Advice from people who are living with RA

By Angie Thursday, September 04, 2008

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Hello my name is Angela and I am 36 years old, married with no children. I was diagnosed with RA when I was 34. I was too a very healthy person, never had any problems with my health and have always been a thin person. I was on vacation two years ago with my husband, riding bikes everyday, then noticed my feet were sore, I thought probably from riding too much. Then eventually my hands got sore and soon enough I couldn't move out of bed or function at all, I didn't know what to think, it felt like I was dying. So after being sent to different doctors from my family doctor, to then an orthopaedic surgeon to a podiatrist, they finally sent me to a Rheumatologist and then diagnosed with RA. I thought how could this be? how does this just happen, I always thought things like this happened to people in their old age, after you've experienced life and done everything you wanted to in life, I couldn't accept it. I had soo many questions!! They sent to have x-rays, MRI's and blood work. So they started my on Plaquenil, Prednisone then plaquenil wasn't doing much, they then put me on Methotrexate, took it for maybe six months, eventually made me too sick, but symptoms were almost gone, couldn't believe how this Mxt made me feel almost like I used to feel. But because it made me too sick I was taken off it. After a year and a half of seeing the same Rheumatologist, I wasn't satisfied with him, he wasn't very friendly, I felt like I would go into his office and he would basically say to me, how are you feeling, any side affects from the drugs and then send me off to see him every three months. So I changed Rheumatologist, now I'm seeing a new Rheumatologist, he seems more knowledegable, more caring. He has now put my on Plaquenil and Sulfasalazine because the MXT made me sick. I have been on sulfa for about two months now, I can function quite good, but the pain never totally goes away, I still have bad days but mostly I can function pretty good. Last month I have another MRI of my hand and foot and it came back with erosions in my foot and hand? what does this mean? he said now I may need to go on Remicade infusions? I really don't like the sound of it and I surely don't want any of those side affects. I have read soo many comments about people taking this drug and I am 100% certain that I do not want to take this drug. Is there another drug that people would recommend that doesn't as deadly side affects and has worked for them? I still don't have any children and would love to one day soon have a child. I feel like my life has been cut short with this disease, it affects my life in so many ways, I always talk about it and always on my mind. Is there a possibility of it ever going away?, remission they say it can happen and I haven't had any joint damage yet? is this going to happen eventually? my doc says, I can't say for sure it won't happen but hopefully not! I don't like unsure answers they give. I go back in October to see my doc, who told me to think about taking Remicade infusions, he says I am a candidate for this because of my foot erosions but then says, it's up to you because he is only giving me good advice and the choice is ultimately mine. I think I'm going to tell him that if the Sulfa. is not working on me then I would really like to try another drug other than infusions. I just wish this disease goes away and never comes back, it has totally changed my thinking, living and life as a woman, I can't wear high heels anymore only for a few minutes and my feet start throbbing with pain. Any comments would be nice, or thoughts. Thanks Ange

Comments (15) | Add comment

Feels like the TinMan

9/ 5/08 10:53am

hi Ange,

first, welcome to this site. You'll find alot of inspiration here. I'm newly diagnosed (1 wk officially, 2 months unofficially) so I don't have alot of insight just yet to offer. I just started Plaquenil, and I'm on Relefen too. I'm doing ok today, as i have all this week. You're right, the pain never goes away, it subsides a little, but something is always reminding me that i have RA too. I'm angry that i can't be 'normal'. yet, i'm happy at the smallest of victories (riding my motorcycle for the first time in weeks). from what i've learned on this website, reading other people's blogs, etc, first,you are not alone. we're all doing down this path. we have our trials and tribulations, but it's how you deal with them that helps you get thru it. of course, i can say that now because my pain level is relatively low (my hands are not cooperating with me). when other parts of my body hurt badly, i get depressed and angry all over again. RA is ALWAYS on my mind now. I've had people tell me that my eyes 'don't sparkle' anymore. i'm learning to live one day at a time now. i pray every morning that when i get out of bed, nothing hurts too badly that i can't get out of bed. so far, i've been lucky in that aspect. all i can say is, hang in there. find ways to do things differently. so you can't wear high heels anymore? wear cute flats, or sneakers. heels don't make the woman, that's for sure. (besides, they're bad for your feet anyway) . what i'm saying is, don't give up. keep looking for the right combination, try not to dwell on the negatives, and rejoice in the victories. Your life has changed. We can't go back to what we once had, but we can surely do things differently and still enjoy it. well, that's my happy speech today. i hope you find peace here at this website, i know i have. ~des

