Need Some Advice

April 28, 2000

Dear Geri,

Hi! My name is Carole B., 49 years old and diagnosed last Dec. with PA.

I just finished reading your post and truly understand where you are coming

from. My hand usage is everything to me as a Dental Hygienist and I am also

crafty with needlework, handywork, stained glass, etc. I had to stop working

at my profession a year and a half ago due to my back and now my hands. I

have trouble even signing my name..all of the little things that we take for

granted. I do force myself to play the piano for a good hour each day to

keep my fingers moving. My Rheumy wanted to put me on methotrexate too...I

declined at this point in time (read too much and it scared me to death!). I

am only taking Arthrotec 2 times a day...so far so good. I have found that

the psoriasis really blossoms on my hands when stress comes into my

life...which seems to be too often!

I haven't posted lately.....basically absorbing tid bits here and there

and feeling a bit down...but...it could be worse and it might get worse...so

I am thankful for every good day. Take care and be happy!

Keep in touch, Carole

April 29, 2000

Hi! I'm Donna, 54, in Michigan. I took MTX for almost 3 years(pills). It

certainly helped my scaling, but I could not see any differance in my stiffness

and joint pain. I had to have a liver biopsey (sp). It showed everything was

fine, but I really didn't feel good. Just before I stopped taking it I felt my

liver ached all the time. I guess each one of us accepts these drugs

differently. Each of our bodies has this PS and PA, but we don't all handle the

drugs the same.

Right now my PS is driving me nuts...big flare up. I am also having trouble with

my knees, right foot and ankle and my left hand. I am due for a visit to both my

Derm and Rheumy. I have no idea what is coming next.

Some of the people are having great luck with the MTX, so they can tell you

better than I how they feel. Just don't give up trying to do the things that

make you happy, keep a good sense of humor, and do all that your body will allow

you to do.

God Bless...

Donna

April 29, 2000

Geri, I have been taking Methotrexate for 6 years now. I'll admit I'm one of the lucky ones. It really gives some people a hard time. I have no problems at all. I do take 1 mg of folic acid daily for mouth sores. I was 34 when I went on MTX, and within 2 months I was a different person. I believe, that with regular blood work and communication, you and your doctor can monitor the effects of MTX, good or bad. But, I defiantly think you should give it some serious consideration. My Orthopedic Doc told me the other day that the MTX will definitely slow the degeneration in my knees and all my other "old" parts. Good luck with your decision. Becky,

[ ] Need some advice

Hello to everyone,I've been mostly lurking but have come to a crossroads and would like to have the benefit of your experiences and opinions. Hope this isn't too long.I am 46 and have had scalp psoriasis (only!) since a little girl. (My Dad had very bad skin psoriasis and I alwats hoped I wouldn't get it - little did I know I could get something more devastating). Had arthritis aches in my hands since a teenager (but gave up trying to get anyone to pay attention to them). In my early 30's I got psoriasis scaling in all hairy areas, nail psoriasis symtoms and within a couple of years, one knuckle swelled up. No one even mentioned PA (maybe they didn't know), but we got the knuckle down with a shot of cortosone (took a lot of me convincing the doctor to do it, too - back then it was a real no-no).Several years ago I started feeling poorly - thought it was just getting old. I do gardening once a week and take walks 1-2x/week, but also started hand weights (at 10 pounds now). One year ago, the scalp got worse, my nails started shortening and I noticed several swelled and achy joints on my hands. Did a lot of research (thank goodness for the web!!!) and found a dermatologist to confirm PA, then a rhemy to treat it (and found out that I also have knee problems and Fibro).I've been on Glucosamine/Chondroitin since August (dematologist's advice) and Vioxx since October. At first, the Vioxx helped, then improvement stopped after 3 months. Continued taking it and past 2 weeks, we added an additional dose at night - no help.You see where this is going. The last 4 months, my finger joints are getting noticeably worse, stiff and achy. My hands are everything to me. Although a senior engineering manager (and thus appearances are of some concern), I play several musical instruments, knit and do needlework, etc. If I can't do my hobbies, I lose a huge portion of what makes me happy. Have a great husband and family, and now a great job (started 8 weeks ago - and only because of Gillian's EPO advice, which I started taking in January and it restored 75% of my energy, and allowed me to consider taking on some things instead of hiding from them). I know the family and job should be enough, but I have always wanted to do a lot of different activities and need some creative outlets that allow me to make things.My doctor is suggesting Methotrexate, and I am very nervous about taking anything that can give me liver problems, leukemia, etc. On the other hand, The hand mobility must be maintained as long as possible.Thanks for reading this far. I have been so impressed with the strength and assessments I've heard so far in this newsgroup. If you can find a few minutes, please give me some information to help me make this decision.Thankyou in advance!Geri

Please visit our new web page at:http://www.wpunj.edu/icip/paand attend our weekly chat on Dr Koop at7 PM EST on Monday evenings!!Go to the www.Dr.Koop.com website ahead of time and register as a user that way you can come right in on Monday nights. Hope to see you thereat the chat!!!

