New to group and to polychondritis

[Guest guest]

Margaret, I'm so glad that you found this group too... You will see that we

are a wonderful support system... It helps with our mental outlook

tremendously.... We will also give you a lot of laughs, which are really

important...

You are so young and with moving and your children, there has to be alot of

stress. I think we all feel the stress makes the Rp worse...

I think all of us on pred are overweight.... I know I sure am..LOl When I

was on metho my dr pres. folic acid for me... 1 mg a day... It did make the

side effects less and I did feel better when taking it.. I'm not sure about

the overdosing on it.... Someone else in the group might know... I was told

to be careful using B vitamins because they do boost our immune system and we

don't want to do that... We want to suppress it...

I think most people see a Rheumy.... An ENT diagnosed me... but a

knowlegable Rheumy is probably the best... I know we need alot of

specialist... I see an opthomologist twice a year to keep a check on my eyes,

an ENT once a year and my cardiologist... Some people need a pulmonologist

also... Everyone is different with this disease...You will see that we are

all affected in different ways and use different meds...

Where do you live right now... Maybe someone is in your area...

I live in Calif, am 49, married and have 3 daughters and a grandaughter..

Please feel free to ask all the questions you want... Just jump right in...

Can't wait to get to know you better.

hugs

[Guest guest]

Margaret, I'm so glad that you found this group too... You will see that we

are a wonderful support system... It helps with our mental outlook

tremendously.... We will also give you a lot of laughs, which are really

important...

You are so young and with moving and your children, there has to be alot of

stress. I think we all feel the stress makes the Rp worse...

I think all of us on pred are overweight.... I know I sure am..LOl When I

was on metho my dr pres. folic acid for me... 1 mg a day... It did make the

side effects less and I did feel better when taking it.. I'm not sure about

the overdosing on it.... Someone else in the group might know... I was told

to be careful using B vitamins because they do boost our immune system and we

don't want to do that... We want to suppress it...

I think most people see a Rheumy.... An ENT diagnosed me... but a

knowlegable Rheumy is probably the best... I know we need alot of

specialist... I see an opthomologist twice a year to keep a check on my eyes,

an ENT once a year and my cardiologist... Some people need a pulmonologist

also... Everyone is different with this disease...You will see that we are

all affected in different ways and use different meds...

Where do you live right now... Maybe someone is in your area...

I live in Calif, am 49, married and have 3 daughters and a grandaughter..

Please feel free to ask all the questions you want... Just jump right in...

Can't wait to get to know you better.

hugs

[Guest guest]

Hi, I am new to this group, and so glad that I found it. I was

diagnosed with relapsing polychondritis about 3 months ago, but after

careful review have found that I have had symptoms for over 10 years--

since I was 18. In addition, I was diagnosed with fibromyalgia. I am

not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo.

I don't have any support from family, and because my husband is in

the military, am new to an area and have no friends, no support

system at all.

I did notice in some past posts that other people on this list also

have low body temps. I also have this...my normal is 96.8, and again,

no one pays any attention when I have 98.anything and I say that is a

fever for me.

Currently, I am on prednisone and methotrexate...in addition to

muscle relaxers and pain killers and anti-anxiety meds. My

polychondritis flares up when I get upset, and my body aches all

over. I have had difficulty breathing, and still do whenever I lay

down. I am also overweight, which complicates the whole thing.

Anyway, that is a long intro about me....I do have a question about

folic acid....has anyone else been prescribed this with methotrexate?

I worry that I will OD on it--I was prescribed 1 mg once a day, but

also take a multivitamin with it, and the B-150 vitamins which also

have it. I have heard that it can deplete the B-12 vitamins and leave

you with neurological problems. Also, is a rheumatologist the best

doctor to see for this disease, or is there another type of physician

who specializes in it? And are there alternative therapies?

I am so thankful for this group!!

Margaret

[Guest guest]

Hi, I am new to this group, and so glad that I found it. I was

diagnosed with relapsing polychondritis about 3 months ago, but after

careful review have found that I have had symptoms for over 10 years--

since I was 18. In addition, I was diagnosed with fibromyalgia. I am

not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo.

I don't have any support from family, and because my husband is in

the military, am new to an area and have no friends, no support

system at all.

I did notice in some past posts that other people on this list also

have low body temps. I also have this...my normal is 96.8, and again,

no one pays any attention when I have 98.anything and I say that is a

fever for me.

