Wednesday's and I HATE LIFE! I do have to say even Wednesday's have got better, although still feel like I'm getting over a major flu. I'm tired, unmotivated and due to life circumstances very depressed today. But some of you will get it.....come Thursday, I'M FREAKING NORMAL AGAIN!
My Mom use to tell me after you give birth you foget the pain and that's why you have more kids. If you remembered the pain we'd have no population, lol. That's what MTX is like. You really forget how bad it is until it's Tuesday, injection day. Buy byGod do I feel wonderful all the other 6 days. I haven't had RA pain since about January-February this year. Diagnosed November last year. But upping the FA really has helped my Wednesday's. They are not quite as bad. I'm just tired rather than sick and ill feeling and feel like I'm a zombie. That "moving under water" feeling.
So tomorrow is a new day and a new me. It's tough running a business like this (self employed) on these terrible wacked Wednesday's. I don't want to see, talk or communicate with anyone. AND to top my wonderful day off I have a doctor appointment today with my PCP due to some issues I'm having and next week the first Gyno appointment in years. They found Cyst on both ovearies and I am menopausal. Had an ultrasound done...now to see a Gyno.
I do tend to tire a bit more easily. And I had to stop my hormones until I see the Gyno. I need my Estrace due to pain and I have testosterone on hold for my sex drive. Ya kow, the stars and planets all have to be aligned just right for the world to be okay. Lately, it sucks. There's not a lot of will left in me. Not a lot of support either. According to family I'm a B*tch all the time. The funny thing is I'm not. I get accused of having attitude but mostly because I don't talk to them. They don't talk to me and if they do it's never nice. Family can be mean. Last time I asked my daughter how was work all I got was, "Fine." and then I asked how you feeling?" and all I got was fine. Not much conversation in that huh? I miss my my best friend of 38 years. She passed away lasy June at 49. She was "my Person" if you know what I mean. Anyone watch Grey's Anatomy? My best friend. Best friends just don't walk into our lives everyday. They are few and far between. The kind that only come about once in a lifetime if you're lucky enough. I've told my family I still cry and miss her and get negative reaction like I should be over it. I will never be over it. I always hear husband's and wifes say they are best friends. How? If you want to share some grand moment or acheivement you get a shrug or a "that's nice" and no more conversation. I'm a conversationalist. I love being social.
I just needed to get this out. I'm having a rather low day today. I rarely get depressed. But as I said.....no will......
Why? Because it drives home the point that life is full of compromises, When I was taking max dose MTX on Monday nights [I take minimal dose now because I also take Humira], come Tuesday night I would start to feel yucky. Wednesdays I'd be dragging and mildly nauseous.
But never badly enough that I had to take a day off from work.
And then Thursday would come and I'd come back! Life was good again.
Isn't that a cheap price to pay ["down" about 24-48 hours] so that the rest of the week can be good?
So let's all shout it out: I hate Wednesdays, but it's so worth it!!!!
Switching to injections made a huge difference to. But I still have the Wed trotts!lol
Worth it! Heck yes!
Were you ever on the pills? If so, how was that for you?
I'll shout it from the rooftop: the price you pay....IF you have side effects.....is well worth it.
Not to make you feel badly, but I take 7.5 mg MTX and Humira and I have no symptoms whatsoever.
I pay $10.00 for a 2 ML bottle. My insurance won't even cover it because it's cheaper than the co-pay.
Great you have no symptoms.
Grief is stress! And RA and meds and a family that isn't there for you and no wonder you posted this! I wish I could give you a big hug!
As for mthx, the big news amongst Canadian rheumatologists, I found out last visit, is that no one really absorbs the oral well. As for me, I am looking foward to starting mthx again in Oct. And reading about doses, I've been panicking about my liver. But with Orencia and Arava, I might be able to take a much smaller dose to get better control of my RA, and hopefully my hands and feet, and not have my liver going into crazy liver enzymes!
Now that is hope!
See, your post helped me. As for you, sorry that mthx made you sick. I never had that problem after the first 6 weeks. Just the liver freaking out constantly! Sigh!
And as far as MTX ....I wouldn't doubt the absorption thing. I am so glad I could help Marlene.
