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Post by scrapbookwriter on Jul 26, 2016 1:57:33 GMT
My teenage DS has undifferentiated juvenile arthritis. Methotrexate helps with his joint flexibility, but it completely wipes him out. His dosage is eight pills once per week. Seriously, he sleeps for days after a dose of Methotrexate. This does not work well with schooling.
DS decided to stop taking Methotrexate three months ago because he needs to study, not just sleep. Meanwhile, his rheumatologist tripled DS's dose of Folic Acid in the hopes this would help with the overwhelming fatigue. DS's next doctor appointment is in October.
With his joints stiffening, DS finally took another dose of Methotrexate last week. When he went to bed that night he slept for 19 hours and was still exhausted when he forced himself out of bed. The months of increased Folic Acid did not noticeably reduce his fatigue.
The Peas know all. What can you suggest for my DS?
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Post by beachbum on Jul 26, 2016 2:06:53 GMT
I could not take Methotrexate either, I was useless 4 days a week after taking it 1 day a week. Nasty stuff. My rheumatologist wanted to put me on a biologic, but needles and I don't get along - basically I'm a big chicken. She gave me Leflunomide - I have had no side effects at all, I still have some fatigue - I guess it just comes with the territory, but not the overwhelming amount that came with the Methotrexate. My joint pain improved immensely. I'm very happy with this drug. I know at some point I'm going to have to suck it up and try one of the biologics, I just keep hoping there will be some kind of new miracle drug come out before that!! Good luck to your DS, I was diagnosed in my teens, I'm 60 now. Dealing with this gets tiring.
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pridemom
Pearl Clutcher
Posts: 2,843 
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Post by pridemom on Jul 26, 2016 3:17:08 GMT
Is he seeing a pediatric rheumatologist? Has he tried injected MTX instead of the pills? As the pp wrote, Arava/leuflonomide is an option. My 16yo Dd takes Enbrel and MTX, but Enbrel can be taken alone.
And we never give mtx during the week, only on Friday or Saturday nights because of the hang over effect. I took it for two years and learned you can't function the next day.
Also, fatigue is disease related, not just from MTX.
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Post by delilahtwo on Jul 26, 2016 3:20:53 GMT
This is not a question for the peas. Your son's rheumatologist should make those recommendations. What works for one person with minimal side effects may not work at all for the next or may have major side effects. It doesn't matter what worked for anyone else. There are lots of options for drugs but I'm sure not all of them are appropriate for the pediatric population.
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Jul 26, 2016 3:31:04 GMT
Scrapbookwriter, if you are on Facebook, find the group Mothering Juvenile Arthritis and send a request to join. We have moms from all over. Some of us are part of the research organization, CARRA, and PR-COIN. Both are groups where some parents serve on committees to help improve treatment for our kids. The group is extremely supportive towards each other.
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Post by scrapbookwriter on Jul 26, 2016 15:55:13 GMT
This is not a question for the peas. Your son's rheumatologist should make those recommendations. What works for one person with minimal side effects may not work at all for the next or may have major side effects. It doesn't matter what worked for anyone else. There are lots of options for drugs but I'm sure not all of them are appropriate for the pediatric population. I am asking the Peas to share their own experience/knowledge - not to diagnose or prescribe. If there are lots of options for drugs, I would like to know about them. DS's pediatric rheumatologist said the alternative to Methotrexate is Enbrel. DS isn't too excited about the shot regimen. He's interested in finding alternatives. He's an older teen and will soon move out of the pediatric department. He and I work together on this, discussing and researching options and treatment. We're a team  but his is the deciding vote. |
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Post by compwalla on Jul 26, 2016 16:01:59 GMT
When I was on MTX it was not a weekly dose; it was meted out in pill form (and then injections) over the week. It helped to not get it all in one go. Have you asked about the dosing schedule and whether it's essential it be given all in one dose? I have psoriatic arthritis so my disease management may have been different but it wouldn't hurt to ask.
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Jul 26, 2016 16:08:26 GMT
When I was on MTX it was not a weekly dose; it was meted out in pill form (and then injections) over the week. It helped to not get it all in one go. Have you asked about the dosing schedule and whether it's essential it be given all in one dose? I have psoriatic arthritis so my disease management may have been different but it wouldn't hurt to ask. When used for inflammatory arthritis, MTX is taken once a week, in one dose. |
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basketdiva
Pearl Clutcher
Posts: 3,615
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Post by basketdiva on Jul 26, 2016 16:12:44 GMT
I've never had the massive fatique some of you have experienced with methotrxate. Sorry that is happening to your son.
I tried Enbrel but had leg/muscle issues with it. I'm now on Humira (1 shot every 2 weeks compared to weekly with Enbrel). I still take methotrxate weekly- 5 pills. The only issue I have with the shots is the burning-even with icing my leg and removing the Humira from refrig 30 minutes before the injection.
I hope you and your son find an alternative that works for him.
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pridemom
Pearl Clutcher
Posts: 2,843
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Post by pridemom on Jul 26, 2016 16:13:23 GMT
This is not a question for the peas. Your son's rheumatologist should make those recommendations. What works for one person with minimal side effects may not work at all for the next or may have major side effects. It doesn't matter what worked for anyone else. There are lots of options for drugs but I'm sure not all of them are appropriate for the pediatric population. I am asking the Peas to share their own experience/knowledge - not to diagnose or prescribe. If there are lots of options for drugs, I would like to know about them. DS's pediatric rheumatologist said the alternative to Methotrexate is Enbrel. DS isn't too excited about the shot regimen. He's interested in finding alternatives. He's an older teen and will soon move out of the pediatric department. He and I work together on this, discussing and researching options and treatment. We're a team but his is the deciding vote. While no one likes to do injections, Enbrel comes in three forms and he can find the form that he prefers. I took the auto-injector when I was on it. It was easy, and I didn't have any pain from the injection. My daughter hated the auto-injector and the pre-filled syringe. They both contain a preservative that some will feel discomfort from only during the injection. She now uses two of the pediatric kits that have to be mixed before injecting. She prefers two sticks to the other that she says 'burns' when injected. She's been on Enbrel for two years now and it has been very effective for disease control. She went from having problems walking 50 feet to being on her school's swim team in four months. She's had no side effects, but I had to stop Enbrel due to kidney infections. I now take Xeljanz. It's now being studied for its safety on teens. I know one young man who went from wheelchair to already being committed to playing football at Vanderbuilt and he's a rising High School Senior! |
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but his is the deciding vote.
