Recently diagnosed with RA | Arthritis Information

I am a 49 year old woman who was recently diagnosed with RA. I have had pain and stiffness for some time but was not insured until April to see a rheumatolgist. After many tests, he is certain I have RA. He wants me to start taking the Methotrexate along with Plaquenil. This all scares the hell out of me to be honest. Doc told me if I don't start taking meds I will be crippled within five years. I have been on and off prednisone for about a year. Please tell me your experiences with Metho, Plaquenil and what you did when you were first diagnosed. I am an extremely active woman who loves life and especially hiking. I am very concerned about side effects but I want to do everything I can to preserve my lifestyle. I am grateful I found this website and would really appreciate your feedback. Thank you.

WELCOME!!!!!

I am 47 and have been on mtx, it took a little while to get use to it but i am doing better, I also take enbrel too. I am quite active, also, you will learn that some days will be really great and you feel like you could conquer the world and other days you just want to throw the covers over your head!!!!

Welcome Roxy. You've found a great resource already. We've all been where you are now and I'm happy you found us early. Most of us were not that luck.

I'm a 34 year old woman dignosed with RA 11 years ago. I've been on MTX (now at 22.5mg) for about three years now, and I also take weekly Humira injections. I'm doing better now (I think thanks to Humira) than I have since being dignosed all those years ago. I started out taking Sulfersalazine; and eventually added plaquneil...but that combination really wasn't very effective for me personally. We're all different though; and what works for some won't work for others...and what works for you today more than likely will not work for you in another 3 years.

Your lucky to be starting MTX early. I wasn't given that option early on for whatever reason. Years ago they didn't start out as aggressively as they do now. I honestly believe this medication has helped me so much. I know it's a little scary....ok; REALLY scary, but you sound like a really strong woman. You can do this. Your life is far from over.

Start studying and educate yourself on your condition. And keep coming back here. You'll find this place to be an excellent support system through good times and bad.

Good Luck to you Roxy...and welcome again to our group. We're glad you're here.

Lovie

Welcome Roxy

Whoa! Those smiley faces can get kinda scarey when you enlarge them.

Finding out you have any chronic disease is a shock and takes awhile before it sinks in. Yes, it will impact your lifestyle, but at this stage no one can say how much. Hopefully the meds will help you feel better. I have had arthritis 24yrs. In the beginning, I continued to go hiking, tent camping and everything else. I have had to gradually give up some of these outdoor activities. Nowdays I go camping in a motorhome and the hiking has to be confined to good paths so that I can use my "explorer" model walker. I ride my bicycle and I can still go fishing, even if I never catch anything.

Nowdays, Drs. have so many new drugs that people don't have to be all crippled up. A lot of people here have made the choice to take these meds and have a fairly normal life.

If you aren't too scared of needles MTX injectable is great, it allows you to bypass the bad nausea that the pills can cause. The injection doesn't hurt either.

Good luck to you, see you around he water cooler

Barb

When I was first told I had RA 14yrs ago, I was put on plaquinil. This alone didn't do anything for me. So they added methotrexate, and it's helped a lot. Over the years I've had to have the MTX increased and am up to 25mg now. Up until now, I have not had any problems with MTX. You'll have to go have regular bloodwork done and if there's a problem, they'll be able to tell with that. I just found out that my white blood cell count is down and am currently off the MTX until I'm told otherwise.

My reaction to these drugs was just like yours. I didn't want to take them. I refused to take them for a while until I couldn't get out of bed one morning. I felt so much better once I started taking the MTX. I'm on other meds as well for the RA, but plaquinil and MTX are the 2 I started out with.

Good Luck!

Kelly

Kelly; how many years were you on MTX before you started having the trouble?

Are you doing ok without it? I think now that I've finally found a combination that works well for me my biggest fear is having to come off my meds due to complications like your having now.

Lovie: I had been on MTX for about 10 or 11 years without any problems. There was one time last year my white blood cell count was low and I was told to get my bloodwork done again right away, but they didn't tell me to get off the MTX. This time the doctor told me to go off for 2 weeks then have the bloodwork done again. I just called my doctor for the results and it's still low and he said to stay off the MTX for another 2 weeks and then we'll check the blood again.

I thought at first I was doing very well without it (it's been a little over 2 weeks now) but Sunday I started feeling very sore and stiff and it seems to be staying. I'm hoping that it'll go away. The oxycocet I was given for pain has been making me get sick, so I get no relief there.

