Re.Please Help, I Have Questions!

August 24, 2000

Hi Everyone.

I have a few questions. It sounds like this group is pretty well

upto date on RP. I am doing okay on the meds that I am on but want

to know about a few things. I have been trusting my doctor on alot

of stuff. When Dr. B retired I learned that you can't always trust

your Dr. I feel really stupid because I don't know that much about

RP except for what it has done to me. I have tried looking up info.

in medical ditionaries and the doctor gave me info. when I first was

diagnosed, but have not found much on the subject. I have learned

alot more from this group in the last week than I have in the 7yrs I

have had RP. Please understand where I am coming from and help me

out.

1. Folic Acid - I was told that it wasn't necessary. I took 2mg

daily for several years. I was taking it for the sores in my mouth

and nose. I don't get the sores in my mouth now, but have continual

sores in nose. I am not currently taking Folic Acid. Does Folic Acid

do anything for this or is there something else I could use.

2. Bumps on skin - Does anyone get these. How to explain this one.

My doctor told me that it was caused from being in the sun. I am not

a sun person as I don't tan I burn and peel always have. These bumps

come up, like on the palm of hand, between fingers, wrists, and or

arms. They are very sperodic. Sometimes they itch. Other times I

don't know I have them. Are they from meds or could it be the RP?

3. Redness on neck and chest - My skin on my neck and chest has a

redness to it. It looks like the small veins have broken or are near

to the surface. Is this caused by the predisone or is this where the

RP has attacked?

4. Imuran - I take 100 mg of Imuran a day. I have a problem with

forgetting to take my pills when I am suppose to. My husband calls

it CRS.(cant remember .....) When I have forgotten a dose or two my

ears get warm or in the other areas that RP has attacked. My doctor

told me that I couldn't get that sensation because Imuran doesn't

work that way.

5. I hear others say they are in remission. I don't think I am

remission but I have not had a major flare for sometime. I have what

you might call small flares. I haven't had a flare in my ears for

awhile but get them in my nose, wrist, ribs-chest area, etc. Is this

normal. As if RP is normal. I also saw where someone said or I read

somewhere that you should take predisone when you are having a flare

due to less damage being done.

I don't know whether I sound like a total idiot but these questions

are bothering me. I was told that no question is stupid, but right

now I feel pretty stupid. Like I said I was letting my Dr. handle

it. Please help me out and then I can talk to my new rhuemy Dr. when

I see him again. I go every 3 mon. unless I have problems in between.

Thanks for your help and understanding. I'm sure I will come up with

more questions but this is enough for now. Sorry for such a long

post.

Glenda

August 24, 2000

Hi Glenda

You are right, no question is stupid... I'm waiting for the answer to number

1 myself.... LOL

but for now I'll try number 2 'bumps on skin', , for $200....LOL.. )

My sister often gets little blister-like bumps on her fingers and hands...

The dermatologist told my sis it's due to stress and perhaps hyperacidity...

anyway, he gave her a cream for it and they went away... did you see a

dermatologist for the bumps?

love ya

Carmela

***************

>1. Folic Acid - I was told that it wasn't necessary. I took 2mg

>daily for several years. I was taking it for the sores in my mouth

>and nose. I don't get the sores in my mouth now, but have continual

>sores in nose. I am not currently taking Folic Acid. Does Folic Acid

>do anything for this or is there something else I could use.

>

>2. Bumps on skin - Does anyone get these. How to explain this one.

>My doctor told me that it was caused from being in the sun. I am not

>a sun person as I don't tan I burn and peel always have. These bumps

>come up, like on the palm of hand, between fingers, wrists, and or

>arms. They are very sperodic. Sometimes they itch. Other times I

>don't know I have them. Are they from meds or could it be the RP?

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August 24, 2000

Hello, Glenda - I also get redness in my neck and

chest area, but I am not sure what it is due to, so as

it doesn't seem to get worse I have decided not to

worry about it! I used to for get meds, now I put

them in an organiser (you know, monday tuesda, etc am,

midday, supper, bedtime. I put them in a week at a

time. then if I do forget, I know I have forgotten!!

This has helped me get into a routine.

Both the rheumatologists I see (one in Saudi Arabia

and one in California) say it is a good idea to take

folic acid with methotrexate, as it minimises side

effects such as nausea and upset stomachs. When

methotrexate is used as an anti cancer drug they do

not give folic acid as they want to interfere with

folic acid process.

