Has anyone been prescribed methotrexate for sarcoidosis?

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I was diagnosed with lung sarcoidosis in January 2013 after tests including a bronchoscopy. I have been on prednisolone, omeprazole and alondronic acid for the last 2.5 years. Every time the steroid dose has bees reduced, theming function test has shown worse results. Due to the continued use of steroids , I have developed high blood pressure and high blood sugar and am taking additional medication for these. The consultant has now suggested changing the main medication to methotrexate. He thinks I will need methotrexate for about a year. Anyone been through anything similar?what what are the side effects of methotrexate that I should be prepared for.  I am 48 years of age.

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  • Posted

    My husband hasn't but please don;t allow anyone to perscribe any quinilone antibiotics for you ( cipro, avelox... ect unless absolutly positively nessesary, especially while on a steriod. This causes tendon damage.. proven to cause this ( Black box warning now) . My husband had two surgeries due to this medication caused side effect. Those type antibotics have long been a go-to drug for lung infections, so please be careful. They are good when they are truely, really neded. But not good as a "catch all" like they have been used as for years.   ( He was diagnosed with lung sarcoid in 2004 and has been in remission for a decade)
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  • Posted

    Hi Skesher

     in reply to your message I am a 59 year old male,  I have been on methotrexate for the past eight months I do feel that this is helping me more than the steroids .

     The steroid dose that I am currently home is 10 mg per day they are looking to taper me down to 1 mg per day .

    The current side-effects that I get from messag The current side-effects that I get from methotrexate  are our sickness on the day that I take her tablets this usually clears up within 36 hours but I have found that the folic acid helps.

     The other side affect that I get is a slight thinning of my hair.

     if you start on methotrexate you will have to undergo a blood test every week for the first six weeks then a blood test every two weeks for the next six weeks and then a blood test every six weeks after that  this is to check that the medication is not affecting your liver.

     any other questions please do not hesitate to contact me wishing you all the best 

    dave

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  • Posted

    I am same age as yourself - took steroids for three years 

    I am now on methotrexate I take six of these tablets on a Monday and a folic acid on a Friday I have managed to reduce the steroids to one a day 

    but I struggle with walking as out of breath - I have been taken get them for ten weeks now - and I have a hospital appointment this week 

    I have monthly blood tests now and I'm 5 -11 inches tall but now weigh 17 stone the steroids and new medication seem to put weight on - I don't drink smoke or eat anything had of flour or chocolate but I struggle with exercise and weight now - I used to be 13 stone three years ago - 

    anyhow nice to share hope it goes well 

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    • Posted

      Thanks Dave and Sharon.

      did either of you get high bp and high blood sugar with the steroid? My change of medication is due to the side effects of prednisolone. I had also gained a lot of weight, but have lost most of it as my steroid dosage was brought down. This was before my latest lung function test which has shown worse results.

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  • Posted

    I don't know - I am going to ask my consultant on wed to check 

    I only see him every six month now and he's not that good I'm he's only patient with this condition - I have had no feeling in my left leg and I have low back pain at the minute that I intend to inform him of but I will have him check my blood pressure and blood sugar this week and let you know I have had some hair loss too - regards 

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  • Posted

    Hello, 

     

       I am 24 years old, and I have been on prednisone and methotrexate for years. I use to take methotrexate in pill form, on and off, but it was making me very nauseous and sick. Therefore, recently, half a year ago, I started taking it in an injection form (in the arm). I still feel nauseus a day after, but it isn't all that bad compared to the pill form. My doctor is still trying to figure out if it is helping or not.

    Try methotrexate it if your doctor suggests it.

    Good luck.

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    • Posted

      HI Ruby,

      Sorry to hear of your side effects.. and how you have so much courage and I am sure the Drs will find something that works for you.

      Nov.  2013 it was found I have sarcoidosis on my lungs, liver and bones !  I have been on prednisone for one year had to come off it due to sided effects of high blood pressure and high blood sugar and I did not like giving myself insulin also the Dr. felt the side effects with my heart troubles would not be good for me.. so, I was placed on methotrxate along with Folic Acid that helps to protect your stomach before taking methotrexate.. been on it for two years only side effect I have is stomach aches but they are managable and I often stay up very late.. maybe the steroid in the medicine.. Thankful to God... my sarcoidosis seem to have "quieted" so now I am being weaned off the Methotrexate.. very slowly as per Dr. instructions.  Hope your Dr. have figure out something to help you.  Take care.

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  • Posted

    Hi,

    My doctor wants to put me on methotrexate. I'm afraid

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  • Posted

    The doctor wants to put me on methotrexate. I wonder if this a safe drug?
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    • Posted

      HI Jean926,

      I have been on methotrexate (mtx) and folic acid for two years for treatment of sarcoidosis and it has "quiet" the tumors from multiplying and I am now being weaned off MTX,   The folic acid helps to protect the stomach so that it doesn't cause much pain from effect of the mtx.. so Dr. reminded me that it was important to take the Folic Acid two days before taking the MTX.   I found it was safe for me.. and so we can only hope that for it to be of help to us.   All medication as side effects and so we just have to try and trust. Take care let me know how things are going for you. now.

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  • Posted

    Hello Skesher, I just found your message it three years old..I had something similar happen to me.. Nov. 2013 I was found with scattered nodules all over my lungs, liver and bones.. at first cancer Dr's believed it was cancer from the MIR, Ultrasound and Bone Scan results showing - scattered tumors all over  ! and while blood test was being done and a CT Scans;  I was referred to a pulmonary Dr. who did twice a bronchoscopy but found negative. I was told that could be as the tumors were so tiny ! and he sent me for pulmonary test which showed that I did not have the full function of my lungs.

    Then at the same time the Dr.'s was treating me for cancer placed me on prednisone for a year; I had a few side effects main one very high blood sugar levels to the point I was on insulin !  I did not like that and it caused my blood pressure to be high and had a terrible time trying to sleep !  

    then I saw a cancer lung Dr. who told me that he could not do a biospy on my 4th stage lung cancer !!  so, it was instead I had a liver biospy that showed it was "sarcoidosis" on my lungs, liver and bones.   

    After one year on prednisone I was taken off and place on Methotrexate (MTX) for a two year treatment I did not have much side effects with this medication only stomach aches which I was able to manage with the Folic Acid that is taken two days before I take the methoctrexate.  I am now being weaned off it slowly

    Yes, I think you should try the MTX.. and see how it goes for you.  Hope you are doing OK..  Take care.

     

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