So I'll wait and see what happens in 2 weeks

Kelly

Good Luck Kelly;

Keep us posted as to your progress...I'll pray things improve for you quickly.

Take Care,

Lovie

I just got home from a walk in the mountains where I usually go to get a positive attitude but this time I found myself getting very worked up worrying. I honestly am crying right now to come home and find all of your replies already. My family has no idea how to respond to this diagnosis and to be honest, it seems to make my friends uncomfortable too. OK here goes with the honesty thing. I brought some reading materials with me to mts. I read that I could lose my hair taking MTX. Has that happened to any of you. I am supposed to get married in the Fall, yes at 50 years old, and I REALLY DON'T WANT TO LOSE MY HAIR!!!!! By the way, my fiance is working out of town and I have really downplayed this whole diagnosis. Thank you so much for your replies. I may post often here in the beginning because I really do need someone to talk to. THANK YOU.

I know how scary it is to be told you have a condition such as RA. I'm a 45-yr-old single mom of 14-yr-old twin girls. My family doesn't understand at all. I'm pretty much on my own. At first it was frightening, but then I found that it can only get me down as much as I let it.

Congratulations on your upcoming wedding! I wish you all the best. And you've just shown me that there's still hope for me.

Glad you found us.

Cris

I got married for the 2nd time when I was 48.

Barb

Cris

Thanks Cris and everyone who has responded. I have learned so much. I have been reading all of the posts. Still learning how to navigate around website. Better to focus on that then to focus on my worrying. My fiance and I fell in love in large part because we are both so active. Our favorite thing to do together is to hike. We go for walks every day when we are together. He has to be out of town right now but when we are together, we are always dreaming about our next adventure. It doesn't seem fair to ask him to commit to someone that will take that away from him someday. I am feeling very sad today but I know that I am not clear headed. I am learning a lot from reading your posts and I will take it one day at a time. I have chosen to not start treatment until I feel like I am better informed. My doc will not be happy with that, but I need some time. Day after tomorrow I return to work. It has been quite a painful week as doc did not want to give me Prednisone until he did the many tests to confirm my RA. Now I got the Pred injection, in the past I had taken it orally, and just waiting for it to work its magic. Too bad that Prednisone is so bad because it has really relieved my pain so far this year. One day at a time............ Hey roxy and welcome! Im fairly new myself. hehe. Ive had RA for about 5 years now and just now im getting good meds. I know that getting educated is extremely important and that right now everything going on has you all upset. But it is very impoartant that you treat RA aggressively. Waiting can be worse in the end, believe me I know. The beginning is always tough but you will get through this. You should to talk to your fiance so that he also can support you through this tough time. I did just that not too long ago hehe, I sat my fiance down and told him everything, i educated him on RA as well since he is going to be going threw this with me. Also maybe joining a group or some counseling always helps. I see a counselor once every too weeks and it helps so much to just let it all out. :) Don't worry, as time goes on things will get easier! I wish you the best of luck hun :)

Roxy;

We're so happy your here and that you've found what we've all found...love and support from people who understand exactly what you're feeling EVERYDAY.

I responded to the other post about hair loss fears so I won't go into that but I want to give you one other piece of advice. Please be totally honest with your fiance. Marriage is hard even for healthy people but for people with a chronic illnes it can be really hard; especially for those who are not prepared.

I have heard some horriable stories lately of husbands who are uncaring, inconsiderate and almost curel. The stress of that kind of life can make this disease almost unbarable.

I'm married for the second time now. I was afraid of getting involved again; as a result of memories of the first go around. I pretty much did like you said "Down played" my problems with my now husband until I had a major flair and could no longer hide it. I broke up with him because I didn't want it to ruin his life too. BUT he presisted and educated himself on the disease and treatment options....and he came to me and told me we'd manage just fine TOGETHER. I'm so grateful now that I have total faith that he entered into this with his eyes open. When I'm ill I don't feel guilty....and he's never been anything but supportive. He knows what's happening, he knows what I need to help me, and he's such a comfort during times that can be very painful....and scary as well.

If your fiance loves you like you want him to he'll do the same thing. Learn what it's about. Know what to expect, and understand when you have limitations.

You're life is not over Roxy. You might not be able to hike all day like you've done in the past...but you will still be able to hike. You can do all the things you've done before in moderation. Eventually you'll be able to tell when you've met your limit and you'll adjust accordingly.

Sorry this one is so long....I just so get up on my soap box when we start talking about love and marriage. I've been through alot....and things have finally turned around for me; including love and a happy marriage.