April 29, 2000

Dear Gillian and friends-

I wanted to pass along that you have been very helpful to me re. EPO. I

saw the rh dr. and asked him about it, predicting that he would poo-poo

it as he as done to the other suggestions I've brought up that are

non-pharmaceutical. He said, " Wait a minute, I have a friend who is

studying that. " He came back with the suggestion to take 1800 mg per

day and said that it was proven to have an anti-inflammatory effect. I

couldn't believe it!!! So now, I am on Enbrel for about 6 weeks, and

doing ok. I also started EPO and hope to soon cut down on my

indomethacin. I notice I don't need it as often as before, probably the

Enbrel is doing its trick. Again, thanx for the info. about EPO as I

had previously been told to take it for " female " issues, not arthritis.

Gillian- I, too, played alot of tennis. I am 44 and had been playing

since I could hold a racket. Losing tennis a few years back was a big

loss for me, and I hope to return to it someday, maybe doubles? My

husband and I enjoyed playing together, and yes, we are both very

competitive. I have difficulty at times, dealing with the many losses

since my diagnosis at age 36, and I do get down at times, but today the

sun is shining, the kids are outside playing, my night classes have

ended for the semester, and life is good TODAY. Keep up your uplifting

emails, do enjoy them, and I have learned alot from you. Take care.

Robin

August 24, 2001

Hi, I am a 25 year old achon man who has older brothers and sisters average

sized. I just wanted to respond to your 3 year old girl's acceptance of your

acon child. She will be so understanding and be willing to go the extra mile

for him, its her brother after all. She'll probably be even more protective of

him when they both reach their school years. When it comes to babysitting, if

she's anything like my older sister, she'll do anything to get out of it to go

hang out with her bf or friends lol. Overall at least your little boy will have

someone by his side growing up, there will be indifferences between them growing

up, thats a given, but for me growing up it was a bleesing to have a older

sister who was average sized. She was always there for me, took me to the

movies, out with her boyfriend, and her friends.

Hope this little memo helps and gives you encouragement.

Best Regards,

---------------------------------

August 24, 2001

Thank you for your message, I hope we can help our daughter to be a good

sister and be there for her brother like your sister.

Does some body know about a book with this topic that can help us.

Re: Need some advice

Hi, I am a 25 year old achon man who has older brothers and sisters

average sized. I just wanted to respond to your 3 year old girl's acceptance

of your acon child. She will be so understanding and be willing to go the

extra mile for him, its her brother after all. She'll probably be even more

protective of him when they both reach their school years. When it comes to

babysitting, if she's anything like my older sister, she'll do anything to

get out of it to go hang out with her bf or friends lol. Overall at least

your little boy will have someone by his side growing up, there will be

indifferences between them growing up, thats a given, but for me growing up

it was a bleesing to have a older sister who was average sized. She was

always there for me, took me to the movies, out with her boyfriend, and her

friends.

Hope this little memo helps and gives you encouragement.

Best Regards,

----------------------------------------------------------------------------

--

August 24, 2001

My advice is to be very open with the both of them. Starting at a very young

age, i find, is always best. She will probably be protective of him in a

sense for awhile. That can be both positive and negative for him b/c, i

feel, that you may want him to grow up being as independent as possible. She

will probably notice other children at school or other areas staring and

making comments towards her brother, which may hurt. My advice for that

situation, is to inform her with knowledge that she can share with those

children. Then hopefully, it will be like a domino effect. Children may

sometimes seem cruel but they are actually very acceptable to " new " things --

which is great! But to get back to what i was saying in the beginning,

allow your daughter to ask questions and definitely seek as much information

for her to check out as possible! Books are great...

- jen juday

In a message dated 8/24/2001 1:32:07 PM Mountain Daylight Time,

sussy_amezcua@... writes:

>

> we are an average size family and we also have a 18 month old baby boy with

> achondroplasia, I will like to ask you how can a teach my 3 year old girl

> about her brother condition, because I will like her to see his brother like

> any other person in the world.

