I've been diagnosed. | Arthritis Information

 

Hey everyone,

I wrote a while back when I still didn't know if I had RA or not.  Right before I left to welcome my boyfriend home from Iraq, I saw a rheumatologist and she told me that she really didn't think there was a chance that it was RA and to not worry about it at all.
Well.... I was out in NC with my boyfriend at a beautiful bed and breakfast when the rheumatologist's assistant called to let me know that I have RA. Relax.

P.S. Oh Honey, I am so sorry. Are you going to be seeing the doctor again soon? What did the doctor say about your blood tests. Get a copy of the tests and make an appointment with another doctor if that doctor has not answered all your questions. The RA numbers sometimes don't indicate if you have a severe case or not. Your CCP isn't that high.

MTX reads pretty scary but it is the first line RA med for a reason. It works sooner, better than any other cheap medication. I've been on it for years with no problems. It really does prevent damage. All the recent research indicates hit it hard and fast to prevent damage.

They are doing a lot of great research now on RA. Your life will be so much better than the people who got this monster 10=20 years ago. I've been on MTX and a TNF for years and live a pretty good life. I thank God that I got this after the TNF's. They are expensive though and so the insurance co's make you start with MTX. I urge you to go to the Major research hospital sites and read up on it. They all have a great question and answer place too. John Hopkins, Mayo Clinic, Cleveland Clinic and Hospital for Special Surgery are a good start.

Again, sorry.    Robin

I've been on methotrexate for over 15 years now with no problems.  It's worked very well for me.  I don't get sick from it.  But I understand your fear.  I was thinking the same thing when I was told I had RA and had to take mtx.  My advice to you would be to give the mtx a try.  It may work just as well for u as it has for me.  You'll be having regular bloodwork done to make sure everything is ok.  If it doesn't work for you, there are lots of other drugs to try. Alright just because you have a high anti-ccp doesn't mean you are that sick right now. And you caught it early so you can get treated and if you get treated you should not have to worry about all of that joint damage. And sure you have alot to live for. I have an anti-ccp of 100 and i do not believe mine was caught early but i have alot to live for. Yes the meds can prevent you from being deformed. Some meds may or may not agree with you. It takes awhile for some people to find the right course of treatment. Obviously you won't stay on something that makes you totally miserable. Side effects vary from person to person. Sure you are in shock. Thats alot to deal with. I don't know what the dnase or parvovirus mean but someone else can help you out with that. You will find alot of strength and good advise on this board. Well i can not tell you that RA does not hurt. Or that it's going to be a walk in the park. It is scary. I will have to goggle the parovirus and the dnase. Sorry your freaking out, sorry you have RA.

Sorry to hear you got the RA dx, but as I say...I have RA, but it doesn't have me.  The meds that are available give us so many options and work so well to prevent deformity.  I am currently on MTX, plus a whole bunch of others.

And, you have made a big step in finding these boards, as here you are not alone.  We all understand what you are going through and will help you get through it every way we can. Sorry to hear of the diagnosis. We are here for you.

Now you have answers and you can treat the RA, and yes, live a happy life. You are not dying, and don't let the RA take over your mind. Do your research but don't get scared by what you read, get informed and talk talk talk to your doctor.

I know this is tough, because you are just starting to absorb the dx and all of the information, but everyone here is soooo helpful. This is a great place to start for info, and insight.

Good luck to you.

As Levlarry has said RELAX RELAX RELAX....................

You are not going to end up deformed.
You are not going to die........
This is not the end of the world.

Your boyfriend has probably seen a lot worse.

A lot of people on this board are with you all the way and will help in any way they can.


Just calm down and give yourself time to absorb all the information that will be coming your way.



I'm sorry everyone, I know I need to relax and that I'm probably overreacting a bit... this is all just very frustrating to me.  I'm young and this is all so very scary to me.
I really appreciate all of your replies.  It helps so much to hear from all of you.  And it's very nice to hear that many of these meds can help prevent deformity.  That is my largest fear.  I mean, yes, the pain sucks big time... but the thing that scares me the most is deformities.
I'm at a point right now where I feel like I'm living fairly normally with just little flare ups here and there... so I'm hoping and praying that I can keep this all under control.

Does anyone have any experience with Leflunomide?
I don't personally have any experience with the Leflunomide, but I am sure someone here will.  I did do a search on it and here is a page with some info on it.  http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a600032.html 

 

Both this and the MTX should not be taken with pregnancy, so if that is something you are considering in the near future, make sure your doctor knows before prescribing.

My experience was that it gave me the runs and had to pass it over.
Wasn't going to spend all my days on the toot.

Not every one is affected this way though.

Leflunomide is the generic form of Arava. Several people on this board take it. I was allergic to it but i am allergic to everything so nothing unusal for me. I thought it made me feel great really quickly and i was dissapionted that i became allergic to it. Good Luck!! And don't be sorry that you reacted the way you did. Thats what this board is here for. Post your fears tears and questions here. And I do not doubt that some day you will post good news on the board at sometime and be an insperation to others.

Hi  - I know it's scary and it can seem overwhelming right now, but just take one step at a time.  Find a doctor you feel comfortable with and continue to ask questions.  Knowledge is power.  The treatments available now can be successful and it seems like you were diagnosed fairly early in the process, so you have that in your favor.   Early and agressive treatment can help limit damage.  I'm one year into RA, have little pain, no damage, work fulltime, take care of my family and volunteer when time allows.    Am I tired some days?  Yes, I am, but you learn to adjust your priorities and say no when necessary and rest.

You're entitled to freak out a little as it does change things for you and the unknown is scary, but don't let RA become what you are.  

