Wednesday, May 30, 2012

Life with RA

By Sharte Monday, March 17, 2008
I am 39 years old and was diagnosed 5 yrs ago, and misdiagnosed for the 3 years before that as Burn out. My pain mostly started in my feet and knees. I was so exhausted all the time and thought wow, is this what its like in your 30's. After going to the doc every 6 months and being told it was burn out from working a full time job, running a farm and raising 4 kids it looked logical. But why did I walk like a 103 year old every morn for 2 hours?  Also no amount of sleep was enough sleep. So Cut down my burn out, let more go as in house cleaning, cut back to a 3/4 job, and cut down farm animals drastically. Then out of no where a bump came between my toes. I thought it was nothing but showed the dr. They thought it ma be a ganglion. After a xray, then a bone scan then a Mri, it showed a huge mass in my foot. Still not knowing what it was I had a biopsy. Out inside the bone of my foot. Then booked for surgery, the mass was removed. It was RA. I had RA. I worked in a nursing home, i saw the deformities of our clients hands. I bawled in the dr office. I didnt want that. Started on plaquenil, then added methotrexate pills. Became very ill. Had the pills while i was off work for 6 weeks for my surgery. I was not only sick and tired, now I had nausea. So after a trial of the methotrexate pills, I had to quit them as i was going back to work tired and in pain could not also be puking. So they added Sulfasalazine to the plaquenil and of course pain killers. After being back to work for a few months I had to admit I couldnt do it. So I had to quit my job. Very hard as I have always worked. But I knew I was not able to do my job 100%.As well after work I went straight to bed and slept all weekend as well. My 4 kids were now looking after me. Not the way its to be. During all this my husband and I became seperated, so my kids needed a mom. So quitting work aloud me to sleep all day, and see them for a few hours before bed. Then sleep all night. THere was only a certain amount of energy to go around, and they deserved all I had. Any way for a few years the dr have wanted me to go on new meds, meth shots, or Humaria or embrel or remicade. This scares me. The new meds dont have long term study effects as they are new. The methotrexate has been used longer. SWo this week I will give in and try them for 12 weeks. I still want nothing to do with the new Biologic meds. Maybe someone can give me input on them. I have read alot, but as I said they dont really have a long term effect history that makes me feel a o k. Any way lots of days are couch days with blankets over the head. Loved ones try to understand, but sometimes it does not come across right. If I hear one more time "well if you go out for fresh air and see the sun you will feel better" I will puke. If thats all it took would life not be swell. Any way thats a small part of my life over the past few years. You know its a pain one does not see thats why I feel some dont understand it,if a bone was sticking out with blood gushing other would know your knees hurt. Unless you are in ones shoes you cant judge their life or pain.me
Methotrexate
Hollybgroovin, Health Guide
3/17/08 4:40pm

Wow, you have been through so much on your journey.  And you are right when you say no one understands because they can't see your pain.  I couldn't have described that better!  Even others with RA can't fully understand your pain, because everyone is different.  But I can say I identify with you.  My story played out quite a bit like yours with the diagnosis and having to admit to myself that I could no longer work, even though I tried so hard for quite awhile.  When I try to explain my pain to my friends and family I tell them that it felt like every bone and joint in my body was broken.  That is exactly how it feels to me.  I often tell people that it seems like RA only effects the strongest ones, and that's how it sounds in your case as well.  It's almost like it's lifes way of forcing us "Superwomen and Supermen" to slow down.  I understand a little bit on how you feel about the biologics.  You have to be able to have some control in your life especially after RA has taken control of so much as it is.  I have attached some links on the studies of biologics.  I hope this helps.  Please don't think I am trying to push you into biologics, as I completely understand your position on them.

 

http://www.healthcentral.com/rheumatoid-arthritis/c/53/1832/orencia/

This link is for Orencia, which has less side effects than most of the biologics

 

http://www.enbrel.com/ra/clinical-experience.jsp

This site tells about the long-term experience of Enbrel

 

If you would like me to do further research perhaps on humira or remicade, let me know and I can get you some sites on that research as well.

Keep your head up, and please know that we are all here for you whenever you have questions, need advice, or just plain need to gripe.  Good luck, and best wishes! 

