Author Topic: pulmonary fibrosis  (Read 3721 times)

inga

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pulmonary fibrosis
« on: February 23, 2010, 06:10:55 AM »
I just read that methotrexate and cyclophosphamide CAUSE pulmonary fibrosis.  Has any one else heard of this?  I am not on any of these meds, but, some Sjer's are.....makes me wonder why they would use this for SjS or SSc if it can cause pulmonary fibrosis.  Hmm.

irish

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Re: pulmonary fibrosis
« Reply #1 on: February 23, 2010, 08:36:55 PM »
inga, That is true about the methotrexate, I haven't read on the cyclo lately so I don't remember. This happens rarely and the doctors watch for it. Also, when a person takes methotrexate (which is a very good drug) they also take folic acid along with it. I was on the methotrexate for a while but couldn't continue because of my propensity for infections. I was on it 3 months and was starting to feel more like my old self. I was really disgusted when I had to quit.

I haven't read up on the drug for quite a while, but I know the folic acid is to help prevent the side effects like nausea, etc. I am also wondering if it would prevent the pulmonary fibrosis. Taking this drug is something that needs to be decided by a doctors who are treating a patient. It can cause the pulmonary fibrosis, but I would bet that it can also prevent it by virtue of decreasing the inflammation caused by the autoimmune attack ono the body. Sort of a crap shoot. Irish ;D

Chickpea

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Re: pulmonary fibrosis
« Reply #2 on: February 24, 2010, 10:04:39 AM »
Hi Inga

I've just started a course of Cytoxan/cyclophosphamide infusions so I've been reading up on it as much as I can.  I haven't read anything linking it with pulmonary fibrosis, or any reason why it should be connected.  There are big warnings about potential bladder problems:  bleeding and possibly developing bladder cancer.  To guard against this you're given a Mesna infusion before the first cyclo infusion, with tablets to take at home afterwards and before the following infusions.

As Irish says, it's really a crap shoot.  I researched possible side effects pretty exhaustively and then decided that it was worth the risk.  I haven't been promised great things, just a possible slowing down of the SjS progress.  As it's been pretty rapid so far I thought it was worth a try. 

Take care - Chickpea

harrigan

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Re: pulmonary fibrosis
« Reply #3 on: February 24, 2010, 10:35:11 AM »
I've just started methotrexate and haven't heard about pulmonary fibrosis.  I'm feeling anxious about the effects I have noticed so far.  Off to look this up now... ???
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

inga

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Re: pulmonary fibrosis
« Reply #4 on: February 24, 2010, 10:52:28 AM »
I was surprised to read that myself, since it is so widely used.  Maybe it is dose dependent?

I also saw a poster on a forum regarding Cellcept, her husband died of PML....lord, if this IVIG doesn't stop this crud....I dunno.  I have failed DMARDS and steroids (IV).

inga

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Re: pulmonary fibrosis
« Reply #5 on: February 24, 2010, 11:01:27 AM »

irish

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Re: pulmonary fibrosis
« Reply #6 on: February 24, 2010, 08:08:58 PM »
I guess I have my own opinion about the drugs used to stop the autoimmune diseases. I was able to take the methotrexate for 3 months and was really bummed that I had to stop. The folic acid really kept the nausea, etc away and I was doing fine on the 10 mgm a week with improvement in my health. I could tell by a picture taken at Christmas when I was on the drug. Then the next Christmas I was not able to take any drugs for the autoimmune and I looked terrible.

I see that everyone is reading about all these drugs. As a registered nurse I can tell you that if you read all the info about any drug( and I mean any drug of any kind) you will not take it. There isn't a drug on the face of the earth that doesn't cause some kind of a side effect. The way they do these drug trials involves having people report any and all issues they have while on the drugs. It might be that they are experiencing a symptom from a disease, a virus, a bacteria, a pain from a previous fall or even an imagined issue that can't be proven one way or another.

There are so many side effects that it makes a persons head swim at times. I can guarantee you that if you read and reread all these side effects you will most likely experience one of them. It is really hard to not feel a symptom when you are conceerned about a medication. I am not trying to be smart. It is just part of human nature. I used to read all that stuff and then worry myself silly and then start a med and then decide not to take it. Now I read about it and then wait to see what happens. If it is a drug with a really serious potential side effect I doubt that I would even want to take it. It just depends on how you feel and what ones options are.

I do know that I would love to be able to take any of the DMARDS or the methotrexate for my autoimmune disease. The only thing that I can take is the IVIG. Thank goodness I am getting some relief from it. However, I still have a lot of issues and doubt that I will ever be anywhere near the way I used to be. I would even like to take the Plaquenil, but my doc says that it is not strong enough to do me any good.

The good thing is that many of you have a choice and are able to try different meds. I wish you all well and hope that you all are able to take the meds with minimum side effects and with much improvement in your health. Irish ;D

eyeamdry

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Re: pulmonary fibrosis
« Reply #7 on: February 24, 2010, 08:54:20 PM »
3 years on methotrexate here and I have not noticed any side effects.  But I take alot of stuff and sometimes I wonder if I stopped everything:

1.  I might want to die i felt so bad.

2.  I might want to keep off all drugs because I feel wonderful.

I'm thinking it's closer to number 1.  I am going to bed tonight though.  I have a belle ache and I think I ate too much cake and ice cream. lol