I took my mtx last night. Only slept four hours. Today I felt gradually worse all day. ALL of my joints hurt, my feet were on fire, toes and hands swollen, hard to raise my arms, butt is killing me and hip bones. I got so depressed. I really don't think this is any quality of life whatsoever. I promise you guys, if this is what living with ra is, it is very hard to look forward to life at all. Please tell me again, I know have read similar posts, but I need to hear that it is going to get better. This is more pain than I can stand. I cried all afternoon. Told my honey we had nothing in common anymore as the person he used to be with, is gone. How depressing is that? Tomorrow I am going to rheumy. I may go to a clinic tonight. I have taken five darvocet throughout the day with no relief. I need something stronger. My skin is also sensitive and I feel itchy. This has been the wierdest day yet of ra for me. I will take the exhaustion any day over this kind of pain. Been on mtx going on four weeks. I sure hope it works for me, I am getting so impatient. There, I vented. I don't know if I feel better but I don't want to pretend. Please, let tomorrow be a better day. My whole life, my joy has been being physical and how that feels. I feel robbed right now.have you tried humira? i was on everything from anti-inflammatories to steroids and nothing helped me and i too was at the point of feeling so down that i couldnt take it anymore so my dr gave me humira and i feel so much better now. i actually feel pretty normal. i'm pretty lucky because i have no side effects and i'm up and around like i used to be before it hit me like a ton of bricks. i'll be praying for you.
them
I know it sucks, and I know it's hard to keep going when all you can
concentrate on is the pain. I have no words of wisdom to offer, just my
support and positive thoughts. You're still the same person your honey met,
and I'm sure your honey knows this. Keep your chin up, you're such a warm,
friendly and welcoming person. I'll be thinking of you *mwah* :o)
so sorry, Roxy. This disease can so easily get you down. You sound how I feel some days and like you , Ive had 5 doses of Methotrexate and on the day after I take it Im worse than ever!! Gonna ask my RA nurse why that is and I'll let you know what she says.
Take care
Marie x
Roxy~I'm not sure I have any good advice for you. Like Lisa it wasn't until Humira that I really got my life back. We upped and upped my MTX dose until I was at 22.5mg and then added Humira. Even that took three months to work, and even then after 6 months I switched to weekly.
I know you're struggles all too well. I hope the RD can have some good suggestions for you. No one can promise you anything; you know that...but you should be able to substain a better quality of life than you are now. Hang in there. I can hear in your words how difficult you are having it right now.
Try not to push Brett away with your comments right now Roxy. I know how you feel; but you have a lot to offer a relationship even with your limitations. Studies also show that those of us that have a loving caring partner do far better than those that do not. You need him and whether you believe it or not right now, he needs you.
I wish I could help you more my friend. I'm here if you need to talk.
Lovie
I'm so sorry about your difficulties right now, Roxy. But like lovie said, and others, you are a warm and wonderful person. The limitations can't change who you are.
My joy used to be doing physical activities with my girls, like riding bike, shooting hoops, playing softball, going on hikes, etc. All that has been taken away from me. At first I felt like you do now. Then I learned to adjust to it, and now we do other things together that I enjoy just as much.
I'll keep you in my prayers.
Cris
Roxy, my prayers are with you. I hope you feel better soon. I know it's hard, but don't let the RA beat you down.
Maybe you are having a reaction to the mtx. I'm on 20mg a week now and it wasn't until I started this dosage that I added nausea to my list of side-effects. It is my understanding that most RA patients only take about 7.5mg of mtx a week but I have also read on this message board that lots of us are taking more than that. Big hugs!!!
Ya know, I was on all that medication MTX-prednisone-oruvail-enbrel-
vicoden -relafen and alot more i just cant remember them all. But I sat down and really thought about it and I started to slowly ween myself off of this stuff. I realized that MTX was making me feel worse when I took it. I felt achy, tired, draggy etc. I was on 22.5 to begin with then the doctor took me gradually down to 12.5 I started to notice how much better i was feeling. Well, I was also on 10 mgs of prednisone and now im down to 2.5. I recently stopped the MTX completely and now I feel great. I am still on the Enbrel and take 1 vicoden whenever needed. I go back to my rhuemy this week and she will take me completely off prednisone I dont know how some others feel but I dont think it's neccessary to take all that medication cause it can make you sicker.