Angie

9/ 5/08 11:20am

Hi Des,

Thanks for your reply, wow, you were recently diagnosed, I hope your pain doesn't get worse, because Plaquenil on its own didn't do much for me. How advanced is your RA, is it at the beginning stages? What you should tell your Rheumatologist is that you want to treat this aggressively so that it doesn't advance further and damage your joints. Has he told you this already? are any of your joints damaged? They usually put you on plaquenil and another drug as well to try to knock RA out of your system and put you into remission. This is what I keep hoping for remission !!! Did you hear the news last night said something about all these drug infusions that they recommended to us are dangerous and you shouldn't take them for RA. They were four of them: Humira, Enbrel, Remicade (the one my Rheumi recommended I go on) thank god I decided not to. How bizarre he told me go away and think about taking this drug. !!! I think I'll see how I go with just Plaquenil and Sulfasalazine. I seem to be feeling okay with these two, I've only been taking Sulfa. for 2 months now at 6 tablets a day. I wonder if anyone has had any side affects from this drug? anyway take care of yourself and hopefully you'll be in remission one day !!!!

ange

Feels like the TinMan

9/ 5/08 4:25pm

hi ange

i'm assuming my RA isn't severe since i'm still pretty functional, at least for the past week. my rheumy isn't too talkative and hasn't mentioned Xrays or anything (he did bloodwork). he's very mechanical and really doesn't talk much. he didn't discuss any plan of attack so to speak, but then again, he's got about as much personality as a dead frog. i guess because we caught it early enough, maybe he thought there hasn't been much damage? it's only the 2nd time i'd seen him, so i guess he thought i had educated myself about it since it was me that went to him about RA. whatever the case, the plaquenil came highly recommended from my cousin who has lupus induced RA and swears by the stuff. i guess i should ask more questions next time i see my rheumy. hmmm.. see?? you're teaching me now! . you came here for guidance, and you ended up guiding!!! ~Des

Feels like the TinMan

9/ 5/08 4:28pm

ps: i posted a sharepost yesterday about those same 4 drugs. i read them online in my local 'newspaper'. i got a little excited when there was a reference to rheumatoid arthritis...then it was that article.. =(

Angie

9/ 5/08 4:41pm

wow, he sounds just like the first guy I saw, mechanical is a great descriptive word. I didn't like that so I changed guys. I'm surprised he hasn't ordered x-rays to rule out lupus, tuberculosis etc and also MRI to see swelling clearly and synovitis is really what they need to see if infact you have RA, that is clear for them to diagnose you with RA. Hmm, shocking... they did an MRI the first time I got RA to make sure I really had it along with the Anti-CCP number being high.

I recently had another MRI of my wrist and foot and he saw that there was some bone erosion of my foot and little on my wrist. (That's why he suggested I think about going on Ramicade) no way now !!! Wow, if Plaquenil only is doing great for you, then your really fortunate, because Plaquenil is a very safe drug, has really no side effects at all, they used it many many years ago to treat soldiers who were at war for malaria and taking it for a long time, really has little or no side affects, you can take it for 50 years and never have anything happen to you. The only thing they recommend is that you have eye check ups frequently, apparently they say your eyes can be affected. I had mine checked last year and they were fine..

ange

Feels like the TinMan

9/ 5/08 6:10pm

lupus was already ruled out by my PCP (i didn't have any of the symptoms other than migratory joint pain). my pcp referred me to a rheumy, but they couldn't get me in until OCTOBER, and that was july 17 when i got the referral. i was in so much pain at that time that i had suicidal thoughts and i just figured i wouldn't wait around letting it destroy anymore. i called around got this doc, and they asked when i was dx and when i told them it was days prior, they put me on a cancellation list asap and i got in in 2 wks, otherwise the wait was like 6 wks. so at least they were pretty quick in getting me in. the doc did bloodwork (meantime i was feeling bad still, and then the stress of having to wait for confirmation got me wondering if it was all in my head, because the rheumy, being less than enthused kinda made me feel like it was). so dx confirmed, he moved right into the trmt plan,but we really didn't discuss what to expect, and how fast it could progress or not progress, and never even mentioned xrays. when he did my physical exam the first time, my first pain free day, and that's probably why he didn't order xrays. of course 3 hrs later after that exam i was in excruciating pain...it figures. so i'm going to assume that he didn't feel xrays were necessary? i'll ask next time i go.... there are a list of side effects of plaquenil, and as scary as they look, i've not had problems. the relefen that i'm on is probably worse....

