Good Morning America

[Sangye]

Yes, it doesn't make sense to take folic acid only once a week. It's water-soluble, so you need to replenish it daily.

[purr6]

Thank you. I will ask about the folic acid being taken daily at my next appointment. I was on 20 mg of methotrexate initially, but it had to be decreased because my white blood cell count was extremely low. Since then it has come up a bit, so the doctors felt that staying at the 15mg dosage of methotrexate is appropriate. I asked at my last appointment if perhaps because of the joint pain, this was an indicator that the methotrexate is not controlling the WG. The response I got was that my bloodwork results were good (with the exception of the white blood cell count). ANCA was borderline--but apparently that is ok. It was mentioned that we would only try the rituximab if I have a flare up.

I have to say, not having a medical background, this disease and its treatment is very confusing--nothing seems clear cut. I am now wishing I had that type of training. My teacher training just doesn't cut it when dealing with all of this!

[Tim Roberts]

For what it is worth, I also take methotrexate (20 mg) orally once per week and I have also experienced the same nausea symptoms. i can relate that I dread taking it every Tuesday as I know that i will not feel well the rest of that day and even drained on Wednesday. In discussing this with my rheumatologist, she suggested increasing my daily dosage of folic acid from 1 mg to 2 mg. She also suggested that I take an antacid about an hour before taking the weekly methotrexate dose. To be honest, the two changes have a made difference and the nausea and upset stomach that I used to experience have improved. It hasn't eliminated all of the discomfort but it has noticeably improved it. She also indicated that if these two changes did not help me that I could consider taking methotrexate by injection rather than orally. Just a thought and I hope this helps.

[purr6]

Thank you so much, Tim! I appreciate your response. I will try the antacid and ask about the folic acid increase as well as the injection idea. Is it a self-injection or one that must be administered by the doctor each week? Thanks again and yes, it most certainly does help!

[Tim Roberts]

No problem at all. As I understand it, it is a self injection that we can administer. I have one of the people that I work with that takes methotrexate by injection for her rheumatoid arthritis and indicates it is easy and she would never go back to taking it orally. Again, a good conversation for you and your doctor at your next appointment.

[Cindy]

Keep an eye out for the joint pain...it could indicate wegeners acting up. That is what we are here for to listen to each other....cause we understand. :wink1:

I have had chronic joint pain for about a year and that is why I had an MRI last week. I will see my WG doctor next week to see what he thinks. I also worry that it is smoldering WG.

[Jack]

Anyone requiring stomach protection may well be better off taking a Proton-Pump Inhibitor such as Lansoprazole. It is far more effective and longer lasting than alkaline based antacids.

[Hammy8241]

Guess I'm the odd one out. No problems with mtx eaither oral (25mg) or now injection (20mg) weekly. I Take 5mg Fa two days after the mtx only. Injections are by self, are easy (after the first one) and painless. The move from oral to injection has/is making an improvement to my condition as well.

[Sangye]

I asked at my last appointment if perhaps because of the joint pain, this was an indicator that the methotrexate is not controlling the WG. The response I got was that my bloodwork results were good (with the exception of the white blood cell count). ANCA was borderline--but apparently that is ok. It was mentioned that we would only try the rituximab if I have a flare up.

I have to say, not having a medical background, this disease and its treatment is very confusing--nothing seems clear cut. I am now wishing I had that type of training. My teacher training just doesn't cut it when dealing with all of this!

The entire time I had joint pain my labs looked great. It wasn't until the Wegs activity increased and finally caused lung hemorrhaging that it was clear it was not under control.

I'm wondering how your joint pain was on the higher dose of mtx? (You might have been on pred, though, which can mask it)

Wegs is very complicated, and you're right--nothing is clear. I'm a physician (chiropractic) and have had to learn a lot since being dx'ed. It's not like most other diseases in the way it behaves, and can be incredibly difficult to know what's going on with it. All of my non-Wegs docs have learned a lot, too. It's like Wegs is from another planet.

[janNaz]

I just started 15 mg of mtx tablets yesterday and took my first 1 mg of FA this morning. So far so good, but it might be too soon to notice anything different for me. Tho I am still trying to decide if I should take FA on the day I take mtx, even though rheumy said not to. I too will definitely keep in mind the stomach protection, increasing FA, and mtx injections.