Re: Switching from oral to injectables

[Guest guest]

Hi ,

For my son , switching to injectable MTX was the very best thing

we ever did ~ in terms of his JRA treatment plan. He started taking a

7.5mg oral dose while he was still hospitalized during his first flare.

We hoped he would have a great response to it but his arthritis was

stubborn and remained very active, even though he was also continuing to

take a rather high dose of oral prednisone and an NSAID twice daily. He

was able to physically tolerate it well enough, with only mild side

effects (lots milder than the disease symptoms!) so we gradually

increased the dose to 10mg. We added another DMARD on top of it, daily

hydroxychloroquine (Plaquenil). Still, he needed semi high doses of

prednisone to keep from flaring. Corticosteroids seemed to be the only

thing that stopped the daily fever spikes, rash, morning stiffness,

pain, contractures and limited range of motion in lots of various joints

(elbows, wrists, fingers, knees, and ankles, mostly). Even though my son

was feeling good when taking the higher range of daily prednisone, his

labs were still abnormal. Super high SED rate was common, as was

elevated white blood cell count. It wasn't that he was exactly

non-responsive to the other meds, just that his JRA was very active and

aggressive. We bumped the MTX up to 15mg. Even then, the arthritis

didn't quite settle down. Being that this was before the advent of the

biologicals, we had hit a new bump in the road. Maxing out on doses of

all the commonly used meds, we were faced with considering more radical

measures.

My son was greatly opposed to injections. He'd gotten comfortable with

all the necessary blood draws but didn't want to get shots. It was a

really big deal for him (and me too, back then!) but we had no easy

options to choose from. Wait till he reached the age of 12, old enough

to be included in an ongoing research study involving one of the newest,

not yet released or FDA approved, arthritis drugs ... and hope that that

worked for him (Arava) or while we're waiting for that (he was still 11)

switch to injectable MTX. Or, go ahead and try a much more toxic but

available med, which I didn't feel comfortable doing. Even to just do IV

pulses of steroids, another option available to us that helps many kids

with systemic JRA, we would need to fly off-island for the procedures ~

which would be extremely difficult as I'm a single parent with a younger

other child to arrange care for. Our pediatrician didn't feel

comfortable, saying Josh needed his specialist and should be at the

hospital in Honolulu, rather than here in Maui. So, we convinced Josh to

at least try MTX by injection. To see if it made any difference. Sure

enough ... it did! He hated the way it made him feel for the first few

hours after taking it but he could handle the nauseous and tiredness and

" weird feeling " and the strange saliva problem he noticed from it,

because those things went away pretty quickly and all of a sudden he had

a marked decrease in joint pain and stiffness, morning stiffness, his

anemia went away, his blood counts came back normal ... he noticed huge

improvements in all areas.

He first got sick in May, 1995. He started taking injectable MTX in the

summer of 1999. From that point on, his arthritis has basically been

under control. Medicated remission. He has had a few flareups since then

but it was out of the norm, rather than being an everyday thing like it

was in the beginning. He was even able to taper down his steroids, which

had been virtually impossible before that. For us, it was definitely a

mjor breakthrough. Only wish now that we'd forced the issue a bit

sooner. These days, Josh gives himself injections every day and it's not

a big deal for him anymore. How things change!

I hope this all helps a little bit? I also found two recent research

articles on the same topic, which I'll post after this. Good luck!

Aloha,

Georgina

katherine_knoble wrote:

> Hello Gang,

> For those of you who have switched from oral MTX to injectables,

> could you tell me how this decision is made? How many times the oral

> was increased before the change over to injectables and your overall

> feelings on it.

>

> Happy Easter/Spring to all.

> Thanks

>

[Guest guest]

Hi katherine,

My son was switched from oral mtx to injectable after two increases

of the dose of oral...well, actually, he was taking the injectable

mtx orally in juice, and he started at .6cc weekly in juice,

increased to .8cc in juice, and then after a few weeks of tummy

problems, and at the same time, trying to taper down the pred, his

doctor increased the mtx dose to the max, amount for his size, which

was 1cc, or 25 mg weekly, and his doctor said that at that amount, it

had to be given by injection, plus, we thought his tummy problems

would improve with injections, and they did, until after about 6

weeks of injections, and then he started vommiting again, so we

stopped the mtx completely. Anyways, longer story than I expected,

that was why we changed over to injections. I was sooo scared to give

them at first, but once we got used to it, I thought it was much

better and easier than giving it orally. Good luck!