Trust in your love. If it's strong it can with stand. If it's not...nows the time for you to know; trust me on that one.

I am so grateful for your insights into my situation Lovie. My sweetheart would only be supportive. When I told him that I was insecure about how this was going to affect our relationship he said "I am in love with your soul, not just your body" hehehe Truth is I know that but I love him too. He is so active and such a good man, I do not want to impact the quality of his life and his future. He has been hard working and a giver all of his life. He has made so many sacrifices for others. He is seven years from retirement. I think this should be his time. He also has a 15 year old son that needs his devotion. I am feeling very selfish asking him to deal with all this. This is because I love this man so much. He is the love of my life. I know he will make the sacrifices but I don't know if I can allow him to do that and feel good about myself. I also am scared to death to go through this alone. I can't help but hope it will all work out and we can be together. Now I am rambling. I have been so emotional the last couple days with what ifs. I know in time I will think clearer and be able to accept this whole thing better. Thank you so much for your encouragement. Especially the hope that I can continue being active and enjoy hiking. Lovie You have been a wonderful support to me the last couple days.

I can tell you love him very much. I felt all of those same things when my now husband started talking about marriage. My mother says that's the type of unselfish behavior it takes to really make a marriage work. Trust in that. It will all work out.

RA is not a death sentence and I can tell by your quote at the end of all your post "God grant me the serenity to accept the things I cannot change" that you have the strength to get through this. On my desk right in front of me I have taped "I can do all things through Christ which strengthen me" and another one my mother sent me; she told me it reminded her of me when she read it; "Life expands and contracts according to one's courage" Attitude is everything with this new life you have. Keep it positive.

Everyone deals with this in different ways; but those that decide early on that this is their situation and they are going to keep a positive attitude and take the cards that are dealt to them and play them are the ones that are the most successful at it.

It's not always going to be easy; and as long as you can accept that and be prepared for it you will always be able to deal with what comes your way.

My favorite book is "The Power of Positive Thinking" my Norman Vincent Peele. If you like inspirational type stuff this is a must have. It tault me early on to see the glass as half full verses half empty.

I'm so glad you weren't offended by my other post. I do tend to speak rather freely around here....but they haven't run me off yet. THANK GOD!! (I love this group)

Lovie

Lovie, you have such a wonderful way of inspiring us all. God has certainly blessed you.

Roxy, Lovie is right. Have faith, and everything will work out. Your unselfish attitude will make the marriage incredibly strong, and you'll both be able to deal with what's ahead... and that's many happy years together.

Cris

Hi Roxy,

Welcome!! have been unable to post past couple of days, as my computer monitor just fizzled out the other night. I have ventured into my daughter's room (we call it "the Bermuda Triangle") so I could check in on all of my friends here. I too am recently diagnosed and going through a multitude of emotions.

As long as you are up front and honest with your fiance, don't worry for a moment about having him by your side for now and forever. Read your post again and imagine it having been written by someone you've never met. What advice would you give, given what you have just read? Simple huh? These 2 people are meant to be together forever. Imagine for a moment the reverse, (your fiance is diagnosed with RA) I know from what I've read above that you would still be planning to share your life with him helping each other through whatever comes your way. He as you say is the "Love of Your Life" don't deny him his. Be good to yourself, love yourself. You are you (profound huh?) but, you are the person he fell in love with and that does not change because you have RA.

You sound like a lovely person, I wanted say hi and welcome you. It made me sad to read yours words "how could I feel good about myself"? Of course you can feel good about yourself. You are about to marry "the love of your life" and he is about to marry his.

Lots of love and best wishes,

Pam

DAMN You guys keep making me cry.

Don't give up on hiking too soon! I'm always suprising myself by doing things that I thought would be impossible with RA. (I actually tried surfing for the first time last week. I had to modify how I got up on the board because of the pain in my wrist, but I was doing it!). You'll have good days, and I predict that you and your fiance will have lots of nice hikes in your future!

Thanks Willow. I am trying to have a positive attitude. My sweetheart always tells me I worry too much. I am working on that!

I know what some of you mean about your family not understanding. One of my daughters understands, but I don't think my husband really does. I tried to talk with him and he said it was my decision on what to do. We are having other issues so learning I have RA is not helping.

My doctor did mention the hair loss which concerns me as well as others here. But I want to say to all thank you for being here for us.

Mailady

Hi Mailady - We can do this thing together - hold our virtual hands

Count hairs together

I am really grateful for this site also. Good luck.`Stay in touch.

