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Posted 5/15/2007 5:02 PM (GMT 0)

 Hi everybody,

I have been reading all of your posts for the past couple of weeks, and you've already been a huge help without even knowing it!  I was just recently diagnosed with RA, and like all of the "newbies" I'm a bit nervous (ok, more than a bit) and plenty scared.  The doctor says this has probably going on for a couple of years, starting in my feet, then in late February, got the flu, which turned into bronchitis, then a flare.  My brother has mixed-connective tissue disease, have a 22 year-old son who has had diabetes since age 2, and I also have thryroid problems.  So, autoimmune is something I'm a little familiar with. But, it's a different story when it hits YOU.

The doctor has had me on Celebrex 200 mg twice a day, made a huge difference, and is now starting folic aid and methotrexate.  I am very, very, nervous about the methotrexate, have done a lot of reading and research, but am willing to try.  So, we are starting very slowly, 2 pills last Saturday morning, 4 this week, etc., working up to a total of 6 split into 2 doses.

One of my questions is, I only took 2 methotrexate on Saturday, but I still felt  sort of queasy and yucky.  Better Sunday, but even yesterday my stomach was pretty off.  Not as bad today, but just don't feel quite right.  Could this be the methotrexate, even at such a small dose, this long after taking it? Does folic acid mess up your stomach?I take 1g a day.

 Last but not least, does this all go away the longer you're on these medications, or do they always have these side effects?

Kind of scared to take 4 pills if 2 feels like this!

Don't know how you all do it, you are an amazing group!  I read and re-read your stories, makes me feel so much better

Thank you!

Posted 5/15/2007 11:18 PM (GMT 0)
welcome babyplace! no worries were here. u know i think the even the small first dose can make u a bit quieezy but it will get better. as far as i know the folic acid helps with the nausea ands side effects of mtx? not certain but do take it! did u get that kinda car sick need to lay down kinda feeling? hey i say do it rest! i dont know if it is all the mtx newbies or what but i got kinda yucky this past weekend after my dose but then i ran around and never stopped to even eat and worked myself to exhaustion so hey what u want the body needs rest too!
i wish u much luck with the mtx. mom of 3 i think just started too! maybe she will post her stories with urs to share and go through this together! good luck and keep posting u will help someone too!
Posted 5/16/2007 2:54 AM (GMT 0)
Dear Yalinda,
Thank you so much for your reply. Finally feeling a bit better tonight, but, yes, it was that kind of"car sick" feeling. A little jittery even. Just sort of made me uneasy, 3 days after taking the meds, didn't know if that was normal. I run a daycare(that's where the "babyplace" comes in). and just want to be at my best for the kids. Don't go back to the doctor until June 5th, hate to think of being sick 3-4 days a week until then! I know something is up when I can't stand the smell of my coffee.... How long have you been on the methotrexate? I called the dr's office this afternoon and yes, you were right about the folic acid. The nurse said that is supposed to help with the nausea. They want me to try and see how this weekend goes, if still sick, may have to use the shots instead of pills.
Thank you so much again!
Posted 5/16/2007 3:23 AM (GMT 0)
:-)  hi babyplace (that's a nice name) i'm so glad you're getting some reassurance from our group here. and it's very nice to have you join!

i don't have any personal experience with MTX...but i do have plenty experience with loads of meds that make ya wanna hurl! lol.

there was one in particular i was on, and still on...that caused terrific nausea & also cramps...and i'm suppose to pop 16 of these suckers?!?!?!  and at only 3 or 4 pills the nausea started.

i was real quick to say "forget this!"  but my doc pursuaded me to stick ot out a few weeks.

those ill effects from that med did go away, the bad nausea and all.

 

just wanted to say hi & welcome you to HW.