Currently, I am on prednisone and methotrexate...in addition to

muscle relaxers and pain killers and anti-anxiety meds. My

polychondritis flares up when I get upset, and my body aches all

over. I have had difficulty breathing, and still do whenever I lay

down. I am also overweight, which complicates the whole thing.

Anyway, that is a long intro about me....I do have a question about

folic acid....has anyone else been prescribed this with methotrexate?

I worry that I will OD on it--I was prescribed 1 mg once a day, but

also take a multivitamin with it, and the B-150 vitamins which also

have it. I have heard that it can deplete the B-12 vitamins and leave

you with neurological problems. Also, is a rheumatologist the best

doctor to see for this disease, or is there another type of physician

who specializes in it? And are there alternative therapies?

I am so thankful for this group!!

Margaret

[Guest guest]

Hi Margaret,

So glad you found our group.

I also had RP for at least ten years before being DX.

I also have Fibromyalgia.

I took 1 mg of Folic Acid when I was on Methotrexate. It prevented me from getting mouth sores.

Who is treating you for the RP.?

I see a Rheumatologist, Pulmonologist, ENT and my PCP.

Feel free to ask questions, I know its hard to deal with at times.

When you need support we are here for you.

Hugs,

Sandy

Hi, I am new to this group, and so glad that I found it. I was diagnosed with relapsing polychondritis about 3 months ago, but after careful review have found that I have had symptoms for over 10 years--since I was 18. In addition, I was diagnosed with fibromyalgia. I am not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo. I don't have any support from family, and because my husband is in the military, am new to an area and have no friends, no support system at all.I am so thankful for this group!!MargaretDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Hi Margaret,

So glad you found our group.

I also had RP for at least ten years before being DX.

I also have Fibromyalgia.

I took 1 mg of Folic Acid when I was on Methotrexate. It prevented me from getting mouth sores.

Who is treating you for the RP.?

I see a Rheumatologist, Pulmonologist, ENT and my PCP.

Feel free to ask questions, I know its hard to deal with at times.

When you need support we are here for you.

Hugs,

Sandy

Hi, I am new to this group, and so glad that I found it. I was diagnosed with relapsing polychondritis about 3 months ago, but after careful review have found that I have had symptoms for over 10 years--since I was 18. In addition, I was diagnosed with fibromyalgia. I am not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo. I don't have any support from family, and because my husband is in the military, am new to an area and have no friends, no support system at all.I am so thankful for this group!!MargaretDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

degrays@... wrote:

>

> Hi, I am new to this group, and so glad that I found it. I was

> diagnosed with relapsing polychondritis about 3 months ago, but after

> careful review have found that I have had symptoms for over 10 years--

> since I was 18. In addition, I was diagnosed with fibromyalgia. I am

> not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo.

> I don't have any support from family, and because my husband is in

> the military, am new to an area and have no friends, no support

> system at all.

>

> I did notice in some past posts that other people on this list also

> have low body temps. I also have this...my normal is 96.8, and again,

> no one pays any attention when I have 98.anything and I say that is a

> fever for me.

>

> Currently, I am on prednisone and methotrexate...in addition to

> muscle relaxers and pain killers and anti-anxiety meds. My

> polychondritis flares up when I get upset, and my body aches all

> over. I have had difficulty breathing, and still do whenever I lay

> down. I am also overweight, which complicates the whole thing.

>

> Anyway, that is a long intro about me....I do have a question about

> folic acid....has anyone else been prescribed this with methotrexate?

> I worry that I will OD on it--I was prescribed 1 mg once a day, but

> also take a multivitamin with it, and the B-150 vitamins which also

> have it. I have heard that it can deplete the B-12 vitamins and leave

> you with neurological problems. Also, is a rheumatologist the best

> doctor to see for this disease, or is there another type of physician

> who specializes in it? And are there alternative therapies?

>

> I am so thankful for this group!!

>

> Margaret

>

Dear Margaret - I have been on methotrexate for a long time and have

always taken folic acid. I take two tabs a day - one in the AM and one

in the PM. It is not something that you can OD on - so start taking it

- It also helped me with the nausea on the methotrexate. I used to

vomit the 24 hours after taking it but now I just have nausea, and of

course a splitting headache. But it only lasts for a day and then I have

6 really good days!!! Hang in there and let us help with questions -

most of us have been through alot already - but hey - we are a tough

bunch and we can bounce back - Barbara from SD

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU

>

>

[Guest guest]

degrays@... wrote:

>

> Hi, I am new to this group, and so glad that I found it. I was

> diagnosed with relapsing polychondritis about 3 months ago, but after

> careful review have found that I have had symptoms for over 10 years--

> since I was 18. In addition, I was diagnosed with fibromyalgia. I am

> not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo.

