Toni
09-03-2013, 02:59 AM
Hi everyone~
Our 12 year old son, Jaxon, was diagnosed with limited ocular wegeners in Oct 2012. He had 2 or 3 flare-ups the prior 2 years before diagnosis that would finally respond to prednisone. As a youngster, there were times I was worried he had asthma, allergies, or ear problems, and I now wonder if all that was related to W-G. He started weekly 25 mg Methotrexate by mouth the end of October (with daily folic acid except on methotrexate day) and then was tapered off his prednisone.
Initially, had some significant headache issues with the methotrexate but that has been much better if he stays well hydrated.
He still has some upset stomach with dosing and actually this past week vomited up his dose. I'm wondering if we might be heading towards the SQ route for his methotrexate. Input on on oral vs subcutaneous route would be appreciated!
He is one that his ANCAs have always been negative, but other inflammatory markers (sed rate and CRP) have been elevated. His positive biopsy came from a wound in his eyelid.
We are seeing a pediatric rheumatologist at a University Hospital....with whom we have been very happy with...they keep close tabs on him! Sounds like he'll be on the methotrexate for ~2 years and then try him off of it....they've told us 50% chance of remission at that point. I don't know at that point if it reoccurs he would go back on the methotrexate or up a level of drug. I think we'll just plan on remission!!
When Jaxon was first diagnosed....I just cried for him (and us) and then days later cried for those people and parents of kids who suffered with this in the 1970s and before....they did not have the weapons available today. Gives me hope that generations to come will have an even better arsenal!
Thanks for reading and for all the valuable input and support!
~Toni
Our 12 year old son, Jaxon, was diagnosed with limited ocular wegeners in Oct 2012. He had 2 or 3 flare-ups the prior 2 years before diagnosis that would finally respond to prednisone. As a youngster, there were times I was worried he had asthma, allergies, or ear problems, and I now wonder if all that was related to W-G. He started weekly 25 mg Methotrexate by mouth the end of October (with daily folic acid except on methotrexate day) and then was tapered off his prednisone.
Initially, had some significant headache issues with the methotrexate but that has been much better if he stays well hydrated.
He still has some upset stomach with dosing and actually this past week vomited up his dose. I'm wondering if we might be heading towards the SQ route for his methotrexate. Input on on oral vs subcutaneous route would be appreciated!
He is one that his ANCAs have always been negative, but other inflammatory markers (sed rate and CRP) have been elevated. His positive biopsy came from a wound in his eyelid.
We are seeing a pediatric rheumatologist at a University Hospital....with whom we have been very happy with...they keep close tabs on him! Sounds like he'll be on the methotrexate for ~2 years and then try him off of it....they've told us 50% chance of remission at that point. I don't know at that point if it reoccurs he would go back on the methotrexate or up a level of drug. I think we'll just plan on remission!!
When Jaxon was first diagnosed....I just cried for him (and us) and then days later cried for those people and parents of kids who suffered with this in the 1970s and before....they did not have the weapons available today. Gives me hope that generations to come will have an even better arsenal!
Thanks for reading and for all the valuable input and support!
~Toni