First visit to rheumy

[Guest guest]

Methotrexate can have some major side effects but it does deplete the folic acid so the doctor should put on folic acid daily as well. If he doesn't mention it then you bring it up. I know this is alot to swallow but it will get better and believe it or not it's much better to have your diagnosis. Then you can look forward, to treatment and possible remission.It will be elusive but not impossible. Hang in there tina and use this e group as if we were family , because we are! :):)Bless you all :):)Tree:):) First visit to Rheumy Hi to all,I took for his first visit to the Rheumy today. We werethere most of the afternoon. He was very nice, and gave us his cardwith the number and said we could call anytime with questions. Helooked at s hands first. First thing he said is that he hashad JRA for quite some time. He said he has some deformity startingin his fingers. Also said one finger is to short. Then he continuedto examine him. I wont bore all of u with the details, to put itshort and (not so) sweet, he says he has it in his feet, toes,ankles, right knee, both wrists, fingers and his back. We will knowmore when the x-rays are read. They are not for sure but they thinkit is polyarticular JRA. Said it could be Juvenile Ankylosingspondylitis too, but wont know until the blood work and x-rays comeback. But its one of the two. He said needs to be treatedaggressivly with meds but that we have to start with naprosyn. Butsays on his next visit (April 15th) he will most likly start him onmethotrexate. He also mentioned that he has some fusing starting inhis ankles already. Can some one please tell me what to expect withthis methotrexate?? Will this help stop him from getting worse??Thanks in advance, I am sorry if I rambled, I am just so upset todaywith all this that I cant even think straight.ThanksTina (mom of 7yr old )

[Guest guest]

Hi, Tina. My son has had the spondylitis added to his diagnosis too.

He now takes methotrexate and is doing quite well. He responded very quickly

to it which is possible. It is good they are being aggressive if he already

shows possible fusion. Hopefully your son will respond well. In the research

I have done it seems boys seem to get this disease more frequently than

girls. They will check his blood for the HBLA 27 factor. My son does not

have it, but 80% of people with anklyosing spondilitis do. was

diagnosed based on his symptoms. Good luck and educate yourself as best as

possible. There is a website which might help just in case,

www.spondylitis.org. Michele

First visit to Rheumy

Hi to all,

I took for his first visit to the Rheumy today. We were

there most of the afternoon. He was very nice, and gave us his card

with the number and said we could call anytime with questions. He

looked at s hands first. First thing he said is that he has

had JRA for quite some time. He said he has some deformity starting

in his fingers. Also said one finger is to short. Then he continued

to examine him. I wont bore all of u with the details, to put it

short and (not so) sweet, he says he has it in his feet, toes,

ankles, right knee, both wrists, fingers and his back. We will know

more when the x-rays are read. They are not for sure but they think

it is polyarticular JRA. Said it could be Juvenile Ankylosing

spondylitis too, but wont know until the blood work and x-rays come

back. But its one of the two. He said needs to be treated

aggressivly with meds but that we have to start with naprosyn. But

says on his next visit (April 15th) he will most likly start him on

methotrexate. He also mentioned that he has some fusing starting in

his ankles already. Can some one please tell me what to expect with

this methotrexate?? Will this help stop him from getting worse??

Thanks in advance, I am sorry if I rambled, I am just so upset today

with all this that I cant even think straight.

Thanks

Tina (mom of 7yr old )

[Guest guest]

Dear Tina,

Your dr. seems to be right on track. Most drs. start out with NSAIDS

(naprosyn, ibuprofen etc..) then add stronger meds as needed. The

methotrexate is an immunosuppressive drug that will help to stop the

immune response in the jra (the immune system goes " haywire " and attacks

the joints etc..) Sometimes it may be necessary to change or add meds to

see what combo will work--all this takes time and the waiting for

results is hard. will also have to have continous labs done

while on the meds and due to his deformities will probably have to do

some therapy. Also sometimes these kids have to wear handsplints, leg

casts etc.. to help a joint.