And FOR ALL YOU NEWBIES TO MTX......Yesterday was my "day after" where I typically feel like I do when I posted. But as the day goes on I start to feel normal again. You want to know what I did on my "MTX day-after" day? I went out at 5:00 pm, after work, and hand cleaned with my horse manure fork a 1/2 acre of almost 2 months of manure in the turn out. I clean stalls every morning but my husband does the turnout every couple of weeks. He fractured his shoulder Aug 7th and really can't do a lot. He is actually still working and does not need surgery. So I went out last night with 3 buckets and filled them and hand walked them all to the dumpster that was empty (a 1 1/2 yard) and filled it to almost the top. Took about an hour and a half but it was Zen for me. It was cool and breezy and my horses were all around me. Only mistake I made was wear the boots I keep outside I use every morning but takes less than 30 minutes to muck and feed etc. All my boots have Vionic inserts but those. My feet hurt (not real bad) last night and this morning. Now I'm back in my Vionic flip flops and they feel normal.
So there is a light at the end of the tunnel. Not a train! But again what works for some may not work for another. But give MTX a chance. A lot of people give it up I think in the early stages due to the side effects. They can be bad but they disappear. Give it time. It took doubling my folic acid to make me feel better. I've been pain free most of the time. Sometimes you'll have "background pain"...you walked more than you should or cleaned your house for 8 hours straight, maybe slept with your hand balled up under your pillow but nothing hurts as bad as before the MTX and diagnoses.
Plus, I usually get my next month's doses the week before the box is empty, meaning last week. Well, I phoned the pharmacy, mentioned today being Wednesday and the pharmacist gently corrected me that it was Thursday! The shot was out, but now I know why I felt so lousy yesterday and last night and today!
The pharmacy had not received the prescription for the new order from my doctor. I reminded him and the receptionist that a paper prescription was going to my local pharmacy, not the company that carries the drug. And therefore, to fax it to Drug Smart.
Nope they hadn't received it, and didn't bother to phone me to mention this, or ask if I was discontinuing Orencia. Thanks, both ends of this fiasco.
The point being, is that I am not on top of things. The mistakes I have made with paying bills, not taking the drug on the right day, leaving it out too long, not phoning last week (the prescription was to be faxed by the local pharmacy since I caught this!)
So, I am not doing well! And not on top of things to prevent these stupid mistakes or neglect by everyone concerned. Sigh!
But so happy you were able to get things done, and felt so good! I ride a bike, but it is so hard to do, with flares, my knee not working well, among other pain. I did get on my bike on Tuesday and somehow pushed myself to do 15 km. (About 10 miles) It was pain, exhaustion and sheer torture! But I felt so good during and after. These activities we treasure are so important to our mental well being. I am struggling so much today, and it is just a beautiful fall day. I was supposed to ride again today, but seeing as typing is sending me over the top, I think it is a non-starter today! Sigh, again!
I think the biggest issue when we are so affected by our RA is the "I just don't care" attitude. I think we all struggle with those days when you forget things and don't care. Staying on top of things when you feel unwell is hard to do. Those days we feel like lumps.
I've also neglected medications or kept tabs and paid the price. I'm on so many now I need a bigger pill holder.
I been having physical issues and I put calling the doctor for so long because I'm not on top of things. I had an ultra sound (twice) because they found cyst on both ovaries. Next Wed I go to the gyno. Then when I'm doing labs yesterday the woman at the lab says I have a test in the system I haven't done yet. I ask what? She says a CA test. I ask what that is and she says cancer. WHAT? I guess due to the ovaries. Then today I took in a stool test (that was a first) ugh. I have referrals in for a stomach ultrasound, colonoscopy and an endoscopy. She also is doing blood work for my pancreas. But heck...My liver is perfect! Sheeeesh. The losing weight for no reason and nausea finally got irritating enough to make an appointment. Doctor looked at me and said, "When your body is doing all these things it's trying to tell you something so listen to it" I guess I better.
I hope you feel better and get your meds straightened out.
My point is, with RA, it doesn't matter WHO you are or WHAT you do, or HOW MANY hours you work........RA does not discriminate.
Oh bummer, I should call it a day and go for a nice walk with my dog.
RA does not discriminate. It's not even the pain or inflammation anymore as much as you don't feel like you anymore. There are day's I want to give up and call it a day.
Oh bummer.....I get it. It's only 6:25 AM and I want to call it a day and get on my horse.