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Thread: Hello New to site looking for info

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    Default Hello New to site looking for info

    Hi there
    Diagnosed wengers for about 3years now been an up and down road back on methertrex again any tips on avoiding the sickness feeling would be great thanks

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    Hi Lincoln imp and welcome.

    Do you mean, how to avoid feeling sick when taking methotrexate, or just with the crappiness that WG brings?
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by mishb View Post
    Hi Lincoln imp and welcome.

    Do you mean, how to avoid feeling sick when taking methotrexate, or just with the crappiness that WG brings?


    yes both hate taking the stuff

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    Hi Lincoln...I was on MTX in pill form for nearly 4 years, am finally off of it. The best thing for helping out MTX reactions is to split the dose, either morning & nite OR today & tomorrow...either way works & cuts down on the bodily effect. Also, folic acid helps with stomach & hair problems due to MTX reactions. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Quote Originally Posted by Dirty Don View Post
    Hi Lincoln...I was on MTX in pill form for nearly 4 years, am finally off of it. The best thing for helping out MTX reactions is to split the dose, either morning & nite OR today & tomorrow...either way works & cuts down on the bodily effect. Also, folic acid helps with stomach & hair problems due to MTX reactions. Best to you.

    Thanks Don tried split dose made the feeling prolonged last time was on injections this was ok at first but the feeling got worse after a while now back on all the medication steroids bone protection folic acid I was hoping for something obscure like eating an orange before taking it did the trick. Thanks I will have to put up with it and see how it goes

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    Putting up with it is about all you can do. Be thankful you are on a low dose. They also give mtx to cancer patients, but in very high doses where it causes hair loss, dizziness, vomiting, etc. I don't know the dose you are on, but I suspect its 30mg/wk or less. Eventually, they will taper it down to a maintenance dose 20mg or less. So, for now, just hang in there.
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
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    It's really crazy and I have been taking MTX for 5 years now and only just recently (6 weeks ago) found that if I have 2 paracetomal before going to bed the night of taking MTX, that I don't feel so crappy in the morning. I also will have a small bag on sea salt crisps in the morning (I just too my MTX) and they seem to help ease the headaches.
    I wish I had figured this out years ago. Maybe it just works for me because my system is used to MTX now.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Also new to WG. My mother was diagnosed at the end of May and has complete kidney loss now and is on dialysis 3 days a week. Unfortunately there aren't any doctors really up on this disease in our area. (Southern Indiana) I have researched but still not sure what I should be watching for. She is on prednisone and Cytoxan but now she is swelling really bad around the neck area and the bridge of her nose is looks sunburned and you can see tiny blood vessels coming to the surface. Any advice on what to look for and when I should get excited would definitely help. Thanks in advance.

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    Quote Originally Posted by ldayfrantz View Post
    Also new to WG. My mother was diagnosed at the end of May and has complete kidney loss now and is on dialysis 3 days a week. Unfortunately there aren't any doctors really up on this disease in our area. (Southern Indiana) I have researched but still not sure what I should be watching for. She is on prednisone and Cytoxan but now she is swelling really bad around the neck area and the bridge of her nose is looks sunburned and you can see tiny blood vessels coming to the surface. Any advice on what to look for and when I should get excited would definitely help. Thanks in advance.
    welcome to the forum. I am afraid your post is "lost" here without answers. try to post a new thread on the new members introduction with more details if you can. maybe someone will be able to give you names of wg experts around you. the key is to have a wg expert.
    Alysia
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    Quote Originally Posted by mishb View Post
    It's really crazy and I have been taking MTX for 5 years now and only just recently (6 weeks ago) found that if I have 2 paracetomal before going to bed the night of taking MTX, that I don't feel so crappy in the morning. I also will have a small bag on sea salt crisps in the morning (I just too my MTX) and they seem to help ease the headaches.
    I wish I had figured this out years ago. Maybe it just works for me because my system is used to MTX now.
    Would just like to add some weight to the paracetomal comment. Ive only been on the MTX for 12 months but after abut two months I was a bit over the headaches and the crappy feeing you get , so I started taking two panadol the evening of the MTX. It certainly works for me.
    All the best with it.

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