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Old 12-07-2005, 10:36 AM   #1
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new to this...need help

I have a very recent diagnosis of lupus and very afraid. My MD wants me to have a trial of methotrexate. What are the dosages you all have experienced as helpful,also other treatments that have helped. Thanks so much.

 
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Old 12-09-2005, 10:16 AM   #2
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darkwater HB User
Re: new to this...need help

Hi. It would be helpful if you told us what kinds of symptoms you are having and what your test results (urine, blood, etc.) were. You should also do a search for methotrexate on this board, there are lots of posts relating to that already. I hope that you have one of the milder cases of the disease. Are you a nurse? (I ask because of the "rn" on the end of your name.) Anyway, a little fear can be a healthy thing, our fear helps us to treat lupus as a serious condition and get the treatment we need, but too much fear can be counterproductive to life. Some of that fear never goes away, but over time, I think it turns into acceptance and determination to manage this disease in order to live as fully as possible. It is a strange, odd disease whose twists and turns are puzzling. But one could say the same about life, right? Bless you as you begin to deal with all that is Lupus.

 
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Old 12-27-2005, 11:32 AM   #3
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Ole Mama Hen HB User
Re: new to this...need help

Quote:
Originally Posted by redheadrn
I have a very recent diagnosis of lupus and very afraid. My MD wants me to have a trial of methotrexate. What are the dosages you all have experienced as helpful,also other treatments that have helped. Thanks so much.
I'm curious. I spent a lot of time on the boards several years ago and a group of us formed a sort of circle of regulars. We took an informal survey of those coming to the board and found an extremely disproportionate number of redheads, twins and nurses with lupus. Could you be two of those three?
Also, it seems to me that your Dr. is jumping awfully quickly to the big guns of Methotrexate for your treatment. Is your case severe? I'm sorry you didn't get more replies, because I'm sure there are people out there who know a lot more about that drug than I do. My case is mild, and I'm functioning at pretty much a full level, with 2000 mg of Relafen a day, so I don't feel qualified to give you any advice other than to say lupus is a disease you can LIVE with. No matter what horror stories you hear and no matter how many celebrity relatives have died from it, most, nearly all, people manage to survive with it and live out their full life span. It may not be as comfortable or as easy as it could have been, but lupus is not a death sentence. Don't give up and don't give in. That's my best advice.
Lori the Ole Mama Hen

 
Old 12-27-2005, 07:50 PM   #4
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Re: new to this...need help

Goodness! Don't say if you're a nurse because that can cause you to be banned!! It's considered something that makes you other than "peer on peer" advice. I'm one of the three myself.

I was dxed in 1999 and have a mild case, thank goodness, but I cannot work because of fatigue and that's a bummer!

I, too, wonder if Methotrexate isn't jumping the gun. I started on Plaquinyl and Naprosyn twice a day and did okay for a few years. 1st problem was an allergic reaction to Celebrex which I was on for 3 weeks before the Naprosyn. 2nd problem was increasing gastrointestinal problems that seemed to be due to the Plaquinal after 2 years on it.

Do ask your doctor if you really need Methotrexate now. I was offered the choice of a steroid or seeing a rheumatologist. I chose the rheumy!! Good decision. The rheumy discovered I was allergic to the Celebrex and is used to dealing with us lupies. The major annoyance most of us deal with is arthritis and fatigue. Bummer!

Wishing you well - Barbara

 
Old 12-31-2005, 12:01 AM   #5
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Re: new to this...need help

[QUOTE=BarbaraH]Goodness! Don't say if you're a nurse because that can cause you to be banned!! It's considered something that makes you other than "peer on peer" advice. I'm one of the three myself.

I was dxed in 1999 and have a mild case, thank goodness, but I cannot work because of fatigue and that's a bummer!

I, too, wonder if Methotrexate isn't jumping the gun. I started on Plaquinyl and Naprosyn twice a day and did okay for a few years. 1st problem was an allergic reaction to Celebrex which I was on for 3 weeks before the Naprosyn. 2nd problem was increasing gastrointestinal problems that seemed to be due to the Plaquinal after 2 years on it.

Do ask your doctor if you really need Methotrexate now. I was offered the choice of a steroid or seeing a rheumatologist. I chose the rheumy!! Good decision. The rheumy discovered I was allergic to the Celebrex and is used to dealing with us lupies. The major annoyance most of us deal with is arthritis and fatigue. Bummer!

Wishing you well - Barbara

Since when does being a nurse with Lupus get you banned from the board? It never used to. There were several on in the old days, and it was fine. Is this something new? The board has changed a lot since I was on before and is much harder to use now and somehow doesn't seem as folksy and friendly. I miss that.
There is an alternative to Celebrex, which tore up my stomoch too. It's one of the really early drugs for joint pain and inflamation. it's called Relafen and there is a generic of it called Nabumetone, I think. I started at 500 mg. a day and am now up to 2000, but is has taken over 5 years. it doesn't totally eliminate the pain in my hip, but it makes it not interfere with my full time job where I do a lot of running back and forth. I too, go to a Rhumie and he's the one who gave it to me. He wants to stay off the steroids as long a possible because of the moon face and weight gain they cause. I want to stay off too, believe me. I have the fatigue too, but I nap when I can and push myself the rest of the time.
I hope you have come back to your post to find that people did answer you.

 
Old 12-31-2005, 12:02 PM   #6
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Re: new to this...need help

Red, I started out taking plaquenil 400 a day then went on Methotrexate 15mg a wk. I had a reaction to the MTX, it caused liver enzymes to skyrocket and eventually I had to give up plaquenil, it was thought I had an eye problem but I did not and the plaquenil did not cause any eye problems. I had abdominal problems from plaquenil but nothing from the methotrexate, actually the combination of the two worked very well for several months.

After being without any meds and being in lots of pain my rhuemy put me on prednisone, I take 4mgs a day. It really works for me. I am concerned about long term side effects, but I keep a close watch on my health. I don't have the problems with weight gain etc. I actually lose weight on prednisone and about the only thing I notice is I have the bruises.

Just wanted to give you some personal experience with the methotrexate. I know it works for lots of people. Check out the arthritis board sometimes they have threads on MTX.

Oh and I am not one of the three.

Glojer

 
Old 01-02-2006, 09:29 AM   #7
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Re: new to this...need help

I'm thinking, if many of you suffer from arthritis too, that may be what is happening to my knees. I am supposed to go to the doc tomorrow. During our last visit, he informed me that I would have to go for x-rays or have the knees aspirated if the fluid is still there. After reading several different posts, I am thinking this prednisone might be an easier route to go. I have taken it before, and even though my face got fairly puffy, I didn't seem to have any real bad effects. I don't really want to take it the way I did last time though. It was a series of six pills, then five, and so on and so on. I went through the series three times before my doc discontinued my taking them and put me just on the plaquenil. Four milligrams a day sounds okay though. Does this usually make fluid go down too. From what I remember it did ease the pain I was having in my arms and legs. Another strange thing is, I don't really have what you call joint pain. My pain is more in fleshy areas: up and down my arm, my shoulder, the shoulder blade area of my back, and my neck. I used to get it fairly bad in my legs and thighs, but now, that has tapered off to the knees. I absolutely stress out on needles...guess you could say I'm a severe needle-phobe...And x-rays are very expensive. If people have had success with the prednisone reducing fluid, I'm thinking I might try suggesting that to my doc. If I don't just clam up on him. Have to work on that one...

Last edited by cherylynn1964; 01-02-2006 at 09:41 AM. Reason: sp

 
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