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Kim - 20 Mar 2005 05:31 GMT

Hello I'm Kim and I'm in Australia

I've been lurking here a couple of weeks now and thought Ide introduce
myself finally.

I'm finding all this auto immune business very confusing. So many different
and varying symptoms and instances for Rheumatoid arthritis. It seems it is
such a varying disease being easily controlled for some and impossible to
control for others.

I've been reading and reading everything I can find and there's some really
scary stuff about it but also some really promising stuff as well.

I have seen 2 rheumatologists and have a high ASA and ESR but no Rheumatoid
factor in my blood results. I also had a bone scan that showed moderate
arthritis in most of my joints. Mine started overnight in the tops of my
arms (like Ide worked out way to hard when I had done no exercise) then it
went to my elbows, then knees, then wrists, then fingers and ankles and
shoulders. The first rheumatologist I saw decided I had reactive poly
arthritis and put me on prednisone, mobic and salasopyrin. I then had an
allergic reaction to the salazopyrin and changed rheumatologists (first one
had warned me of nothing re side effects and given me no alternatives or
options or in fact would even return my phone calls when I was concerned I
was having allergic symptoms, ending up in hospital from it convinced me I
needed a new rheumatologist).

Now the new rheumatologist has decided I have rheumatoid arthritis even
though I have no rheumatoid factor in my blood tests and ive started a new
medication. Unfortunately at the moment only cortisone seems to control my
inflammation and therefore my pain so im hoping the new drug he has put me
on (Plaquenil) works in the next couple of months so I don't have to take
cortisone for too long as the side effects of that are a bit of a concern.
(He did say normally he would start me on a different drug (methotrixate?)
but because of my 7 week honeymoon he didnt want me starting on something he
couldnt monitor my bloods or indeed me for that length of time, hence the
plaquenil instead).

I'm not sure why im writing all this I suppose in the hope that someone had
similar symptoms to me and so I can chat to people in the same kind of
situation as I'm still really just coming to terms to finding out I have
something that wont just go away. I've never really had any health issues
before and I'm getting married in 2 weeks and then off on an overseas
honeymoon so im getting really worried about that as well. I've already
ended up in hospital twice with this in 2 months and I also know stressing
about what might happen is more likely to make something happen but its a
bit of a crazy circle trying to not be stressed about something because of
the effect of the stress, kind of makes you stress more if you know what I
mean and that doesn't sound too confusing :)

Anyway I'm on low doses of cortisone and trying my wedding dress on every
day to ensure I haven't gained weight so it will still fit for the big day,
so far so good :)

Anyway really just wanted to say hello and this is me and thanks for all the
info I've read in the last 2 weeks its been helping me come to terms to
having a disease

Kim

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Katrina - 20 Mar 2005 05:59 GMT

> Hello I'm Kim and I'm in Australia
>
> I've been lurking here a couple of weeks now and thought Ide introduce
> myself finally.

Welcome, but I'm sorry you had to join us.... I'm mostly a lurker and
occasional poster. I was diagnosed about 8 years ago and I can honestly
say that this disease sucks.

> I'm finding all this auto immune business very confusing. So many different
> and varying symptoms and instances for Rheumatoid arthritis. It seems it is
> such a varying disease being easily controlled for some and impossible to
> control for others.

Depending on who you talk to, there are a couple of *hundred* kinds of
arthritis... it's a very complicated group of diseases.

> I've been reading and reading everything I can find and there's some really
> scary stuff about it but also some really promising stuff as well.

Yep- but don't let the scary stuff keep you from getting treatment- if
it's not treated it gets worse and can do permanent damage.

> I have seen 2 rheumatologists and have a high ASA and ESR but no Rheumatoid
> factor in my blood results. I also had a bone scan that showed moderate
[quoted text clipped - 8 lines]
> was having allergic symptoms, ending up in hospital from it convinced me I
> needed a new rheumatologist).

I was first diagnosed with reactive peri-arthritis (the "peri" refers
to the fact that in my case the inflammation is *around* the joint not
*in* the joint- essentially I have tendonitis in every joint). Your
"reactive *poly* arthritis means that it's an inflammation in multiple
joints. I have no rheumatoid factor in my blood results either. My RD
started me out with an injection of steriods and a NSAID (I take Lodine)

> Now the new rheumatologist has decided I have rheumatoid arthritis even
> though I have no rheumatoid factor in my blood tests and ive started a new
[quoted text clipped - 6 lines]
> couldnt monitor my bloods or indeed me for that length of time, hence the
> plaquenil instead).

