Frau Eva, Results and a Humble Request for Advice.

[Matty the Damned]

As I said I went to see Frau Eva today.

Firstly, some results. My last set of bloods was taken in June this year. I had bloods taken in hospital last week. For some perspective herewith those results:

June 2006
CD4 Absolute: 304
CD4 %: 19

August 2006
CD4 Absolute: 216
CD4 %: 18

No surprises there. My VL for August isn't available yet, and frankly I don't care.

As for the other issues I've been dealing with of late, well there have been some developments. I don't have erythema multiforme at all. The ID I saw in hospital last week cocked that up. Frau Eva tells me that this is something "much more serious than EM."

Her words.

We don't what's going on for sure but we do know it's an auto-immune malfunction and the good Frau believes it to be AIDS related. The rash is a vasculitis of some fell description. The swelling and pain in my joints is arthritis. I've been referred to an immunologist on the 15th of this month.

In the meantime (the pain is still terrible) I've been given powerful codeine based analgesics and a rip-snorter of an anti-inflammatory called indomethacin. Lots of 'em too. They work a treat.

Frau Eva isn't keen to say too much until I've seen the immunologist. Which I can understand. I mean, why have a dog if you're gonna bark yourself? She says that, most likely, I'll be placed on a course of steroids and this should be very effective.

Matty the Damned on 'roids. What a delicious thought.

I was wondering if anyone has any knowledge and/or experience of auto-immune disorders, in particular those related to HIV/AIDS? The 15th is Friday week away and a little insight into what I might be facing would be most welcome.

In breathless anticipation,

MtD

[IzPoz]

Matty,

I'm hoping it's not as serious as she's thinking.  Vasculitis I hear can be very painful.  I've no experience with it at all, so unfortunately I'm of no help there.  I'm glad that she found something that seems to be working with the pain.

Just continue to follow the doctor's orders and get your rest.

Be well.

[penguin]

matty, the damned, hello

glad they are taking this seriously and investigating further. and that pain meds have been given & taken and helpful.

there could be so many causes, speculating is, well, just speculating.  vasculitis can be as a direct result of hiv, quite rare, but can be.
other things like rheumatoid arthritis, lupus, hepatitis, assorted other syndromes, medications, will need to be investigated too..
whatever it is, hope the bottom of it is got to, quickly, and action plan created.

(they will, of course, nag about ARV's. which might help, but that is for you to decide how much, always)

take care,
kate

[Dachshund]

Matty Poo,

Hang in there angel while we rally the troops...advice is on the way.

Love and friendship,
Hal

[Andy Velez]

Thanks for the update, Matty. I'm going to do some snooping around and see if I can come up with any info for you.

Double cheers,

[Iggy]

.

[HIVworker]

Matty,

I am sure you have looked this sort of stuff up, but in the 1 in 10,000 chance you didn't here is a quick overview of HIV and such problems you are having.

Patients with HIV are much more likely to develop reactive arthritis, Reiter's syndrome, and psoriatic arthritis. In these cases, doctors aren't sure whether HIV actually causes these forms of arthritis, or whether the arthritis occurs separately. Up to 30 percent of HIV patients also suffer from fibromyalgia.

If I get time I will do some hunting for you too.
Rich.

[Matty the Damned]

Thanks guys! I really appreciate it.

Rich,

I've actually avoided doing self research on the net about this. I'm generally pretty good at reading scientific type documents and getting ths gist, so to speak, but I think I'm a bit close to this one and my perspective might be skewed. So I thought I would post requesting help here and get information filtered through cooler minds.

If that makes sense.

MtD

/edited for a codeine blurred typo/

[Moffie65]

Matty,

Thank the great spirit for Frau Eva.  I felt in the beginning that someone was wrong about your diagnosis, and now I have a whole lot better feeling for this decision that she made.  I realize you don't particularly like her, but I think she is spot on with her feelings here. 

Your numbers are stellar, considering what you have been through the last couple of months.

Glad to see you are back into the fight here, and you are always welcome to vent, ask, rant, spew or anything else you feel like doing.  This gives you a load of leeway for behavior.