I know it's all extremely overwhelming right now. We dealt with a

similiar experience when Kate was dx. at 3. She already had contractures

(deformities) of the knees, wrists, fingers and one leg was shorter. She

wears removable leg casts and hand splints at night and along with

aggressive therapies (plus meds) is " straightening out " , so to speak.

It's taken us longer as she has another type of problem with her hips.

I think my biggest problem when Kate was first dx. was thinking they'll

give her some meds and it will be fine. I didn't have this group or

anyone to talk to who would tell me that it takes a LOT of patience and

trial and error. Just remember though--for every struggle there will

always be a victory, no matter how small. Good Luck and keep us posted.

and Kate--7 (severe poly and AVN)

[Guest guest]

Hi Tina,

I'm so sorry to hear that has so many joints

involved. My daughter has about nine joints affected.

is on methotrexate (7.5mg.) She started this

in Jan. and I think it's just starting to kick in.

She is on prednisone to take care of the inflammation

for now and we are trying to taper her off of that.

Methotrexate is suppose to be a great drug that's been

around for a long time, so they know a lot about it's

effects, including long term. It does take quite

awhile for it to work. is also on Naprosyn

which didn't work at first. Hopefully will

respond quickly to the naprosyn and methotrexate, if

not there are other drugs to make him comfortable

until these kick in. Take care Tina, Kim and

(3 Poly)

--- jramom2002 <jramom2002@...> wrote:> Hi to

all,

>

> I took for his first visit to the Rheumy

> today. We were

> there most of the afternoon. He was very nice, and

> gave us his card

> with the number and said we could call anytime with

> questions. He

> looked at s hands first. First thing he said

> is that he has

> had JRA for quite some time. He said he has some

> deformity starting

> in his fingers. Also said one finger is to short.

> Then he continued

> to examine him. I wont bore all of u with the

> details, to put it

> short and (not so) sweet, he says he has it in his

> feet, toes,

> ankles, right knee, both wrists, fingers and his

> back. We will know

> more when the x-rays are read. They are not for

> sure but they think

> it is polyarticular JRA. Said it could be Juvenile

> Ankylosing

> spondylitis too, but wont know until the blood work

> and x-rays come

> back. But its one of the two. He said

> needs to be treated

> aggressivly with meds but that we have to start with

> naprosyn. But

> says on his next visit (April 15th) he will most

> likly start him on

> methotrexate. He also mentioned that he has some

> fusing starting in

> his ankles already. Can some one please tell me

> what to expect with

> this methotrexate?? Will this help stop him from

> getting worse??

> Thanks in advance, I am sorry if I rambled, I am

> just so upset today

> with all this that I cant even think straight.

>

> Thanks

>

> Tina (mom of 7yr old )

>

>

__________________________________________________

[Guest guest]

Hi Rusty! My daughter really identifies with your assesment of the AS. She too sleeps better without the benefit of a pillow. She also is very sensitive to light. I thought she was a bit daft in the head but you really put that beast aside! Have a sunny day!

Carol

Re: First visit to Rheumy

Hello Tina & ,

Old Rusty Limbs here! I my self have just started a treatment of MTX for my jra/ ankylosing spondylitis, as well as several other forms of Arthritis that likes to take residency in the body. Not to sure about side affects, except what has been posted on this group.

But I can expand on the A.S.

The one thing I would due, if I could do over is, stick to the exercises that the doctor told me to do. And stop sleeping with a pillow under my head. do a lot more swimming for the full body no impact work out.

My right hand and feet were affected first, the pinky finger on the left hand is not more than 2"in length. The right hand, all the fingers are affected.

The thing about my arthritis is the doctor doesn't have to determine which of my joints are involved, because all of my joints are! Even though I've done my best not to let it take over and stop me from doing the things I enjoy. Just do them a bit slower than before.

Has had any eye involvement? inflamation or sensitively to light.

has in his favor, the availability of a great more drugs for the treatment of jra today.

