Just Diagnosed w/RA and SACRED

iVillage Member
Registered: 02-06-2004
Just Diagnosed w/RA and SACRED
45
Tue, 02-08-2005 - 8:59pm

Hello,

I am 31 years old and married to a WONDERFUL husband we have 4 kids and I was diagnosed with RA on Feb 3rd. I am so scared and confused with all of the medications out there. I am on Sulfazine EC 500 mg (a sulfa medication with an antibiotic). My RF was high and my ADA for Lupus was neg. My X-Rays look great with no signs of RA. I have swelling in my toes, a few fingers, my knee and now my ankle. I hurt and walking is difficult. I noticed pain in my toes in November of 2004. So my Rheumatoligist said it is a VERY early stage of RA.

Who out there has been diagnosed at a young age like me and is say 50 or 60 now....I guess my biggest fear in all of this and my question is can I live to be 60, 70 or 80 with this disease???? I can live with the changes of my new life and I will do anything to make myself better, but I need to know if people DIE from this?

What is your advise on medications......early diagnoses like myself - should I begin with aggressive treatment or should I stick with this antibiotic treatment that I am on now - has anyone had good results with Sulfazine???

Help me - I'm scared I need reassurance!!

Glad I found this site.

Laura

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iVillage Member
Registered: 10-19-2004
Tue, 02-08-2005 - 10:22pm
Hi Laura, I'm sorry to hear you have a dx of RA. I sounded pretty much like you a year ago. I'm 40 and still trying to find the best combination of meds. I have heard that aggressive treatment early in the disease is best to prevent any damage from the RA. You have found a good place to come to for support and knowledge. They have helped me through alot. The ladies with a little more experience with this will be very helpful to you. Good Luck, Ronda
iVillage Member
Registered: 06-11-2004
Tue, 02-08-2005 - 11:35pm

Hi Laura-

Welcome to the board. It's a great place to vent and let go of your feelings.

I'm 34 (soon to be 35) and was diagnosed with arthritis a year ago this month. I too am in the early stages, although I have Spondylitis (a type of rheumatic arthritis that affects the spine and peripheral joints). My rheumatologist put me on an aggressive treatment of Methotrexate. She explained to me that it was once thought to be conservative in regards to the treatment of arthritis with medications, but now the sooner they (and you) can manage and stop the progression, the better off you are.

It is scary. And I don't know about you, but I don't like it. I have not adjusted to my 'new life' even after a year. And this may sound weird, but it's tough being in the early stages of it. Because people look at you as young and perfectly healthy and there's no reason why you can't do things like lifting and walking, etc. But you feel awful and your life is full of uncertainity in a totally different way than those around you. My group of other thirtysomethings, were socializing and making all these life plans. My plan is just to get well within the next few years - so I can focus on something other than my daily level of discomfort and lack of stamina.

Are you going to die from it? That's a tough one. I've read that RA does shorten people's lifespan by 10 years. But, the course of the disease is different for everyone. After a few months of treatment, you may go into remission for a long, long time and that will be the end of it.

My best advice for you is to read up on your RA. There are good books out there (Barnes and Noble is a great place to find them) and the internet has a ton of information. And read up on the medications for RA - even the ones you're not taking. Because one day your Dr. may want you to take something and it's always good to be familiar with it right off the bat. Ask questions of your rheumy - they are and should be your best resource. I mean, I looked up everything - all the medical lingo my doctor said, I looked up to find out what a Patrick's test was and why I tested positve for it, etc. Knowledge is one of your best defenses against this.

And reading about what other people with rheumatic illnesses are going through - such as this message board - helped me a lot. Keep a journal of your symptoms and what, if anything, triggers the pain.

Just take a deep breath. There's a lot of people who will help you get through it - including the women on this board.
Susan

iVillage Member
Registered: 03-25-2003
Wed, 02-09-2005 - 2:14am

Hi Laura,

Welcome to our board. The ladies and gentlemen (there are a few) on this board are caring individuals with a ton of knowledge. There is a vast range of ages here.

The first thing that caught my attention was that you say anklee, knee. RA is symetrical, if one wrist has it, the other one does too. Sometimes it is not as bad on both sides, but eventually it affects both of them, both hands, both knees, I hope you understand what I am saying. If your RA was caught early, you have a lot of options. The best thing is to attack it aggressively as the worst damage is done in the first 5 years. Now remember, I am not a doctor, this is my opinion and what I have learned from my rheumies, reading and this board.