I took Plaquenil alone (well, with the Lodine) for about 2 years and
for at least 18 months of that it worked very well- towards the end it
wasn't controlling things as efficiently, so we added Methotrexate to
the mix- that worked well for another year and a half or so. Then we
stopped the Plaquenil, and I now take Enbrel, Methotrexate and the
Lodine... all in all, it's a program that has worked well for the last
3 years.

> I'm not sure why im writing all this I suppose in the hope that someone had
> similar symptoms to me and so I can chat to people in the same kind of
[quoted text clipped - 7 lines]
> the effect of the stress, kind of makes you stress more if you know what I
> mean and that doesn't sound too confusing :)

It sounds like your symptoms are very similar to mine... and your RD
is treating them in much the same wat that mine did. Just take it
slowly and don't expect things will get better all at once- you'll have
good days and bad days.

> Anyway I'm on low doses of cortisone and trying my wedding dress on every
> day to ensure I haven't gained weight so it will still fit for the big day,
> so far so good :)

Well, congratulations! keeping the weight off while on cortisone isn't
easy- but if it allows you to function, it's worth taking. I never
ended up taking cortisone on a regular basis, just an occasional shot
in the rear when I'm really flaring.

> Anyway really just wanted to say hello and this is me and thanks for all the
> info I've read in the last 2 weeks its been helping me come to terms to
> having a disease

Good luck....

Katrina

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Kim - 20 Mar 2005 08:30 GMT

>> Hello I'm Kim and I'm in Australia
>>
[quoted text clipped - 112 lines]
>
> Katrina

Hi Katrina

Yes from what I have read I understand the importance of keeping the
inflammation down to prevent irreversible damage to my joints. I'm glad I
didn't mess around and went and saw drs as soon as I started getting pain
and I've been diagnosed and started on treatment so quickly as I hope if
makes a big difference in the years to come.

The hardest thing I'm finding is getting my head around the fact I have
something nasty that wont go away with a few antibiotics or eating better or
doing more exercise.

I'm getting there though and have a wonderful fianc? who is very supportive
and understanding. He even puts up with my hissy fits :)

Thanks for the welcome

Kim

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spodosaurus - 20 Mar 2005 07:26 GMT

> Hello I'm Kim and I'm in Australia

Hi Kim, what part of Australia? I'm in Perth.

>
> I have seen 2 rheumatologists and have a high ASA and ESR but no Rheumatoid
> factor in my blood results.

A significant percentage of rheumatoid arthritis patients will not get
the rheumatoid factor. this does not mean that you don't have RA, and a
good rheumatologist would know this.

> I also had a bone scan that showed moderate
> arthritis in most of my joints. Mine started overnight in the tops of my
[quoted text clipped - 7 lines]
> was having allergic symptoms, ending up in hospital from it convinced me I
> needed a new rheumatologist).

Yikes...smart move switching.

> Now the new rheumatologist has decided I have rheumatoid arthritis even
> though I have no rheumatoid factor in my blood tests and ive started a new
> medication.

He sounds like he knows what he's doing, unlike the first one.

> Unfortunately at the moment only cortisone seems to control my
> inflammation and therefore my pain so im hoping the new drug he has put me
[quoted text clipped - 4 lines]
> couldnt monitor my bloods or indeed me for that length of time, hence the
> plaquenil instead).

Again, he sounds like he knows what he's doing. When you return from
your honeymoon I'm sure you'll revisit MTX.

When you apply for travel insurance, make sure you apply to pay the
excess for a pre-existing condition. Otherwise, if you do need a brief
trip to hospital in your 7 weeks overseas, the insurance probably won't
cover it. The insurance wouldn't cover my aplastic anaemia (a
potentially fatal auto immune disease) but it did cover my total hip
replacements and other arthritis areas, as long as I paid the
pre-existing fee and had everything filled out to their satisfaction.
Get started on that right away, you've only got a fortnight and it can
take that long to get approval sometimes! We used RAC travel and they
helped expedite things for us before we left.

> Anyway I'm on low doses of cortisone

Cortisone or prednisone?

> and trying my wedding dress on every
> day to ensure I haven't gained weight so it will still fit for the big day,
> so far so good :)

Low doses can have a variable effect. Sometimes they give me more energy
so I eat less and do more...and thus lose more weight.

> Anyway really just wanted to say hello and this is me and thanks for all the
> info I've read in the last 2 weeks its been helping me come to terms to
> having a disease
>
> Kim

Enjoy your honeymoon!

Cheers,

Ari

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Kim - 20 Mar 2005 08:24 GMT

>> Hello I'm Kim and I'm in Australia
>
> Hi Kim, what part of Australia? I'm in Perth.

