Questions about MTX(and Simponi)

[ashly825]

It's been a while since I've checked in here and some of you remember that I was up in the air about my daughter's Crohn's meds. Well she developed an allergy to the Entyvio she was put on in January(So that means med number 4 has bit the dust. She built resistance to Imuran, Remicade, Humira and she had a severe skin allergic reaction to Entyvio 3 times in a row with it getting worse each time).

Her GI really did not want her to take MTX but the rheumy she just seen(she has been diagnosed with fibro and possible early JRA) said with her building continuous antibodies that she needed to be on a low dose of MTX and for her joints as well. She has also been diagnosed with Hidradenitis Suppurativa(the sores I had asked some of you about) and the Entyvio doesn't help with that. The sores did clear up with Remicade and Humira though, so the doctor has put her on Simponi and MTX.

My questions:
1. I know they recommend 1 mg of folic acid daily(her doc has her taking it the day of the injection as well)and I see some of you guys doing 2 mg. Should I try that right away or just see how she does on the 1 mg to start with? I just hate to see my baby feeling awful and I wanted to reduce that chance as much as possible. I had to take the pills for my PsA and they about killed me, that's why I did injections with her(which she isn't happy about).

2. The nurse mentioned giving the injections in the legs and arms and she hates both and believe it or not prefers the tummy. Do any of you guys give it in the tummy or heard of giving it that way?

3. Do any of y'all have any experience with Simponi? If so could you maybe give me some feedback on it?

Thanks so much for the help you are always willing to give!

 

[my little penguin]

Mtx is extremely individual
Some kids on here can't tolerate the pills at all regardless of folic acid
Other kids like mine can't tolerate the injectable mtx (he gets sicker than sick even with folic acid )
Pill version he is fine as long as he has folic acid

We started with 1 mg
Ds got mouth ulcers
So they switched him to 2 mg every day including shot day
Most kids are fine at 1 mg
Always better to work your way up

Glad you got a rheumo to help her with antibodies
And her JSpA



We do Ds humira in his stomach as well as his other biologics
But don't think we did mtx there

If you are using the Otrexup™ or Rasuvo™ injection at home:

The medicine comes with a patient information leaflet. Read and follow the instructions carefully. Ask your doctor if you have any questions.
The medicine is given as a shot under your skin, usually on the stomach or thigh.
Use a different body area each time you give yourself a shot. Keep track of where you give each shot to make sure you rotate body areas. This will help prevent skin problems from the injection.
If the medicine in the syringe has changed color, or if you see particles in it, do not use it.
Dosing

The dose of this medicine will be different for different patients. Follow your doctor's orders or the directions on the label. The following information includes only the average doses of this medicine. If your dose is different, do not change it unless your doctor tells you to do so.

The amount of medicine that you take depends on the strength of the medicine. Also, the number of doses you take each day, the time allowed between doses, and the length of time you take the medicine depend on the medical problem for which you are using the medicine.

For injection dosage form (solution):
For psoriasis:
Adults—At first, 10 to 25 milligrams (mg) once per week. Your doctor may adjust your dose as needed. However, the dose is usually not more than 30 mg once per week.
Children—Use and dose must be determined by your doctor.
For rheumatoid arthritis or juvenile arthritis:
Adults—At first, 7.5 milligrams (mg) once per week. Your doctor may adjust your dose as needed.
Children—Dose is based on body size and must be determined by your doctor. The starting dose is 10 milligrams (mg) per square meter (m(2)) of body size once per week. Your doctor may adjust your dose as needed.
Missed Dose

This medicine needs to be given on a fixed schedule. If you miss a dose or forget to use your medicine, call your doctor or pharmacist for instructions.

Storage

Store the medicine in a closed container at room temperature, away from heat, moisture, and direct light. Keep from freezing.

Keep out of the reach of children.

Do not keep outdated medicine or medicine no longer needed.

Ask your healthcare professional how you should dispose of any medicine you do not use.

Put used syringe in a puncture-resistant disposable container.

From
http://www.mayoclinic.org/drugs-sup...te-subcutaneous-route/proper-use/drg-20064776

So apparently stomach is ok

 

[my little penguin]

http://www.healthinfo.org.nz/patientinfo/methotrexate subcut patient GP.pdf

 

[my little penguin]

http://www.rch.org.au/uploadedFiles...otrexate_-_how_to_give_injections_at_home.pdf

 

[ashly825]

She is taking the MTX that I have to fill the syringe myself. I'm assuming it's pretty much the same thing. It looks like the same guidelines that we used for Humira. I understand that it's different for everyone, I just wanted to get a few opinions. I hate these diseases and I stay so worried. Thank you for the links MLP.