Prednisone beard - I have naturally blond facial hair,

so I just trim it short with scissors which seems to

work for me. People who have dark hair could maybe

bleach and trim? I get skin reactions to creams and

sugar and wax, etc. I forget who was asking that!!

Back to Glenda - I have continual sores in my nose,

including a septal perforation, which is getting

bigger. The rheumy and ent said it is caused by RP.

I use a product called Little Noses which is a saline

gel which helps keep it soft, and saline nasal spray,

again which helps reduce the frequent bleeding and

crusting (sorry to be gross!!)

Anyway, hope this is of some help, take care, Love Liz

--- Glenda McClennen wrote:

> Hi Everyone.

> I have a few questions. It sounds like this group

> is pretty well

> upto date on RP. I am doing okay on the meds that I

> am on but want

> to know about a few things. I have been trusting my

> doctor on alot

> of stuff. When Dr. B retired I learned that you

> can't always trust

> your Dr. I feel really stupid because I don't know

> that much about

> RP except for what it has done to me. I have tried

> looking up info.

> in medical ditionaries and the doctor gave me info.

> when I first was

> diagnosed, but have not found much on the subject.

> I have learned

> alot more from this group in the last week than I

> have in the 7yrs I

> have had RP. Please understand where I am coming

> from and help me

> out.

>

> 1. Folic Acid - I was told that it wasn't necessary.

> I took 2mg

> daily for several years. I was taking it for the

> sores in my mouth

> and nose. I don't get the sores in my mouth now,

> but have continual

> sores in nose. I am not currently taking Folic Acid.

> Does Folic Acid

> do anything for this or is there something else I

> could use.

>

> 2. Bumps on skin - Does anyone get these. How to

> explain this one.

> My doctor told me that it was caused from being in

> the sun. I am not

> a sun person as I don't tan I burn and peel always

> have. These bumps

> come up, like on the palm of hand, between fingers,

> wrists, and or

> arms. They are very sperodic. Sometimes they itch.

> Other times I

> don't know I have them. Are they from meds or could

> it be the RP?

>

> 3. Redness on neck and chest - My skin on my neck

> and chest has a

> redness to it. It looks like the small veins have

> broken or are near

> to the surface. Is this caused by the predisone or

> is this where the

> RP has attacked?

>

> 4. Imuran - I take 100 mg of Imuran a day. I have a

> problem with

> forgetting to take my pills when I am suppose to.

> My husband calls

> it CRS.(cant remember .....) When I have forgotten a

> dose or two my

> ears get warm or in the other areas that RP has

> attacked. My doctor

> told me that I couldn't get that sensation because

> Imuran doesn't

> work that way.

>

> 5. I hear others say they are in remission. I don't

> think I am

> remission but I have not had a major flare for

> sometime. I have what

> you might call small flares. I haven't had a flare

> in my ears for

> awhile but get them in my nose, wrist, ribs-chest

> area, etc. Is this

> normal. As if RP is normal. I also saw where

> someone said or I read

> somewhere that you should take predisone when you

> are having a flare

> due to less damage being done.

>

> I don't know whether I sound like a total idiot but

> these questions

> are bothering me. I was told that no question is

> stupid, but right

> now I feel pretty stupid. Like I said I was letting

> my Dr. handle

> it. Please help me out and then I can talk to my

> new rhuemy Dr. when

> I see him again. I go every 3 mon. unless I have

> problems in between.

>

> Thanks for your help and understanding. I'm sure I

> will come up with

> more questions but this is enough for now. Sorry

> for such a long

> post.

>

> Glenda

>

__________________________________________________

August 24, 2000

Liz,

Thanks for the advice. It may sound odd but I am glad to know that I am not

totally crazy. To read that others have the same problems and for them to

understand is almost more than I can comprehend. I would never wish the

suffering and pain of this crappy RP on anyone else but it is such a comfort

to know there are others. Well enough of that I have tears in my eyes.

To ask a Dr. somethings that he doesn't understand or know sure can be

frustrating!!!

Thanks for the tip on the little nose stuff do you get it at a pharmacy or

do you make it up yourself? I would try anything. Like you say it's

continual and I get nose bleeds that never end sometimes.

Thank You!

Glenda

Lots of Luv

On Thu, 24 Aug 2000 13:10:14 -0700 (PDT), Rpolychondritisegroups wrote:

> Hello, Glenda - I also get redness in my neck and

> chest area, but I am not sure what it is due to, so as

> it doesn't seem to get worse I have decided not to

> worry about it! I used to for get meds, now I put

> them in an organiser (you know, monday tuesda, etc am,

> midday, supper, bedtime. I put them in a week at a

> time. then if I do forget, I know I have forgotten!!

