Methotrexate anyone?

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mysticrose

New member
I was curious if any one here had any experience with this medication? As I had posted before my DD's joints are swelling. After a long drawn out time we finally got into see a rheumatologist. They put her on Melxicam. After a month of being on it she is still flaring up, unable to move. So now they want to put her on methotrexate. 80 units once a week. Along with 9 days of prednisone.
I'll admit I'm really hesistant. She is already on so many different medications it feels like all we do is add more toxins into her body and hope it will "fix" something. I guess I just feel frusterated and exhausted. I have all these "specialists" wanting her to take more meds becuase it "might help".
I was just curious if anyone has taken it along with all the other CF meds and if it really seemed to help. Right now they think she has Immune Complex Arthritis. I'm not keen on the diagnosis because she isn't constantly sick. We got back Tuesday and we are really hoping they will have a better idea after all the tests and scans that were done.
If anyone has ever delt with this med or knows about it any thoughts would be greatly appreciated.
Jen. mom to 4. 3 w/cf and 1 lucky red head.
 
M

mysticrose

New member
I was curious if any one here had any experience with this medication? As I had posted before my DD's joints are swelling. After a long drawn out time we finally got into see a rheumatologist. They put her on Melxicam. After a month of being on it she is still flaring up, unable to move. So now they want to put her on methotrexate. 80 units once a week. Along with 9 days of prednisone.
I'll admit I'm really hesistant. She is already on so many different medications it feels like all we do is add more toxins into her body and hope it will "fix" something. I guess I just feel frusterated and exhausted. I have all these "specialists" wanting her to take more meds becuase it "might help".
I was just curious if anyone has taken it along with all the other CF meds and if it really seemed to help. Right now they think she has Immune Complex Arthritis. I'm not keen on the diagnosis because she isn't constantly sick. We got back Tuesday and we are really hoping they will have a better idea after all the tests and scans that were done.
If anyone has ever delt with this med or knows about it any thoughts would be greatly appreciated.
Jen. mom to 4. 3 w/cf and 1 lucky red head.
 
A

amber682

New member
I missed earlier threads so I'm not sure on all of the details of your daughter's swelling, but I'm sorry she's having such a tough time. My mom used to take methotrexate because she has psoriatic arthritis (sort of like rheumatoid arthritis' cousin). It helped quite a bit but I remember her feeling pretty nauseous. I also have a young cousin with JRA (rheumatoid arthritis) and she takes methotrexate as well. She seems to be pretty good on it, although we don't see them regularly.
I know it's always scary to start a new med, especially when they have worrying side effects, but I think I would do it and see if it helped if I were in your shoes. You said she is still very swollen and can't move well so that must be hard on her. Has she been tested for RA?
 
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amber682

New member
I missed earlier threads so I'm not sure on all of the details of your daughter's swelling, but I'm sorry she's having such a tough time. My mom used to take methotrexate because she has psoriatic arthritis (sort of like rheumatoid arthritis' cousin). It helped quite a bit but I remember her feeling pretty nauseous. I also have a young cousin with JRA (rheumatoid arthritis) and she takes methotrexate as well. She seems to be pretty good on it, although we don't see them regularly.
I know it's always scary to start a new med, especially when they have worrying side effects, but I think I would do it and see if it helped if I were in your shoes. You said she is still very swollen and can't move well so that must be hard on her. Has she been tested for RA?
 
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mysticrose

New member
Thank you! She was tested for RA and it came back negative. According to the rheumatologist that doesn't really matter? Now they think it might be immune complex arthritis. None of the OTC's work for her at all. Apparently this is a normal course of treatment. I worry though with all her other meds.
 
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mysticrose

New member
Thank you! She was tested for RA and it came back negative. According to the rheumatologist that doesn't really matter? Now they think it might be immune complex arthritis. None of the OTC's work for her at all. Apparently this is a normal course of treatment. I worry though with all her other meds.
 
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JustDucky

New member
Years ago I was put on MTX because of my joints and vasculitis (I had chronic headaches as a result of the inflammation of my vessels).This was the absolute last resort...they had tried Plaquenil first and then the MTX. Mind you , this was before my CF dx. It works to suppress the immune system, so you have to watch for infections because the body's natural immune system will be suppressed. Also, the normal response to infection will be blunted, such as running a fever...so if she runs any fever (even if it is low grade), follow up with the doctor ASAP. They also need to watch the blood counts, it suppresses the white cells and for me, the red cells as well.
If you have any more questions, don't hesitate to ask.
Jenn 40 w/CF
 
J

JustDucky

New member
Years ago I was put on MTX because of my joints and vasculitis (I had chronic headaches as a result of the inflammation of my vessels).This was the absolute last resort...they had tried Plaquenil first and then the MTX. Mind you , this was before my CF dx. It works to suppress the immune system, so you have to watch for infections because the body's natural immune system will be suppressed. Also, the normal response to infection will be blunted, such as running a fever...so if she runs any fever (even if it is low grade), follow up with the doctor ASAP. They also need to watch the blood counts, it suppresses the white cells and for me, the red cells as well.
If you have any more questions, don't hesitate to ask.
Jenn 40 w/CF
 
J

JustDucky

New member
I should add that I don't take this med anymore....just steroids on occasion for swelling and painful joints and pain meds chronically. I had too many side effects from it, it did its job well though and fixed the inflammation of my vessels.
 
