Re: Methotrexate Questions

[Guest guest]

Hi Sara - I know just what you are feeling. A year ago we started

Grant on the MTX injection. Primarily for his uveitis. I didn't

know how I was going to be able to give him a shot since I hate them

myself. Our rheumy's nurse showed us how to do it and Grant was

even able to practice giving the nurse the injection (of saline).

We both thought it was pretty easy to do and Grant had no problem

giving it to himself. After several weeks his inflammation had gone

down a lot and after a few months it was gone. So it has worked

wonderfully for Grant.

I thought about ending my post there but I feel that you should know

there are negatives too and unfortuneately Grant experienced them.

I wish I had known this before experiencing it first hand. After

about 5 months of the injection Grant gradually couldn't tolerate it

anymore psychologically and we had to switch to the pill form.

Lucky enough for us, that still worked to keep the inflammation

down. But I do believe the injection was necessary to take the

inflammation away, the pills didn't do that.

I would just make sure that Danny takes the folic acid and if he

complains at all about side effects call your rheumy and let them

know. They don't want there to be any side effects and there are

other things they can do. Grant was given an anti nausea medication

but I think that we waited to long to call the rheumy and we were

past that point of the anti nausea working. Grant knew how that

medication made him feel and nothing was going to make that better

in his mind.

Like others said in their post, not all kids experience the side

effects and I hope that Danny is one of them.

Keep us posted as to how it goes!

& Grant (12, PsA/Uveitis)

>

> Hello to all,

> My name is Sara. This is my first post although I have been

> recieving support and encouragment through your e-mails for quite

> some time now. My son,

> Danny who is now 9 was diagnosed with JIA (pauci) in kindergarten

> when he was 6 years old. He has been through alot for his young

age

> as I have seen that your precious loved ones have to. Danny's

> arthritis has mainly affected his lower joints: the knees, ankles,

> hips. He has had his knees drained over and over again, as well

as,

> the steroid shots, and the daily medicine (pill form). His first

> couple steroid shots left him in remission for over a 1yr. at a

> time. But he just had them done again in December and within 8

weeks

> the pain and swelling was back. I don't understand how they were

so

> effective and now aren't. Needless to say his rheumatologist has

made

> the suggestion of starting Dan-Dan ( my nickname for him, he would

> prob. be mad that I devulged that.Hee hee on Methotrexate shots

> and it

> scared me. I was wondering if anyone has had first had experiences

> with this drug ( particularly the shot part) and can tell me a

little

> bit about it. I have done my research online but wanted to hear

about

> it from someone who has taken it. Any advice would be greatly

> appreciated.

>

>

> Sincerely,

> Sara

>

[Guest guest]

Hi Ira,

I would be concerned about a rheumatologist who doesn't require folic acid

supplementation with MTX. The risk for infection with even minor cuts (think

paper cuts) goes up dramatically without the folic acid supplement. Check with

your doctor - s/he might have determined that your multivitamin is enough and

that you don't need additional supplementation.

I was on MTX for four years, and experienced some thinning of my hair, but

nothing dramatic. Boosting my folic acid intake seemed to stop additional hair

loss.

Good luck to you!

Kate P-B

Sent from my Verizon Wireless BlackBerry

[Guest guest]

I've been taking MTX for almost a year. My side effects are dehydration,

fatigue, and a slight mental confusion the day after taking it. Being a guy that

might make a difference but I haven't noticed any hair loss. I was prescribe 1

mg Folic Acid once a day. Still, I take another 400 mcg once a day as a booster,

it's worked for me and my blood test have finally come out very good. Folic Acid

is very inexpensive over the counter. I was also told to take Vitamin D daily.

Recently I've learned to be suspicious when you're Rheumatologist is doesn't

seem to answer your questions or offer and effective aggressive treatment. It is

cause for concern. Hope this helps.

Stan

Seattle, Clouds.

Sent: Wednesday, July 22, 2009 9:32:51 AM GMT -08:00 US/Canada Pacific

Subject: [ ] Methotrexate Questions

Hi All,

I am about to start my fourth week of methotrexate. Working up to 15mgs. I

understand this drug can cause hair loss. Has anyone been on it long term and

have or haven't you experienced any hair loss?

Also, my rheumy didn't say anything about folic acid, but my multivitamin has

800 mcgs. of folic acid in it. Is this enough? If I take more do I need to take

extra B12 with it? (Do you think the rheumy not mentioning folic acid indicates

maybe he is not up to par?)