Love ya Matty.........

[RAB]

Matty

I don't know much about auto-immune disorders, my doctor has talked about them with me but honestly it just went over my head.  I'm glad the good Frau is on top of this though and sending you off for the proper diagnosis and treatment. 

Please keep us posted.  Worried and concerned are my emotions right now.

RAB

(Matty on Prednisone?  Oh lord help us all!   )

[Tim Horn]

Hi Matty --

Well, it sounds as if you're at least on the road to better understanding what's going on and -- even more importantly -- what you can do about it.

The fact is, autoimmune problems have long been documented in people with HIV.  Unfortunately, the data are all over the place, with at least one study indicating that approximately 1% of people with HIV are susceptible to autoimmune problems, with a few other studies suggesting that the incidence is approximately 60%. 

Vasculatis and rheumatoid arthritis are definitely two relatively common autoimmune manifestations, but problems like Grave's disease, biliary cirrhosis, and thrombocytopenia have also been clearly documented in the medical literature involving HIV-positive folks.

Generally speaking, autoimmunity occurs when the immune system fails in its ability to differentiate between "self" and "non-self."  In other words, the immune system stops targeting pathogens -- such as free-floating HIV or HIV-infected CD4+ cells -- and begins attacking healthy cells and tissues in the body. 

There are a number of hypotheses for why this occurs, including T-cell bypass (whereby B-cells go about producing autoantibodies without T-cells orchestrating them), molecular mimicry (whereby a foreign antigen looks like a self antigen and causes the immune system to target both the infection and the healthy antigens), and cytokine problems (whereby there is an overabundance of harmful inflammatory cytokines in response to a chronic infection).  All of these have been said to occur in some HIV-positive people.

Several autoimmune diseases -- such as HIV-related vasculitis -- seem to be directly related to the severity of HIV infection.  There are data indicating that HIV-related vasculitis improves in people with HIV who begin antiretroviral therapy, as it helps to sequester HIV replication and, in turn, calms the immune response to the infection. So, while a course of corticosteroids may be a standard approach to managing autoimmune problems, so is anti-HIV treatment in people with uncontrolled HIV infection. 

I realize that antiretroviral treatment simply isn't something you want to do, but it may be a solution to the autoimmune problems you're currently dealing with (and believe it or not, the side effects of HIV treatment may be a minor compared to the potential side effects of high-dose or long-term corticosteroid use). 

Good luck with the rheumatologist... and I sincerely hope you're getting some relief from the analgesics.

Tim Horn

[Dachshund]

Matty Poo,

....what Tim said...something to ponder over your Vegemite and toast.

Can you feel the love?

AD

[ACinKC]

Good luck matty.  Vegemite is fucking NASTY!  V8 peanut butter type shit!  Seriously you convicts are a crazy lot!

[aztecan]

Hey Matty,

A dear friend of mine (and who Moffie knew as well) had Lupus along with advanced HIV disease. His Lupus seemed in check when his CD4s and viral load were in relatively good shape.

That changed with his numbers took a dump. One side effect of Lupus is the person appears very red in the face. Boy, howdy, he looked like a sunburned tomato.

I know this is only one example, but it is someone I knew who went through this type of scenario.

He had Lupus prior to his being diagnosed HIV-positive, though. It didn't develop after he became a possie.

I don't know much about auto-immue issues. I will look about and see what I can find.

Hang in there youngun.