 

[Maya142]

My daughter was on Simponi. It worked very well for her IBD!! It worked for her arthritis, but was not enough, so eventually we switched. She did last about a year on it, I think. She has very severe arthritis though, so don't be discouraged by that.

She was on it with Imuran not MTX, but we have done MTX before. We do folic acid every day, including the day of the injection. We started with 1 mg, and later upped to 2 mg daily, when M had side effects (mouth sores, nausea, fatigue).

If it's a low dose, I wouldn't worry too much about side effects. I'd start out with 1 mg and then go up if needed.

With the MTX injections, we did them in the tummy. We were told arms, legs or tummy. My girls preferred doing the shots in their bellies because it hurt least. It is a TINY needle and barely hurts. You can use ice or Buzzy and hopefully she will barely feel it.

My girls did their injections by themselves. They were teenagers at the time - younger one was 13 or 14, and the older one was 16.

My daughters did better on injectable MTX vs. oral MTX. It is pretty individual though - some kids do great on the shots, others on the pills.

I'm glad they are finally putting her on MTX. That should help with building antibodies and reacting to biologics.

At this point, you have gone through all the major drugs except Stelara, so you really want to stick with Simponi as long as possible.

As for the Simponi shot - it's WAY better than the Humira shot. Doesn't burn. My girls say it's the "most painless" biologic ever. They LOVED the shots. We did thighs or belly usually. We got the autoinjectors/pens but also tried the syringes.

Syringes hurt less, but the pens hurt so little and were more convenient, so my girls used those.

Good luck!!

 

[ashly825]

Thanks Maya! Her Simponi is the pen and the MTX I draw from the vial. So the one we're a pro at and the other one I am so nervous about! And I agree, I was actually going to look at another doctor if he had not agreed to the MTX. I don't like her taking it anymore than he does, but, she doesn't have many options left. He keeps saying, "well, we have this and that left." And I'm like, those haven't even been approved yet! And who knows if they'll work! He seems to think that if it's a TNF blocker that it will work, and it may to some extent, though small, but it has been proven that certain autoimmune diseases react to different biologics depending on which formula makeup it is. You can't just grab one and go with it. I am glad to hear that Simponi worked for your kiddo's IBD so I'm hoping it will help my Em as well. Thanks again!

 

[Maya142]

I don't know much about Hidradenitis Suppurativa but I do know that Humira was just approved for it. So hopefully, since Simponi is an anti-TNF it will work too.

The Simponi shots are great - even the autoinjector is not very painful at all. Nothing like Humira. We generally ice before biologic shots, but because it was not really painful, half the time we didn't bother with the ice.

My daughter (who was much older than yours) was able to do the shots herself - very easy with the pen.

We had no issues with Simponi - no side effects or infections or anything like that. If my daughter had less aggressive arthritis that responded better to anti-TNFs, we would have stayed on it!!

It did take a while to kick in - I think a couple months (maybe 2-3). So don't be disheartened if it doesn't work right away.

We also did have to up the dose for my daughter, but that was for her arthritis and not her Crohn's.

Let us know how it goes. Good luck to Em!!

 

[ashly825]

Thank you again Maya.

I'm hoping the Simponi works for everything. Her HS is pretty involved but her Arthritis isn't bad yet(she still has full range of motion in her joints, they are just real sore, stiff and pop a lot). Her Crohn's is considered moderate to severe but right now is in remission due to the Entyvio. Because of that the gi only started her on a regular dose of Simponi. So she didn't have the loading dose, just starts the usual dose of one injection every four weeks and she will have her first dose this coming Friday (she had to get at least one week of MTX in before the first injection). I will keep y'all posted. She had her MTX Thursday night and so far so good. She was just a little tired.

 

[Maya142]

Really hope it kicks in. I hate when they skip loading doses, I feel like it just then takes longer to kick in :ybatty:.

I hope the Simponi will prevent any joint damage and get rid off the inflammation. The stiffness and soreness should get better - it may just take some time. Some kids respond very quickly, and others, like my girls, always take a couple months.

Is she getting 100 mg of Simponi or 50 mg? Generally the dose for IBD is 100 mg, but that's the adult dose and it depends on how much she weighs. My girls were probably between 90-105 lbs when they were on Simponi (younger one was closer to 90 lbs, older one was probably 105 or 100 lbs).