Well for now best wishes, good thoughts and lots of prayers for young and his family.

ye ole Rusty of the Limbs

On Tue, 19 Mar 2002 06:04:32 -0000 "jramom2002" <jramom2002@...> writes:

Hi to all,I took for his first visit to the Rheumy today. We were there most of the afternoon. He was very nice, and gave us his card with the number and said we could call anytime with questions. He looked at s hands first. First thing he said is that he has had JRA for quite some time. He said he has some deformity starting in his fingers. Also said one finger is to short. Then he continued to examine him. I wont bore all of u with the details, to put it short and (not so) sweet, he says he has it in his feet, toes, ankles, right knee, both wrists, fingers and his back. We will know more when the x-rays are read. They are not for sure but they think it is polyarticular JRA. Said it could be Juvenile Ankylosing spondylitis too, but wont know until the blood work and x-rays come back. But its one of the two. He said needs to be treated aggressivly with meds but that we have to start with naprosyn. But says on his next visit (April 15th) he will most likly start him on methotrexate. He also mentioned that he has some fusing starting in his ankles already. Can some one please tell me what to expect with this methotrexate?? Will this help stop him from getting worse?? Thanks in advance, I am sorry if I rambled, I am just so upset today with all this that I cant even think straight.ThanksTina (mom of 7yr old )

[Guest guest]

Hello Tina & ,

Old Rusty Limbs here! I my self have just started a treatment of MTX for my jra/ ankylosing spondylitis, as well as several other forms of Arthritis that likes to take residency in the body. Not to sure about side affects, except what has been posted on this group.

But I can expand on the A.S.

The one thing I would due, if I could do over is, stick to the exercises that the doctor told me to do. And stop sleeping with a pillow under my head. do a lot more swimming for the full body no impact work out.

My right hand and feet were affected first, the pinky finger on the left hand is not more than 2"in length. The right hand, all the fingers are affected.

The thing about my arthritis is the doctor doesn't have to determine which of my joints are involved, because all of my joints are! Even though I've done my best not to let it take over and stop me from doing the things I enjoy. Just do them a bit slower than before.

Has had any eye involvement? inflamation or sensitively to light.

has in his favor, the availability of a great more drugs for the treatment of jra today.

Well for now best wishes, good thoughts and lots of prayers for young and his family.

ye ole Rusty of the Limbs

On Tue, 19 Mar 2002 06:04:32 -0000 "jramom2002" <jramom2002@...> writes:

Hi to all,I took for his first visit to the Rheumy today. We were there most of the afternoon. He was very nice, and gave us his card with the number and said we could call anytime with questions. He looked at s hands first. First thing he said is that he has had JRA for quite some time. He said he has some deformity starting in his fingers. Also said one finger is to short. Then he continued to examine him. I wont bore all of u with the details, to put it short and (not so) sweet, he says he has it in his feet, toes, ankles, right knee, both wrists, fingers and his back. We will know more when the x-rays are read. They are not for sure but they think it is polyarticular JRA. Said it could be Juvenile Ankylosing spondylitis too, but wont know until the blood work and x-rays come back. But its one of the two. He said needs to be treated aggressivly with meds but that we have to start with naprosyn. But says on his next visit (April 15th) he will most likly start him on methotrexate. He also mentioned that he has some fusing starting in his ankles already. Can some one please tell me what to expect with this methotrexate?? Will this help stop him from getting worse?? Thanks in advance, I am sorry if I rambled, I am just so upset today with all this that I cant even think straight.ThanksTina (mom of 7yr old )

[Guest guest]

Dear Tina,the MTX like the other DMARDS take a while to work.s doctor

does not even look for it to start working for 3 months.When it does it takes

another 8 weeks to reach maximum benefits.Each child responds differantly to

differant meds,for some all they need is MTX and others need something

else,some cant take MTX at all and some dont respond at all.They will

probably start him out very low then gradually raise it every month or

two.Hang in there,it is very frustraiting not being able to get a quick fix.