HUGS,

Mark

[gerry]

Hi Matty:

Sorry to hear about your continuing problems.  There are case reports in medical literature about leukocytoclastic vasculitis in HIV infection.  Reading back your account of what has happened, it seems like a plausible cause of your recurrent rash, including the pain associated with it.  Individuals with recurrent leukocytoclastic vasculitis may need short courses of steroids to calm it down.  But this is just a temporary solution.  In addition to Tim's advice about ARVs, dapsone may be another drug to use in this situation.  There are some reports of dapsone's ability to suppress this autoimmune phenomenon.  I recall talking with a dermatology specialist from a teaching hospital who gets lots of referrals about leukocytoclastic vasculitis regarding someone with this condition (although not HIV related) that keeps having recurrent lesions.  He suggested starting dapsone, along with the course of prednisone (which eventually needs to be tapered), and the dapsone can be used as "maintenance" therapy.  The dose that he quoted was pretty low at 50 mg/day.  Since you are close to needing PCP prophylaxis with your current numbers, it seems logical to use dapsone (PCP prophylaxis dose is 100 mg/day) over something like trimethoprim-sulfamethoxazole (which can also cause a rash), and you might end up hitting two birds with one stone.  Just a thought to discuss with your docs.  I'll have more time to dig out the literature on this after work later.  Gotta run now.

Gerry

[LatinAlexander]

Ohhh Matty. Sadness fills my heart...But You will have to make it trough this one as well. ...If you do not , then who is gonna pick me up???

GO FOR IT...I hope Frau Eva gets rid of the pain...

Alex

[Life]

Matty I am trying to picture Flau Eva in my mind... Am I close?

Or am I just "crackhors"?


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[cjc]

Matty, glad you let us know what's going on. I have no advice to give you but i hope you will be okay. keep us posted.  Thanks, cristy

[sweetasmeli]

My dear mad as a hatter Matty
I dont care what spin you put on this, the drinks are still gonna be on you!!!
Hon, I'm crap at science but I'm great at hugs & kisses, so:

 (((((((Matty)))))))

Said the rest in my texts...

Now hurry up and get your blotchy arse better pronto!

The Delightful Melia

[JohnOso]

Matty,

i've been watching from the sidelines, so to speak, but have been concerned about your recent health problems myself.

It reminds me of something my doctor always says.  In response to my questions like, "What can I do about this," (in all it's many forms) he always calmly looks at me and says...."T-cells."

Annoying as fuck,  but what can one say about a response so fiendishly simple? 

(Hmmm, Eric...I've always pictured Frau Eva like that too.  I'm sure she enjoys a fine Havana and brandy before Matty's appointments, to get her evil groove on.)

Take care,
John

[otherplaces]

Matty,

Just wanted to say I'm thinking about you.  Hang in there.

much love,
brian

[Eldon]

Hey Matty,

I am going to agree with Tim here on this one. Maybye you should start your med regimen to suppress the HIV Virus.

i did a little research myself and found; When the immune system attacks any tissue, a cascade of inflammatory substances is released, such as cytokines and interleukins that can cause several disruptions in normal function, such as pain and swelling.

Other than that, Matty, follow the Doctor's advice on this situation and get better.


Have the BEST Day!

[Matty the Damned]

Tim, Rich and Gerry,

Thank you so much for the information and the promise of more to come. You've helped me understand what's going on so much more clearly and the options I have. I'll be able to visit the immunologist with some perspective. Always a useful thing, I think.

Mad props to you!

Eldon,

Sweetheart, thank you for taking the time for find a link for me. I sent you a PM about it but you've not responded. Darling, I really appreciate your effort, but unfortunately you've linked to a quack site. I would be obliged to you if you'd edit your post and remove the link. The outfit that runs that site refer to heavy metal poisoning, ozone therapy for AIDS and other psuedo-scientific bullshit. It's really not appropriate and I'd prefer not to have my threads associated with it.

Everyone else,

Thanks for the kind words of support. The pain/anti-inflammatories are making a real difference. I can walk much more easily this morning and the pain is quite bearable. I'm confident that I'll have this thing knocked on the head very soon. You should know that your love and kindess has made this unpleasant time much easier to cope with.

MtD

[RAB]

Matty:

All the "kiss, kiss, hug, hug, love ya, mean it" aside.  You know damn well what the obvious choice you are facing is.

Cleverly worded posts aside, posturing about temporary relief aside, expressions of gratitude aside.  Knock the BS off and get serious!

JUST SAYIN!!

RAB

(Who tires easily and thinks sometimes it's better to just lay the friggin cards on the friggin table!)