Roxy
When i started MTX i also didnt feel better.. but i have been on MTX for about a year, maybe more, and i am feeling good again. I also added Ebrel in February. I am feeling pretty much normal or as normal as possible. I am on 25mg MTX a week, hopefully going to come down soon...
I telling you this to encourage you to keep on truckin! it takes a little time to get it in your system and working. I read youve taken it for 4 weeks. please give it more of a chance!
Ive been where you are, only alone, not with a good guy. Dont give up! it can only get better!!!!!
It takes up to 3 months for the MTX to kick in. Things at times do get worse before they get better. But it will, i promise. All of us reacted differently to the MTX. But once it kicks in...you will feel the difference.
My rheumy adjusted my doseage until it suited my body. She also added mobic and sulphasalzine. I feel much better.
Now...does that mean I feel at 100% all the time...HECK NO...
But...I take each day in stride...and you will also. One thing that has helped me is to NOT LOOK BACK! Yes...I was a professional dancer and singer before this came on me. And yes...there are things I will NEVER be able to do anymore...BUT Honey...Look at what you can. You can still hug that HONEY...SWEET THING of yours...
YOu are still here sharing and encouraging us to keep going...Honey you can even still just go outside and look at the sun and be thankful for another day even if it is a tough one.
Roxy...We have all lost some things...but GUESS WHAT...WE found each other. And I won't let you go...and neither will any one else here...CAUSE...we are all in this thing together...Sometimes suffering through the same things...But together none the less.
So now...lift up that head...and smile...cause we love ya and we are not letting you go...It takes time...When you are feeling up to it...get a piece of paper...make two lists...Don't focus on the stuff that is lost...but write down a few things you feel you have lost...
Then...right down the things you can do...even in the days you have limited moblity. Even write down somethings you would still love to do...Don't look at the fact you have RA when making the list...Write and dream. Then...if it is on your list to go outside and listen to the birds and see the sun...and feel the air of one more day on your face.
SISTER GIRL...Go do it. If you have always wanted to write a book...You may not be able right now to Run like you use to...But write those experiences down...You never know...A real book may come out that will encourage Millions that have given up hope.
I write this to you because...I share in your pain...I may not be there physically, as many of us here aren't...BUT...we are with you...and in your pain. You are not alone...And we will not let you go!
NOW...Chin up...smile...it's another day to be grateful...and let us help you...carry the weight...cause you know what...?
I may need you to help me carry this RA CRAP Next week! LOL
Love, Rene'
Rene~You're a great cheerleader!!
You bring much needed reasoning to our group.
She's right Roxy, and you know it. Look back at your own post over the 2 months you've been a member. You'll have ups and downs and it will change dramatically from day to day. That's one of the hardest thigns to get use to...but you will.
Hang in there Sweetie.
(((((((((((((Roxy))))))))))
It tkaes awhile to get use to it. What is your dosage? My dr allows me to spread out the dosage so i don't take the pills all at once. I know when I started on mtx, I couldn't even lift my head off the pillow for 3 days, it just made me so sick!!!
I am sorry you guys. My threshold to pain does not seem high enough to have this disease. I was really freaking out yesterday. I hurt sooooooooo bad. I went to the clinic and the wait was so long, I could not stand it - stand, sit, crawl, whatever - I finally left as I felt I would be embarrassed bawling in front of everyone. I finally took a sleeping pill and FINALLY - fell asleep. I woke many times - the pain moved all night long. I would wake up with one part of my body to only wake to another part hurting. It makes me feel crazy. I am one of those people that is goal oriented and proactive. That also means I like things in my life as predictable as possible- unless I am looking for an adventure. That is a different story. Maybe that is why this disease scares me so much. I am also trying to deal with my insecurities in my relationship - that I did not have prior to this illness getting worse and worse. I want him to be more supportive - what that is - I HAVE NO IDEA. I want him to MAKE IT GO AWAY!!!! OK I am a reasonable person but ra makes me crazy with emotion and feel numb with grief. I woke up better than last night. Called rd. They cannot get me in today but I told the nurse to please ask him to call me in a rx for prednisone and a stronger pain med. I SWEAR TO YOU - I don't feel like I can deal with another day of pain like yesterday. You guys made me cry again
I DO LOVE YOU GUYS. One hour at a time today. We had plans to go for a hike
My sweetheart dog, a big weimeramer- Tyler - thinks he is in trouble all the time because it even hurts for him to come up and ask me to play. I can't stand to be touched right now
I will check in with you all later. I am so grateful for your responses and a bit embarrassed about my whining
Hoping your day gets better.... Lovie Nurse called and said the rd wanted to see me Monday. Give me a break!
