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Posted 10/14/2009 10:12 PM (GMT 0)

Hi all,

This looks like a nice group of people.  I have recently (within the last year) been diagnosed with rheumatoid arthritis.  I didn't really believe it at first (and still maybe some lingering denial) because I don't actually have much swelling and my RF is negative.  I just have significant joint pain and utter exhaustion with high CRP and platelets as well as a highly reactive bone scan (symmetrically across almost all joints).  I was run through the mill of tests for all sorts of illnesses and three doctors later (and I have no idea how many pints of blood), they all seem to agree its RA with maybe some fibromyalgia on the side.  Prednisone was a miracle drug that I instantly felt better on but they took me off of that and started me on methotrexate and humira.  After some time on these two drugs, I still was pretty miserable.  The doc put me back on prednisone, so i am feeling better but he wants to take it away again soon.  I was thinking of trying remicade instead of humira after reading some of your posts.  Anyway, my mom died when I was 19 from lung cancer, and while the men in my family are well-meaning and try very hard, I could use some more support.  Thought I would give the forum a try.  I tried looking in the chat rooms but don't really ever see anyone in there.  Anyway, its comforting reading these forums in that I realize I am not alone.  I am still finding it difficult to realize that I have some limitations now and I constantly feel guilty about never having energy to do anything.  I am 31 and feel like an old woman!  I hear that some people go into remission, but I am getting worried after being on meds for about a year and still feeling pretty poorly.  Is there hope for me?  How long did it take for you guys to notice improvement?  Do you ever have days that you feel normal?  What should I be shooting for?  Can I hope to ever be without pain again?  Or is that unrealistic?

Look forwarding to hearing from some of you.

 Jen_RA

Posted 10/15/2009 12:08 AM (GMT 0)
Hi Jen and welcome to the HW forum :)
Sorry you have to be here though.
It might take a few combinations of meds before you find relief/remission so keep at it. I know a lot of the meds take a few months to kick in too, so be patient.
I know the 'old woman' feeling you mentioned, I often wonder if I will ever have energy again, in my lifetime :)
Take care and keep posting.
Jo
Posted 10/15/2009 2:35 AM (GMT 0)
Hi Jen, you are not alone. I was just telling my husband I am 33 and feel as though I am 60 plus years old. I have RA and Lupus along with Sjogrens and I am in a flare right now (1 month). Sydney was right it will take the right combo of meds and time,just try and be patient and know that things do get better, there will be days maybe months and years you will forget you are sick until you tske your meds lol but you will feel better. I am sorry about your mom,I don't know what I would do if I didn't have my mom. We are here to support andencourage one another so keep posting enev if it is to vent we want to hear from you. My email is [email protected] if you wanna email I will be happy to hear from you. Keep positive thoughts and positive people around you,we don't need negativity we have enough on or plate. :)
Posted 10/15/2009 12:31 PM (GMT 0)
Hi Jen,

I'm also what they call sero-negative and still have moments of denial and it has been 5 years for me! I'm 38, and what gets me at times it that I can still remember what it was like before RA, and I have yet to feel that way even with meds, even though I still hold out hope!

I know what you mean about feeling old! There are days when I think to myself, what will I feel like when I truly am old?? I can really work myself into a tailspin!

The others are correct, it does take finding the right "cocktail" so to speak, and then some days are just tougher than others.  It's also about finding your limits, and knowing what might trigger a flare, and I know for myself if I don't get enough sleep and I run myself ragged, in a few days, I'm in big trouble!!

You found a great site and everyone here is so nice and supportive, welcome and post anytime!

Posted 10/15/2009 4:39 PM (GMT 0)
Thanks for all of the posts. It is nice to hear from you all. One thing I am thankful of is that I am no longer in the stage of trying to figure out what is wrong and wondering if I am crazy. I think that was the worst. I think this forum will really help keep me sane. Thanks for all the responses!
Posted 10/19/2009 4:40 PM (GMT 0)
Hi Jen and welcome! HW has been a wonderful place for me and I hope you find it is for you too! Sometimes we get a little quiet and health and life get in our way, but we're always here with gentle hugs and an understanding ear!

I'm 39,  have had arthritis since I was a little girl, and feel like I'm older than my 77 year-old Dad (who could pass for his early 60's at the oldest!) It does take some time to find the right combination of medications that work best for you - everyone reacts differents to the meds based on their bodies and type of arthritis. Hang in there and be persistent with your doctor. Also, as they try different meds, research, ask, and find out about certain things that will help you tolerate the meds and have them work best for you - for instance, drinking lots of water in general is a good idea when on medication, but even more so when on methotrexate. Taking a daily dose of a B complex vitamin  or extra folic acid is vital with certain meds to help counteract the fatigue. While prednisone works great for many people, you do not want to be on it long term on a regular/daily basis.

take care.

Posted 10/20/2009 4:31 AM (GMT 0)

Hi Jen,

You couldn't have come to a better place! smilewinkgrin   It's been a godsend coming on here and talking with like minded people, having the odd grumble and asking for advice. There's always someone with something to say even if it's just kind words.

Your not alone in feeling older than your age and I'm 18months down the line and still they are trying to find some relief, but I'm not giving up hope just yet. Just started IV Remicade in hospital, straight away it helped the back issue (within days) still other bones and areas it's not yet reached but I'm hopefully, time will tell.

Take care and keep posting, we're all listening.

hugs

Peggy.

Posted 10/22/2009 3:53 AM (GMT 0)
Hi Jen, I can only repeat what everyone else has said, unfortunately its not at all unusual to take years before you reach remission and sometimes it doesn't last long! But if your rheumy is good they usually just keep doggedly trying out new combinations until they find something that works for you. Sometimes it takes months before the meds really kick in and sometimes you have a flare because of a viral infection. It isn't an easy path, but you're not alone. We all keep soldiering on regardless.
But you're very welcome to come and moan or come and laugh with us, golitho
Posted 10/31/2009 4:09 AM (GMT 0)
Hi Jen,

Haven't heard from you so just wondered how you were going these days, any improvement?

Keep in touch and let us know how you are, hopefully the lack of comments isn't due to being too poorly?

 

Keep smiling, it always makes people wonder!! smilewinkgrin

Peggy

Posted 11/16/2009 2:38 PM (GMT 0)
Hi Jen,
I just wanted to say hell and welcome. I have Crohn's disease and also Rheumatoid arthritis.
We are always here for you.
Posted 11/21/2009 9:11 AM (GMT 0)
Hi everyone.I am new to the forum . I though I would drop a line. I was diagnosed in 1999 with osteoarthris, and was diagonised in March this year with RA. I was treated with plaqunil but I had a reaction so now my Rhuemy is treating me with Minocycline. just wondering if anyone here is using this treatment or if you have heard of it.
Have a great night
Posted Today 3:44 AM (GMT 0)
Hi Jen,

I'm new here as well. I too have RA & Fibro. I'm 35 yrs old & feel like I'm 80. Also I'm on Humira & MTX.

Everyone here is correct, it takes time to find the correct mix of medication to help you. Try to be patient. Both my drugs worked for me after about 6 months, but I still have lots of bad days. It's probably because I don't excercise like I should. Instead, I'm addicted to the darn computer! lol. But gentle stretching every day is very important!!!!

I'm very sorry about your mom. My parents both passed away in August 2008, so I know how you feel. Feel free to email if you like, maybe we can help each other through.
Posted 12/13/2009 5:11 AM (GMT 0)
Is Minocycline the antibiotic treatment for arthritis? How's that working? 
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