Jodi, Bronson age 9, systemic

[Guest guest]

Thanks for the input. What does Bronson take now? I think we have

room to move up on the MTX, Christian is 12 years old, 5ft.7 " , 145lbs

(usually 112lbs before prednisone) We have not had an increase since

he started on it in late Dec. so I suppose that will be an option if

he continues to remain where he is now. I have no idea what the max

amount would be for him to take orally but it's something I will ask

the Rheumy.

Thanks for the help. How long has Bronson been dealing with this?

> Hi katherine,

> My son was switched from oral mtx to injectable after two increases

> of the dose of oral...well, actually, he was taking the injectable

> mtx orally in juice, and he started at .6cc weekly in juice,

> increased to .8cc in juice, and then after a few weeks of tummy

> problems, and at the same time, trying to taper down the pred, his

> doctor increased the mtx dose to the max, amount for his size,

which

> was 1cc, or 25 mg weekly, and his doctor said that at that amount,

it

> had to be given by injection, plus, we thought his tummy problems

> would improve with injections, and they did, until after about 6

> weeks of injections, and then he started vommiting again, so we

> stopped the mtx completely. Anyways, longer story than I expected,

> that was why we changed over to injections. I was sooo scared to

give

> them at first, but once we got used to it, I thought it was much

> better and easier than giving it orally. Good luck!

> Jodi, Bronson age 9, systemic

[Guest guest]

WOW! You have been through so much! Your information has given me

great insight. Thanks so much.

> > Hello Gang,

> > For those of you who have switched from oral MTX to injectables,

> > could you tell me how this decision is made? How many times the

oral

> > was increased before the change over to injectables and your

overall

> > feelings on it.

> >

> > Happy Easter/Spring to all.

> > Thanks

> >

[Guest guest]

-HI ..

only took 3 doses of oral MTX before we switched over. Our

rheumy seems to advocate for the injections over the oral. I think

she would have liked us to start on injections, but i was too freaked

at the time and said i wanted to try oral 1st.

Oral was hard on ... he had to wait for two hours after

eating before taking the pills and then couldnt eat for another hour

afterwards ( according to the lit. i was given) 3 hours not eating is

tough for a kid on prednisone ( well it was for , he was on

10mg at the time and eating constantly) They gave him a tummyache and

diarraha. The rheumy suggested adding another medication for the

tummy issues, but we never went that route.

next time we met with her we discussed the oral v injections and it

did make sense to switch him for these reasons....

1. Injections are better absorbed.. they are getting the full benefits

2. injections bypass the stomach.. so no more tummyaches and diarraha.

3. no eating limitations.

4. Less likelihood of liver problems from injections v oral.

5. If Nicks need for MTX got to 15 -17.5mg he would have to go on to

injections anyhows.

It's worked great for us... Nick does great with his shots. It is a

bit more time comsuming because i need to put the emla on 2 hours

prior to the shot. I just feel if i have to give him a drug such as

MTX, he might as well get the full benefit of the dose, rather than

leaving us guessing, if possible symptoms, are because of him not

absorbing the complete dose or if the dose itself is too low. Theres

just soo many variables with this, especially with the prednisone too

and trying to taper that.

Hope this helps a little.

Hugs Helen and (6,systemic)

-- In , " katherine_knoble "

<knoblefamily@c...> wrote:

> Hello Gang,

> For those of you who have switched from oral MTX to injectables,

> could you tell me how this decision is made? How many times the

oral

> was increased before the change over to injectables and your

overall

> feelings on it.

>

> Happy Easter/Spring to all.

> Thanks

>

[Guest guest]

Hi Helen,

Thanks for outlining the reasons for possible switch to injectables.

Very clear and a great way to understand. I totally agree with the

benefit of knowing exactly how much MTX is being absorbed in the body

vs. guessing with the oral. Now, I was unaware of eating

restrictions while taking oral MTX, Christian eats shortly after

taking his. I know about staying away from milk products but please

fill me in on the food restrictions.