> I don't have any support from family, and because my husband is in

> the military, am new to an area and have no friends, no support

> system at all.

>

> I did notice in some past posts that other people on this list also

> have low body temps. I also have this...my normal is 96.8, and again,

> no one pays any attention when I have 98.anything and I say that is a

> fever for me.

>

> Currently, I am on prednisone and methotrexate...in addition to

> muscle relaxers and pain killers and anti-anxiety meds. My

> polychondritis flares up when I get upset, and my body aches all

> over. I have had difficulty breathing, and still do whenever I lay

> down. I am also overweight, which complicates the whole thing.

>

> Anyway, that is a long intro about me....I do have a question about

> folic acid....has anyone else been prescribed this with methotrexate?

> I worry that I will OD on it--I was prescribed 1 mg once a day, but

> also take a multivitamin with it, and the B-150 vitamins which also

> have it. I have heard that it can deplete the B-12 vitamins and leave

> you with neurological problems. Also, is a rheumatologist the best

> doctor to see for this disease, or is there another type of physician

> who specializes in it? And are there alternative therapies?

>

> I am so thankful for this group!!

>

> Margaret

>

Dear Margaret - I have been on methotrexate for a long time and have

always taken folic acid. I take two tabs a day - one in the AM and one

in the PM. It is not something that you can OD on - so start taking it

- It also helped me with the nausea on the methotrexate. I used to

vomit the 24 hours after taking it but now I just have nausea, and of

course a splitting headache. But it only lasts for a day and then I have

6 really good days!!! Hang in there and let us help with questions -

most of us have been through alot already - but hey - we are a tough

bunch and we can bounce back - Barbara from SD

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Margaret, I know I'm late but welcome to the group. I have only been dx. for

a couple of months. My Rheumy is still trying to find out how much damage

has been done, since I have had this for quite a few years. You have found

the best bunch of people. Ask them anything someone will reply. I am a

mother of 3 and a grandmother of 4. We live in Ohio. Ann

Re: New to group and to polychondritis

degrays@... wrote:

>

> Hi, I am new to this group, and so glad that I found it. I was

> diagnosed with relapsing polychondritis about 3 months ago, but after

> careful review have found that I have had symptoms for over 10 years--

> since I was 18. In addition, I was diagnosed with fibromyalgia. I am

> not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo.

> I don't have any support from family, and because my husband is in

> the military, am new to an area and have no friends, no support

> system at all.

>

> I did notice in some past posts that other people on this list also

> have low body temps. I also have this...my normal is 96.8, and again,

> no one pays any attention when I have 98.anything and I say that is a

> fever for me.

>

> Currently, I am on prednisone and methotrexate...in addition to

> muscle relaxers and pain killers and anti-anxiety meds. My

> polychondritis flares up when I get upset, and my body aches all

> over. I have had difficulty breathing, and still do whenever I lay

> down. I am also overweight, which complicates the whole thing.

>

> Anyway, that is a long intro about me....I do have a question about

> folic acid....has anyone else been prescribed this with methotrexate?

> I worry that I will OD on it--I was prescribed 1 mg once a day, but

> also take a multivitamin with it, and the B-150 vitamins which also

> have it. I have heard that it can deplete the B-12 vitamins and leave

> you with neurological problems. Also, is a rheumatologist the best

> doctor to see for this disease, or is there another type of physician

> who specializes in it? And are there alternative therapies?

>

> I am so thankful for this group!!

>

> Margaret

>

Dear Margaret - I have been on methotrexate for a long time and have

always taken folic acid. I take two tabs a day - one in the AM and one

in the PM. It is not something that you can OD on - so start taking it

- It also helped me with the nausea on the methotrexate. I used to

vomit the 24 hours after taking it but now I just have nausea, and of

course a splitting headache. But it only lasts for a day and then I have

6 really good days!!! Hang in there and let us help with questions -

most of us have been through alot already - but hey - we are a tough

bunch and we can bounce back - Barbara from SD

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

Margaret, I know I'm late but welcome to the group. I have only been dx. for

a couple of months. My Rheumy is still trying to find out how much damage

has been done, since I have had this for quite a few years. You have found

the best bunch of people. Ask them anything someone will reply. I am a

mother of 3 and a grandmother of 4. We live in Ohio. Ann

Re: New to group and to polychondritis

degrays@... wrote:

>

> Hi, I am new to this group, and so glad that I found it. I was

> diagnosed with relapsing polychondritis about 3 months ago, but after

> careful review have found that I have had symptoms for over 10 years--

> since I was 18. In addition, I was diagnosed with fibromyalgia. I am

> not doing so well coping. I have 4 small children 10, 8, 6 and 15 mo.

