36yo mom, RA, moving so fast, scared to death

out of no where, Jan.  Have been in hosp more than out since then.  So scared, 36yo, two boys, on mtx and scheduled to start remicade next week.  The pain is unbelieveable, the meds, so much, can't work, great husband and family thank God.  Nothing seems to help.  Don't know what I'm looking for, maybe just words of encouragement, first time to even think about an online chat.  Just reaching out.  I started a journal, keeping track of my meds and myself, easy to get lost in the pain.  I went to the gym and rode a stationary bike for 5 minutes in tears.  I don't care what I have to do, my family needs me.  Thank you. 

momwithra, u have come to the right place!   i too have never chatted on line before but this place have been God sent for me.  as many others here i am a mom with ra and i can remember the pain being so bad i thought i would never make it through my daily routines. marion was right prednisone was extremely helpful getting through the bad days until the mtx kicked in.  the bad part of it is u gain weight but for me the pain decreased immediately to a functional limit.  i have been on mtx for a year now and for the most part do ok on it.  it was hard for me getting off the prednisone as i hurt badly again and maybe i went off too soon but i am now adjusted to my levels of discomfort and doing well.

i know when u r in so much pain it is hard to imagine u will get better but u will! it might take time to build up drugs in ur system and play around with which ones work and which ones dont for ur body, but if u want fast relief get urself some prednisone!   the evil wonderdrug

i hope u continue to post here as we are all going through the same journey in life and understand your fear and pain all too well. good luck with the treatments. 

how r u doing on the mtx?  take care ~*yalinda

hey there mom! oh boy, never had plans for this huh? 

i am so glad you found HW...whatever one may lack in support & info from physician's and family or friends....i'm sure you'll find here.  it's become quite a tight-knit little family. but, this is what we do...we keep each other hanging on & help through the really rough times.

flares??? hmmm....well yeah they stink! you'll know the difference when you hit a flare because the joint pain will feel more acute (maybe more swelling or more throbbing)...more than the usual RA pain. 

in bad flares though...it's like critical to have some prednisone on standby. if you can tolerate it, it's a lifesaver.

prednisone has kept me a number of times from having to go to the ER for RA. (me too...i was racking in 2 or more ER trips per month due to RA pain.)

the joint pain i have gets to be almost like intractable pain...downing dilaudids & everything and barely getting a grip on the pain.

i'm 26 now & have been being treated for RA since 2002. (@ age 16 i tested + for RA but never got treatment for it...so it got out of control come age 20/21 to the point of disability)

i went through Enbrel for 2 years, Humira for 1 year and i just started Remicade in October.  It IS NOT BAD!!!!  not bad at all. depending on how severe you are...you can get infusions every 3 weeks, every 4,5,6 or 8 weeks.  i go every 3 weeks @300mg. {i think today was my 7th or 8th infusion?}  they premedicate with antihistamine and/or a steroid or tylenol.

i never had any infusion reactions except for low BP...of course i'm really immune suppressed, but i take 4 other immunosuppressants along with the Remicade.

the docs & nurses keep good tabs on ya with labs & appts and all...

starting aggressive therapy for RA when it's progressing rapidly is so important.  i wish i would have done this when i was 18!  i would have perhaps had my career if i had! (nursing) but, as is life.

i can't work either due to RA (struggling to get SSDI since 2004) ...can't be on my legs for more than a few minutes. and a lot of mobility problems. so life now is a day to day thing.  i try to shower, dress, and sometimes that's all i can do.  but you accomplish what you can.  believe me, it takes a LONG time to adjust to a change like this.  i went from working 2 jobs plus college, AND a social life AND running to basically bed rest & trying to do 2 or 3 tasks a day if i can.

adjusting, coping & learning to live with this is an ongoing thing...like so many have already said..it's a journey.

i'm glad you have a good hubby. it's a blessing to have a great partner...my honey is my rock.

so what's your thoughts on Remicade?

so nice to meet you, write back soon!

you will get through this.

erin

yea!!!!!! friday's your BIG DAY!!!  i was so excited my 1st Remicade Tx.

ooh yeah thnks for the info about that ImunX drink/supplement...wow, it's an antiinflammatory?