>

August 25, 2001

na

Just started telling your daughter that her brother is a special gift from

God. God made him small and this is called a dwarf! Tell her that he will

always be shorter than her but that he has feelings just like her and all her

friends and family. Just because you are different doesn't mean you don't

feel pain. When explaining about dwarfism be sure you don't dwell on Snow

White and her dwarves. You want to give her a positive attitude about

dwarfism. You need to become involved in LPA. Let her see along with your

family, positive role models in the dwarf community.

This is the perfect time to start your education and fellowship with LPA.

Good luck and look forward to seeing you at a conference.

C.

September 21, 2001

Hi and welcome! What can you expect from

this treatment... Hopefully a better quality of

life, though ...be patient. Getting to the level where

you feel good might be both a struggle and take a

long time. I know because when I was diagnosed in

June, I was told to give the medicines 2 weeks and

everything would get better. Now 3 months after, I've been

through worse times than before being diagnosed, and it's

only now the past month I've seen a tiny light in the

end of the tunnel. Read as much as possible

about the thyroid problems to learn the different

symptom on both hypo and hyper so that you can recognise

them if they should occur. A good place to start is

About.com or on the web pages of Sonja Midtlien. (you'll

have to run them on your search engine because

everytime I try to make a link I fail :-) ...maybe someone

could tell me how to get it right?) Good luck

anyway! smiling_bee

September 21, 2001

Hi April! Some recent studies have shown that

more than a normal TSH may be necessary to feel really

good. I will post the links here soon. I was on

thyroxine (T4) alone for over a year. I was still feeling

very fatigued & puffy, so I recently switched to a

different medicine--Thyrolar- that contains both T4 & T3.

It is too soon for me to feel the difference yet.

The normal human thyroid gland produces T4 & T3 in a

ratio of appx 4:1, so it makes sense to strive for

normalcy in respect to medication. I will post the

appropriate links for you soon. Beware of certain " quacks " on

the internet who will try to sell you diets and

vitamin regimens that do not work. But a healthy diet and

exercise are good for everybody! Take

Care,

September 23, 2001

Hi , Read your post on the your switch using T3 and T4, are you glad

you made the switch. I'm considering asking my doctor to try me on something

other than Synthyroid. Nanny

September 24, 2001

Thanks for diana & smilingbee for the advice and

information. Do you guys change your diet to lose

weight? And also, is it possible for one to conceive while on

the treatment? Any risk? Take care,

everyone...

September 24, 2001

Hi Nanny! Here is the link that got me started on

my quest for T3:

<a href=http://thyroid.about.com/library/weekly/aa021199.htm

target=new>http://thyroid.about.com/library/weekly/aa021199.htm</a> I

encourage you to read about the T3 study. I paid

$10 for the New England Journal full text and printed

a copy for my MD, which he didn't even want. When I

told him I had been feeling very fatigued since

filling my most recent prescription for Synthroid 75mcg,

he switched me to Thyrolar 1, no problem. Thyrolar 1

has 50mcg T4 & 12.5mcg T3. That was 6 days ago. I

think it is too soon for me to know how I am responding

to Thyrolar. I am certainly more alert, yet I sleep

well at night. On Sat morning, however, I was jittery

like a porcupine in a balloon factory; most

unpleasant. This may have been due to other factors-- had a

viral intestinal thing plus I had used an asthma

inhaler in the morning which I usually don't.

Nevertheless I chopped the Thyrolar in half for Sunday am and

skipped the inhaler, and this am (Monday), I took abt 3/4

of a Thyrolar. Unscientific, but oh well. Tomorrow I

will start with the entire pill again. It is possible

that Thyrolar is too heavy on the T3 for me and I may

have to ask for Synthroid 50 mcg and Cytomel(T3) 5mcg.

I am also exercising heavy-duty, swimming, and

trying to eat boring healthy food. Good luck to you and

I will keep you posted on my progress.

September 24, 2001

April, Here is a link about hypothyroidism

and pregnancy:

<a href=http://thyroid.about.com/cs/pregnantfertility/

target=new>http://thyroid.about.com/cs/pregnantfertility/</a> I hope

this info helps. I am sure you

will need to have your thyroid levels monitored

several times during pregnancy and after. I am

working on the weight problem. I did gain around 40 lbs

since becoming hypothyroid. My main strategy is to

increase my exercise! I love to eat and I refuse to starve

myself. Be careful-- if you become pregnant you must

neither diet or exercise excessively. Wait until after

the baby comes.

