Oscar's apt yesterday | Arthritis Information

Oscar's fingers have continued to get worse over the 2 months he was given to get better. He now has 6 that are swollen (too many to inject).
I did not know that his other hand had swollen fingers now too. He kept saying he was "fine".

Dr M increased his MTX from 15 to 25 mg (injectable). He has to go next week to learn how to inject himself. I am worried sick about such a big jump since he has always been so sensitive to any increase. She thinks because it is injectable he will do okay with it.

Anybody have a jump like that and do okay? Or not do okay? I am thinking of calling and asking if we can start at .6 and increase weekly by .1.

If they are not better next visit she said she will have to get more aggressive I don't know about MTX. But I do know that a UCLA doctor at an outlying clinic treats RA with Minocin.Thanks, I asked his dr about that and she said she would not consider that for him.

She said there are studies going on at UCLA Children's right now and we can revisit that when the results are in. He has got bone loss in his fingers and she is afraid he is headed for erosions. I trust her and know she has been doing this for so long and has gotten him from being in pain everyday in most joints and falling down constantly trying to keep up with his friends to very little pain and stiffness. He has been dealing with this for many years and his fingers just started acting up again recently.

Thanks for your reply Hi Pam, am really sorry that Oscar's fingers are getting worse. I can't answer your question about the dramatic increase in MXT. My RD is a graduate of UCLA and did some work at Scripps. He still teaches several times a year at Scripps. He's aggressive. I went from 12 mg. to 20 mg. and then we backed off to 17.5 mg. The dosing may just be part of how they're taught at UCLA. It sounds backwards but it makes sense to me and it worked for me. If I had gone up 2.5 mg. every couple of months it would have taken me many more months to get to 17.5 mg. We know how much damage can be done in just 6 months and with children who knows. Why don't you call and talk with the RD further about the increase. That may alleviate your fears. It's so hard for us to understand how our children will be affected by certain meds and treatments. We don't want to do harm but then we want to do everything possible to help them. It's a difficult spot to be in and my heart goes out to you. Lindy I don't think it would hurt if you just increased some each week. How long before he sees her again? Your his Momma Sweetie. You do what you think is best....she probable won't even know the difference.

He sounds like a brave young man Pam. I know you're worried....but he's going to be alright. Try not to let your worry trouble him. As you know yourself stress makes us all worse....try to make the transition as stress free as possible....even if he does get a little sick. Don't panic. It will just take his body a little time to get use to it and he'll be better for it.

Good Luck. I'll be following his progress. Keep your chin up.

Hi Pam,

I wasn't aware that it was your son that had RA, I thought it was you. So sorry to hear it's your boy -- how old is he, if I might ask?

Talk to your RA doc about your concerns about going from 15 to 25mg. Perhaps injecting 20mg and then the next week injecting 25mg would be an option. How often does your son do lab -- alt/sgpt tests for the liver which mtx can affect. I do mine every 2 months. If the increase dose affects those tests, then I'd guess your doc would most likely cutback.

I've been on mtx since 1986 (no I wasn't a kid, a young adult

You might look into fish oil (omega 3) I've heard a lot of positive things about them and several here on the forum take them. Check w/your doctor. I keep intending too, I have a bottle of flaxseed oil (also an omega 3) in my frig that I should be taking. I'm bad. Just be sure to get a good quality product.

We adults have difficult times making decisions about the meds we take, it must be extra hard making that decision for one's child. Hope it helps to know mtx has been used in treating RA for a while now, so there should be a lot of data out there. Ask about taking folic acid, also mtx can make one a little more sun sensitive, but since we are going into winter that shouldn't be an issue.

Take care Pam. I wish you and Oscar the best.

Lindy, Lovie, and Joie,

Thank you all for your support. It really means a lot to me. Lovie, you know me, the professional worrier

Joie, I have ra also. I have never taken mtx, though. Oscar is 15 and has had arthritis since he was about 2 1/2 years old. He has been on mtx for about 3 years now and takes Leukovorin. He has labs done every 3 months and has never had any problems with his liver results. He had a really hard time initially adjusting to the mtx and finding the right dose. He could not take more than 12.5 mg for a long time but was still having problems so they split the dose over 2 days and they were able to add another pill. He has done really well for a long time and I was hoping for once he could get throught the weather change and winter without having problems we could talk about reducing the mtx. You are right it is so agonizing to make these decisions for your child. He is ANA and RF+ and has had Iritis but that has been clear for a very long time now. RF is almost always neg in children so his RF being + is a sign that this is not going to be something he will out grow. Every time we think he is close to remission things go south. I am just praying the increase in the MTX does the job for him. His rheumy is the head of Ped Rheumatology at UCLA Children's Hosp in Los Angeles and has many kids that have been on MTX for many years and are adults now and doing great.