Hi Ari

Im in Sydney

> Again, he sounds like he knows what he's doing. When you return from your
> honeymoon I'm sure you'll revisit MTX.

Yes he gave me the pros and cons of both plaqunil and mtx and he said he was
keener for the mtx as it had a higher success rate but understood I wouldnt
want to be finding somewhere to have blood taken every 2 weeks on my
honeymoon and then faxing him the results back in Australia so he said hey
lets try the plaqunil and we will know by the time you get back if its
working or not and go from there.

> When you apply for travel insurance, make sure you apply to pay the excess
> for a pre-existing condition. Otherwise, if you do need a brief trip to
[quoted text clipped - 5 lines]
> only got a fortnight and it can take that long to get approval sometimes!
> We used RAC travel and they helped expedite things for us before we left.

Im a bit unsure of where to go with this, I applied for the travel insurance
in november last year when we booked the trip and I had no symptoms or
anything then and so I already had the travel insurance honestly signed,
sealed and delivered before I got this disease. Therefore I was hoping I
wouldnt need to change anything on it as when I read the fine print all it
says is you have to tell them if you have any treatment for anything or
symptoms for a couple of months before you get the insurance it doesnt
mention at all if anything happens after you have it all approved etc.

I was nervous about contacting them in case they wanted doctors letters etc
and all would take longer then the 2 weeks I have to get approved and then
if they withdrew the insurance (im not sure they can do that?) then Ide have
no insurance for the kinds of things that happen often like theft of items,
problems with flights, loss of luggage etc etc. Also Im only going to the
UK and Ireland and I did find out Australia has an agreement with the UK so
if I take my medicare card and go to a public hospital (they are mostly
public there) then I get treated under their schemes and dont pay so thats a
good thing to know too.

>> Anyway I'm on low doses of cortisone
>
> Cortisone or prednisone?

I thought cortisone and prednisone were the same thing?

Im on prednisone (I call it cortisone because I work in a vet clinic and
thats what we call prednisolone tablets).
In fact if RA wasnt so unamusing Ide find it amusing that all of my symptoms
are the same as my dog had many years ago when she was diagnosed with an
autoimmune arthritis as well and took many of the same drugs too.

>> and trying my wedding dress on every
>> day to ensure I haven't gained weight so it will still fit for the big
[quoted text clipped - 3 lines]
> Low doses can have a variable effect. Sometimes they give me more energy
> so I eat less and do more...and thus lose more weight.

Im only on 10mg a day and that is controlling the pain, I get twinges so I
havnt lowered it to 7.5 but on 10mg and not more hungry then normal but I
thought it wasnt the overeating with prednisone that put on weight? I
thought prednisone could just put on weight without any overeating? If this
isnt true Ide love to know so I can stop worrying and trying my dress on
every single day :)

>> Anyway really just wanted to say hello and this is me and thanks for all
>> the
[quoted text clipped - 4 lines]
>
> Enjoy your honeymoon!

Thanks, its going to be a wonderful trip, mind you not as energetic as we
had planned but Ill still be able to climb to the top of a few castles and
hey if I have to sit in a few more Irish pubs then we had planned then Im
sure im a willing soldier for that cause :)

Kim

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spodosaurus - 20 Mar 2005 09:03 GMT

>>When you apply for travel insurance, make sure you apply to pay the excess
>>for a pre-existing condition. Otherwise, if you do need a brief trip to
[quoted text clipped - 24 lines]
> public there) then I get treated under their schemes and dont pay so thats a
> good thing to know too.

If I were in your shoes, given what you've just mentioned, I'd not worry
about the travel insurance and just go (that's just what I would do,
based on the added information, not that it's the right thing to do) :-)

>>>Anyway I'm on low doses of cortisone
>>
>>Cortisone or prednisone?
>
> I thought cortisone and prednisone were the same thing?

Yeah, they are, I was having a brain glitch.

> Im on prednisone (I call it cortisone because I work in a vet clinic and
> thats what we call prednisolone tablets).
> In fact if RA wasnt so unamusing Ide find it amusing that all of my symptoms
> are the same as my dog had many years ago when she was diagnosed with an
> autoimmune arthritis as well and took many of the same drugs too.

I'd like to be able to give my remaining celebrex capsules to my dog. We
both are limpy things from osteoarthritis :-)

>>>and trying my wedding dress on every
>>>day to ensure I haven't gained weight so it will still fit for the big
[quoted text clipped - 10 lines]
> isnt true Ide love to know so I can stop worrying and trying my dress on
> every single day :)

You can put on water weight, and you can put on weight from the effects
it has on your metabolism (epsecially glucose metabolism). Feeling
ravenous all the time is a common side effect, and it doesn't help in
terms of weight gain, but their are other routes through which
prednisone produces weight gain.

