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Discussion Starter · #1 ·
I feel weird asking for support but I am having a rough time right now. I have Juvenile Rheumatoid Arthritis. It has been acting up for the past two months. I was on predinisone for about a month. It helped but talk about insomnia and being manic. I have days where I just don't want to crawl out of bed because I am so tired and everything hurts.

My doctor put me on Methotrexate and I hate it! It's low dose oral chemo. It makes me feel really sick! I can't eat anything for about 3 days after I take it. I just feel so nauseous! He wont give me anything for the nausea. It's really annoying me. I know he is trying to find the right dose, but running for the nearest trash can and no eating is really not fun! :angry: The worst part is that this stuff seems to have helped with the pain.

And I think he thinks I am developing a resistance to the drug i have been taking for 5 years with great results! :tears: It's called Remicade. Next time I go in to get it they are going to test my blood to see if they can find any antibodies against it.

Oh and he found that my white count is pretty low. He was saying it could be because he upped my dose of Remicade, but I doubt it. My white count was always fine until he put me on Methotrexate.

So I am just feeling pretty low and frustrated right now. :sigh: I know things could always be worse and thats what I keep telling myself. But I am just tired of hurting. :(
 

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OH MY LORD. I sure wish you would of told us before so we could be praying for you. I know it is hard sometimes to share things like this but that is what we are here for.

I sure wish I could help you. I know it is not the same AT ALL, but my DH has fibroid Myalga, and Perfial Neropathy (OH lord I can not spell these). He is in a lot of pain all the time also bad it is really bad right now. But he takes Anrica Montana and it really seems to help with the pain.

I sure hope you are feeling better. Just remember that we are here for you. :grouphug: :hug: :hug: :pray:
 

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I am so sorry Ashley :hug: I can't imagine what it is like to be in pain all the time. I hope your doctor works something out that helps you.

I am trying to think of any natural pain reducers and all I can think of at the moment is Arnica Montana. And White Willow Bark, which you make a tea out of and it has very long lasting pain relief.

Hugs.
 

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:hug: I can't even imagine being in pain constantly. It must be so frustrating when Drs. can't seem to find the right combination of medication. You will be in my thoughts and prayers. I have an Aunt with RA and she goes for accupuncture when it gets really bad. She swears it helps. It might be worth a try.
 

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Oh no- this is such a surprise because you are so upbeat and helpful here. It is so hard to have pain like that- it simply wears a person out. I pray that your doctor finds a solution soon. How frustrating it is to have to rely on a doctor especially when they don't seem to hear you.
I have had occasions where I have taken a break from a medication because it stopped working and found it did work again after several months of not using it. Hopefully this can happen for you or your doctor finds a new med that works.
Does resting help at all?
:hug: :hug: :hug: :hug: :hug: :grouphug: :hug: :hug:

I think you are very brave with a hard row to hoe- you have a lot to deal with and at your age too. Maybe things could be worse but that does not make it better for you. I'm so glad that you finally said something. Right now I am embarassed about my whine about hay prices - you have put some things in perspective for me and I thank you.
 

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Discussion Starter · #8 ·
Thank you everyone. I have tried the Arnica but it doesn't do a thing for me. The only pain killer I can take now is tylenol. Everything else makes me sick. I will try the tea. :)

I would try acupuncture but I hate needles! More like I am terrified of them. They are lucky to get an IV in me to give me my remicade once a month. LOL. :roll:

Today hasn't been too bad. Joints have been good. I finally managed to eat today without feeling like throwing up. This nausea seems to last longer and longer.
 

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I am also afraid of needles. I haven't had one in 9-10 years and I am still holding out lol. I'll get a tetnus shot if I get a puncture or something, but I really don't ever get hurt. Mainly bruises...

Nausea STINKS! I am glad you were able to eat today, and I am sorry you have to go through the nausea too.
 

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Ashley i am so sorry to hear you are going thru this. i also am taking prednisone but my dr has givin me a drug called prochlorper for nausea & vomitting & it really helps me alot. i to have fibromyalgia along with the cancer so i know what pain you are felling. i hope that your dr can get your meds straighten out for you. :hug: my cancer is now in my bones so there aren't many parts that don't hurt. you are very brave.
 

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Discussion Starter · #11 ·
Thanks Fritzie, you have been in my thoughts and prayers. I was thinking of how bad your nausea must be from the chemo compared to mine. I really don't know how you manage it. You are even braver than me. :hug:
 

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Ashley I am praying for you and I hope that it does get better with the Methotrexate. My hubby was in just a constant all over pain and nobody knew why, it took numerous doctor visits as well as different types of meds to finally have him diagnosed with Psoriatic Arthritis and it was difficult to believe that diagnosis because the ONLY signs of Psoriasis that he had was " farmers hands" red, rough and dry hard working hands. The rheumatologist had him on prednisone and it made him feel like superman! After the doseage was done he was back to being in pain and he was put on Methotrexate as well as Enbrel...an injection he gave himself once a week...the nausea and headaches he got was worse than the arthritis pain, so after talking with the dr.s they put him on an anti inflammatory drug called Feldine...it has worked wonders for him, and when he was on the Methotrexate what helped a little with the nausea was a daily 1mg folic acid pill, which was also prescribed by the dr but you can get the 800mcg supplement from any store and most times it's cheaper than the prescription...my hubby took 2 folic acid pills as well as the meth. with no complications, other than it didn't really help and your dr should also be doing bloodtests to check your liver function because the methotrexate can cause issues there.
Ihope you start feeling better soon and I am so sdorry you are dealing with so much pain as young as you are, keep your chin up and know that we do support you. :hug:
 

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hi,my best friend (14) has the same thing and has been treating it for 3 years. she also raises a few nigerians. she flys out of state every month for tests. i know how frustrated you are, and i hope that everything gets better for you.
 

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Discussion Starter · #14 ·
Yeah, my doctor had me on 1mg folic acid and nows its 2mg folic acid a day. Doesn't really do anything. He is trying to lower the dose until I don't feel nauseous but I don't think its possible. I get blood drawn every time I get the Remicade since they are doing an IV anyways. I just want off the methotrexate. I hate it!

My arthritis didn't show the normal signs either so it took forever till I got a specialist to figure out what was wrong.
 

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I'm so sorry you're stuck with this. It's so unfair! :hug:

I don't know why you say you feel weird asking for support. That's what we're all here for!

I'll pray you get past the nausea soon. Personally, I'd about rather take a beating than have constant nausea. You poor thing. :hug: :hug: :hug:

Kristen
 

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Fritzie, it's good to hear from you too. I've been thinking about you.
One of the best things about people is when they share their experiences so that others can have the benefit of it. Even if there is no immediate use for it, tomorrow I might meet a person who just needs that one small piece of knowledge. And because you shared, they might be able to get it.
 

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Discussion Starter · #18 ·
Thanks everyone. I could finally eat normal today. Such a bummer I have to take the methotrexate Sunday night.

If I feel as sick next week I am telling my doctor that I am stopping the stuff unless he gives me a anti-nausea med. :angry: :sigh:
 

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girl you can't afford not to eat! I would demand that anti nausea med or stand there in his office till he gives you one or a darn good reason why not! :veryangry:
 

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My hubby informed me that a co-worker of his also had the same problem with the methotrexate...there was only certain things she could eat without being nauseous....toast and crackers until her system got accustomed to the med. I do hope it works out for you, the pain any better?
 
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