Advice from people who are living with RA

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

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

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

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....

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..  =(

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?

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. 

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?

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

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..

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

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