Lisa - I was on pred for about 1 year. Got dx only 2 months ago - been on 10 mg. mtx, plaquenil, relafin for a month. Rd said he would like me to try Enbrel after 3 months on mtx. I am still waiting to see what my insurance is going to cover
Allbear - I am feeling your huggles and knuffels and they feel goooooooooood
Marie - I still don't know if it is the mtx or the ra making me feel this way. I do know that is why I am feeling so frustrated
Lovie - I know I need Brett but I wouldn't want to BE WITH ME RIGHT NOW
Thanks Cris. I am not ready to adjust - I am hanging onto my old life "for dear life" Someday, I hope I will be able to accept this thing. I have so much respect for you - who are so brave and "roll with the punches"
Thanks Unicorn - Trucking by the Dead is singing in my head
Tara - I want to eventually tailor my meds to be on as little as possible - I agree with you but right now - I got to find something that works besides prednisone Thanks
and Renee - You should write a book. You are full of wisdom. Your advice is so right on!
First things first. When you say "I do", it is for better or for
worse. Your hubby will love and stick by you just as you would if
the roles were reversed. I am relatively new to this forum and
RA. I am thrilled that I have found this because unless you have
RA no one, and I mean no one understands what RA is or what the pain is
like. Oh you have arthritis? That's too bad I do too. They
have no clue what RA is. I have to say I was uneducated about it as
well until I was dibilitated with the pain. I have been through a total
hip replacement 6 months ago and that was a breeze compared to this
pain. I think what has surprised me the most is how young most of
the people who post are. I did some more research and the average
age is 25 - 50. I'm 63. The other thing is that how
everyone here seems to respond to the meds differently. My first
severe flareup was Christmas Eve 2004. I had a house full of
guests and by 8:00 I had to retreat to my bedroom. The pain in my
shoulder down my arm to the tips of my fingers was so bad I didn't know
where to put myself. A couple of weeks later I had the same type
flareup but on both sides, shoulders to finger tips. On that
Monday morning I took myself to my GP and sat in her waiting room until
she could take me. Blood work showed a high SED Rate and on from
there. My first rheumy wanted to put me on plaquenil but I was
leary. After a couple of visits I decided I didn't like the doc
so I switched and found a female rheumy that I love. She talked
me into MTX. I'm only on 10mg and also take Naproxen that I was
on for the hip. Was told to stay on until they increase the
MTX. I was scared to death the first day I swallowed them and
still do every Friday. Two weeks ago I came down with phneumonia
and don't know if MTX had anything to do with it but rheumy stopped the
MTX for a couple of weeks. My other fear is losing my hair again.
It started to fall out 3 mos after my surgery and just when it was
coming back again I started MTX. I keeping my fingers crossed. Olivus; we all feel just like you. We are so gald to have the support of this group. I refer to it as my on-line supprt group when talking about you guys, because that's exactly what it is. We can not get this kind of support anywhere else in our lives because no matter how loving and supportive our well intended family and friends are they have no idea of the DAILY struggles we face. I'm one of the one that try very hard to put on the brave face for my family because I'm so afraid that if I continue to share my complaints with them daily they are at some point going to throw their hands up and give up on me. I know it's not true; but it's an insecurity I have. So Roxy, Honey I know exactly what you mean about Brett. I felt the same way with my now Husband. I pushed him away for a long time. Especially when I would be in the height of a flair like you are now. I would avoid him because I didn't want him to see what I turned into during those times and twice I broke up with him...but he was having none of it!! He research it and learned far more than I ever imagined he would all on his own. It brought me to tears when he came to me with all the knowledge he had and told me this is something we were going to face together. He wanted me; and it didn't matter to him what my future hold, he was going to be a part of it. I now have no idea how I ever managed with out him. At times I hate that the way my life is effects him the way it does, but he constantly assures me that I'm the best woman he's ever known. RA or no RA I'm the woman of his dreams. K...he's slightly over the top; but he's all mine!! Thank god. He's such a blessing in my life. None of us can make you feel better right now Rox, but just know that we all love you and are here to support you in any and every way possible for us to do so as vitual friends. The only thing I hate about this on line thing is that I can't be as supportive as I'd like to be with normal friends. I can't stop by and see if I can do anything for you. I can't just stop by for a quick hug and to drop off groceries....I can't stop by and help you in anyway...but I can listen....and I'll do that as often as you need me to. Lovie "Nurse called and said the rd wanted to see me Monday. Give me a break!
