Re: AP and methotrexate??

[Guest guest]

Dear Deborah,

My story is very similar to yours. My daughter who is 14 now was diagnosed

with severe JRA about 19 months ago. After scorning conventional

rheumatology and trying for about 9 months to treat her with homeopathy,

supplements, diet changes, accupuncture and herbs, we found our way to the AP

and it will be 1 year completed on November 2. She was also bed ridden, out

of school for 4 months at the beginning of the AP, in excruciating pain, and

of course, unable to do the dancing and sports that had been the center of

her life. We saw Dr. Trentham in Boston, and he convinced us to do a low

dose of methotrxate right from the start with the AP. His thinking was that

it would help relieve her extreme inflammation during the time before the

minocin kicked in which he said took 2-3 months. He did not believe in the

herx phenomema although Emma started to herx immediately and didn't really

come out of it till the 2-3 month time when the minocin was to suppose to

start. But she really had no negative side effects from the metho, no

increase in tiredness, nausea or anything else we could see. She took it

(7.5mg) once a week, and it was not a big deal though he did check her liver

function at every visit, but it was always normal. I wasn't sure if it

helped, but over the course of this year, she went from being bed bound,

needing to be carried up and down steps, unable to fully sit on a toilet,

etc. to about 80-90% back to normal. She still has some swelling, still some

pain, but she's in school full time with a rigorous schedule, and plays a

little tennis with her Dad and shoots baskets in the driveway, but no school

sports, which is a great loss for her.

Last time we saw Trentham, Aug. 30, he said it was time to wean her off the

metho. So she went to 5 mg/week instead of 7.5. and I think she's been

experienceing a bit more pain and stiffness in these past few weeks. Her

shoulder which was the first place to bother her, is acting up again, and

she's had some achiness which was pretty much gone. So I guess the metho was

helping and I don't know what this means, I'm not sure she should cut back

again when we see him in 2 weeks which was the plan. Emma is not satisfied

with where she is at and wants a full recovery, wants to do sports again,

wants all the swelling gone. We are trying to keep her focused on the

progress thus far and to be positive and hopeful for more. Who knows what's

possible, but if she is focused on the goal, I believe she will accomplish

it. I don't know if this helps, I don't believe the metho interfers with the

minocin, and perhaps it can help her. But many here seem to feel using it is

dangerous etc. However these are very low doses and hopefully for a short

course ( if a year can be considered a short course) these are horrible

diseases and in children especially I think you should try whatever it takes

to help them live a normal life while time and minocin continue to work

toward remission. If the side effects are bad for her, you stop that's all.

I'd love to hear more about her progress and how you all cope as a family.

Sincerely, Kathy Rosenberg