September 26, 2001

I conceived two children while taking synthroid

and have two very healthy children. They just

monitored my levels more often then every three months .

Good Luck. (have fun trying) Ha Ha Marcy

September 26, 2001

Thanks , I'm printing it off now about the

T3, I'm so glad that it is helping you, thats what I

am hoping for me. Please do keep me posted, my email

address is alsd1@... Did you have problems

getting the docs to give it to you. I've heard they don't

want to give it. Sherrill

February 7, 2002

The ADA does apply to private preschools and childcare centers,

except those run by churches. I sure hope the preschool

tried " everything " including providing a 1:1 aide for the girl before

she was removed. Usually the aide can be funded from the state's

dept. of Develomental Services or Health Services if the child cannot

be at the childcare site without the assistance of a 1:1 aide. See

this link:

http://www.usdoj.gov/crt/ada/childq & a.htm

>

> A 4 year old autistic girl was asked to leave the

> preschool that my three sons are attending. One of

> my sons, who is three is also on the spectrum.

> I thought that it was against the ADA to discriminate

> against a child like this. I know there was a court

> case in Ohio were the parents won and the YMCA aftercare

> program lost. The teachers reassure me that the other

> child " presents " very differently then my son and

> he is not a problem-yet. Do I have a legal leg to stand on

> if they try to kick him out. I guess the girl was

> climbing everywhere-trying to run out-putting herself

> in danger-they say. I still dont thing that its fair-she

> was that that preschool for 2.5 years.

August 22, 2002

ita,

I don't know really what to suggest except for perhaps court mandated intervention. It is a crime for parents not to follow treatment, even for religious reasons people have been taken to court because of lack of treatment for their child. If I remember right you taking on full time care is not an option. I don't know if your daughter would be old enough to follow a medi-set. You put all the pills in it for a week or more depending on how often you can do it and what kind of set you can find. She then would be responsible for taking them at the right time. Perhaps you could call to remind her.

That is a tough one. I just don't understand how her dad and grandparents can just ignore it. Sorry just venting about them on computer here. Your daughter is young to manage this but if she is a mature ten you could discuss with her why she needs to follow the docs advice and try the medi-set. Someone else may have some other ideas.

e, mom to joe, 15, poly

jbelle831 wrote:

Hello all,I need some advice. My daughter, (MK) age 10, was diagnosed in june with jra. The dr was not sure if it was systemic or not. Anyway, my problem is that she has not taken any of her meds for over a week now. She is on 15mg of mtx, folic acid, 250mg naprosen, and 1200mg calcium. She has not been in any pain during this time nor does she have any inflammation. No one would know she had jra. Most of you are probably not aware of our situation. MK lives with her dad and grandparents. They don't push the issue of her taking her meds or doing her PT/OT exercises. They don't realize the seriousness of the disease. Her next rheumy appt is in Oct. She is following the same pattern she has in the past - it seems to me that she is going into remission - but then again I am not the dr.Any suggestions?ita & Kathrn (10, systemic???)

August 22, 2002

ita-

That's a tough problem. The last thing you need when your daughter is doing so well is a setback. You could involve the courts if necessary. Do your husband or the grandparents get involved in doctor's appts? Maybe set up a meeting with them and the doctor to discuss the importance of following the treatment plan? Is your daughter old enough to take the meds herself? It's hard to believe a parent could be that lax about an important health issue. Let us know what happens.

Diane (, 3, pauci)

August 22, 2002

ita,

it's really hard to tell you what do to do, especially when I don't

know about your situation. Somebody here suggested an intervention by

court, but I can't tell you anything about that since our system in

Finland is different from yours. However, I can tell you how we in

our hospital try to help kids who's parents don't seem to be able to

help them enough. This often happens when there's a divorce, the

other parent is the one who takes care of everything (usually this is

the mother, but not always)and the other one seems to think it's just

unnecessary fuss from the ex-wife.

We usually try to have both parents to come to the clinic, and if

they can't bare to be in the same room, we'll have them separately.

Then the doc talks to both and explains the seriousness of this

disease. Another thing is to try to concentrate on the child, help

him/her to help himself. It is, of course, a parents' duty by the law

to take care of the child, but sometimes the only way is to convince

the child that the treatment is for his best. This only works with

bigger kids, naturally. I'm wondering, in your case, what are your

daughters' doctors doing about it? Maybe you should speak to them and

tell them that you're not convinced your daughters' being treated as

she should be?