I will give you a short history on my case. I was dx 6 years ago, I am 57. It started all at once and within weeks I had hands that looked like boxing gloves. The dx scared me to death. I was not expecting RA. My RF is negative. My rheumy at the time was/is a wonderful doctor (we moved). He said we caught it early and he believed in fighting with the big guns. I have very little damage after 6 years. My knuckles are a little swollen, but no-one notices, just me!! I was immediately put on a high dose of Prednisone with a taper. Never stop the steroid cold turkey. You must wean yourself off of it. I also started Methotrexate (MTX or meth - all the same). I slowly upped the dose of the Meth and it took 3 months to stop the Prednisone. At that time, Plaquenil was added. It is common to use a combination of drugs to control this. After a year, at the top dose, the meth made me nauseaus and I switched to Arava. It did not work as well for me and in 6 months Enbrel was added to my list of drugs. After 2 years, I went into remission. I was off all meds for 8 months. Then the RA reared it's head. I went on Plaquenil and Minocycline. It did not work for me and in 3 months I went back to Enbrel and Plaquenil. A year later, I added methotrexate to the other 2 drugs. It does control my RA. I do have pain, some days are worse than others. The fatigue is another issue. I have found that the fatigue has never been as bad as it was those first 3 months. Exercise is important, it helps fight the fatigue. I do not mean to go out and run, but just walking helps. If your body allows it, then do what you can. It is important to listen to your body and you will learn how to do this as you go.

There are many young women on the board who have become pregnant, work and raise their families. This disease is not a death sentence. We don't know how long we will live, we could get hit by a truck tomorrow. I have a good friend that is 34. She has had RA since she was 20. She works and is hoping to start a family soon. Her mother has had RA for over 25 years and her grandmother has it and she is 85!! RA and the medications affect us all a little differently. I can promise you this, it will get easier for you. We all have bad days, weeks, etc., but there are plenty of good days too. Talk to your rheumy about all your fears. You and him/her have to become partners in treating "you". I suggest to take your husband with you to your rheumy appointments. Mine was scared too and asked a ton of questions.

I hope this has helped a little and I am sure more will post.
Good luck and I look forward to getting to know you better.
Gentle Hugs,
Vicki

iVillage Member
Registered: 04-08-2004
Wed, 02-09-2005 - 11:43am

Welcome, Laura. Sorry to meet you under these circumstances. I'm a bit like Vicki--my RA came on like being hit by a truck overnight about six years ago and fairly late in my life--I was 57. Fortunately, my family doctor ran all the right tests so I received a quick diagnosis and referral to a rheumatologist. Between my doctor's diagnosis and my first rheumy appointment, I read everything I could get my hands on and talked to several counselors at the local Arthritis Foundation office who had RA themselves. By the time I saw the rheumatologist, I knew that I wanted early, aggressive treatment. Even though it was not his normal routine at that time (it is now), he agreed to give it a try. Well, believe me, I have tried all the treatments. We finally hit upon a combination of two of the older drugs, methotrexate and cyclosporine, that are working well for me. Unfortunately, I had to have knee replacement surgery--as much the fault of an old injury as RA. Other than that, the only joint damage I have is in the top of one foot. Like many, my main complaint is fatigue.

RA has changed my life--it is a chronic disease. I have traded some activities for others, found out who my real friends are, learned to greatly appreciate my family, and discovered the things that are very important to me and those that I can let fall by the way-side. I know myself a lot better than I did six years ago. I still work full-time and, other than the knee surgery, don't think I have missed a day of work because of RA. I did trade a more stressful job for a less stressful job and then decided that I thrived on "good" stress and changed jobs again.

I remember talking to my rheumy early on about life span. I had read that it shortened one's life by 8 to 15 years. He said there was really no way to gauge RA's effect on life span. And, with the new treatments that have become available in the last six years--all bets are off. Better treatment will undoubtedly alleviate the conditions that bring on an earlier death.