 

Take care

Cathy

Welcome to the "club"!   The "club" I like that :)


Yeah, welcome to the club! :) It will get less scary the more you educate yourself, so get clickin and get askin! *hugs* It will take some time to settle into all of this, but it certainly is not the end of the world and you WILL survive!! Don't freak out, sweetie.  It's going to be fine.  Do your research, ask questions, and we're here for you if you need us.

 

Hugs,

 

Pip

Welcome!  It's scary when you find out you have RA or any other disease.  I know I freaked out at first, but really, it's not the end of the world.  RA has it's downsides for sure, but once you find the medicine that works for you, things aren't so bad.

 

I know my first Rheumy appt. there was a couple of people in the waiting room that had some major deformities in their hands, I cried for weeks thinking that was going to be me.  Once I calmed down and thought about it, these people were older and I'm sure had RA for years before they treated RA agressively.  You also have to realize that everyone has different degrees of RA.  Try to relax *easier said than done, I know*, but you will be fine. Research the drugs the doctor recommends and remember, everything has side effects even a little old aspirin.  Weigh the options, RA with meds, or without.....

I take Leflunomide and have had no side effects from it at all.  I took MTX initially but it didn't work well for me and my hair started falling out so I told my Rhemy I wanted off of it immediately.  I have also started Enbrel and have had no side effects other than some injection site reactions which aren't bad at all.

 

I understand your anxiety at this diagnosis.  When I was first diagnosed I tortured myself with internet research and photos of deformities as well as statistics regarding disability, etc.  I was quite terrified but have since learned those photos and statistics reflect outcomes that were likely to occur before the current medications became available.

 

I currently have almost no symptoms of RA.  I live a perfectly normal life, go to the gym regularly, etc.  I do make an effort to take extremely good care of myself in terms of nutrition and rest, etc. which everyone should do anyway.

 

 

Hey chica.  It'll be alright, I promise.  I was dx'd at 21 too, and I know what you mean about everyone acting like you're suddenly dying.  And about feeling like life suddenly has stopped.

First off, we're not dying more than anyone else lol.  And as the novelty of the diagnosis wears off, folks will stop treating you like you have a death sentence....and you'll stop feeling like you've been handed one too.

Yes, RA can suck, but the drugs help a ton.  Yes, the side effects are scary for MTX; however, it plus my Enbrel have almost gotten me into remission.  I'd recommend asking your doc about the injectable form of MTX...it lessens the nausea and upset stomach side effects.  Other than being tired, I haven't suffered any other side effects from it.  I've been on MTX since October 2007, and have been on the highest dose for RA for the past 3 months. 

I'm grateful that the meds have some a long way...deformity is no longer a certainty, or really even a high likelihood IF you jump on the disease quickly (so says my rheumie lol).  I'm still an active person, I work out, occasionally go sailing, walk my dogs, and am getting married in May :-).  We will have at least a kid someday.  Again, I know the diagnosis and all the information that it floods your brain with are scary and overwhelming.  But, like everyone else has said, don't worry too much.  We have to adjust to our new limitations (which can be very minor) and medicinal needs, but life goes on with just as much potential and fun and just as many possibilities as ever!
~Kristen

I'm late to this thread and you've already gotten great advice here so there's not much I can add.  Of course you're freaked out, this is a lot to take on all at once, but it's like a doctor said to me, "If you've got to have an autoimmune disease, this is a good time to have it."  There are wonderful drugs out there and MTX has been good to me so far.  You'll be fine and we'll help you along the way however we can.  Post all your questions, even the ones you think are stupid.  Believe me, we won't think they are, because we've all been where you are now, maybe at different ages, but with the same fears and questions.  And oh yeah, welcome.  You're among friends.  I'm so blessed to have found all of you!!

Ok so a few questions I have...

Do any of you drink while on these meds?  I hardly ever drink, I didn't even really on my 21st Bday... but I still like to go out once in a great while and drink a bit with my boyfriend.  Is this going to be possible while being on MTX?

Also, none of my symptoms are enough right now where they bother me at all.  So I feel like I should avoid meds as long as possible.  But at the same time... is it best to get on these meds asap to prevent joint damage?  I'd rather be off of meds but preventing joint damage is the most important thing to me.
And why does my doc want to put me on MTX AND another drug (that p one... I'm having a brain fart and just forgot the name)?  Do I really need to go on both, or could I just start out with MTX?
Don't avoid meds.  You don't want your disease to progress as it often does early on.   I'm not a real big drinker, but I have a cold beer or a glass of wine every now and then.  If you take methotrexate you aaren't supposed to have more than two drinks a month.  In fact, some doctors say none at all.Is the other one plaquenil?  I don't take that one, but I do take two RA drugs.  Sometimes the two compliment each other and will manage your disease better than just one alone.Yea a lot of people are telling me to not take the drugs... but I feel like that's my shot at not becoming deformed.  I caught it so quickly... I don't even really have any issues right now... if I could keep it like this it would be not a big deal AT ALL.  I feel like maybe that's possible with these meds? Definitely do not avoid getting on the medicine.  One thing about this dadgum disease is that it is progressive if left to its own devices.  I'm on plaquenil, and though it did not do anything by itself, my rheumie told me what Linncn also stated...it works really well in combination with other drugs to magnify their effects.

As to the drinking, the rheumie who put me on MTX ok'd me for 4 beer or beer equivalents a week.  Each rheumatologist can have a different opinion on that, but as for me, I generally keep it to 2 or less beers/beer equivalents a week, and my bloodwork has always come back just fine.  Granted, I'm not really a drinker and don't always have the 2 a week, but nevertheless. 
Have a good evening!
~Kristen

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