Have you heard from your Rheumy yet? Of course, being a holiday

weekend you may not hear until Monday, right. Is Nick doing OK today?

> > Hello Gang,

> > For those of you who have switched from oral MTX to injectables,

> > could you tell me how this decision is made? How many times the

> oral

> > was increased before the change over to injectables and your

> overall

> > feelings on it.

> >

> > Happy Easter/Spring to all.

> > Thanks

> >

[Guest guest]

Helen. It seems that injectable is the way to go. I don't know how

our doctor feels about that, but Caroline's having the worst stomach

problems. Her rheumy aquates it to the Prednisone, but I am not sure.

We started Zantac two weeks ago, but same problems. Caroline is

currently on 15 mg/week of MTX and there has been no talk of

switching to injectables... Maybe because of her age... I don't

know.. I just think it's really interesting.

Alia and Caroline, 2, poly/uveitis

> > Hello Gang,

> > For those of you who have switched from oral MTX to injectables,

> > could you tell me how this decision is made? How many times the

> oral

> > was increased before the change over to injectables and your

> overall

> > feelings on it.

> >

> > Happy Easter/Spring to all.

> > Thanks

> >

[Guest guest]

. According to our Rheumy, you are not supposed to eat for 3

hours before getting MTX and one hour after. We usually give it to

Caroline in the morning when she wakes up and then just give her

breakfast an hour later..

Alia and Caroline,2, poly/uveitis

> > > Hello Gang,

> > > For those of you who have switched from oral MTX to

injectables,

> > > could you tell me how this decision is made? How many times

the

> > oral

> > > was increased before the change over to injectables and your

> > overall

> > > feelings on it.

> > >

> > > Happy Easter/Spring to all.

> > > Thanks

> > >

[Guest guest]

-..

its my understanding, and I may be way off base, but MTX is better

absorbed the more empty the stomach is. So while it would be ok to

eat with it, its better if you dont.

Hugs Helen and (6,systemic)

-- In , " katherine_knoble "

<knoblefamily@c...> wrote:

> Hi Helen,

> Thanks for outlining the reasons for possible switch to

injectables.

> Very clear and a great way to understand. I totally agree with the

> benefit of knowing exactly how much MTX is being absorbed in the

body

> vs. guessing with the oral. Now, I was unaware of eating

> restrictions while taking oral MTX, Christian eats shortly after

> taking his. I know about staying away from milk products but

please

> fill me in on the food restrictions.

>

> Have you heard from your Rheumy yet? Of course, being a holiday

> weekend you may not hear until Monday, right. Is Nick doing OK

today?

>

>

>

>

> > > Hello Gang,

> > > For those of you who have switched from oral MTX to

injectables,

> > > could you tell me how this decision is made? How many times

the

> > oral

> > > was increased before the change over to injectables and your

> > overall

> > > feelings on it.

> > >

> > > Happy Easter/Spring to all.

> > > Thanks

> > >

[Guest guest]

,

Our story of switching to injectible MTX was extremely positive.

Hunter,7, started oral pills last Sept. and quickly got to the

highest dose for his weight, 25mg. It took about 8 weeks to kick in

at all, which got us to about 50 - 75% of pain relief, I'm

guessing. After one month of being 50-75% on oral pills, we went to

injectible put into orange juice (the liquid not injected but

swallowed). After two months on that with little to no improvement,

we went to weekly injections which we started in early Feb '04. We

were discussing Enbrel before we finally did the MTX injections. If

the MTX injections start to not be enough and Hunter takes a turn

for the worse at any point in time, we're definitely going to

investigate the Enbrel route right away.

As far as the injections goes, I'm sure both you and your child have

a fear of them, as we all do. There are great ways to cope. We use

EMLA cream which is a topical anesthetic that left on for an hour or

two, the child feels nothing. Ask more when you make your decision.

If the child's joints are in pain or swollen, there is joint damage

going on. You must do everything possible to prevent that from

happening and causing lifelong damage to the joints.

Best of luck with your decision.

Stacia and Hunter,7,systemic,iritis