Re: HIV and PsA, Ankylosing Spondylits, Psoriasis

[Guest guest]

-i Jimmy,

thanks for writing. You have an interesting and informative story.

Years ago before they knew about fibro and CFS I had a doc who became

convinced I might be HIV+. My symptoms so closely resembled a patient

with AIDs he had treated. I knew I could not be so didn't worry. I

guess his HIV+ patients were getting bad psoriasis and I had all the

other weird symptoms I now know are fibro and CFS.

I also had an experience with inflamed lymph which a physician

assistant called cancer but turned out to be plain old pa. I'm sorry

you actually went thru surgery for yours....

good luck with the enbrel and with everyhing else. Let us know if

your body will tolerate the enbrel....I hope so...

Best,

Marti

- In , " Jim Toomey " <jamesto@m...>

wrote:

> I'm writing this email because of a recent post (from Dawn) about

> Ankylosing Spondylits and because I've been meaning to write this

for

> some time.

>

> I'm interested in hearing from other people (medicated or not) who

are

> HIV+.

>

> I'm a 39 year old man and have been HIV+ for over 21-22 years (if

you're

> wondering, that was before we really new what HIV was). I'm

considered a

> " long-term non-progressor " which means my immune system has never

> degraded to the point where I needed HIV meds. I've been part of

studies

> as long as I've been positive (hell, I'm one of the few still

around who

> was infected that long ago). One of the things I've discovered is

that I

> have one gene mutation (CCR5) that has been shown to be present in

> many/most/all non-progressors. I got the gene from one of my

parents. If

> I had two genes, I'd be a lot better off than I am.

>

> I was diagnosed in January with PsA, AS, and Psoriasis. We had been

> chasing the problem for over three years (was the asymmetry because

of

> the braces I wore as an infant to turn my legs out? Was the

asymmetry

> caused by the auto-accident when someone rear-ended me while I was

> (parked) and reaching into the backseat? Was it do to my desk job

and

> poor posture?). I was in considerable pain, could not sit or stand

> comfortably, I took my car in three times to have the alignment

checked

> because I thought the pain I was having was from my car pulling too

much

> to one side. I could go on but most of you have probable heard this

all

> before (my mechanic found it hysterical though when I told him it

wasn't

> my alignment). My friends have labeled me the klutz because I keep

> dropping things (because my hands don't close like I think they

will)

> and because I trip constantly (my left leg doesn't lift as high as I

> think it will). I became " left handed " on my computer and for most

other

> things because the spondylitis pain radiated down my right arm

whenever

> I moved it or tried to use it. I bought a new mattress (extra soft)

to

> alleviate the pain in my hips thinking it was my old mattress.

>

> What's most striking to me, is I never connected all these problems

> spots in my body. That is, I knew I had upper back and right arm

pain

> but I dismissed my low-back aches, stiffness, and asymmetry as a

result

> of my " upper right quadrant " problems. I dismissed my exhaustion

(since

> my docs couldn't explain it) as just a function of getting older.

I've

> always been energetic and I just thought my body was finally

catching up

> with me. I mean, what's wrong with needing 8-10 hours of sleep at

night

> and still feeling exhausting after being awake for 4-6 hours???

>

> Because I'm HIV+, I could not take anything but NSAIDS. They didn't

work

> well enough and my Rheum said it was time for Enbrel. Within two

weeks

> of going on Enbrel, my viral load skyrocketed to astronomical

numbers.

> The outcome is that my doc, my Rheum, my Infectious Disease doc, all

> feel that it was just an initial spike and things will subside.

We'll

> see as Enbrel has made a difference. (If you're HIV+, please feel

free

> to contact me as I'm not going in to great detail here).

>

> I also want to say that I have a history of related symptoms that go

> back years. What is not clear to my docs is whether I would have

had all

> of this if I was not HIV+ (since the same t-cells are involved in

HIV as

> with my arthritis, they think there is clearly a causal link).

>

> I also wish I knew about this years ago - it may have saved me some

> major surgery. I had a parotid gland and four lymph nodes removed

after

> years of constantly swelling (now referred to them as inflammatory

> disease). My other one has been acting up for the past few years.

When I

> started strong NSAIDS and then Enbrel, it started to clear up. They

> think (now) that it is related to the inflammation in my body as

lymph

> nodes react to the increased TNF and white blood cell imbalance.

>

> Related issues, questions, concerns, let me know.

>

> Jimmy

[Guest guest]

Jimmy,

I know the Drs. at UT-Houston Health Science center work with some

people in Houston that have AS and are HIV+. I have heard one of

the DRs. say something about HIV+ patients that are HLA-B27+. Sorry

I can't remember at the moment. If would like to talk to the study

director you can e-mail me for more info.

Debbie

[Guest guest]

Hi Jimmy and welcome.

Hope you get the help you are looking for. I have never noticed any mail

referring to HIV in the group but that is not to say there has never been any. I

have only been a member for a few months so I could easily have missed it.

Good to see you are doing ok. It must have been difficult having to deal with

that over the years and now PA as well. Keep posting. This is a great group of

people we have here.

Good luck,

[Guest guest]

Jim,

Here is the contact info. Tell I suggested you call. I wish

I could remember what Dr. Reveille said about HIV+ but I'm sure

will be able to fill you in. She is a super nice person and

really cares about the patients in the clinic as well as the people

in the research project.

Good Luck!

Debbie Coker

University of Texas-Houston Health Science Center

laura.diekman@...

1-713-500-6852

> Thanks Snowbound22003 and dgcoker2003!

>

> I'll look into HLA-B27+

>

>

> Regarding the inflamed lymph glands, it was a classic horror

story. I

> started seeing a new primary care doctor and he wasn't happy that

I had

> a nodule for years. Sent me to an ENT who ordered a CAT scan (and

they

> had an opening that day across the street). I returned that

afternoon

> and my ENT could see me. Came back after reading the CAT scan and

said

> " It looks as if you have a number of nodules deep in your neck and

I'm

> not " good enough " to treat something like this. " A few biopsies

later,

> they declared it non-malignant and horribly scarred - now we know

why it

> was scarred (the years of inflammation stressing the poor things).

>

> Debbie - I would like to know who the study director is (or a tiny

bit

> more info like the clinic or study name or something).

>

> I'm incredibly fortunate to live in a big city and to have one of

the

> (from what I can tell) world's best rheumatologists (Philip

Mease). I

> had worked in clinical research and the medical field for 13-years

> before so this is a value judgement on my part but he has done

research

> for years, published a lot, has been involved with the design and

study

> of Enbrel, and seems to know everyone else worldwide. Still

though, I've

> been HIV+ for so long (one of the 1st more or less) that he - and

others

> - watch me to see what happens since they can only guess. (It was

rather

> cute - he wanted me to get some viral load and other tests done

the day

> I started Enbrel and then every week for six weeks so he could

watch

> what happened. Then, when I said something had happened he

said " it's

> not related " . I smiled and said " then why did you want me to get

these

> tests every week " . " Oh " , he said, " I guess you're right " . :-)