I hope you'll find a way to help your child. And in the end, have you

considered her living with you? I ask this not knowning a thing about

you and my meaning is not to hurt you in any way, so if this sounds

impolite, I apologize.

Love, Soili

August 22, 2002

ita,

The methotrexate will stay in her system and continue to work for 8 to 12 weeks so you should not see symptoms from missing one dose. I am not sure of the details but if she is fine for one week only, I would not call that remission.

need some advice

Hello all,

I need some advice. My daughter, (MK) age 10, was

diagnosed in june with jra. The dr was not sure if it was systemic or

not. Anyway, my problem is that she has not taken any of her meds

for over a week now. She is on 15mg of mtx, folic acid, 250mg

naprosen, and 1200mg calcium. She has not been in any pain during

this time nor does she have any inflammation. No one would know she

had jra. Most of you are probably not aware of our situation. MK

lives with her dad and grandparents. They don't push the issue of

her taking her meds or doing her PT/OT exercises. They don't realize

the seriousness of the disease. Her next rheumy appt is in Oct. She

is following the same pattern she has in the past - it seems to me

that she is going into remission - but then again I am not the dr.

Any suggestions?

ita & Kathrn (10, systemic???)

August 23, 2002

ita

the only advice i can say is keep the appt with the doctor if she flares and you know about it call the doctor and tell him about the way your X dont give her the meds if you have to certify and registar a typed up letter stating the seriousness of the disease and how important it is for her health to your X keep a copy keep this for your records now she may be ok off the meds but a flare may come up does this she feels good and no problems then it creeps up on us and shes down for awhile if she does good till you see the doctor thats great but when you see him explain the situation to him he also will help with writing a letter putting these kids on and over the meds dont help really you have to wean them off if there a change in meds keep a journal about your daughter and whats going on so you have that to fall back on and make sure you date it Robbin

August 26, 2002

e,

Thanks for the response. Yes, I could go for the court mandated

intervention, but then I would be hurting MK and myself. My ex can

be very vengeful. He would make it so I couldn't see the kids - he

can be hateful. Not only that, I don't want to put the kids through

any more than they all ready have been. My ex would put the kids in

the middle and that isn't fair to them, so I just let things go as

they are - as far as custody, etc. is concerned.

Yes, MK is a mature 10 year old. At least she has been the one

taking the initiative to take her meds. Her dad says it all is

coming from her nerves, and that it's all my fault. I look at him

like he's crazy. I talk to her every night about taking her meds.

She is feeling much better, but I fear that the pain will be back. I

try to explain this to her. I think she understands. Now she is

telling me that the meds are making her sick. I ask if she is eating

when she takes them and she says yes. It is so hard. I hate to see

her going through all this. Right now she is on 15mg mtx - so that

is 6 small pills at one time. On top of that is 1 pill a day of

folic acid, 3 tabs a day of calcium (tums) and 2 pills a day of

naprosen. Since she is not hurting, I would be soo happy if she

would at least take the mtx and folic acid. I try to explain this to

her, but I fear that with her in the household of no support I feel

as if I'm talking to a brick wall.

Thanks for listening.

ita & (10 systemic??)

>

> ita,

>

> I don't know really what to suggest except for perhaps court

mandated intervention. It is a crime for parents not to follow

treatment, even for religious reasons people have been taken to court

because of lack of treatment for their child. If I remember right you

taking on full time care is not an option. I don't know if your

daughter would be old enough to follow a medi-set. You put all the

pills in it for a week or more depending on how often you can do it

and what kind of set you can find. She then would be responsible for

taking them at the right time. Perhaps you could call to remind her.

>

> That is a tough one. I just don't understand how her dad and

grandparents can just ignore it. Sorry just venting about them on

computer here. Your daughter is young to manage this but if she is a

mature ten you could discuss with her why she needs to follow the

docs advice and try the medi-set. Someone else may have some other

ideas.

>

> e, mom to joe, 15, poly

>

August 27, 2002

Hi ita:

Oral pills of mtx do very often make the child feel very nauseated and fatigued the next day. It would be very hard for your daughter to endure this if she gets no support from her dad and grandparents. We noticed a huge difference, nearly no side effects - once we switched to the injected mtx. I guess that's probably not doable for MK. I used to give Mickey some gravol about a half hour before I gave her the mtx pills. It helped a little. Maybe the time release version of it?

Its really difficult, the circumstances you and MK are in with this. I really feel for you.

Lynn

From: " jbelle831 " <jbelle831@...>

Reply-

Date: Tue, 27 Aug 2002 02:00:28 -0000

Subject: Re: need some advice