Newbie here, Question about Iron Overload Syndrome

[Guest guest]

I was diagnosed with RA in May this year and started on Plaquenal

(sp?). Not only did my already thin hair fall out by the handfull but

it made me feel worse physically. I'm not sure if it was the

Plaquenal or the increase in the Aleve that made my joints feel

better. My RA is primarily in my hands (wrists & fingers) and feet

(toes). I'm early in the disease thankfully! It was only discovered

because I had bilateral carpal tunnel release surgeries 2 years ago

that made the symptoms worse. MRI's along with blood work confirmed my

DX. I believe I've had RA for 10 years possibly longer. I also have

Raynauds pretty severely year round. I just attributed the various

symptoms to job related (repetative motion), where I live (New

England) or aging (I'm 47).

My question is about Iron Overload Syndrome. Is anyone familiar with

it? I had several different labs that have been positive. My rheumy

has stopped the Plaquenal and referred my to a hepatologist. That

appointment isn't until the end of October. After lurking and reading

so many posts I'm worried that I should be on something to stop the

progression of RA. Is a double dose of over-the-counter Aleve twice a

day enough to do anything? I thought I read something that stated

that the RA can be a sympton of Iron Overload therefor one the IOS is

treated the RA could be stopped. I just don't have the strength in my

wrist to search the internet.

Confused is an understatement! The more I read the more confused I

feel about the entire disease.

[Guest guest]

My father and a friend both have Hemochromatosis. It can be quite

serious. My friend required a liver transplant. My father had some

liver damage.. but he has developed MLS ( mylecytic leukemia

syndrome ?? unrelated to the iron overload)and the treatment for that

has actually depleted his high iron stores.. so it is a non issue for

him now.

You should have a liver biopsy for the Iron overload I would think.

If you are still mensturating that has probably helped to keep your

iron overload somewhat in check.. if you have not been mensturating

there may be more of a concern iron has done damage to your organs.

Good luck to you.

>

> I was diagnosed with RA in May this year and started on Plaquenal

> (sp?). Not only did my already thin hair fall out by the handfull

but

> it made me feel worse physically. I'm not sure if it was the

> Plaquenal or the increase in the Aleve that made my joints feel

> better. My RA is primarily in my hands (wrists & fingers) and feet

> (toes). I'm early in the disease thankfully! It was only

discovered

> because I had bilateral carpal tunnel release surgeries 2 years ago

> that made the symptoms worse. MRI's along with blood work confirmed

my

> DX. I believe I've had RA for 10 years possibly longer. I also

have

> Raynauds pretty severely year round. I just attributed the various

> symptoms to job related (repetative motion), where I live (New

> England) or aging (I'm 47).

> My question is about Iron Overload Syndrome. Is anyone familiar

with

> it? I had several different labs that have been positive. My

rheumy

> has stopped the Plaquenal and referred my to a hepatologist. That

> appointment isn't until the end of October. After lurking and

reading

> so many posts I'm worried that I should be on something to stop the

> progression of RA. Is a double dose of over-the-counter Aleve

twice a

> day enough to do anything? I thought I read something that stated

> that the RA can be a sympton of Iron Overload therefor one the IOS

is

> treated the RA could be stopped. I just don't have the strength in

my

> wrist to search the internet.

> Confused is an understatement! The more I read the more confused I

> feel about the entire disease.

>

[Guest guest]

Faith, Thank you for your reply. Just as I thought this isn't something to

be taken lightly. Funny thing about doctors.......... And getting

appointments......... It took me 4 months to finally see the Rheumy because

he didn't have any open slots for new patients. He immediately sent me for

bilateral hand MRI's and labs. When I went back to see him 10 days later I

had a diagnosis. I had been trying to get an answer for 2 very long years.

Now I'm in the waiting stage again. *sigh* I have to wait until the end

of October to see the Hepatologist. I guess that maybe it's not all that

serious or I would have been given an appointment sooner.

What I can't seem to find an answer for is whether RA can cause the iron

overload/hemochromatosis or is it the other way around? Is it a symptom of

RA or is the RA a symptom of iron overload?

-- [ ] Re: Newbie here, Question about Iron Overload Syndrome

My father and a friend both have Hemochromatosis. It can be quite

serious. My friend required a liver transplant. My father had some

liver damage.. but he has developed MLS ( mylecytic leukemia

syndrome ?? unrelated to the iron overload)and the treatment for that

has actually depleted his high iron stores.. so it is a non issue for

him now.

You should have a liver biopsy for the Iron overload I would think.

If you are still mensturating that has probably helped to keep your

iron overload somewhat in check.. if you have not been mensturating

there may be more of a concern iron has done damage to your organs.

Good luck to you.

>

> I was diagnosed with RA in May this year and started on Plaquenal

> (sp?). Not only did my already thin hair fall out by the handfull

but

> it made me feel worse physically. I'm not sure if it was the

> Plaquenal or the increase in the Aleve that made my joints feel

> better. My RA is primarily in my hands (wrists & fingers) and feet

> (toes). I'm early in the disease thankfully! It was only

discovered

> because I had bilateral carpal tunnel release surgeries 2 years ago

> that made the symptoms worse. MRI's along with blood work confirmed

my

> DX. I believe I've had RA for 10 years possibly longer. I also

have

> Raynauds pretty severely year round. I just attributed the various

> symptoms to job related (repetative motion), where I live (New

> England) or aging (I'm 47).

> My question is about Iron Overload Syndrome. Is anyone familiar

with

> it? I had several different labs that have been positive. My

rheumy

> has stopped the Plaquenal and referred my to a hepatologist. That

> appointment isn't until the end of October. After lurking and

reading

> so many posts I'm worried that I should be on something to stop the

> progression of RA. Is a double dose of over-the-counter Aleve

twice a

> day enough to do anything? I thought I read something that stated

> that the RA can be a sympton of Iron Overload therefor one the IOS

is

> treated the RA could be stopped. I just don't have the strength in

my

> wrist to search the internet.

> Confused is an understatement! The more I read the more confused I

> feel about the entire disease.

>