SuziKelley

9/ 8/08 10:57am

Hi Angela =)

I'm new to this site (as of today) but not new to RA unfortunately. I was diagnosed 9 years ago, when I was 22, and shortly after the birth of my twins. My Rheumatologist actually called it "post partum rheumatoid arthritis" ~ and told me that it would probably go away within 6 months. Well, 9 years later here I am! :-p I've gone through so many different stages of this disease. So many medicines, tests, etc... so many different emotions and stages of grief... I even went through a phase where I was just so sick of it all, that I stopped EVERYTHING. I stopped all of my meds and stopped going to the doctor... for about a year or more. I was so sick of medicine, so sick of doctors, and just sick of everything that had to do with RA. Now I'm sick of being in so much debilitating pain! LOL! So I've found a better Rheumatologist, and I'm going to start taking Orencia tomorrow -- I'm really excited! I had given up hope on a pain free life, but now I have to say that even though it scares the crap out of me to hope that this will be my "miracle" drug, I can't help it. I've felt so defeated by this disease for a long, long time. Like you said, I can no longer wear sexy shoes. No heels at all... and one of my feet are kind of deformed now from RA, so the shoes even have to be wide now. Even sexy sandals are out of the question. I limp ALL the time. If we go to a fair or festival, my husband has to push me in a wheelchair. Talk about humiliating. I hate it all. But I think I'm finally getting to a place in my life where I'm starting to accept it. I have talked to a few people who have actually been able to embrace RA as a part of their lives.... I'm not there yet.

I'm rambling now so I'll stop lol. I just wanted to comment on your post, I understand how you feel. And it feels good to be a part of a community who also understands how I feel. (((hugs)))

~Suzi~

Angie

9/ 8/08 2:08pm

Hi Suzie,

Thanks for your email. I tried stopping my meds too when I was sick of taking them and then about 2-3 weeks later all that horrible pain came back. I am too sick of taking medicine everyday, it consumes our lives, we always have to remember taking every morning and every after meal at night. I hate it... does that mean that I too will have deformity of my body< I've only had it for 2 years, does this happen to everyone? The current medication I have been on Sulfasalazine for about 2 months, it helping but I still get pain in my foot and fingers, I am also on Plaquenil. What's this new drug your going on? is it new and what are it's side affects?

Wow I'm sorry you have to be in a wheelchair! are we all going to eventually end up like that, how long after being diagnosed with RA did you end up in a wheelchair? Did you ever go into remission like they say when you have a child?

If I'm still getting pain and swelling does this mean that the drugs I'm on aren't working very well?

SuziKelley

9/ 8/08 2:32pm

I don't know for sure if you will have deformities... my right ankle has always been my most problem area. It is ALWAYS swollen around the foot and the ankle... that spongey soft swelling all around. I can't walk normal on that foot, I've always had to walk kind of on the outer side of the foot... otherwise the pain of taking a step is unbearable. From what I understand, if you don't take some kind of medicine that slows the progression of the disease (like Enbrel, etc) then joint damage is inevitable... and once there is joint damage, it can never be 'undone.' I've taken sulfasalazine before, and it helped some. Plaquenil never did anything for me. I didn't respond to any of the more mild medicines... but I understand they need to start you on the mild medications to see if it will work for you. The best I've ever done was on Enbrel, and injectable methotrexate (before there was a shortage). After a few years, Enbrel started to not be as effective for me. The new medicine (from what I understand it's a couple of years old) is Orencia, which is a once a month IV infusion given right in my dr's office. Of course there are possible side effects, but you will find that with any of the RA drugs. That's why we have blood work done regularly, and I have never had any abnormal blood work results thankfully! I guess when you live with a disease like we do, you have to choose the lesser of the 2 evils. Right now, I just want to be able to go for a walk with my kids. That would be so awesome! I've heard wonderful things about Orencia... but all of these medications work differently for different people. I'm so afraid to hope, but man would it be nice!!!

And please don't worry about the wheelchair... I only have to be in a wheelchair if we go to a fair, festival, or somewhere that I would have to walk a lot. Even walking through the mall is challenging for me... but I refuse to park my butt in a wheelchair unless it is the ONLY option for me. I'm kind of stubborn sometimes!