Craig is super...we all love em'!

you know...those small goals are important.  nowadays i feel "accomplished" if i can successfully shower every day.  sounds pathetic, but there was a long time when i couldn't even do that! (when the RA goes through a particularly rough phase for me...even a bath is out of the question)  so i am happy with what i am ABLE to do.

i'm so glad you found a great place here!

your trip will be great.  it'll make you feel even better!

take care

I got a diagnosis of RA in January.  At first, mine was moving so fast that I was really scared.  I've been on Methotrexate and Folic Acid for about 2 months.  I still have pain and morning stiffness and swelling that does not go away, but my condition seems somewhat stable.  At least, it isn't getting worse.  This week, I am going to Methotrexate injections and am doubling the Folic acid to help deal with the incredible fatigue I have after getting my once/week dose. I am so sorry that YOU are having such a horrible time.  At first, my shoulders and wrists just throbbed at night like an abcessed tooth.  I felt panicky and worried that I'd have to quit work.  After reading many of these posts, it seems that some more surprises might be in my future.

For today, I am going to try to remain hopeful that my symptoms can be subdued.  At first, I felt upset that I had to give up my 5 spin class/week regimen.  I thought I'd get on medication and get right back to life as usual.  Now, I'm hoping to stay out of a motorized scooter for my future mobility.  My message to you is HANG IN THERE!  I really think your doctors can find something that will get your symptoms under control.  My good friend was just diagnosed with undifferentiated connective tissue disease in June and she was hospitalized several times with EXTREME symptoms.  She now takes Plaquenil and AZ-something and is starting to get some relief and has started walking and feeling hopeful about her situation again.  I hope this helps!

Oh boy do I know how you feel!! I'm so sorry to hear you are hurting.  Gosh it is frustrating isn't it? For me, I just had a really bad cold and caugh last year, and a couple of months later, my knees and hands started hurting terribly, so I went in to see my pcp, and he thought maybe I had lyme disease or something like that.  Ran different tests that would have those symptoms, such as RA, lyme, even Lupus, all negative.  Finally gave me Ibuprofen and a referral to a Rheumatalogist.  Now 16 months later, I have gone through just about every NSAID, plaquenil, Sulfasalazine, a couple of Medrol dose packs and finally back to Plaquenil.

I had my checkup yesterday, and I am in an awful flare, where my hips and knees hurt so bad, I had  two darvacets and they didn't even help with the pain.. I think finally, my rheumy will do something even though I have tested negative on my RA tests twice now.  Wrong!!  Three weeks ago, we decided to try the sulfasalazine but it made me sick, so he tells me my options are to just be med free for awhile,(this is how I feel med free!) or go back to the plaquenil, with a small dose of mtx to start out    I tell him, I hurt so bad that I can hardly sit or stand..and that I drive so much to get my children back and forth to school and I also attend classes.  There are days that I drive 100 miles. .finally I leave with a prescription for a medrol dose pack, and will start once again with the plaquenil.

Seriously if I had a positive RA results, I think I would have better luck and he always asks about my hands, well my knuckles are much larger than they were a year ago and the swelling is always gone by the time I get to his office.  I guess I don't have the outward signs he seems to be looking for.  But my official diagnosis is inflamation unspecified.

I think I am going to go back to my pcp and tell him my hips are hurting the way they are and there is something wrong.  I just can't stand it any longer

I told him my hair was coming out when I wash my hair, and he looked alarm but didn't know what to say to that one, I guess he just thought I was having quite a flare. 

I am so glad you have a supportive family, this is key when you have something like RA.  Also, if you can get the right medications to control your pain, that is fantastic!  There are so many helpful people on here, who have been through this.  Hang in there, you are not alone!

I read a few of the other postings that you were able to get pain relief and that is good to hear.  It is so hard when you have children/family and you have to push yourself when you hurt so much.  I think it has gotten old for my family, so often I just try to pretend I don't hurt, at least when they are around.

Big hugs and hang in there!