headaches and RP + menopause and RP

[Guest guest]

Rita and the group, I was diagnosed a little more than a year ago by

Dr. Trentham, who lucky for me, is in Boston. I am 46 now, but have had

RP symptoms for 20 years. My first symptoms were arthritic, which were

misdiagnosed as rheumatic fever and then later as fibromalgia. My main

problem areas are my knees, hips, ribs and spine. I have only had one

outer ear flare, but have lots of problems with inner ear inflammation

and now have larnygeal and throat flares too. I'm considered a mild

case and don't take prednisone--only voltaren (a NSAID) and colchicine

( a mild T-cell inhibitor, usually prescribed to people with gout.) My

spine involvement makes steroids problematic because they promote

osteoporosis, and the spine is often the first structure to be affected

by osteoporosis. Because I didn't have outer ear flares until late and

have never had nose flares, I had a lot of problems getting diagnosed.

My doctors mostly thought I was nuts for 20 years! I used to have

spells of RP every year or so but for the last few years seemed to have

reached a chronic phase.

The RP seems to affect my back and neck a lot and I get a good deal of

pain in my ribs, both back and front. Since so many people have back

problems, it took a while to connect it up with my RP but every serious

flare I have affects my back and neck as well. My MRI showed that many

of my spinal disks are inflamed and bulging. There is an autoimmune

disease called ankylosing spondylitis, arthritis of the spine, and some

people have both RP and AS.

Rita, has your doctor tested you for blood cell sedimentation rate?

Most people who have vasculitis(inflammation of blood vessels) which

can cause headaches and nerve pain, have a high sed rate. Mine has

always been ridiculously low, even in a flare. Of of the very useful

things I've learned from this group is that RP'ers don't necessarily

have a high sed rate during their flares. Dr. Trentham told me this

too. I once saw a rheumatologist when I was suffering from horrible

joint pain who told me if as long as I had a normal sed rate, nothing

could be wrong with me (... and therefore I was a wack-nut...) However,

high sed rates are much more correlated with vasculitis (although some

small percentage of people do indeed have normal sed rates and have

confirmed vasculitis).

Vasculitis associated with RP can cause kidney problems. I think this

often occurs without any symptoms but some people notice that their pee

is frothy or cloudy. A lab test for protein or blood in the urine can

confirm kidney inflammation. Your kidneys have lots of blood vessels in

order to filter blood impurities into urine and if you have vasculitis,

these blood vessels in your kidneys may be inflammed and damaged. If

you have kidney pain and are concerned about vasculitis, ask your

doctor to run this test. My tests have been negative, both for urine

protein and for sed rate, and in my case, the back pain near my kidneys

has probably been from my ribs. Perhaps someone in the group has had

kidney involvement who can speak to what other symptoms you might have.

I know there are other people from Boston with RP but have only heard

from one other local person through the RP egroup. Since RP is so rare,

it was important for me to hear from other people who have the disease,

in order to get real information on what is going on. I will always be

grateful to this group for helping me through the first months after my

diagnosis.

Now, a question to the ladies in the group... I am heading into

menopause. Does anyone know whether this affects RP, for the better or

worse? Is estogen replacement a no-no for RP'ers? Thanks, Sue L.

> Sue,

> Thank you so much for responding. So many strange

> things are happening. RP is a very puzzling disease.

> So many different symptoms are related to it and yet

> so many are not. Today I have experienced some pain

> in my back around my kidney area. Not bad but

> irritating. Here again, is this RP, strained back,

> kidneys (who knows). Again, thanks for responding.

> How are you doing. How long have you had RP.

>

> I live in Montgomery AL and only know of one other

> person in AL with the disease. Let me hear from you.

> Rita

> >

>

>

> __________________________________________________

>

[Guest guest]

Sue L.,

I have Vasculitis and my sed rate is normal even during a flare.

Same with the RP, my sed rate is always normal.

My Rheumy goes by symptoms to determine a flare, and not the

blood work. Only thing abnormal with my blood counts is a high white cell

count.