I did get some good fish oil pills for bot of us.

Thanks again for all the support and advice

Pam

Pam, good luck with this problem. I can't imagine having a child with RA---so heartbreaking.

I just wanted to let you know fish oil works best if you're getting 3 grams of combined EPA/DPA daily. (Check the labels). I have to take 10 i gram pills to get 3 grams of Omega 3s. Because of the high dose it's important to use oil extracted from the body of the fish, not the liver. Liver oil has too much vitamins A and E.

I hope Oscar improves soon.Pam,

So Oscar is going from mtx pills to injectable mtx? I switched a few years ago to injectable. Less GI issues bypassing the stomach, plus the same dose of injectable is more effective than the same dose in pills.

Oscar plays the guitar, how neat. Alan, here on the forum, has RA and plays the mandolin. Oscar may want to consider when his fingers are in a flare to take more breaks, or cutback a little on the guitar, maybe ask Alan for some suggestions (I think he may have went to physical therapy for tips on taking care of his hands, so many posters, sometimes I get them confused, but think it was Al)

Take care. (ps love your halloween stuff, i love this holiday too, but alas, i live in the country, and the only thing that wanders up my road is the occassional skunk or wild turkey)

Thanks so much, Gimpy. I checked them and they are 3.3 grams of combined EPA/DPA daily (2 pills). Also, from the body not the liver

Yes, Joie he is switching now to injectable. He will learn next Friday how to inject himself.

It has been a long time since he has gone to PT. Being a kid it is really hard to keep him doing the things he need to do. He does have splints that he got recently to wear on his fingers to support them while he plays guitar, types and writes.

Hmmmmm, I wonder what kind of candy bars skunks and turkies like Thanks, Suzanne

I agree. I think we will just do that. As Lovie said, the doc won't know the difference. He sees her in 3 months so it should show some improvement by then if it is going to work. I will tell her that is how we did it.

Thanks for your reply Also see that thread I started about the dosage. Sounds like 25 mg injectible would be more than 25 mg oral? I went from 20 mg oral to 20 injectible (.8) and I did have that reaction the first couple of times. Thanks, Katie!

I did see that thread.

Oscar has always take the MTX at bedtime so I was kind of bummed that he will have to take the brundt of it during the day first time around....another reason to start off with a little bit lower dose [QUOTE=Pam S] Thanks for telling me that.

We better watch where we are because he is way to big to pick up and carry home

I'll keep an eye on him and keep him home for the weekend.

Thanks, Suzanne!

Today was Oscar's apt and he did great! You would never have been able to guess he is a needle phobic. The nurse showed him how to draw it up and then inject it. She had him practice once and then told him to do another practice one and he just said "no, I know what to do, lets just do it" and....he did it. I thought I had brought the wrong kid

I was so worried about nausea but so far so good.

Pam,

That's great to hear that Oscar's first mtx shot went well. I inject mtx and don't have any nausea, so I hope he has the same results. I also have an enbrel shot on the same day, and sometimes I can feel tired the next day. I try to drink plenty of water(fluids) on that day, seems to help. I also use a 27G needle, so it doesn't hurt much at all. Injectable mtx can be more effective (bypassing the stomach/digestion) so I hope Oscar sees some good results soon so he can continue playing guitar for many, many more years to come. Take care.

Pam,

I was on the same page as Joie, didnt realize your son had RA. He sounds like a real trooper. I was dx with JRA when I was 14, this can be devastating to a teenager but he seems to be handling it really well. Sounds like you have a wonderful Dr that is going to do everything they can for him. Tell him to keep his spirit up, sometimes it will be hard but faith and the will to keep on going will get him through everything.

WTG Oscar!Thanks for the tips Joy! I will try to get him to drink more the day of his injection. They used a 26 gage and he did well. The needles our pharmacy gave are not as small though. Since we have'nt used them I think I'll see if we can trade them for the 26 or 27 for him.

Linda, he does over all do really well but he has his times where he is angry (when he can't do something he wants to do) and feel ra has ruined his life. It kind of goes in waves depending on how he is doing. Mostly he handles it really well.

Thanks Kel!!!