Re: Sub Acute Cutaneous Lupus & ITP & Sjogren's

[Guest guest]

Hi and welcome to the group/family.

I have a combination of various diseases.

I have SLE with all major organ involvement, plus TTP, also ITP,

Sjogren's, Fibromyalgia, Raynauld's, lol the list goes on.

I was first dx'd with lupus sle and TTP following my first stroke.

The TTP was the hardest one to get under control but I did until just

last year when I developed ITP. My hematologist determined that the

methotrexate was causing me to have ITP so he had me stop that

medicine and my ITP went into remission. I am now back on the

methotrexate along with cellcept and my doctors and I decided that

being able to control my lupus was more important than my ITP - I am

just closely monitored for my platelet counts.

For me I find trying to control the lupus the hardest part of all my

diseases. So to answer your question as to whether or not does one

bother me more than the other yes the lupus is the worst. I have been

through plasmaphereisis several times to the point where I don't mind

it any more - in fact I would rather have to deal with the TTP/ITP

rather than the lupus, sjogren's, raynauld's, etc.

It's just a matter of what the individual can handle. One important

thing to always remember is no 2 lupus patients are alike. Some meds

work well for some while the same meds may not work well with others.

It's a play with meds as you go game (at least for me anyways)

How long have you had lupus? ITP? Sjogren's? Have they determined

what is causing your ITP? Have you been tested for TTP?

I will send through some info on the various diseases.

Keep us posted.

Hugs

Deanna

Owner and Founder

> New to the forum and was just wondering how many of you out there

> have this combination and how you deal. Does one bother you more

> than the other ? I'm on Plaquenil and Vioxx and can't tell if they

> are doing much good.

[Guest guest]

I was diagnosed with ITP in 1997 after the birth of my first

daughter. Ran all sorts of tests to rule out first one thing and

then another and it was decided I had ITP...with no none cause. 4

years later after the birth of my 2nd daughter not only were my

platelets bottoming out but I started getting these ugly round sores

about the size of pencil erasers all over my body....and everything

just kind of mushroomed from there. I'm in with a good Dr. now that

has just within the last year given me the other 2 diagnosis'. I

don't know which ailment bothers me the most, they all come with

their own nasty baggage, but I guess we all have to deal. Glad to

find a place like this.

Tricia

> > New to the forum and was just wondering how many of you out there

> > have this combination and how you deal. Does one bother you more

> > than the other ? I'm on Plaquenil and Vioxx and can't tell if

they

> > are doing much good.