> This has helped me get into a routine.

>

> Both the rheumatologists I see (one in Saudi Arabia

> and one in California) say it is a good idea to take

> folic acid with methotrexate, as it minimises side

> effects such as nausea and upset stomachs. When

> methotrexate is used as an anti cancer drug they do

> not give folic acid as they want to interfere with

> folic acid process.

>

> Prednisone beard - I have naturally blond facial hair,

> so I just trim it short with scissors which seems to

> work for me. People who have dark hair could maybe

> bleach and trim? I get skin reactions to creams and

> sugar and wax, etc. I forget who was asking that!!

>

> Back to Glenda - I have continual sores in my nose,

> including a septal perforation, which is getting

> bigger. The rheumy and ent said it is caused by RP.

> I use a product called Little Noses which is a saline

> gel which helps keep it soft, and saline nasal spray,

> again which helps reduce the frequent bleeding and

> crusting (sorry to be gross!!)

>

> Anyway, hope this is of some help, take care, Love Liz

>

> --- Glenda McClennen wrote:

> > Hi Everyone.

> > I have a few questions. It sounds like this group

> > is pretty well

> > upto date on RP. I am doing okay on the meds that I

> > am on but want

> > to know about a few things. I have been trusting my

> > doctor on alot

> > of stuff. When Dr. B retired I learned that you

> > can't always trust

> > your Dr. I feel really stupid because I don't know

> > that much about

> > RP except for what it has done to me. I have tried

> > looking up info.

> > in medical ditionaries and the doctor gave me info.

> > when I first was

> > diagnosed, but have not found much on the subject.

> > I have learned

> > alot more from this group in the last week than I

> > have in the 7yrs I

> > have had RP. Please understand where I am coming

> > from and help me

> > out.

> >

> > 1. Folic Acid - I was told that it wasn't necessary.

> > I took 2mg

> > daily for several years. I was taking it for the

> > sores in my mouth

> > and nose. I don't get the sores in my mouth now,

> > but have continual

> > sores in nose. I am not currently taking Folic Acid.

> > Does Folic Acid

> > do anything for this or is there something else I

> > could use.

> >

> > 2. Bumps on skin - Does anyone get these. How to

> > explain this one.

> > My doctor told me that it was caused from being in

> > the sun. I am not

> > a sun person as I don't tan I burn and peel always

> > have. These bumps

> > come up, like on the palm of hand, between fingers,

> > wrists, and or

> > arms. They are very sperodic. Sometimes they itch.

> > Other times I

> > don't know I have them. Are they from meds or could

> > it be the RP?

> >

> > 3. Redness on neck and chest - My skin on my neck

> > and chest has a

> > redness to it. It looks like the small veins have

> > broken or are near

> > to the surface. Is this caused by the predisone or

> > is this where the

> > RP has attacked?

> >

> > 4. Imuran - I take 100 mg of Imuran a day. I have a

> > problem with

> > forgetting to take my pills when I am suppose to.

> > My husband calls

> > it CRS.(cant remember .....) When I have forgotten a

> > dose or two my

> > ears get warm or in the other areas that RP has

> > attacked. My doctor

> > told me that I couldn't get that sensation because

> > Imuran doesn't

> > work that way.

> >

> > 5. I hear others say they are in remission. I don't

> > think I am

> > remission but I have not had a major flare for

> > sometime. I have what

> > you might call small flares. I haven't had a flare

> > in my ears for

> > awhile but get them in my nose, wrist, ribs-chest

> > area, etc. Is this

> > normal. As if RP is normal. I also saw where

> > someone said or I read

> > somewhere that you should take predisone when you

> > are having a flare

> > due to less damage being done.

> >

> > I don't know whether I sound like a total idiot but

> > these questions

> > are bothering me. I was told that no question is

> > stupid, but right

> > now I feel pretty stupid. Like I said I was letting

> > my Dr. handle

> > it. Please help me out and then I can talk to my

> > new rhuemy Dr. when

> > I see him again. I go every 3 mon. unless I have

> > problems in between.

> >

> > Thanks for your help and understanding. I'm sure I

> > will come up with

> > more questions but this is enough for now. Sorry

> > for such a long

> > post.