:-)

 

Posted 5/16/2007 11:08 AM (GMT 0)
hang in there babyplace, i have been on mtx over a year now. i find taking the mtx on friday night works the best for me..... i sleep through a large portion of the weeezies and dont have to work on saturday so if i do get a bit out of sorts it just effects my social life- which with 2 teenagers i really dont have a social life lol!
wow daycare! how many kidos do u have. i always say i am glad i am not with babies anymore like some of the women on this site cuz i just couldnt do it anymore. i am in my mid forties. kids keep u going- thats for certain!
well take ur folic and keep posted on how u r doing with the mtx! lata yalinda
Posted 5/16/2007 3:17 PM (GMT 0)
Hi babyplace and welcome!

I am on my second week of MTX, and I started out with 4 pills on a Saturday. The following day after my first dose, I felt like I had been hit by a truck..literally!!! I hurt all over, almost like the flu. This continued for the first couple of days after my first dose but by the end of Tuesday I started to feel somewhat better and by Friday I was fine. Almost in time for the next dose!! I took my second dose this past Saturday and thought maybe I would sleep it off but this didn't work, by Sunday afternoon I could not stay awake...I didn't have all of the body aches of the first round, but now I am just very fatigued and have a low grade fever this morning. I have a couple of sores on my tongue and some bruising to go along with my fatigue, but someone posted to me earlier that after you take it for awhile the symptoms subside.

Now for the good part!! It HAS taken my hip pain away, before I started on the MTX, I was taking prednisone and needing quite a bit for relief, but the MTX combined with my plaquenil gives some relief. There were days when I couldn't sit or stand the pain was awful.

I know I was terrified to take the MTX! and put it off for quite sometime, but finally just had no choice and had to do something.

I do not have an actual diagnosis of RA, but unspecified inflammation because my tests are always negative. I have been seeing my rheumy going on 19 months now, and my pain has increased greatly so I am at the point now where I will try anything to feel like I did before I had to go see him!!

I wish you the best!
Posted 5/16/2007 5:49 PM (GMT 0)
Good afternoon to all of you,
Thanks to each of you for anwering me!! You are all so kind...
Erin, have LOVED reading your messages in the past , your sense of humor is amazing with all you have been through..seems like you are sort of the glue that holds alot of them together.
Yalinda, yes, the kids keep me hopping as much as I can, Right now I have 4 in care...at my home, ages 7 months to 4 years. I've been at this for almost 20 years, started when my youngest son was diagnosed with diabetes at age 2. God answered our prayers so that I could stay home and care for him, yet bring in some income. We didn't have insurance at the time. We have 4 sons, oldest being 31 this year. I'm 49, guess the whole thing about life begins at 50 has a new meaning for me now! Wow, you've been on the mtx for a year and it STILL can make you sick? That sort of stuns me. But will try and stick it out.
Momto3, Yalinda told me you had just strted the mtx, too, thanks so much for your input..you all make me feel so much better, this is a bit of a scarey place,to be, isn'it. But you all seem to handle it so well, I pray I'll get there. I did get a definite diagnosis, not that the numbers make a lot of sense to me yet. I still have so much to learn. The doctor told me that my RF was 275, and th upper limit was 13...but she also said that I don't have a full-blown case of rheumetoid? The was sort of weird...as bad as I felt , can't imagine what full-blown must feel like!! Definetly feel a lot better today, could even drink my coffee Yeah!! Life without coffee and chocolate is unimaginable for me..the only thing I really notice today is that I still feel a bit shaky and jittery, is that normal? Comes and goes, but it' s strange.
Must go for now, the kids are napping, so I might grab a little rest myself.
Bless all of you for your help!
Posted 5/16/2007 6:37 PM (GMT 0)
babyplace.. Wow I didn't realize you were in childcare! Sometimes it is so hard to keep plugging along isn't it?? For me, I was teaching preschool and I ended up with some kind of virus, you know working with kiddos sometimes you get sick! and somehow I ended up with awful joint pain, that turned to joint pain w/swelling and here I am over a year and a half later... My own children are 10, 13 and soon to be 15. My oldest two understand, but my daughter sometimes gets frustrated when I am having a flare and can't do fun things because I hurt.