3/17/08 5:02pm
Thank you so much for your letter. I actually am from  Canada and every RA class I take or sitting in my RA dr office everyone is over 70 I am sure. Its kinda cute , but also sad, at the courses little 80 year old women discussing their RA saying "I just cant do what I used to". Its cute, I feel for them, but I cant do what I used to and I was only 34 in the classes. I feel most sorry for my kids, as a single mom(of 3 years now) as he works away, it just feel apart. But on a daily basis my kids come home and know where to find me, in bed. Makes me sad thats not how I want to be remembered. Oh well. What are you gonna do. I have denied needles till this week. My RA is getting worse and she wants me start Methogtreaxte, then switch over to Embrel in 12 weeks. Thats how it works in Canada you must try the cheaper one, if it doesnt work then you switch to the more costly. I live in Alberta, my mom just sent me a copy of a paper that the province to the East, Saskatchewan(I moved from there to here in 1996)is now giving Embrel and I beilve Humaria for free under their drug plan act provincially for those who need it. Our Province there isshan a charge not sure what the prices are and how much they will cover yet well have to see. Anyway I am scared as hell to take them anyway. I feel if your disease dosent kill you your meds eventually will, actually was also a quote to me by my GP.Its a big step to take meds that dont have a long term effect study. Look at viox, it was a wonder drug, till people dropped from heart attacks. I am scared. And I am never scared. Guess well see if I can get up the nerve to start the methotrexate. I just have so many fears, hair loss, nasuea, is it worth it???Tell me your thoughts. Have you had methotrexate?Thanks and good luck...
Hollybgroovin, Health Guide
3/17/08 5:47pm
Methotrexate is definitely scary!  I have taken it once a week for three years now.  I now take 25mg one day a week in pill form.  I have experienced the hair loss although that doesn't effect me anymore.  I do however still have nausea, weekness, and dizziness.  On the upside it helps tremendously, and my rheumatologists says I will continue to take it when I start my Orencia.  But now instead of having 7 bad days of severe pain.  I have mostly 3-4 bad days with the side effects of the methotrexate.  It doesn't make the pain go away, but really does help.  I hope it works well for you.  It does take a while to get used to though, as the side effects can be a little harsh for some.  But try to give it awhile, I think it started really helping after taking it for about a month.  I have a lot of sinus infections while I am on it, but I guess that's the price you pay huh?  I am 28 and have 2 kids, a 5 year old, and an 8 year old.  They are wonderful and understand I am sick, especially since they have never really known me any other way.  Please keep us updated.  Also I am the youngest person my rheumatologist sees in his office so I can completely understand sitting next to the older woman and their RA conversations.  They all look at me like they don't understand why I am there.  Oh well, maybe I will be able to have an RA conversation with them someday if I get up the nerve :)  Best wishes!
3/23/08 10:34am
Hi Sharte, I took methotrexate for the first few months and I did not have any negative side effects.  But I stopped because i want to get pregnant.
3/17/08 7:39pm

Wow!!

3/17/08 7:52pm
Okay....let's try this again. WOW!! What a testimony. I have had RA all my life so I know about being the"BABY" in the dr.'s office. It's so nice to finally connect with other younger RA suferers. We should start a club! Methotrexate and plaquinil didn't work for me. The only thing that's worked is prednisone but it came at a cost for me....lots of late onset side effects. I've been on it for 25 years and now I'm going to try Enbrel so I can get off the pred. I didn't have  any side effects from pred until about 8 years ago. Now I have the weight gain, bone loss, bad immune system and Cushings disease. It was a great "love affair" while it lasted! I hope and pray that this new treatment works for you and the side effects are minimal. Methotrexate worked great for my nieces and I've also heard great things about the biologics. Keep an open mind and do lots of research. good luck and God bless.
Anonymous
Rhonda Doss
3/21/08 9:33pm

 

Hello Sharte,  I was just reading your story and I have lived with RA for 10 years and Im only 35 years old.. I have taken two different TNF drugs, Enbrel and Humira.  I started off taking methotrexate and planquenil, they did very little for me and then I changed Dr.'s and he suggested that I try one of the new TNF drugs so I did.  I started taking Enbrel about 6 years ago and felt wonderful for about 5 years and than about 6 months ago the pain was back again so I just started taking Humira about 3 months ago and still do not feel near as good as when I first started on Enbrel.  I have not had any side effects that I can see right now but I look it as I would rather enjoy the years that I have now when my kids are young and pray that they come up with a cure for my future..The part about giving my self shots , it's not the easiest thing to do but the benefits of it pay off.  I hope this has helped you some..    

3/23/08 10:31am
Hi Sharte, I'm also 39 yrs. old and have RA for 3 years.  I know what you are feeling.  We just have to accept it and live with it.  Yes, people around us do not know what an RA is and always mistakes it with osteoarthritis.  I have stopped explaining, and stopped telling people why, how, what, when....I just live with it cause people won't care.  Its scary but what else can we do?  For the people who care, those who are trying to find a cure, I pray for you.
Anonymous
Supersoy
10/24/08 11:39pm

I was diagnosed with RA April 2008, I am 54 years old.  I now know I had RA many many years ago, I think in my early twenties.  I have rhuematoid nodules (on my elbows, and feet) have had these for many many years, they were just never diagnosed as such.  I also was told I had burnout about 8 years ago, working a full time job, doing university at night, single parent, exhausted most of the time.  I finally changed doctors.  I am lucky I have a good rhuematologist now.  I have had no negative side effects from this medication, and I do believe the benefits outweigh the risks.  My rhuemy says my RA is moderate which is a 3 on a scale of 1-6. From what I have read, I think mexotrexate is the same as methotrexate, is this correct?

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By Sharte— Last Modified: 09/21/10, First Published: 03/17/08