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Some advice and expiriences shared would be greatly appreciated!

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Rheumatoid Arthritis
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Posted 6/7/2010 7:54 PM (GMT 0)

Hello everyone! I am probably your newest member in this group! But about 2 years ago I was diagnosed with Rheumatoid Arthritis and was told by my rheumatologist I had major joint damage and I actually hit the lowest point in my life at the time. I had just had a baby and she was about to turn one...deep down I always knew I had this but I the one day I went to see a doctor because of pains in my hand, they were gonna do an x-ray that day. So the PA that was seeing me asked me if there was a possibility that I was pregnany and I said I didnt think so. She suggested that I get a pregnancy test and sure enough that day they told me I was preggos! Its always a joke in my family to say that I went in to the doctor for one thing and came out with another issue! lol...anyway after that I guess everything just sorta went into remission and it wasnt till almost a year after I had my daughter that I started feeling pains again. I had done some reaserch on my own and sorta self diagnosed myself. I went to a lab and asked for a full Arthritis panel and it came back negative...I did this because I this time I had no insurance and so that would probably be the cheapest way to find out. So it came back negative and yet I continued with pain and they just worstened! 6 months passed and I hit rock bottom..I couldnt dress myself, I couldt shower, I couldnt move period. I was stiff as a rock. During that time I had managed to switch jobs and was offered insurance. Although in the back of my I knew I had RA it had never been diagnosed by a physician. So one day when I couldnt move or drive my mom came and helped me get to a doctor where I was officially diagnosed! This was 2 years ago. During this time I have been I have been on methotextrate shots once a week, plaquenil pills, prednizone, folic acid and naproxen. I was ok up to about 6 months ago. The doctor says that I have used to meds for quite sometime and I just need to move onto something better. He suggested I start Remicade and I have been a ball of nerves ever since and have been doing some research but it seems like there are so many side effects that scare me. I do have a full time job which I need to keep in order to keep my insurance and keep paying for this. Not to mention my husband is finishing Nursing school and there is no way of him interrupting that. Which makes me the main source of income! Stressful I know. I wouldnt want it to be any other way though. I am used to working and have been very active all my life. Plus running around a 3 year old now! I know I have been greatly blessed in my life and I acknowledge gods presence in my life thru priesthood blessing from my husband, my brother, my father, brothers in law and father in law as well. Some people have even suggested Disability but what good does it do to me to recieve a monthly check while I sit at home if my medical condition will not be treated because of lack of insurance. I have been told MEDICAID or MEDICARE do not come to effect until 2 years after being on disabilty. Not to be mean but I do not want to imagine what it would do mentaly and spiritually to me to know Im disabled! Im 26 years old! How can I be disabled when I have so many things to do and take care of. I am scheduled to start Remicade June 11, 2010 which is next friday. But could some of you please give me an idea of what to expect. Im kinda tired of reading all the negative comments people have said...is it really that bad...some advice would be really nice as I have been an emotional wreck lately and feel like my world is tumbling down on me. I need to be ok right now...I need to keep helping my husband thru school and I need to be healthy to continue working to keep my insurance and be able to keep affording these treatments. All in all I just want to know I'll be alright! Please advice!
P.S Sorry If I almost wrote a book here! hahahahaha

Claudia

Posted 6/8/2010 3:58 AM (GMT 0)
Welcome to Healing Well, Claudia! I'm so sorry that your pain has gotten so bad. I don't have RA but have another disease that is similiar. I have had periods just like you describe - stiff as a board. It stinks for sure....

I was prescribed Remicade in November of 2004. At that time I was only able to get around using a walker or on bad days, using a wheelchair. After the third infusion of the loading dose, I put the walker in the closet and returned the wheelchair. Remicade gave me back my life! My level of inflammation decreased dramatically! Remicade worked wonders for me.

I did have to stop Remicade after 2.5 years when it lost it's effectiveness. This happens sometimes. I was switched to a different medication that is similar to Remicade. That didn't work that well. I switched to another biologic med like Remicade, Simponi, and have been on Simponi now for over a year. It is also prescribed for RA. I do have pain, occasionally and some times bad days, but the good outnumber the bad. Without medications like Remicade and Simponi, I would hate to think how my life would be.

I hope you get good relief from the Remicade! The vast majority of people tolerate Remicade very well. You should be just fine, and hopefully start seeing improvement soon. Let us know how that first infusion goes!
Posted 6/8/2010 3:57 PM (GMT 0)
Thanks so much for your response! I was beginning to think that no one wanted to comment on mine! lol...I am curious to know how your daily life is? How do you feel most days...I wonder if this med is supposed to take all pains and inflamations away or will I still continue with some pains. I thought that this med was supposed to make you feel like if you dont even have RA or even forget somtimes, ofcourse until your next infussion! lol...I wonder if everyone wakes up just as bad as me and how they cope with the pain to be able to continue with their daily life routines. I mean work, school, children, excercise, church duties and so on. How do you all do it????? Why is it I feel like my world is coming to an end????

Claudia
Posted 6/9/2010 9:50 AM (GMT 0)

Hi Claudia and welcome to HW and the RA forum.

Im not sure that when you have RA that there would be any 'pain-free' days more like 'less pain' days and that is achieved with the right meds.

There are a lot of forum members who have families, work and other commitments and I dont understand how anyone does it (including me lol) but again its back to finding the right meds for you.

This disease can make you feel all is hopeless, at one time or another, but when you have good days you realise things aren't that bad.

Hopefully Remicade is the med for you to achieve those 'less pain' days and as scary as some of these meds are, to me I take them for quality of life.

Good luck and keep us posted on how you are going.

Jo

Posted 6/9/2010 6:56 PM (GMT 0)
Thanks Jo! I start remicade this friday so please keep me in your prayers because I am very nervous about the whole infussuion thing. Life is pretty hard when you have an autoimmune disease like this and even worse when not many people understand what it is and see it more as a reg cold or flu that will go a away in a weeks time. Anyway. I try and keep positive and move along as normal as I can. I will keep you posted!

Claudia
Posted 6/10/2010 12:58 AM (GMT 0)
Hi Yvette, it's always scary starting a new med for RA but I like the infusions, I have them for orencia which is slightly different for the anti TNF inhibitors like remicade. You get to meet other people who sufferfrom RA or something similar you get to chat about common issues. I've found the infusions really good emotionally.

I didn't suit remicade when I had it it did nothing for me but for some it is a wonder med. So fingers crossed it really works for you. Just take in a good book, you get very tired after a while and usually doze too. Wipes you out for a few hours afterwards and remember to drink lots of water to help flush it through your liver and kidneys etc.

There are lots of us out there on infusions, they are not so bad, you just have to work them into your schedule, but the relief is worth it. The negative side effects happen to only a few percent of people who take them, be positive you're not going to be one of them. Goodluck, golitho
Posted 6/10/2010 5:39 PM (GMT 0)
Welcome Yvette- I'll keep you in my prayers for successful Remicade treatment.
Posted 6/12/2010 2:02 AM (GMT 0)
Remember to that like break through meds for pain, we have medrol dose packs for when are meds are working well but we have a flare anyway.
My doc lets me keep one in the house. She also calls me back the same day anytime I call her.
Your milage may vary but that has saved my job more then once.
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