> >

> > Glenda

> >

>

> __________________________________________________

>

August 25, 2000

Sandy,

Sounds like our Dr.'s came from the same school. Maybe you were tanning

your arm pits and didn't know it.LOL Shame on me I have to joke about this

kind of stuff because if I didn't I'd be crying all the time. I hope you

don't take it wrong. No the bumps don't go away. They seem to get bigger,

but not so big that anyone else notices. When I first started getting them I

thought they were like a sliver and tryed to get the sliver out and there

was nothing in it. Does that make sense. Not really I'm sure because when

I read it, it doesn't make sense. It's kind of scary knowing that Dr.'s are

very well informed about our RP.

Thanks for your input it helps!

Glenda

Luvs you

On Thu, 24 Aug 2000 22:18:03 -0400, Rpolychondritisegroups wrote:

> Glenda,

>

> I also get the bumps on my skin. Do yours go away? I have

> them on the back of my hands, my knees and ankles and under my arms. My

> Rheumy also said he thought they were caused by sun damage although that

> does not explain the ones under my arms. Mine are permanent as I have had

> them for about 10 years. I had one biopsied when I first got them but

> the dermatologist said the pathologist could not tell her what

> they were, only that they were not malignant.

> I also get the redness on my neck and chest, I read that it is a side

effect

> from Pred.

>

> Hugs,

> Sandy

> Re.Please Help, I Have Questions!

>

> > Hi Everyone.

> > I have a few questions. It sounds like this group is pretty well

> > upto date on RP. I am doing okay on the meds that I am on but want

> > to know about a few things. I have been trusting my doctor on alot

> > of stuff. When Dr. B retired I learned that you can't always trust

> > your Dr. I feel really stupid because I don't know that much about

> > RP except for what it has done to me. I have tried looking up info.

> > in medical ditionaries and the doctor gave me info. when I first was

> > diagnosed, but have not found much on the subject. I have learned

> > alot more from this group in the last week than I have in the 7yrs I

> > have had RP. Please understand where I am coming from and help me

> > out.

> >

> > 1. Folic Acid - I was told that it wasn't necessary. I took 2mg

> > daily for several years. I was taking it for the sores in my mouth

> > and nose. I don't get the sores in my mouth now, but have continual

> > sores in nose. I am not currently taking Folic Acid. Does Folic Acid

> > do anything for this or is there something else I could use.

> >

> > 2. Bumps on skin - Does anyone get these. How to explain this one.

> > My doctor told me that it was caused from being in the sun. I am not

> > a sun person as I don't tan I burn and peel always have. These bumps

> > come up, like on the palm of hand, between fingers, wrists, and or

> > arms. They are very sperodic. Sometimes they itch. Other times I

> > don't know I have them. Are they from meds or could it be the RP?

> >

> > 3. Redness on neck and chest - My skin on my neck and chest has a

> > redness to it. It looks like the small veins have broken or are near

> > to the surface. Is this caused by the predisone or is this where the

> > RP has attacked?

> >

> > 4. Imuran - I take 100 mg of Imuran a day. I have a problem with

> > forgetting to take my pills when I am suppose to. My husband calls

> > it CRS.(cant remember .....) When I have forgotten a dose or two my

> > ears get warm or in the other areas that RP has attacked. My doctor

> > told me that I couldn't get that sensation because Imuran doesn't

> > work that way.

> >

> > 5. I hear others say they are in remission. I don't think I am

> > remission but I have not had a major flare for sometime. I have what

> > you might call small flares. I haven't had a flare in my ears for

> > awhile but get them in my nose, wrist, ribs-chest area, etc. Is this

> > normal. As if RP is normal. I also saw where someone said or I read

> > somewhere that you should take predisone when you are having a flare

> > due to less damage being done.

> >

> > I don't know whether I sound like a total idiot but these questions

> > are bothering me. I was told that no question is stupid, but right

> > now I feel pretty stupid. Like I said I was letting my Dr. handle

> > it. Please help me out and then I can talk to my new rhuemy Dr. when

> > I see him again. I go every 3 mon. unless I have problems in between.

> >

> > Thanks for your help and understanding. I'm sure I will come up with

> > more questions but this is enough for now. Sorry for such a long

> > post.

> >

> > Glenda

> >

> > 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

> >

>

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August 25, 2000

Hi Glenda,

I get little bumps on my palms, hands and in between fingers. Have done

since I was a teenager. I was told it was nerves. Mine itch, do yours? Don't

know if its RP related though.

Elaine