Best to everyone,

Ira

[Guest guest]

Hi Ira:

I have been on MTX for 6 years. My hair is baby fine to begin with, but

I haven't nocticed any hair loss. Just thinning.

I take Folic Acid in Leucovorin form. 12 hours after I inject my MTX, I

take 2 pills. That is all my Rheumy wants me to take. I guess it

varies what rheumy's prefer.

Hugs,

Barbara

--- In , " irabrightman " <searcher100yy@...>

wrote:

>

> Hi All,

>

> I am about to start my fourth week of methotrexate. Working up to

15mgs. I understand this drug can cause hair loss. Has anyone been on it

long term and have or haven't you experienced any hair loss?

>

> Also, my rheumy didn't say anything about folic acid, but my

multivitamin has 800 mcgs. of folic acid in it. Is this enough? If I

take more do I need to take extra B12 with it? (Do you think the rheumy

not mentioning folic acid indicates maybe he is not up to par?)

>

> Best to everyone,

> Ira

>

[Guest guest]

Hi Ira,

I agree with the other members on your rheumy. I would be finding a new

rheumy. It's very important to have a good relationship with your

rheumy, and you can trust them. With RA, we have to deal with them the

rest of our lives.

You do need extra folic acid, so I would contact the doctor to see how

much you need. I take a multi-vitamin daily, along with mtx. The folic

acid helps stops some of the side effects of the mtx, including hair

loss. I'm surprised you haven't had more problems.

I have been on mtx five years, and I do have hair loss from time to

time, but not too bad. Everyone sheds some hair anyway, it always grows

back. Just make sure you get on the folic acid.

Take care, and good luck,

Tawny

--- In , " irabrightman " <searcher100yy@...>

wrote:

>

> Hi All,

>

> I am about to start my fourth week of methotrexate. Working up to

15mgs. I understand this drug can cause hair loss. Has anyone been on it

long term and have or haven't you experienced any hair loss?

>

> Also, my rheumy didn't say anything about folic acid, but my

multivitamin has 800 mcgs. of folic acid in it. Is this enough? If I

take more do I need to take extra B12 with it? (Do you think the rheumy

not mentioning folic acid indicates maybe he is not up to par?)

>

> Best to everyone,

> Ira

>

[Guest guest]

Hi Ira,

I have been taking Methotrexate about 20 years, 12.5 mg along with 1000

mg of folic acid from the beginning. It was my wonder drug. I had

been on prednnisone, plaquenil and tried all the NSAIDS. When

Methrotrexate was added I began to feel better and was able to eliminate

prednisone and plaquenil. I didn't have a problem with losing hair.

Don't know what I would have done if I had because it helped so much and

at the time I had tried most everything else. It was affecting my

knees, shoulders, hands and just stiff all over. I thought I was wheel

chair bound, but everything improved. In the interium you have to do

thing s to adjust. Move dishes to lower shelf so it doesn't hurt so

bad to reach up. I changed to curly hairdo so I didn't have to shampoo

and blow dry as often. I even changed vechiles to make it easier to

get in and out. I was fortunate because I had an office job. If I had

had a physical demanding job I would have had to change.

That was interesting question you had about the B12 and Folic Acid. I

haven't taken any extra B12 until last year. My family dr started

gave me extra last year. I did start losing some hair last year or

more of a thinning and a satin pillow case helps. Don't know if this

is MTX related or not but if it gets too thin I have wig I can wear. I

have some other things going on and we monitoring those also. Drs

don't want to change my medicine because it has worked so well.

As others had said, it takes awhile to get the right medicine

combination to working for you. It may have been an oversight that the

dr failed to give you folic acid. I would ask about it. It is also

important to get blood work done each month when on MTX. If counts are

off, changes can be made if necessary. I had been taking Tylenol for

headache once and had to go back in for recheck. The Tylenol had raised

by liver counts.

This is great group for support. I just joined a couple of months ago.

Wishing you a short jouney to finding the right meds for you.

-- In , " irabrightman " <searcher100yy@...>

wrote:

> Hi All,

>

> I am about to start my fourth week of methotrexate. Working up to

15mgs. I understand this drug can cause hair loss. Has anyone been on it

long term and have or haven't you experienced any hair loss?

>

> Also, my rheumy didn't say anything about folic acid, but my

multivitamin has 800 mcgs. of folic acid in it. Is this enough? If I

take more do I need to take extra B12 with it? (Do you think the rheumy

not mentioning folic acid indicates maybe he is not up to par?)

>

> Best to everyone,

> Ira

>