I guess I missed whoever said they still don't feel well on their MTX and it has been a year??? oh dear...well..it IS a chemo drug after all that is how I try to look at it, obviously we are not taking it in the mass dose that a cancer patient would, but I still think it is going to make us not feel well, because that is what it was originally meant for, it is bound to have some side affects.

Good for you for trying to stick it out, because my doctor said it takes a couple of months to really start working...Hang in there, you can do it!! Just make sure you take the folic acid everyday.
Posted 5/16/2007 7:03 PM (GMT 0)
Hi again, Momto3,
Yes, I do child care, do you work outside the home? I know keeping up with the kids is hard, but I really admire those people that have this and keep up with a job too! Must be hard sometimes to drag yourself out of bed and go to work. I'm really lucky to have a great husband who is a big help, does alot for me when I'm feeling bad.
Do you know anyone who has tried any of the natural remedies for this? A friend wants me to see her chiropractor, another has a homeopathic doctor, but I just don't know......Guess I was just always raised to trust the tradtional style of medicine. Kind of miss the days my boys were the ages of your kids. They are all on with their own lives, jobs, etc., two don't live near us, and I miss them! We're all very close, but not the same, as having them all here.
Time for afternoon snack!
Thanks again!
Posted 5/16/2007 7:23 PM (GMT 0)
Hi again,

No I don't work outside the home...but I do commute my kids into school, since we decided to buy a home in a smaller town (less money) and wanted to keep them in their original schools, this was before I ended up with whatever it is I have! There have been days when the drive gets to be too much (40 min, one way and two schools) but we are going on 3 years living here so have decided to stick it out.

I can't imagine a chiropractor doing much in a real flare, and I know some who go to one for all of their health care needs..but then I have never been to one, so I can't really say one way or the other.

Well, my oldest is going to high school next fall, and I am starting to think..only 4 more years :( where have the years gone? I can't imagine my boys being the ages of yours..but then I remember when I couldn't think of them being teens either!! and that time is now here.
Posted 5/17/2007 1:34 PM (GMT 0)
Good morning!
Wow! Keepiing up with three kids your ages keeps you busy doesn't it? I sort of wish we lived in a smaller town, we're in a pretty big city in Florida. Moved here when our youngest was 6wks. But. I have a lot of family here, plus two of our boys , so this is home . Before here we lived in a small town in Wisconsin, my husbands whole family is still there. We do miss the closeness of people in the small towns, plus it;'s so crazy here with the traffic and all.
Feeling a whole lot better today, thanks to you guys for all talking me through this. Must admit I'm not looking forward to taking another dose of the mtx this weekend though. Did you ever have any side effects from the plaquenil? My brother was on that for lupus, etc., and he said that it worked really well for him. If Istill get so sick form the mtx, maybe that's an option for me. Also wonder if the mtx in shots is any easier to handle.
Well want to get the kids outside to play for a bit before it gets too hot here. Thank you once again, and have a good day!
Posted 5/17/2007 2:39 PM (GMT 0)
Good morning :)

Well, I have been on the plaquenil a bit off and on! It wasn't working as well as I thought it should be..I think I just got fed up and wanted all of my pain to away and the plaquenil wasn't doing that, so I stopped taking it, and I have to say, I had one of the worst flares ever, with no energy. At my next appointment, I went back on it and with the exception of some nausea/upset tummy its not bad. It really combats the fatigue, at least for me..I'm still taking it but now the MTX has taken over and taken away any energy I had with my plaquenil. The only problem with it is it takes months to really start working, and I went through several medrol dose packs in the meantime, along with prednisone. My doctor wants to take my plaquenil away at some point and only do the MTX but he is afraid to do it because I always flare when it is taken away! I like my plaquenil :)

I'm with you, I am really afraid of another dose of the MTX, it seems to cause very vivid dreams and I don't sleep well now that I have been taking it..but then on the other hand I am scared that I won't get this under control and in the year and a half that I have been going to my doctor I just keep getting worse, and that is terrifying, especially not to even have a formal diagnosis of RA. I have to wonder what I will be like next year!