In answer to your question, I did go into a sort of 'remission' when I was pregnant with my 4th child. (I had my older 3 children before I was diagnosed) When you're pregnant, your body produces a lot of natural steroids... so you do feel pretty good. I wouldn't say that I didn't have any RA pain... but it was much better! It started to come back pretty quickly after I gave birth, though. (like within a couple of months)

And yes, if you are still having pain and swelling (after giving your meds enough time to really get in your system) then I would try something else or a higher dosage. It's such a pain in the butt to experiment with all these meds and dosages... and you have to wait forever to see if it's going to work for you... but one thing I've learned after all these years is to be more assertive with my medical care.

If I'm still getting pain and swelling does this mean that the drugs I'm on aren't working very well?

Angie

9/ 8/08 3:02pm

Hi, thanks for all that information, it's very helpful !!!

megan

9/18/08 2:51am

i hardly read online about RA beause its been 3 years and i can't stop feeling singled out by the universe for the swift kick in the ass... ;(

i'm 25 and was diagnosed when i was 22.. It took half a year before i was approved for Enbrel, but they finally gave it to me because it was geting really out of control. Both my knees were so huge i could no longer walk and th damage in my right elbow will never go away now.. But, i'm scared lately about Enbrel because i know the infections or illnessess out there could be more serious for me that other people.. but i'm also scared because i know if i miss my shot i start to swell up ( in my elbows first , get real hot then swell and then i get really terrified that joint damage will happen). I do hope the Enbrel is less severly bad that is said, but i know something that is a biological med has to be insaine... i mean our bodiies werent meant for this, but i guess having RA is a weird fluke..

Angie

9/18/08 1:50pm

Hi, good luck with that medicine. I'm too afraid to go onto those meds. I think I'll stick with the Plaquenil and Sulfaslazine for now and see how I go. I am doing pretty good on both these meds, I can do most things without too much pain and am sleeping really good with no pain waking me up. My rheumy said that I should think about going on Remicade and to think about it, because there was erosions in my foot, but I've thought about it and I feel good enough right now that I don't want to take that step. I really haven't read too many good things about those biomeds, every person that I read about that had that stuff were really sick from it and the sick affects are just aweful. If I get really bad, then I will have no choice really, but until I get that bad (hopefully will not) then I will choose to not that it.

let us know how you do with that.

ange

Beverley

10/ 1/08 10:30pm

Hi, I am a female with R/A for 38 years, Got it when I was 26 two days after my second child was born. woke up middle of nite with left knee hurting.Dr said stop bothering him come in morn and he said nothing wrong with you went to another clinic. with in hour was all cripped up and just before a spinal tap test showed R/A. Been on many meds but followed Dr advice never questioned side effects pain was to bad. Good days and bad days but pain is still there two knee replacements but still hanging in there and wondering when does it ever get better. hands are crippled but still use them when I can. Dr now is talking about Remicade never been on it am scared to try it been on imuran for years and now started plaqunil. I have come along ways from when I first got it as I am no longer curled up in a fetal position. I can get around some ,walking is my worse. Hang in there and never give up.I live alone and am unable to clean but try when I can. You are not alone.Maybe some day we will get a answer. Bev

mindy

10/ 9/08 6:02pm

I was diagnosed a year ago with luck and a little help from above I was only bed ridden a few days. As I have 2 children and a load of farm animals to care for it was imperitive that I get strength back quickly. I am probably lucky if I am 65% of the person I used to be (energy wise). Enbrel has been a boon for me but the best piece of advice I ever recieved(even though I viewed it as cruel at the time) was from another ra sufferer. She said "stop wanting your life to be what it used to be you will never have the energy you once did, you will always hurt, get on with your life with what you have now." Yes we get depressed, frustrated and even angry, but move on do not let this nasty (invisible to other people) disease get the best of you! You are not alone.

Angie

10/ 9/08 6:16pm

Hi there!

Thanks for your comments, I really appreciate it. I love how you said "invisible disease" that's exactly right, everyone thinks we look as normal as them, therefore we don't have a disease !!! Yes I'm certainly reminded that I'll never have the same energy I once had, every time I walk up the stairs I feel my knees cracking and climb them with much more care.

I tell you what though, a couple of weeks ago I completed a 10K marathon walk. I was soo proud of myself, I completed it in 1hr and 32 mins. (Feet were aching after :(

ps. I just bought some Tylenol Arthritis (they are new on the market), thought I'd give them a try with my other meds, maybe they'll help a little with pain !!!

Take care

ANge

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