J

JustDucky

New member
I should add that I don't take this med anymore....just steroids on occasion for swelling and painful joints and pain meds chronically. I had too many side effects from it, it did its job well though and fixed the inflammation of my vessels.
 
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canilucas

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mysticrose</b></i> I was curious if any one here had any experience with this medication? As I had posted before my DD's joints are swelling. After a long drawn out time we finally got into see a rheumatologist. They put her on Melxicam. After a month of being on it she is still flaring up, unable to move. So now they want to put her on methotrexate. 80 units once a week. Along with 9 days of prednisone. I'll admit I'm really hesistant. She is already on so many different medications it feels like all we do is add more toxins into her body and hope it will "fix" something. I guess I just feel frusterated and exhausted. I have all these "specialists" wanting her to take more meds becuase it "might help". I was just curious if anyone has taken it along with all the other CF meds and if it really seemed to help. Right now they think she has Immune Complex Arthritis. I'm not keen on the diagnosis because she isn't constantly sick. We got back Tuesday and we are really hoping they will have a better idea after all the tests and scans that were done. If anyone has ever delt with this med or knows about it any thoughts would be greatly appreciated. Jen. mom to 4. 3 w/cf and 1 lucky red head.</end quote>

My daughter was dx with Juveile Idiopathic arthritis, at the same time she started having serious lung issues. This waas 2 years ago, when she was 6. she failed 4 NSAIDS, and had to go on MTX (methotrexate), typically prescribed.. However, she developed pneumina, and we took her off of it. It did not help. She was on it for 9 weeks, and got worse, not better.
I was concerned that she was or could develop interstitial lung disease (ILD) on this drug, as although rare, could happen.. especially since she was developing such lung issues.
Her pulomonologist agreed, and now she has to get a chest CT every year to check for bronchiectesis, and ILD.. I do not recommend this drug. although it is frequently prescribed, we had a very bed experience with it, and perhaps a Biologic such as Enbrel would be more benefiical to her, and not carry a risk like MTX does, with the lungs. Especially if she already has CF. Just my experience and 2 cents. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

canilucas

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mysticrose</b></i> I was curious if any one here had any experience with this medication? As I had posted before my DD's joints are swelling. After a long drawn out time we finally got into see a rheumatologist. They put her on Melxicam. After a month of being on it she is still flaring up, unable to move. So now they want to put her on methotrexate. 80 units once a week. Along with 9 days of prednisone. I'll admit I'm really hesistant. She is already on so many different medications it feels like all we do is add more toxins into her body and hope it will "fix" something. I guess I just feel frusterated and exhausted. I have all these "specialists" wanting her to take more meds becuase it "might help". I was just curious if anyone has taken it along with all the other CF meds and if it really seemed to help. Right now they think she has Immune Complex Arthritis. I'm not keen on the diagnosis because she isn't constantly sick. We got back Tuesday and we are really hoping they will have a better idea after all the tests and scans that were done. If anyone has ever delt with this med or knows about it any thoughts would be greatly appreciated. Jen. mom to 4. 3 w/cf and 1 lucky red head.</end quote>

My daughter was dx with Juveile Idiopathic arthritis, at the same time she started having serious lung issues. This waas 2 years ago, when she was 6. she failed 4 NSAIDS, and had to go on MTX (methotrexate), typically prescribed.. However, she developed pneumina, and we took her off of it. It did not help. She was on it for 9 weeks, and got worse, not better.
I was concerned that she was or could develop interstitial lung disease (ILD) on this drug, as although rare, could happen.. especially since she was developing such lung issues.
Her pulomonologist agreed, and now she has to get a chest CT every year to check for bronchiectesis, and ILD.. I do not recommend this drug. although it is frequently prescribed, we had a very bed experience with it, and perhaps a Biologic such as Enbrel would be more benefiical to her, and not carry a risk like MTX does, with the lungs. Especially if she already has CF. Just my experience and 2 cents. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

LouLou

New member
Also, Lyme's Disease should be ruled out through IgenX lab in CA. I live in CT and it is my understanding the only lab that can really affirmatively rule it out. A common efffect of LD on kids is swollen joints. Just sayin' May not be CF at all!
 
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LouLou

New member
Also, Lyme's Disease should be ruled out through IgenX lab in CA. I live in CT and it is my understanding the only lab that can really affirmatively rule it out. A common efffect of LD on kids is swollen joints. Just sayin' May not be CF at all!
 
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