The suspense is killing me--did she call back? What happened? (By the way, I hope you didn't take whatever you had around the house, a scary thought, but I've got to say I'm proud of you for standing up for yourself!) My doc told me most insurance companies will not cover the biologics until the patient has been on 8-12 weeks of methotrexate and it doesn't work. So that explains why he says Enbrel after three months. I'm wondering, though, if you can't call your insurance company and ask them specific questions about after the MTX, will they cover Enbrel. At least you'll be armed with information when the time comes. You say in your post you were on pred. You're not now? I'm thinking at the very least, the doc could have prescribed a six-day taper pack of prednisone for you. It would get you through the weekend at least. When the same thing happened to me, my rheumy had to have me on MTX for the required period, but he also had me taking 20mg of pred daily to keep the inflammation down, and me out of the excruciating pain. When we tried to decrease the pred, the pain returned, which told us the MTX wasn't doing the job completely--this pointed to time for the big guns--biologics. Now, I'm tapering off the pred. Then we hope to taper off the MTX. My point is that it's a tedious, slow process--you and your rheumy need to find your own individual balance of meds. I know you hate taking all these meds, but how about putting that worry off until you get yourself out of this awful pain. You sound a lot like me--just much younger. You're strong-minded, know what you want, and are angry when things don't go the way you expect. Your anger, though, may be getting in your way. Sometimes, you just have to let go of the anger, get out of your own way, and let the gods do their work. I guess it's an exercise in patience. Irritating for sure, but a life lesson. When you wake up one day, when you're old and wrinkled like me, you'll realize that you would not be the woman you are, were it not for the woman you were way back then--when you were in pain, and angry because of it. One more thing--your fiance is probably so confused. Sounds like he's trying to help, but doesn't know which way to turn or what will make you feel better. I think you should let him read Lovie's post about her husband earlier in this string. It almost made me cry, and it might help your fiance set out in the right direction if he's trying to understand. Lovie--can I just borrow him maybe? One day at a time! I've been where you are Roxy. I hung on by my fingernails until the MTX started to work. It did start to work and my life became almost normal again. Today they have so many meds they can try if one doesn't work for you. Don't make rash decisions based on how you feel now because you can feel completely different in a relatively short time. One day at a time. I hope to hear a post from you saying that something is better. You can do this, we'll be there for you. Its like having a baby. We can coach, hold your hand, but we can't have the baby for you. Take care, it will get better.
Barb
Sleep well. Roxy, I'm so happy to hear that you're feeling better. I take Tylenol Arthritis, and amitriptyline, along with the Enbrel. The amitriptyline does indeed help me sleep. It's an anti-depressant, but the doc gave it to me because I was having difficulties sleeping. It seems to work pretty well. I hope it works as well for you. Anyway, I'm glad you're feeling better. Sometimes when I'm having a real tough time, I come here. I don't always post during those times, but just reading helps me get through. We're all here for each other. Please take care. I hope you have a great weekend. Cris
Roxy I didn't say anything hon to make you feel better. When you
are in that much pain, no one or nothing really helps. I have a
great man that I have been married to for 41 years and although he
can't feel my pain he is there for me as I'm sure your hubby is.
I hope you feel better and tomorrow you have a different outlook.
I will be watching for your next post.
Olivus
I hope tomorrow looks brighter!
Hi Roxy, I have just been reading through all the
posts and I'm so sorry to hear about the nightmare
time that you have been going through. It can be
hard to think of things getting better when you are in
so much pain. But keep your head up and things will
get better. I feel so bad for you and wish I would
have read your post sooner (but I've been depressed
and sleeping alot).
I'm glad you called your doctor and told them you
needed medication and that they finally got you
something. I hope you will rest well tonight and feel
even better tomorrow. You will continue to be in my
prayers.
Blessings to you,
Tara L
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