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Re: [IPk] RE: Rheumatoid Arthritis

Hi Beverly

I am sorry to hear about the diagnosis.  I had just written you a long email
and was searching for some links to post when the computer froze and I had to
restart and lost all the mail.

I think I spoke to you once before about this. I have RA, I developed it at
the same time as Sasha  8 years old, was developing D.  I got the diagnosis
just weeks after Sasha was dxed with D.

My GP took ages to get round to sending me to see someone, as I guess that he
too though I had enough on my plate at the time to cope with.  The current
thinking is that they like to get you on DMARDs early these days rather than
wait for further damage as once the joints are damaged nothing can repair
them.  There are lots of different ones and it may take a while to find one to
suit.  I too had to wait over 6 weeks to see someone through BUPA too.  By the
time I got there I was in a bad way.  I took a low dose of steroids until the
other anti rheumatoid drugs kicked in.  I had 3 very good years on
Sulphsalazine until recently then I had a flare up at Christmas and the drugs
stopped working for me.  I now take methotrexate and that is now working and I
am in remission again.  These thing vary from person to person and which drugs
work.  What does your sister take?

A really good newsgroup is uk.people.support.arthritis and
alt.support.arthritis.  I didnt need to go to a newsgroup in the last 3 years
because the drugs worked well.  But the drugs dont come empty handed and can
be a double edged sword.  You need regular blood tests to check they are not
harming you.  But you may know all this from your sister.

RA is very variable and of course some with mild RA and few symptoms do not
need to consider any of the more "serious drugs".

We have no one in the family that has RA or Diabetes. Unfortunately autoimmune
diseases seem to go together.  Sasha has coeliac too and so does her sister.

Some links that might be of use



Mail me off list if I can be of any help.


----- Original Message -----
From: "Smith, Beverley" <email @ redacted>
To: <email @ redacted>
Sent: 08 June 2002 17:46
Subject: [IPk] RE: Rheumatoid Arthritis

> Sorry to have been a bit quiet for the last few weeks but 2
> weeks ago I was diagnosed with Rheumatoid Arthritis or at
> least I think I was as My GP (more of a friend than a GP) was
> unable to look me in the eye and seemed to be more in denial
> than me!  I did send an e-mail a few weeks back asking if
> anyone had suffered with swollen joints.  I do a lot of
> running (6 to 10 miles at a time!) so sore feet and knees are
> a fairly regular occurrence however when it spread to stiff
> fingers and elbows then it became clear that I had a problem.
> My sister was diagnosed with RA 8 yrs ago (she is 35) and as
> it is an auto-immune problem like type 1 diabetes it seemed
> to be the logical explanation.  My GP arranged some tests but
> told me that in his opinion it was extremely unlikely as it
> is not a hereditary condition.  The tests came back and he
> called me back to explain that the test results were all
> normal except the rheumatoid factor which was "raised".  I
> asked him what raised meant - were we talking the high side
> of normal or higher?  He told me that normal is 20 or less
> and mine was 300!  I took this to be a positive diagnosis.
> Since then I have required some powerful anti-inflammatory
> drugs(maximum dose and still stiff) and am waiting to see a
> specialist (6 weeks even with BUPA).  Anyway running still
> helps.  It loosens me up and it is now probably the only time
> that I feel normal.  I am hoping to run my first (and maybe
> only)half marathon at the end of September - depending on
> what the specialist says (actually that's a lie I will do it
> unless it is physically impossible regardless of what he
> says).
> I don't really know why I am writing this except it is
> cathartic!  I have told very few people, certainly no-one at
> work!  I have been selected as one of the top 25 performers
> in the UK and will go to the Netherlands in September for a
> weeks leadership training course.  They no longer even think
> of me as diabetic, don't even notice the pump.  I am
> certainly not going to tell them I now have 2 chronic
> conditions unless I have to.  Anyway if anyone else out there
> has diabetes and RA I would be interested to hear from you.
> I have been told by my GP that some of the treatments (the
> more toxic, immuno-suppressants) may not be open to a
> diabetic, but as someone told me last week that diabetics
> couldn't have their legs waxed I will take that with a pinch
> of salt until the specialist tells me otherwise! I don't want
> to look on arthritis sites for diabetics as at the moment I
> regard myself as a diabetic with RA rather than the other way
> round.  This is an important psychological distinction I
> think - or perhaps a clear sign of denial!
> My sister has now been told that her RA is probably Lupus,
> which is similar but the inflammation now affects not only
> her joints but her blood vessels also (there is a risk that
> major organs may become affected).  Her blood vessels are
> leaking giving her very painful chilblain-like symptoms on
> both her hands and feet.  I hope my GP is right about no
> genetic link otherwise my blood vessels are going to be under
> attack from 2 conditions.
> Anyway if anyone has any advice I would be pleased to hear of
> it.  If anyone knows of anyone running marathons with RA I
> would be overjoyed to hear about it.  At least when you look
> on a diabetes website there are plenty of diabetic sports
> people.  I cannot find any on the arthritis sites.  Exercise
> is encouraged but in moderation - swimming is best but its
> not me I afraid.  I am the fittest, thinnest and healthiest I
> have ever been (thanks to the pump).  I run 3 times a week
> usually for an hour each time.  I have lost over a stone in
> weight and I have a lot of energy.  I intend to stay this way
> but maybe I'll need that Canadian surgeon for my knees that
> Alan Shearer used - Anyone know his name?!.
> Bev
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