I am happy to hear you feel better today, that is how it seems to work you feel better, just in time for another dose right? although by Friday I am starting to hurt in my hips, it seems to wear off somehow, or maybe its just me.

We moved here from Kansas a few years ago, and my husbands family lives a few hours from us, and for the most part I enjoy Colorado, it isn't as hot as Kansas. The kiddos do keep my busy and they have their activities and I marvel at their energy!

How about you though? you are taking care of little ones! Now THAT takes energy! I cannot imagine how busy you are in a day..well I can, since I used to teach, but I have a great deal of respect for you since you can care for children with your RA:)

I think I heard that once you reach a certain dose of the MTX it is preferred to do it by injection or if you just want to try it that way, ask your doctor, I think it is about preference really.

Have a great day!
Posted 5/18/2007 2:52 PM (GMT 0)
Hi again,
Well here we are, almost ready for the next dose...yuck! I am praying this one goes easier. Yeah...all this and menopause too ...how lucky can a girl get!!
When do you take your mtx? I took my last one Saturday mroning. The doctor told me to start it on Friday, but didn't want to take anything when I had the daycare kids here. Really didn't want to be sick with them here, but then I felt yucky for so many days after don't know when it's the worst. At least I had a couple of good days this week, and I could still take care of the kids.
Hope your next dose goes better too, and that you can enjoy some of your weekend!
Posted 5/18/2007 9:35 PM (GMT 0)
Hi there :)

Well today was a day with a bit of a flare and it seems the MTX wears off by Friday, and I don't have the menopause yet..but have terrible cramps to go along with my flare *sigh*. I went today for my eye exam since I take plaquenil and it seems to have affected my vision somewhat so I will go back in 6 months for a recheck. I hope since I did not have a base line done, this is just the way my eyes are because I like the plaquenil.

I will do my MTX in the morning since my problems don't seem to start until the following day! and it really does help my hips, so I am ready to take it for that reason, but not ready to feel puney :(

I hope you feel better with this dose! Hang in there :) and have a great weekend!!
Posted 5/21/2007 10:58 AM (GMT 0)
Goood Monday!
How did your weekend go? Hope you're doing ok with the mtx. I actually feel pretty good this time, thankfully. Had a little queasy stomach on Saturaday a few hours after I took the meds, but not too bad Sunday or this morning. Nothing like last week. But, I'm only taking such a little bit, now I'l have to see what happens when I up the dose this week.....I'm so sorry about the eye appt....but like you said hopefully it was just your baseline, and will be praying things stay the same from now on. Are your kids aout of school soon? Schools here finished on friday, seems so early, but when school gets out, maybe things slow down for you a bit?
Better go get ready for the kids to start coming...have a good day!!
Posted 5/21/2007 2:02 PM (GMT 0)
Hi there and good morning :)

I took my dose Saturday morning and felt fine most of the day, and it seems to take about 12 hours to fully kick in for me! so by 7pm I was not feeling well! and on Sunday I had a fever and aches, pretty much like the flu again, however not nearly as much as the week before. I don't feel as well as I could today, but I don't feel as if I have been run over by a truck either. I have to drive in and take my daughter to the orthodontist and I feel like I can manage to do. So I think it is getting better, and I am on the highest dose I am going to get at least for now, since my doctor gave me a prescription to last until my next visit. Hopefully this time around it will last the full week because last time by Friday I was really starting to hurt, and it takes a couple of days to get back into the mtx.

My kiddos get out on June 1st, and there seems to be so many end of year activities that we are constantly on the go! It will be nice when everything slows down a bit, but as you know with children it never REALLY slows down lol..My daughter is in cheerleading and we have now started a new season so we will be going full force ahead all summer, and my boys both play electric guitar, and just trying to keep them busy and not fighting while we are at home...keeping the peace, will soon replace the challenge of driving them back and forth to school!