My advice--treat RA aggressively from the beginning before joint damage occurs. Learn as much as you can about the disease and treatments so you can help make good decisions. Molly, our CL, will be along soon, I am sure, with lots of places for you to find good information. Find a doctor with whom you are comfortable and with whom you can work--he/she is really your partner in this. As difficult as it sounds, accept the changes RA will bring to your life gracefully. By that, I don't mean to take to your bed and accept being an invalid. I mean do what you can, when you can, and don't beat yourself up because you can't do it all. Spend your energy wisely--a picnic with your children and husband is probably more important than scrubbing the floor.

And, if you need help, information, encouragement, or just to scream and yell, stop by. I've certainly found the people here are just the thing to help weather the rough spots.

Rosemary

iVillage Member
Registered: 05-19-2003
Wed, 02-09-2005 - 12:47pm

Laura,


Take a deep breath... RA is not a death sentence. When I was first dxed I was terrified. My only view of RA was my very badly crippled grandmother. I thought I would never be able to do the things I wanted in life. I was 14 when it all started. I'm now 25 and luckily have no joint damage to speak of. My rhemy has told me many times I will not end up like her.


The other ladies gave great suggestions. Read and learn as much as you can. Find a rhemy that you are comfortable with. Make sure you educate your family as well.


And most of all, take advantage of this board. Having a support group that has walked (or limped) in your shoes and really knows what you are going through is such a huge help.








iVillage Member
Registered: 11-03-2003
Wed, 02-09-2005 - 1:47pm
Laura, I am so glad you found this board!!

Molly

iVillage Member
Registered: 02-06-2004
Wed, 02-09-2005 - 3:03pm

Thank you all for such a quick response back on my questions and concerns. I just knew I would get good vibes when I logged on to IVillage. My prayers were answered and you all gave me some wonderful advice, tips, questions to ask and answers!! I am officially a hand-to-hand partner with you all. You guys made me feel so welcomed. I will be in touch and look forward in talking with you.

Taking the first step is always the hard part for me and I can say I did it!!

Here is my e-mail address if any of you have any more great websites that you would like to share with me.

6leshers@sbcglobal.net

I am seeing Dr. Alex Limanni in Dallas, Texas at The Arthritis Center of Texas (I think that's it). Is anyone else from Texas or East Texas that is on this board with RA???

I am so new to this (RA) that I have only had 2 visits to my Rheumy. He's great and so far so good. Of course my husband is great too - he goes with me every time with questions and all.

I am going to pray about the MTX and see what my Dr thinks when I see him on the 18th. He wanted to put me on it, but I got scared about the hair loss and Lymphoma. Should I be scared???? Or is it very rare???? I read Folic Acid helps reduce the side effects – yes/no….maybe? So I choose the middle of the road meds Sulfasalizine.

Thanks a million,

Laura

iVillage Member
Registered: 03-25-2003
Wed, 02-09-2005 - 4:06pm

Hi Laura,

There is one lady that I know of that is from Texas. Her name is Marsha, in fact, she is trying to make the chat tonight. Up at the top of the page is a link to Wednesday night chats. You are able to chat with others that have RA. The host is Scoot, real name is Myra. She is just wonderful and has a wealth of knowledge. I will go to chat tonight and I hope you will consider it too. Oh, chat is at 10:00 PM, ET.

My hair is thin from the MTX, but check out the Community Page, I am there and you will see I am far from bald! MTX in much, much higher doses is a form of Chemotherapy. I don't worry about it causing lymphoma. We all have to decide for ourselves how we are going to attack the RA. Good luck with your decisions.

Hugs,
Vicki

Avatar for beviej
iVillage Member
Registered: 03-25-2003
Wed, 02-09-2005 - 5:05pm
(((((((Rosemary))))))))) YOur post was simply beautiful. So many things you said is exactly how I feel. After I learned to deal with the RA chg in my life and I switched my priorities it made such a difference. And yes after living with RA for nearly 12yrs now I feel I know myself better than ever.Bev
Avatar for beviej
iVillage Member
Registered: 03-25-2003
Wed, 02-09-2005 - 5:13pm
Yep! Been on the MTX about 11 yrs now and like Vicki my hair may not be as thick but its there and there is plenty of it. The folate helps the side effects and lots of water!!!!The consequences of not going with early agressive treatment worry me a lot more than the side effects of these drugs.Sorry for your diagnosis but glad you found us.Bev

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