New to group

Thread view:

Enable EMail Alerts

Start New Thread

Thread rating:

Bsunshine - 19 Sep 2006 19:41 GMT

Hi All, I hope I'm in the right group. I have UCTD. I was given the
offical dx about 3 years ago. My docs think that I have it for around 10
years before anyone could put the syptoms together. Any way, I have been
through the gammet of medications , the newest being Cellcept. Anyone
familiar with this one? Ive been on it for 6 months now. I have noticed
that my thoughts are alot clearer now and I seem to be able to remember alot
more, but the fatigue is ever present along with the joint pain and
shortness of breath. I fanyone out there would like to give feed back or
just talk. I would surely invite them.

Reply to this Message

Sherry - 19 Sep 2006 20:46 GMT

Just wanted to take the time to welcome you to the group. We have several
people with a UCTD dx and I'm sure that they will be responding soon. I
don't have any experience with Cellcept but have many years of experience
with pain, fatiqgue and my memory.

Once again welcome to the group.

Hugs,
Sherry

> Hi All, I hope I'm in the right group. I have UCTD. I was given the
> offical dx about 3 years ago. My docs think that I have it for around
[quoted text clipped - 8 lines]
> shortness of breath. I fanyone out there would like to give feed back or
> just talk. I would surely invite them.

Reply to this Message

Bsunshine - 11 Oct 2006 18:31 GMT

Thanks for the welcome,

Are you on any meds? It looks like alot of people that have posted take
Plaquanile.
I know what you mean with the pain and fatigue, this fall weather doesn't
help much either. I love this season but not the damp cold.
Cari

>Just wanted to take the time to welcome you to the group. We have several
>people with a UCTD dx and I'm sure that they will be responding soon. I
[quoted text clipped - 11 lines]
>> shortness of breath. I fanyone out there would like to give feed back or
>> just talk. I would surely invite them.

Reply to this Message

Andy - 19 Sep 2006 21:00 GMT

In article <6689569a8e5d6@uwe>, Bsunshine <u26868@uwe.?.invalid> wrote

>Hi All, I hope I'm in the right group.

Yup :)

> I have UCTD.

This may help: http://www.northeastlupus.org.uk/factsheets/faqs18.htm
about 2/3 down the page...

Are people with lupus more likely to get other problems where the immune
system attacks the body?

The answer to this is yes. Anyone with one condition where the immune
defence mechanism attacks the body (so-called autoimmunity) is prone to
another one. We know this is the situation with all autoimmune diseases.
For example, people with diabetes (where the body attacks its insulin
making cells) are more likely than the general population to get
rheumatoid arthritis or thyroid diseases.

In general, if a patient has lupus combined with another autoimmune
disease, the lupus itself tends to be less severe. In the same way, the
other autoimmunune disease, which can occur without lupus, tends to be
milder. Correspondingly, doctors can get away with less powerful
treatment in these 'overlap' or 'mixed connective tissue' disorders.

Signature

Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Reply to this Message

Nancy F - 20 Sep 2006 09:26 GMT

What a blessing that your thoughts are clearer and your memory is
improving! For that alone I would sign up for the fatigue! I have heard that
some of the fatigue & pain tapers off when the treatment is finished.
Nancy F, SoCal
Christ, Cats, Chorus & Computers

Reply to this Message

Diane - 21 Sep 2006 09:18 GMT

> Hi All, I hope I'm in the right group. I have UCTD. I was given the
> offical dx about 3 years ago. My docs think that I have it for around 10
[quoted text clipped - 5 lines]
> shortness of breath. I fanyone out there would like to give feed back or
> just talk. I would surely invite them.

Reply to this Message

Maggie - 21 Sep 2006 18:35 GMT

Welcome Sunshine!

I know that one of our roomies (Mair) used to take Cellcept, but I
haven't seen her around for a couple of weeks. Maybe she'll see your
post soon though. I hope you find all the support you need here and
all the info too. It's just kinda slow right now though.

We're glad to have you with us!

Maggie

Reply to this Message

Beverley - 22 Sep 2006 02:26 GMT

Hi and Welcome!

I've been way busy for the last 2 weeks and now I'm paying for it. Nothing
new about that. LOL

I don't like shortness of breath. Have you talked to your doc about that
one?
Bev

Reply to this Message

Bsunshine - 11 Oct 2006 18:27 GMT

HI Beverley,
Thanks for the welcome,
I have, my rheumotologist sent me to a heart/lung doc, Their first
thoughts were astma but after sample meds for astma and breathing tests the
conclusion is that its just part of the UCTD. Yahoo, another symptom to deal
with (HAHA).
Bsunshine

>Hi and Welcome!
>
[quoted text clipped - 10 lines]
>> shortness of breath. I fanyone out there would like to give feed back or
>> just talk. I would surely invite them.

Reply to this Message

greenknees - 11 Oct 2006 17:36 GMT

Hi, I'm new to the group too. Have a long hystory of RA and now have
just been diagnosed with lupus. Doc. put me on plaquenal and
dexamethazone. I droped the dex/steriod because it made me a nervous
wreck. Man I hope this plaquenel works.
My hands are in firey pain. My kids can't understand why I cannot
drive them places.
My hands just won't grip the wheel. I am overwhwlmed.
Teresa (age 46)

Reply to this Message

Sherry - 11 Oct 2006 18:04 GMT

Teresa,

Welcome to the group. Plaquenil, is a wonderful drug for many of us. You
need to remember that it is not one that works immediately. It can take
several months before it gradually helps...leaving you to wonder after 6
months if it really has been helping but if you stop taking it you realize
just how much it was doing.

I'm sorry that you are having trouble with your hands and gripping the
wheel. Not being able to drive the "kids" here and there is something that
they just might have to learn to understand.

Our lives have all changed with our illness and things that we once were
able to do are just memories. We have to adjust and so do our families.

Have you gotten and read "The Lupus Book" by Dr. Daniel Wallace? It is a
must read. 2nd and third edition. Would be good if your family read it
also....it would explain so much to them.

Once again Welcome to the group.

Hugs,
Sherry

Reply to this Message

greenknees - 11 Oct 2006 23:07 GMT

Thanks so much on the advice about the book. I certianly WILL read
that.
And thanks to everyone else who's told me about staying the course on
plaquinal. I need relief and I need it now. I think Had I not
understood now about waiting on the plaqunal to work I'd certianly give
up. I know I darn well gave up fast on that steroid.
Talk about "roid rage" My family doesn't need to see me like that. I
felt like jumping off a 7 story building. So far the plaquinel hasn't
made me feel desperate like that.
Please all, forgive my spelling.
Teresa

> Teresa,
>
[quoted text clipped - 19 lines]
> Hugs,
> Sherry

Reply to this Message

Bsunshine - 11 Oct 2006 18:40 GMT

HI Teresa,
I understand about being overwhelmed, especailly trying to explain to your
kids whats happening with you. My boys kind of understand. At least the
oldest one, and he helps the 2 younger ones understand.
I know what you mean by not being able to grip with your hands, mine are not
so bad that I can't drive though.
I was on Prednisone for along time and that seemed to help. The plaquanil
didn't have any effect on me. Give it time though, from what i understand
all these kinds of meds take time to build up in the body.
Take care
and good luck with the kids
Cari

>Hi, I'm new to the group too. Have a long hystory of RA and now have
>just been diagnosed with lupus. Doc. put me on plaquenal and
[quoted text clipped - 4 lines]
>My hands just won't grip the wheel. I am overwhwlmed.
>Teresa (age 46)

Reply to this Message

greenknees - 11 Oct 2006 17:39 GMT

Reply to this Message