Becki and 3 systemic

jramom2002 wrote:

> Hi to all,

>

> I took for his first visit to the Rheumy today. We were

> there most of the afternoon. He was very nice, and gave us his card

> with the number and said we could call anytime with questions. He

> looked at s hands first. First thing he said is that he has

> had JRA for quite some time. He said he has some deformity starting

> in his fingers. Also said one finger is to short. Then he continued

> to examine him. I wont bore all of u with the details, to put it

> short and (not so) sweet, he says he has it in his feet, toes,

> ankles, right knee, both wrists, fingers and his back. We will know

> more when the x-rays are read. They are not for sure but they think

> it is polyarticular JRA. Said it could be Juvenile Ankylosing

> spondylitis too, but wont know until the blood work and x-rays come

> back. But its one of the two. He said needs to be treated

> aggressivly with meds but that we have to start with naprosyn. But

> says on his next visit (April 15th) he will most likly start him on

> methotrexate. He also mentioned that he has some fusing starting in

> his ankles already. Can some one please tell me what to expect with

> this methotrexate?? Will this help stop him from getting worse??

> Thanks in advance, I am sorry if I rambled, I am just so upset today

> with all this that I cant even think straight.

>

> Thanks

>

> Tina (mom of 7yr old )

>

>

>

>

>

[Guest guest]

Hi Carol and Jenniter, glad to help in any way. People used to call me crazy when I would wear sun glasses on a cloudy day, but they didn't realize how much the light would hurt my eyes some days worse than others. And the winter months are the worst, especially when snow is on the ground.

Love the sunny days! with dark glasses on.

Rusty

On Tue, 19 Mar 2002 20:25:37 -0500 "Carol Shroyer" <car54ol@...> writes:

Hi Rusty! My daughter really identifies with your assesment of the AS. She too sleeps better without the benefit of a pillow. She also is very sensitive to light. I thought she was a bit daft in the head but you really put that beast aside! Have a sunny day!

Carol

Re: First visit to Rheumy

Hello Tina & ,

Old Rusty Limbs here! I my self have just started a treatment of MTX for my jra/ ankylosing spondylitis, as well as several other forms of Arthritis that likes to take residency in the body. Not to sure about side affects, except what has been posted on this group.

But I can expand on the A.S.

The one thing I would due, if I could do over is, stick to the exercises that the doctor told me to do. And stop sleeping with a pillow under my head. do a lot more swimming for the full body no impact work out.

My right hand and feet were affected first, the pinky finger on the left hand is not more than 2"in length. The right hand, all the fingers are affected.

The thing about my arthritis is the doctor doesn't have to determine which of my joints are involved, because all of my joints are! Even though I've done my best not to let it take over and stop me from doing the things I enjoy. Just do them a bit slower than before.

Has had any eye involvement? inflamation or sensitively to light.

has in his favor, the availability of a great more drugs for the treatment of jra today.

Well for now best wishes, good thoughts and lots of prayers for young and his family.

ye ole Rusty of the Limbs

On Tue, 19 Mar 2002 06:04:32 -0000 "jramom2002" <jramom2002@...> writes:

Hi to all,I took for his first visit to the Rheumy today. We were there most of the afternoon. He was very nice, and gave us his card with the number and said we could call anytime with questions. He looked at s hands first. First thing he said is that he has had JRA for quite some time. He said he has some deformity starting in his fingers. Also said one finger is to short. Then he continued to examine him. I wont bore all of u with the details, to put it short and (not so) sweet, he says he has it in his feet, toes, ankles, right knee, both wrists, fingers and his back. We will know more when the x-rays are read. They are not for sure but they think it is polyarticular JRA. Said it could be Juvenile Ankylosing spondylitis too, but wont know until the blood work and x-rays come back. But its one of the two. He said needs to be treated aggressivly with meds but that we have to start with naprosyn. But says on his next visit (April 15th) he will most likly start him on methotrexate. He also mentioned that he has some fusing starting in his ankles already. Can some one please tell me what to expect with this methotrexate?? Will this help stop him from getting worse?? Thanks in advance, I am sorry if I rambled, I am just so upset today with all this that I cant even think straight.ThanksTina (mom of 7yr old )