I am glad this round of mtx was easier for you, and I think we just have to get used to it...that is reasuring that our symptoms seem to be less this time:)

Have a great day!
Posted 5/22/2007 5:15 PM (GMT 0)
Hello again,

Hope your're doing well today!!  Not long and your kids will be home, but you do sound as though it will still be pretty hectic!  Sure miss not having a daughter sometimes, must be fun to do all the girlie things.....electric guitar?!  Wow that must be fun, noisey, but fun.  2 of our boys are really into music, but it was marching band in high school, and orchestra in college.  I really miss the concerts, etc. When the youngest was in high school, the band was a tradtional Scottish band with bagpipes, celtic dancers, the whole works.The school was in town with a big Scottish heritage. In his sophmore year, we got to take atrip to Scotland, the kids had been invited to perform  in various places, and I got to go as a chaperone...what a once-in-a lifetime trip! 

Even with the daycare, the house is too quiet once they all grew up, but you made me remember the bickering, etc., don't miss that! 

Well better run, naptime will be over soon enough, need to get some things done.

Take Care!

Posted 5/22/2007 5:45 PM (GMT 0)
Hi!

Oh it sounds as if your children were very talented! My boys are just now becoming immersed into their guitars...and my husband plays bass so if you can imagine the noise! My oldest started out with an acoustic a few years back and put it aside and has now found his interest once again. He is left handed so we had to go in pursuit of a left handed guitar and they are not easily found around here! My middle son enjoys sports..but I really try to encourage music, it is something they will always have..even as adults. Now my daughter is wanting to play her brothers old acoustic guitar and go for lessons...it can't hurt!

To go to Scotland would be fabulous and I agree is an opportunity of a lifetime:) I have yet to be able to travel, hopefully when the children are grown, my husband and I will do some traveling of our own :) The school my boys attend take frequent trips and they have been to Moab Utah, as well as Santa Fe, and a few other places this year.

Ah yes the bickering...my boys are 16 months apart and the older they get the closer they become, they still have the occasional knock down drag out..but so much better than they used to be...it is my little girl..my critter..who is now 10..look out!!! I think her hormones are beginning to take over. Yesterday. when I dropped her off back at school she was as sweet as pie..gave me a big hug and kiss at her classroom door, but then when we got home, she is fighting with her brother and screaming at him..locked him out of the house! *sigh* I have to say that boys hands down are so much easier than girls...my oldest is soon to be 15 and I can count on one hand the times I have went around with him..my daughter? oh dear!! But they will never be this age again..that is how I always look at it, even when she is screaming and ranting. I just try to enjoy every minute that I can.

It is fun doing girlie things though, on Weds, it will be shopping for a swim suit with my little girl. She will try on at least 10 swim suits!

Sorry for all the babbling! I hope your day is going well :)
Posted 5/22/2007 6:05 PM (GMT 0)
You really made me laugh about the girl hormones! I used to say that God knew what he was doing when He gave me boys...this house couldn't have withstood more than one case of PMS. Even our pets are male!! But, I do love my boys.....even still, they are all so different...my 28 year-old was always real easy going, very social and popular..everybody's buddy. The 29 and 22 year olds were more head strong and not quite so outgoing....seemed to have a tougher time socially. The 31 year old was full-speed ahead his way or the highway. I still wonder how the same set of parents, the same household, turns out such different personalities. I'm glad we could stay close.
But, I hate to tellyou, I don't know if the bickering ever completely stops..when they all get together they have a lot of fun, but when you get that much testosterone in one room, it's bound to explode at some point, anyways it does with them. I love to listen to them all tell stories of their gowing-up years. So many things I'm glad I never knew til now!!
The two music boys both play acoutsic guitars, I miss listening to that too...I hope your daughter loves it! Boy would they have loved to have a dad who played bass...must make for some great times btween dad and his boys. Well, been on too long and really need to get busy here, I just really enjoy having someone to "chat" with...been a little housebound lately, I hope that chages when the meds kick in!
Talk to you later
Posted 5/23/2007 11:55 AM (GMT 0)
Don't know if I need to start a new thread here, but could really use some help...yesterday my feet started absolutley killing me, then my ankles, toes feel like they could break...really hard to walk..this morning i feel really, really bad....I don't know where it doesn't hurt!!! I just want to stay in bed and cry!! But the kids will be here soon, so can't do that. Feel like I'm living from Celebrex to Celebrex
Is this normal..I really thought the worst was behind me, but I feel like did, maybe even worse than I did before the doctor. This is really discouraging, what should I do?
If anyone can give me some insight I would appreciate it so much...I really thought I was doing so much better.
Posted 5/23/2007 1:52 PM (GMT 0)
Oh no :( I'm so sorry you are having a bad flare. I have had those as well, and I think everyone on here can share a story with you. Before I started my mtx..it got so bad, that my husband seriously considered taking me to the ER but I held out for the urgent care because I couldn't get into my rheumy..it's alright, you just started your mtx, please call your doctor and tell them how much pain you are in, and tell them you need something to get you over this rough spot. This is so common in RA :( I have had my share of medrol dose packs, as well as prednisone...are you on plaquenil?