Roxy

Roxy, welcome to the board! I am also newly diagnosed and trying to figure out my way through the maze of treatment options. One thing that has never occured to me has been significant lifestyle change. I don't see why hiking would no longer be an option for you. From what I have heard, with meds and early treatment, you can fare quite well with RA symptoms! No reason to think otherwise! Love and gentle hugs, Juliah

Hi Roxy

I am still learning my way around this site. I couldn't find your message, ha!

I took my first dose of MTX last night. Have you started to take it? My doctor suggested to take it after eating supper. She said it could help with nausea.

So you are a ranger. That must be an interesting job. We started camping at the parks a couple of years ago. Maybe you gave us the tour!!Ha.

I am a rural mail carrier myself, another outdoor job, sitting around and driving.

I wish I could help you with the question of the cost of MTX. My pharmacy usually puts the price on the savings from our insurance plan but not this time. We have insurance from my husband's job. He is retired.

My doctor wants to set up an MRI for my hands. What hurts you more? I think my hands do but it seems like my shoulders are being affected now.

Sorry this is so long. We will get thru this!!!!

Mailady

Hi Mailady, Thank you for doing it first! I was already to start after my appt. this Tuesday but now I don't know if I can. My insurance company busted me on pre-existing condition so they will not cover me for SIX MONTHS! I will have to see what the doc says. I am so

It always went from one shoulder, to the other, to my knee, the left one and my hips would ache. It would get to the point I could not walk and I could not sleep. It started right before I was laid off in Sept. and they put me in the hospital. Couldn't figure out what it was but I have always responded well to prednisone. Anyway, lately it has not been so predictable. Seems to bounce all around my body but it still keeps me awake. What scares me is the prednisone is not so effective any more. Right now it is in my L shoulder and my BUTT BONES! I am going to the doc on Tuesday and hopefully he will help me figure out what to do. I had to come home from work today because I am hurting so bad, I did not get any sleep and I want to cry all the time!!! I feel like a big baby but this has been a lot to take at once.

So change the subject. Juliahh is also newly diagnosed. Lets exchange stats. Tell me more about yourself. I am a VERY YOUNG 49 - fun loving, have to be outdoors all the time and have two dogs and two cats. My dogs go everywhere with me. One is a big weimeraner and the other is a little yorkie. They are quite a pair. Two cats is as of 1 hour ago. I stopped at the pet store on the way home and they were giving kittens away out front. OH MY GOD - I just needed it. My honey is going to kill me but I thought what would make me feel better - a kitten!!!!! I live in northern CA.

Tell me about yourself.

Roxy, where is your wedding going to be? I'm very excited for you! I'm sorry you are in so much pain now. It's hard NOT to be emotional/crying frequently when you hurt constantly. ((((hugs))))). I'm 38 years old, Christian, married and have one child (a son) and a dog :) I work part-time as a mental health therapist. I also have post-partum cardiomyopathy (a type of congestive heart failure) that I got when I was 31. I was diagnosed with RA about a month ago and refuse to let it crush my spirit. Love and heart-warming hugs, Juliah

Roxy -

I know how much my MTX costedwhen I was getting it. Here in Alabama for 2.5mg I think it was, it costed for 21 pills that was a Winn-Dixie...do not know if you know what Winn-Dixie is, but it is a grocery store thta has a pharmacy. That price was before insurance, and back in March. It seems to be one of the less-expensive drugs for us.

Hope that helps. And hope you get to feeling better soon.

Roxy,

My cousin who was a RN did not like the health care field either. She certainly didn't care for the insurance part of it. She was a terrific nurse and human being.

I am 58 years old, married for 39 years and have two daughters who I cherish. I have four grandchildren two boys and two girls. Today is the first birthday of my last granddaughter. Needless to say, they are all adorable and I could go on forever about them. There is something different about grandkids than your own children.

I live in Tx. I was raised in California, southern CA. I have been a rural mail carrier since 1984. I enjoy my job, I am outdoors driving my jeep, being my own boss so to speak. When I interact with the people on my route, I like that. Right now I feel like retiring because of my hands, shoulders, etc. but the pension in not good at all.

Don't forget when you do decide to go on MTX to take the folic acid. That seems important, my doctor stressed that. She gave me a script for 1mg. I will keep you posted on what happens or what doesn't happen.

When is your wedding? My best wishes. I know you two will get thru this together. Sounds like you are soul mates.

Mailady