Meds - Methotrexate

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Is anyone with Wegener's currently taking Methotrexate?  I just started taking these pills 1 day per week and 5 days per week of folic acid.  I may meet with my doctor again this week as all my questions have not been answered.  Ok if I'm understanding this correctly I'm taking these meds to hopefully stay in remission as this disease can damage organs and be fatal, yet taking these meds could also damage organs.  I'm told a relapse could be bad though especially with what I've read.  At this time not doing too bad but sleep poor/even when I sleep better very fatigued.  Concerned as I have to go back to work full time soon, hope I can make it through the day.  Some feedback please after remission/going back to work over time does this fatigue start to go away/do you feel better?

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  • Posted

    Also, if any of you are taking methotrexate/have taken this med did you experience many side affects?
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  • Posted

    Hi there, my 15 year old daughter isn't taking the meds that you mention but she is constantly fatigued, the doctors can't tell us whether this will improve as every individual is different, but she is always tired / exhausted. They led us to believe that it may be the MMF that she takes daily contributing to the tiredness, maybe it's just the Wegener's?

     

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    • Posted

      Hi Shannon:  Sorry to hear your daughter has Wegener's.  I have low iron, it's going up though as in menopause (only due to a med I was taking).  Been on methotrexate for 6 weeks now, yes makes me very tired especially the day I take it and the day after.  My doctor wants me doing cardio every day, I'm now averaging 3 times a week, I could probably push a little harder.  Also taking sleeping pills which I don't like but I have a very difficult time falling a sleep and staying asleep for a bit without them.  Yes I do believe some of this feeling of being exhausted is from the disease itself.  What is MMF?  I hope your daughter feels better soon.  I'm seeing my doctor next week, right now scheduled to go back to work March 30, hope I will be able to work full time, as my job is full time.  I tire easy with the exercise but feel better the next day.  I was fairly active before I got ill
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  • Posted

    Hi, I was diagnosed 3 years ago ENT issues and like you was very worried by the side effect of the meds that I was offered which included Methotrexate. My symptoms compared to many on this forum are mild and they can be resolved with ENT surgury so I held off meds for 2 years, but got fed up with my airways narrowing and more surgery and risk of WG going into my lungs. So I decided to try and get inflammation down with meds-  I am now on Sirolimus which is an immuno suppressant. I have just put up a post on here as I have yet to see anyone else on this treatment path and would be interested in others experiences on it.  
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    • Posted

      I don't know anyone personally who has this disease but in reading comments on forums haven't saw anyone other than yourself who didn't take meds within the first 2-3 years, this is good to hear.  I'm not familiar with Sirolimus.  Take care it sounds like you are doing quite well.  I suppose I'm not doing too bad considering some comments I've read.  If I could just sleep through the night.  Very concerned about returning to work, solid sleep 3-4 hours (that's with half a sleeping pill) wake up either sweating or to go to the washroom, oh some nightmares since on med.  I really think for me my sleep is the biggest problem.  Feeling a little better over time, trying to remain positive. 
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    • Posted

      Ann do you mind me asking you how old you are?  I'm 49 I was diagnosed with this in May of 2014 at age 48.  Just curious (a general question to all) did you have sleeping problems when you got ill.  My sleep has been poor for years.  Also, I've had low iron for years.  Told stress can bring on this disease although it is quite rare and there is no known cause
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    • Posted

      Hi I was 44 when diagnosed, 47 now. I've had night sweats on and off since WG, it seems to go in cycles, otherwise my sleep is fine. The inflammation has hit 3 parts of my trachea/bronchial - that impacts breathing. Also my ears got an attack prior to diagnosis and I have perm vent tubes in ears as ENT consultant didn't know what was causing the issue.

      Apparently there are 3 similar cases to mine in London ie the WG grumbles and hits only ENT area. I feel very lucky reading the forums as I'm clearly low grade, and desperately hope it stays that way.

      I can usually bike commute, or get running up to 5k without problems. I've worked right through as I have a desk based role, but I'm freelance so don't have paid sick leave.

      General tiredness hits from time to time but I try to ignore it.

      Hope you get your sleep sorted, tiredness & night sweats miserable.

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    • Posted

      Wow thats great Ann. Im really surprised to hear you didn't need any time off work. My story is very involved but I got pneumonia right lung from WG. Was in very bad shape hospitalized 2 weeks. Thats good to hear your sleeping well also
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    • Posted

      At this time Im not doing too bad considering what I've read and what my doctors have told me about WG. It's scarry though as doctors don't know how or why this disorder is brought on. I hope in the near future doctors are more educated on this. Yes I hope and pray for everyone involved that they will get better soon
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  • Posted

    Hi there,

    Apologies if this response appears twice, but I lost connection half way through the first posting, MMF is mycophenolate motefil (I may have spelt it incorrectly the first time)

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