My older daughter got the arthritis dose of 50 mg (started at every 4 weeks, moved to every 3 weeks), my younger one got the IBD dose of 100 mg, and we eventually actually had to up it to 200 mg for her - but she has very aggressive arthritis.

Fingers crossed that it works quickly for ALL her issues.

 

[ashly825]

I'm so sorry to hear about your daughter's arthritis. It just doesn't seem fair that these kids have these awful diseases. My daughter is 5' 2" and weighs 142 lbs so she is on the 100 mg dose every 4 weeks. I hope that this will be enough to keep her in remission and help everything else as well! Thank you so much for the well wishes and helpful advice! It's much appreciated!

 

[Maya142]

Fingers crossed for your girl!

Is your daughter doing physical therapy? That's another thing I wanted to mention that may help with the arthritis pain and stiffness. It's hard to do when they're stiff and sore, but staying active keeps them from losing mobility. It is one of the absolute BEST things she can do with any kind of juvenile arthritis!

My younger daughter does PT twice a week and swims as much as possible. She also has stretching and exercises to do daily.

My older daughter does not do PT anymore, but swims, goes on an elliptical or bikes as much as possible.

When they were younger, they both played soccer, despite the arthritis. Eventually M had to give up the soccer because it's high impact and her joints were just in bad shape.

The exercise will also help with fibromyalgia pain.

 

[my little penguin]

Second exercise
Ds swims daily during the summer
And 3-4 times a week during the rest of the year
He used to swim competively but his endurance was not that of his peers from flares
But the one place his joints feel good is in the water

Good luck

 

[Jenn]

I'm curious about what her "low" dose of MTX is? My son is 5'3" and 113 lbs, and doc wanted 25mg/wk, but his weight is closer to 20mg, and I was so afraid of side effects, I pushed for just 15mg/wk to add to his Humira. Risk is it not doing anything, but we can bump up.

Oddly, the doc prescribed 5mg folic acid the day after the mtx. But said we could do daily, but he preferred one dose/wk and done.

I keep pushing to have him try the tummy shot, more fat there, but he won't go for it.

Hope the combo works for her, good luck!

 

[Maya142]

I think I may have posted on your other thread Jenn - but my older daughter is currently 5'3 and 110 lbs (so almost exactly your son's size) and is on 15 mg of MTX with weekly Humira. That's not considered "low" according to her rheumatologist - low would be 7.5 mg or so.

In the juvenile arthritis world, MTX is a used a LOT more than for IBD and I have seen plenty of younger kids on up to 25 mg. By young, I mean 11-12 year olds...It's almost always done by injection at the dose though.

 

[ashly825]

She isn't in physical therapy, I may look into that. I have been homeschooling her and her sister for the past 4 years and this year they are going back to school and will be trying volley ball. I wish we had a swimming pool because I know she would benefit greatly.

As far as the MTX, she is on 25 mg and I was thinking that I didn't like that high of a dose either. I may call her rheumy tomorrow and discuss this. He only put her on the MTX because her gi refused to deal with it and of course the rheumy deals with it all the time. The rheumy said he thought there MAY be a chance that she had arthritis but because she had full motion in all joints (he did no scans) he didn't diagnose her with it. Again, he put her on it to hopefully clear up some of the HS, help with the joints and prevent antibodies.

 

[my little penguin]

25 mg of mtx is the goal
Ds tried to get to 25 mg of mtx
He just had side effects
So we went down to 17.5 mg
Only because that is the dose that keeps him from side effects
We tried 25 mg by injection
And 20 mg by pills -both made him feel
Horrid
It's very individual

 

[ashly825]

Gotcha. We discovered a mouth sore last night and it's hurting her bad. Any advice?

 

[Maya142]

You can make magic mouthwash - usually it's made with liquid Benadryl and Milk of Magnesia or Maalox (check online). The she rinses her mouth with it and that helps.

You can also ask a doctor to prescribe and then the pharmacy will make it and they usually add a numbing agent. We use the homemade kind when my daughter has mouth sores.

Has she started the MTX? How much folic acid is she getting? We upped the dose from 1 mg daily to 2 mg when my daughters got mouth sores and that helped a lot.

As for MTX, the dose varies widely. Lower doses, like 7.5 mg, are used just for antibodies. If it's being used for her joints, HS and to prevent antibodies, a higher dose makes sense. Usually it's anywhere between 15 and 25 mg. We tried 25 mg first too -- that's usually the goal.

If the side effects at 25 mg are too tough to deal with, then you can always go down. But it's very individual - there are kids who do great on 25 mg.