[Guest guest]

Tina

just let whats on your mind and any questions please ask

MTX is one i dont know anything really about theres alot on here that does

know

they can better explain that one

remember to get copies of labs and you can also get a copy of the xrays to

keep at home this helped me to view them and see for myself what is going on

and understand it better

i have found that reading as much as you can helps alot and asking questions

go to the library and check on books this will help with your child also

gives you time at the library along with the child and enhances the reading

in the child just for you if you want let the child do a report on JRA and

how it affects him or her this will also help you see how the child sees it

and feels about it

did a short report

Robbin

[Guest guest]

Rusty

ok you have my curious mind going now

yall mentioned eye sensitive does have this another piece of the

puzzle

is it just the JRA?

we dont keep the house full of light because of this low wattage light

and she will wear the shades i just thought it was the fade going around

she has mentioned that light does hurt her eyes

Robbin

[Guest guest]

Robbin~ gets bothered by bright stores like Target on some days. She also wears contacts and this seems to enhance the problem. By the way, has retracted her request for a "chat room for kids" since this "Candyman" story broke. Hope everyone has sunny day! Carol

Re: First visit to Rheumy

Rusty ok you have my curious mind going now yall mentioned eye sensitive does have this another piece of the puzzle is it just the JRA? we dont keep the house full of light because of this low wattage lightand she will wear the shades i just thought it was the fade going around she has mentioned that light does hurt her eyesRobbin

[Guest guest]

Rusty

I do remember when was 4 maybe 5 she had a eye infection pink eye i

believe they called it something else though

got over that and it wasnt long she needed glasses but they just

tell me

its myopea with severe stigmatism and sensitive to light also

it never dawned on me that it would be in with this JRA my mom had bad eyes

but didnt wear glasses and all of my sisters wear glasses along with my son

Robbin

[Guest guest]

Robin, In the beginning there was light and when there was light, I was freed of fright!

No I first had eye sensitively, Iritis and Uvelitis that came on before my first major attack of arthritis. That was when I was diagnosed. Although in the past 2yrs I have also been told that I have R.P. which affects the light sensory nerves in the retna's. Because of this condition, it prohibits me from obtaining a drivers license. The cones and rods are also pretty well shot in the eyes.

The Retinal specialist says that my R.P. is a genetic condition and that I've probably had it all my life, just never was affected by it until the onset of jra. Of course I also developed cataracts, an added bonus don't you know......

But I feel and still feel that those were caused by the Cortisone that the doctors first put me on at 13.

And the gold injections didn't help either, while on gold the blood count went down, my weight dropped to under 90lbs. and for a person who stood 5'4" that was to lite. I've always done better between 120 and 140lbs.

I've since learn , from the A.S. site that the ankylosing spondylitis is and may also be the primary cause of the Uvi., and Iritis as it does affect the eyes.

Rusty Limbs

On Wed, 20 Mar 2002 08:51:14 EST Robbin40@... writes:

Rusty ok you have my curious mind going now yall mentioned eye sensitive does have this another piece of the puzzle is it just the JRA? we dont keep the house full of light because of this low wattage lightand she will wear the shades i just thought it was the fade going around she has mentioned that light does hurt her eyesRobbin

[Guest guest]

Robin, does see a, optom or does she see an opthomologist?

As for stigmatism, the doctor once gave me a prescription for glasses where I had a stigmatism. well he was wrong and I could barely see with those glasses.

Pink eye is what the doctor thought I had at first.

As for glasses, I didn't get those until I had cataract surgery.

Even so with all the problems I've had due to my visual loss, I still mange to get around.

