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allydams

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 #16 
I'm scared to start the mexotrexate but my doctor is pushing for it. I'll ask him about the imuran. Is that a pill or a injection?

I feel like everything is pretty intense.
darla627

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 #17 
i take 100mg per day pills your dr would decide what dose or if it would work for you let me know hope all goes well either way
aap51990

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 #18 
Thanks for all the responses.  I will take 20mg plus folic acid.  I will take it for 3 months, check my labs and see if its working.  I will ask him about Imuran.  
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darla627

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 #19 
google imuran so when you go in you will know what is up. i think i missed something what about the folic acid ididnt see it earlier what does it do?
aap51990

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 #20 
the folic acid helps to decrease the side effects.
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darla627

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 #21 
thanks i will have to check in to that
hejost

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 #22 
hello Ally
I was suspected to have rheumatoid arthritis when I was 37 but a second opinion ruled it out said I had a 'reactive' flair up (all joints swollen)  following a mastitis infection...but could not treat me with meds in any case due to breast feeding. At 47 I was diagnosed with Lupus and treated with Quensyl (HCQ).  I had rynaulds, butterfly rash, tendonitis, dry eye and some joint stiffness..hands, wrists, knees and feet...ie. classic lupus symptoms. 
I now have one frozen wrist ie.no flexion, one deformed hand and both feet. After X-rays  for a broken foot and a broken hand caused by 2 different riding accidents it was found that my wrists, hands and feet joints were eroded badly. The diagnosis was revised to Rhupus at age 63. I was prescribed with MTX and Steroids. 
What happened to me was that the Lupus symptoms masked the RA symptoms, which are destructive to the joints. If you really do have RA then this combination therapy ST/MTX/NSAIDS is the best way to protect the joints. HCQ will modulate symptoms but any amount of joint inflation due to RA will damage the joints in the long run.
 My first daughter was diagnosed at 4 with JRA ..she was treated long term with MTX Steroids NSAIDS, these med mean she has  a relatively normal life and a son, she's 34 now. My youngest was diagnosed with Sharps Syndrome  or Mixed Connective Tissue Disorder (MCTD) at aged 11. She was treated with Steroids, imuran .. now she takes HCQ  she is 24. Both girls are doing well because they had good treatment and especially my oldest daily physio and movement. Movement is vital.
I live in Germany where there are specialist childrens rheumatologists then there are ones for adults. At 18 the children must transfer and it becomes very obvious the huge differences between these two types of doctors, hence I guess why they could never figure out my diagnosis. 

Worn...  is right supplements are important. And also about AI being like a soup. Nothings clear cut with AI and diagnosis  words only ..treatment is what matters and makes a difference.

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upstater

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 #23 
Do you have any skin issues that could be biopsied? I saw a rheumatologist who thought my skin issues were psoriasis. I went back to my dermatologist and asked if he could do a skin biopsy (since I have a positive ANA) and turned out to be discoid lupus. Also, plaquenil can make psoriasis WORSE, so it's not a good choice if you have psoriasis skin issues.
darla627

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 #24 
maybe listen to your dermatologist and try the plaquenil since they found the positive ana. what you feel comfortable with maybe try a short term use of 6-8 months to see if it helps. good luck i take plaquenil with no problems but there is no chance that i have psoriasis.
Schmeederdee

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 #25 
Hey there-
I work as a scientist for a very large hospital lab system, and regularly run the tests for therapeutic drug monitoring for patients being treated with methotrexate. I would SERIOUSLY get a second opinion before starting that specific med, the side effects are awful. I was recently diagnosed with lupus and I have been on plaquenil for about 5 weeks and I can already tell a drastic improvement, especially with the fatigue. There are other options than jumping right into a chemotherapy drug. Most of the patients I test are on it for leukemia and other bone marrow disorders. Just be your own advocate for what you put into your body. 

hejost

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 #26 
Foresight would be a fine thing! 
Dogma is unhelpful. There is no perfect solution to complex problems, trade offs and compromises are inevitable.  MTX in triple therapy for many children has made the difference between  having an able or disable existence. JRA was a chronic illness that confined children to not just to life in a wheel chair or a walking aid but to life in a bed in incapacitation. No-one can say that the side effects of MTX and other immune suppressants are worse than living in an immobile body in pain, in a bed for ones whole existence.  Plainly they're not!.

30 years ago my daughter was the first patient to be treated with the triple therapy under a UK child rheumatologist in Germany. 75% of children with this condition recover after two years so no strong meds are used over this period. But after one year my daughter had such bad inflammation of every joint  that we sought out a second opinion in the UK and one year after diagnosis the treatment that saved her joints began. 

Every parent DECIDES for their child and its a huge responsibility that drags one down over the years with many questions going over and over in your head and on and on. Did I do the right thing for my 4 year old...30 years ago who now has a heathy little boy and is a medical registrar in a hospital... a trained doctor who runs and swims and can manage her ongoing symptoms that she will have for the rest of her life?



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Mr. Bun

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 #27 
"No-one can say that the side effects of MTX and other immune suppressants are worse than living in an immobile body in pain, in a bed for ones whole existence.  Plainly they're not!."

And no one can say that just because a medication improved their child's condition, that it will have the same effect on every patient.

Every Lupus patient is different. 
allydams

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 #28 
Thanks everyone for all the responses. It's so crazy how different everyone's experiences are with the same medication.
I'm just feeling so frustrated with the whole thing because there is no definite answer for me yet but I guess that's the fun of having lupus and a bunch of other things together.

I didn't start anything yet. Still only on the plaquenil. I'm waiting to hear back from my rhem on what to do.

Reading everyone's responses I'm a little nervous about the mexotrexate but my doctor really didn't give me much of a choice. He said the other choice could be celaria idk how to spell it but he said he rather mexotrexate so I didn't even look into it


Has anyone else notice if their diet plays a role too? I cut out all sugar and dairy and now whenever I cheat I get a flare up bad
Cakelady

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 #29 
Well I can say I am worse off from taking mexotrexate
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darla627

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 #30 
bun I love the bugs on the motorcycle that is too cute and Aliadams don't forget about the Imuran hardly as harsh as either one of those drugs
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