> I don't have any support from family, and because my husband is in

> the military, am new to an area and have no friends, no support

> system at all.

>

> I did notice in some past posts that other people on this list also

> have low body temps. I also have this...my normal is 96.8, and again,

> no one pays any attention when I have 98.anything and I say that is a

> fever for me.

>

> Currently, I am on prednisone and methotrexate...in addition to

> muscle relaxers and pain killers and anti-anxiety meds. My

> polychondritis flares up when I get upset, and my body aches all

> over. I have had difficulty breathing, and still do whenever I lay

> down. I am also overweight, which complicates the whole thing.

>

> Anyway, that is a long intro about me....I do have a question about

> folic acid....has anyone else been prescribed this with methotrexate?

> I worry that I will OD on it--I was prescribed 1 mg once a day, but

> also take a multivitamin with it, and the B-150 vitamins which also

> have it. I have heard that it can deplete the B-12 vitamins and leave

> you with neurological problems. Also, is a rheumatologist the best

> doctor to see for this disease, or is there another type of physician

> who specializes in it? And are there alternative therapies?

>

> I am so thankful for this group!!

>

> Margaret

>

Dear Margaret - I have been on methotrexate for a long time and have

always taken folic acid. I take two tabs a day - one in the AM and one

in the PM. It is not something that you can OD on - so start taking it

- It also helped me with the nausea on the methotrexate. I used to

vomit the 24 hours after taking it but now I just have nausea, and of

course a splitting headache. But it only lasts for a day and then I have

6 really good days!!! Hang in there and let us help with questions -

most of us have been through alot already - but hey - we are a tough

bunch and we can bounce back - Barbara from SD

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

>

[Guest guest]

In a message dated 09/19/2001 4:37:33 PM Central Daylight Time,

degrays@... writes:

<< Currently, I am on prednisone and methotrexate...in addition to >>

Margaret, HI! My name is Judy Ostry and I was Dx with RP a little over a

year ago. I take metho (20mgs) and pred (down to 3 mg) and folic acid (1 mg)

all prescriped by my rheumy.. I also take a multi-vitamin daily. The doctors

have all agreed that I take these, and I'm not having any problems with any

of them. I also take Leukovoran once a week to properly oxgenate my blood?

Not sure I understand that one! But it's working. I'm sure you will get

other answers from the others, I seem to remember a huge " discussion " about

vitamins last year. The best answer you'll get is from a Rheumy, but you

need to find a Rheumy who knows about RP. Which is not always so easy to do!

Just remember the RP Foundation can provide a lot of information about RP to

your doctor if he doesn't know about RP. Your Rheumy will be in charge of

dealing with your RP, so try to find a good one. If fact, if you can let

someone know where you are located, maybe someone knows a good Rheumy in your

area. This group is an incredble resource for information and support, so

please feel free to use us. I feel the best place to get support is from

those who know the disease, and wo knows more than those who have the

disease! Try us, antytime. Love, Judy

[Guest guest]

In a message dated 09/19/2001 4:37:33 PM Central Daylight Time,

degrays@... writes:

<< Currently, I am on prednisone and methotrexate...in addition to >>

Margaret, HI! My name is Judy Ostry and I was Dx with RP a little over a

year ago. I take metho (20mgs) and pred (down to 3 mg) and folic acid (1 mg)

all prescriped by my rheumy.. I also take a multi-vitamin daily. The doctors

have all agreed that I take these, and I'm not having any problems with any

of them. I also take Leukovoran once a week to properly oxgenate my blood?

Not sure I understand that one! But it's working. I'm sure you will get

other answers from the others, I seem to remember a huge " discussion " about

vitamins last year. The best answer you'll get is from a Rheumy, but you

need to find a Rheumy who knows about RP. Which is not always so easy to do!

Just remember the RP Foundation can provide a lot of information about RP to

your doctor if he doesn't know about RP. Your Rheumy will be in charge of

dealing with your RP, so try to find a good one. If fact, if you can let

someone know where you are located, maybe someone knows a good Rheumy in your

area. This group is an incredble resource for information and support, so

please feel free to use us. I feel the best place to get support is from

those who know the disease, and wo knows more than those who have the

disease! Try us, antytime. Love, Judy