I know you said your celebrex isn't working well, please call and ask for something else. I will check in later to see how you are doing.

Gentle hugs.
Posted 5/24/2007 11:17 AM (GMT 0)
Hi,
Thank you so much, can always count onyou to answer me!!! Not feeling a whole lot better today, guess I win the award for the most naive dummy about RA....I really thought that once I got diagnosed and on some meds, I would get better..I didn't expect to have days like this...stupid huh? I missed the whole part of "chronic and progressive" I really thought that since the doc said they caught it early that also meant it wouldn't go further..know what I mean?
No, not on plaquinel or anything other than Celebrex and mtx...but this will only be my 3rd week on Saturday and I have to go up to 10mg then. Never had any steroids either...just told to take tylenol if I need it . They said that this is part of the "disease process" and that it will take time for the mtx to kick in. (sure hated to hear that "disease process part") Go back to the doctor on the 5th. Have to go lay down, but bless you for your reply...I hope I hear from some others too. I guess I got slapped in the face with reality, and it's pretty depressing.
Hope you are well, thank you again
Posted 5/24/2007 7:47 PM (GMT 0)
Hi,

Sorry you are still not well...I have been where you are and have learned it is just part of the RA..call and get a Medrol dose pak, or some prednisone to tide you over. This is what is usually given during a flare and tylenol does nothing! Gosh not sure what else to say about it, but that is what my doctor has done in the past...flares are usually treated with short term meds that I have listed because the others take so long to kick in.

Please hang in there!
Posted 5/26/2007 6:09 PM (GMT 0)
HELLO FROM DOWNTOWN aPSLEY, CAN SOMEBODY EXPLAIN to this bear of very little brain WHAT MTX IS AND MAYBE know if it is suitable for osteo arthritic pain - i know I am having the hip replaced this year but for pain relief all I have is dihydracodeine and arthrotec 75 and it really doesn't get anywhere near the pain. The next thing upfor me in the uk is morphine but that is a no no as far as I am concerned as I would have difficulty staying focussed at work. Thanks
the bear
Posted 5/26/2007 6:49 PM (GMT 0)
Hi Bear,
Pleased to meet you!! Have read your posts with great enjoyment, you always have something so interesting to say. Mtx is methotrexate, and I am so new at this, I don't know what exactly its used for...I have RA, am trying to learn the ups and downs of it, not very familiar with osteo at all. I think that the methotrexate is supposed to have something to do with the immune system, but I don't know what it does as far as the pain goes. Sorry!! I'm sure someone else will jump in here and be able to answer this.
In the meantime, I have been wondering about you....you have put on your posts that you have pd. What is that?
Wish I could have helped you with the mts, but I'm sure someone will be able to answer who is far smarter that I am.
Take care,
Jody
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