Sandy

> Rita and the group, I was diagnosed a little more than a year ago by

> Dr. Trentham, who lucky for me, is in Boston. I am 46 now, but have had

> RP symptoms for 20 years. My first symptoms were arthritic, which were

> misdiagnosed as rheumatic fever and then later as fibromalgia. My main

> problem areas are my knees, hips, ribs and spine. I have only had one

> outer ear flare, but have lots of problems with inner ear inflammation

> and now have larnygeal and throat flares too. I'm considered a mild

> case and don't take prednisone--only voltaren (a NSAID) and colchicine

> ( a mild T-cell inhibitor, usually prescribed to people with gout.) My

> spine involvement makes steroids problematic because they promote

> osteoporosis, and the spine is often the first structure to be affected

> by osteoporosis. Because I didn't have outer ear flares until late and

> have never had nose flares, I had a lot of problems getting diagnosed.

> My doctors mostly thought I was nuts for 20 years! I used to have

> spells of RP every year or so but for the last few years seemed to have

> reached a chronic phase.

>

> The RP seems to affect my back and neck a lot and I get a good deal of

> pain in my ribs, both back and front. Since so many people have back

> problems, it took a while to connect it up with my RP but every serious

> flare I have affects my back and neck as well. My MRI showed that many

> of my spinal disks are inflamed and bulging. There is an autoimmune

> disease called ankylosing spondylitis, arthritis of the spine, and some

> people have both RP and AS.

>

> Rita, has your doctor tested you for blood cell sedimentation rate?

> Most people who have vasculitis(inflammation of blood vessels) which

> can cause headaches and nerve pain, have a high sed rate. Mine has

> always been ridiculously low, even in a flare. Of of the very useful

> things I've learned from this group is that RP'ers don't necessarily

> have a high sed rate during their flares. Dr. Trentham told me this

> too. I once saw a rheumatologist when I was suffering from horrible

> joint pain who told me if as long as I had a normal sed rate, nothing

> could be wrong with me (... and therefore I was a wack-nut...) However,

> high sed rates are much more correlated with vasculitis (although some

> small percentage of people do indeed have normal sed rates and have

> confirmed vasculitis).

>

> Vasculitis associated with RP can cause kidney problems. I think this

> often occurs without any symptoms but some people notice that their pee

> is frothy or cloudy. A lab test for protein or blood in the urine can

> confirm kidney inflammation. Your kidneys have lots of blood vessels in

> order to filter blood impurities into urine and if you have vasculitis,

> these blood vessels in your kidneys may be inflammed and damaged. If

> you have kidney pain and are concerned about vasculitis, ask your

> doctor to run this test. My tests have been negative, both for urine

> protein and for sed rate, and in my case, the back pain near my kidneys

> has probably been from my ribs. Perhaps someone in the group has had

> kidney involvement who can speak to what other symptoms you might have.

>

> I know there are other people from Boston with RP but have only heard

> from one other local person through the RP egroup. Since RP is so rare,

> it was important for me to hear from other people who have the disease,

> in order to get real information on what is going on. I will always be

> grateful to this group for helping me through the first months after my

> diagnosis.

>

> Now, a question to the ladies in the group... I am heading into

> menopause. Does anyone know whether this affects RP, for the better or

> worse? Is estogen replacement a no-no for RP'ers? Thanks, Sue L.

>

>

> > Sue,

> > Thank you so much for responding. So many strange

> > things are happening. RP is a very puzzling disease.

> > So many different symptoms are related to it and yet

> > so many are not. Today I have experienced some pain

> > in my back around my kidney area. Not bad but

> > irritating. Here again, is this RP, strained back,

> > kidneys (who knows). Again, thanks for responding.

> > How are you doing. How long have you had RP.

> >

> > I live in Montgomery AL and only know of one other

> > person in AL with the disease. Let me hear from you.

> > Rita

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

In a message dated 7/11/01 9:45:54 PM Pacific Daylight Time,

lovett@... writes:

<< Is estogen replacement a no-no for RP'ers? Thanks, Sue L.

>>

Sue, my dr said that I need the HRT because I'm on pred and it would help my

bones.

It hasn't seemed to hurt. I just can't seem to keep the estrogen level in my

body even on HRT. No one knows why. Keep changing drugs. LOL Am due for a

hormone test in Aug. will let you know.

I also have had the terrible rib pain, front and back. My sed rate is always

high as is my C reactive protein. Even when I'm not flaring. Go figure.

This is such a strange disease. I tested negative for vasculitis.

Thanks again for your great posts. Please do it more often... I learn so

much every day from all of you.

hugs