Rusty (blinking in the light)

On Wed, 20 Mar 2002 15:32:43 EST Robbin40@... writes:

RustyI do remember when was 4 maybe 5 she had a eye infection pink eye i believe they called it something else though got over that and it wasnt long she needed glasses but they just tell me its myopea with severe stigmatism and sensitive to light also it never dawned on me that it would be in with this JRA my mom had bad eyes but didnt wear glasses and all of my sisters wear glasses along with my son Robbin

[Guest guest]

Rusty

sees a optimologist the one for diseases of the eyes

Robbin

[Guest guest]

Carol

wears glasses i dont think she can handle contacts yet lolol

she does carry sun glasses just in case

Robbin

[Guest guest]

Hi all!

I went to a rheumy yesterday for the first time. He told me a few

things, including the fact that my diagnosis of Polymyalgia a year ago

was incorrect, that it really is RA. He ordered one more test to

confirm, a brand new blood test. I can't remember what he called it.

I had to give several vials of blood, and had 15 xrays taken. I think

I should be glowing!

He wants me to return next month to discuss everything. I am

currently on prednisone and plaquenil, and he's talking about starting

Methotrexate. I'm scared spitless. He also recommended taking two

Tylenol Arthritis every 8 hours.

Because I have diabetes and kidney disease, I always worry about what

all these medications are doing to me.

Anyone have any advice? Do you belong to support groups, and if so,

do they help?

Thanks!

Lost Leanne

[Guest guest]

Hi Leanne - I've been going through a lot of the same feelings lately

myself. I've been on Methotrexate for a month now and not sure what

you're Rheumy's methods are but mine started me out on a smaller dose

to get established for a few weeks so she could then run blood tests

to see if there was any issues being caused with my liver and kidneys.

Particularly with diabetes and kidney disease, it's certainly wise of

you to ask your rheumy as to their feelings regarding the risks versus

the rewards. Also as a diabetic I'm sure you get it with regard to

just the need to take a med in order to function and RA like diabetes

can and will be progressive if not kept in check. You just have a bit

more complication involved.

If you don't get that warm fuzzy feeling with the answers you get from

your Rheumy then I would ask the same questions of your endo doc or

whomever is helping you manage your diabetes.

Best of luck and let us know how things go. I'll keep you in my prayers.

Bob

>

> Hi all!

>

> I went to a rheumy yesterday for the first time. He told me a few

> things, including the fact that my diagnosis of Polymyalgia a year ago

> was incorrect, that it really is RA. He ordered one more test to

> confirm, a brand new blood test. I can't remember what he called it.

>

> I had to give several vials of blood, and had 15 xrays taken. I think

> I should be glowing!

>

> He wants me to return next month to discuss everything. I am

> currently on prednisone and plaquenil, and he's talking about starting

> Methotrexate. I'm scared spitless. He also recommended taking two

> Tylenol Arthritis every 8 hours.

>

> Because I have diabetes and kidney disease, I always worry about what

> all these medications are doing to me.

>

> Anyone have any advice? Do you belong to support groups, and if so,

> do they help?

>

> Thanks!

>

> Lost Leanne

>

[Guest guest]

Lenanne,

I was thinking 2 Tylenol every 8 hours might be hard on the liver.

Not that there are perfect meds for any of us but you might want to

ask because methotrextate can also increase liver enzymes

Take care,

> >

> > Hi all!

> >

> > I went to a rheumy yesterday for the first time. He told me a few

> > things, including the fact that my diagnosis of Polymyalgia a year ago

> > was incorrect, that it really is RA. He ordered one more test to

> > confirm, a brand new blood test. I can't remember what he called it.

> >

> > I had to give several vials of blood, and had 15 xrays taken. I think

> > I should be glowing!

> >

> > He wants me to return next month to discuss everything. I am

> > currently on prednisone and plaquenil, and he's talking about starting

> > Methotrexate. I'm scared spitless. He also recommended taking two

> > Tylenol Arthritis every 8 hours.

> >

> > Because I have diabetes and kidney disease, I always worry about what

> > all these medications are doing to me.

> >

> > Anyone have any advice? Do you belong to support groups, and if so,

> > do they help?

> >

> > Thanks!

> >

> > Lost Leanne

> >

>