>>>Anyway really just wanted to say hello and this is me and thanks for all
>>>the
[quoted text clipped - 11 lines]
>
> Kim

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Lyn - 20 Mar 2005 13:38 GMT

> Hi Kim, what part of Australia? I'm in Perth.

Hi Ari,

I am in Tucson, Az and from Perth. Small world.

Lyn

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spodosaurus - 20 Mar 2005 19:05 GMT

>> Hi Kim, what part of Australia? I'm in Perth.
>
[quoted text clipped - 3 lines]
>
> Lyn

How does the climate compare to Perth?

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Lyn - 20 Mar 2005 19:47 GMT

> How does the climate compare to Perth?

More like Kalgoorlie, no red dirt though. Perth like San Diego.

Lyn

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spodosaurus - 20 Mar 2005 19:50 GMT

>> How does the climate compare to Perth?
>>
> More like Kalgoorlie, no red dirt though. Perth like San Diego.
>
> Lyn

When I was in LA last year I thought it was similar, but not as hot.

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KSMorris - 21 Mar 2005 08:33 GMT

Kim,

Glad to see you here.

My personal suspicious as to why some people are doing well while
others arem't is how much accurate information they are getting about
medicines available to treat RA. A lof of rheumatologists seem to
diddle around trying patients on less-effective drugs. I would
strongly urge anyone to try to gt thier doctor to put them on
Methotrexate (if kills the extra T cells that go to your joints and
destory them. You can get a medical remission this way. If you have
any stomach issues, ask your rheumatologist to inject the Methotrexate.
Gold injections are also widely successful in putting RA into medical
remission.

Good luck.

K

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Nann Bell - 21 Mar 2005 16:16 GMT

Hi Kim!

Off the top of my head, I'd say you have two things going for you in
adjjusting to all this - you are living in a time when new discoveries and
new treatments are coming constantly and, perhaps more importantly, you are
an active participant in your treatment. We've seen too many folks here who
were stuck with lousy RDs for years. you helped yourself a lot just by
dumping that first bozo!

I'm so sorry you're having to deal with all of this just as you are getting
married. I trust your fiance is being helpful and understanding? That makes
such a huge difference.

I started down the arthritis road when I was in my late 20s and it was really
upsetting for me. My dad had RA so I already knew a lot about it and I
really didn't want to head down that road so young. But I pretty much
adjusted and despite some really bad spells, overall I've had a good life. I
would have preferred to be all healthy through it, but I certainly wouldn't
trade the life I've had for the sake of not having arthritis. You'll get
your mind around it all eventually and you too will have a good life, even
with arthritis.

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Simply the thing I am shall make me live --- William Shakespeare

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Kim - 21 Mar 2005 21:45 GMT

> Hi Kim!
>
[quoted text clipped - 24 lines]
> your mind around it all eventually and you too will have a good life, even
> with arthritis.

Thank you everyone for all the welcomes and information :)

Yes I'm definitely not one to put up with bad service, I don't care how many
letters are after their names. I'm of the belief that I'm paying for a
service and I want good service so Ill keep looking until I find it.
Especially with someone that really is going to be controlling something as
important as this is going to be in my life.

My fianc? is wonderful, very caring and understanding and supportive.
I found it incredible that once diagnosed I would tell people I knew about
it and everyone knows someone with RA and usually close relatives. Ide
heard of it before but knew noone with it or anything about it at all. Now
I know of many many people with it and it was good for me to hear the real
life stories of these people. Some good, some bad just so I can hear the
huge variations in this disease how it affects so many people so differently
and how you really have to take control of making the most of your own life
and that means exercising more to help my joints, dropping some kilos to
also help them out a bit as well. I guess it was just nice to hear things
about real people (a bit like this newsgroup really) rather then just read
and read all the RA information on the web that is very clinical and not
really about individuals and their symptoms and their lives and how they
deal with it day to day. I don't just mean the pain I mean the way you feel
I your head finding out you have something that's going to be with you
forever and could be ok or could be really bad noone knows, its proving to
be somewhat of a challenge for me. One day positive the next why me, that
kind of thing.

Anyway I'm very much looking forward to getting married in less then 2 weeks
now and so far so good no weight gain fro the prednisone, in fact I've lost
a little it seems to be making me less hungry, or is that just wedding
nerves :).

Thanks again for all the support

Kim

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