(Kiss kiss, Hug hug, love ya Matty!  Mean it!   )

[Life]

Matty, best in what you decide...

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[gerry]

Matty:

Here are some abstracts to case reports regarding a specific type of leukocytoclastic vasculitis that occurs rarely in the course of HIV.  There's a fancy term dedicated to it, too: erythema elevatum diutinum (something new I learned).  If this is the diagnosis your docs were referring to, the good news is it responds to dapsone.  I don't have on-line access to the entire articles (perhaps R or Tim does); I usually request print versions when I need them, but that takes time.

Erythema elevatum diutinum in a patient with human immunodeficiency virus.

Erythema elevatum diutinum in human immunodeficiency virus-infected patients--report of a case and review of the literature.

Erythema elevatum diutinum as a first clinical manifestation for diagnosing HIV infection: case history.

If it's not this specific type, but just the general leukocytoclastic vasculitis, dapsone may still be useful in the same manner, but a course of prednisone might be needed as well.

Hope this helps.

Gerry


EDIT:

The last article was available online, although it's not a very well written one, but it cross-references other abstracts at the end.  Here's the link.

[HIVworker]

Gerry,

I looked to see if I have access to those articles and I do, but I have to order a paper version of them, which isn't very useful for Matty. I did look at some references and came across this article that speaks to the condition under discussion. It is from a paper called,

"Erythema elevatum diutinum, a clinical entity to be considered in patients infected with HIV-1"

Rather than breach their copywrite and get into trouble, here is the conclusion of their paper (that discusses clinical manifestation)

EED has been described in association with various haematological abnormalities, recurrent bacterial infection, rheumatoid arthritis, ulcerative colitis, HIV-1 infection and many other conditions; several authors speculate that HIV infection provides an antigenic stimulus for EED. To the best of our knowledge, only 15 HIV-infected patients with EED have been reported previously but it seems likely that EED in HIV-infected patients may be more common thatpreviously thought, and that the condition should be included in the differential diagnosis of skin lesions affecting HIVpositive patients.

I am not qualified to say whether you have this condition nor to suggest treatment for it. However, what Gerry has said to you appears to be consistent with what they discuss in the paper (is anyone surprised by that? ).

I hope that little bit helps. I am sorry I can not be of more use...

Rich.

EDIT : I cleaned up the abstract I posted so it is in a readable format

[Ann]

Matty,

I've got the full text of the first article - sending it to you via PM.

Ann

[Ann]

This excerpt from another article might be useful as well as it discusses other possible medications:

EED also has been reported in association with many other diseases. A significant number of patients with EED have hematologic abnormalities including B-cell lymphoma, hairy cell leukemia, myelodysplasia, myeloma, mixed cryoglobulinemia, polycythemia vera, and hypereosinophilic syndrome.26 In addition, gastrointestinal diseases such as ulcerative colitis,10 Crohn's disease,27 and celiac disease,, have been observed in conjunction with EED. Infectious diseases that are associated with EED include hepatitis B,28 streptococcal infections,4,13,23,25 and HIV infection.4,12,18,29-32

Dapsone is the treatment of choice for EED. Numerous reports have detailed dramatic clinical improvement following the initiation of dapsone therapy. Complete healing of lesions generally occurs within weeks to months of starting therapy. 33-35 Despite these favorable results, dapsone does have some limitations. Because dapsone is a suppressive rather than curative therapy, withdrawal of dapsone usually results in prompt and severe recurrence of disease.7 Furthermore, nodular lesions with significant fibrosis respond poorly to dapsone. Dapsone also is limited by potential adverse effects of methemoglobinemia, hemolysis, and agranulocytosis.36 The process by which dapsone suppresses EED is not completely understood. Proposed mechanisms include stabilization of neutrophilic lysosomes,37 interference with deposition of complement,7 inhibition of myeloperoxidase,36 and blockage of integrin-mediated neutrophil adherence.36

Other medications that have shown to successfully suppress EED include niacinamide,28 phenformin,38 colchicine,39,40 and sulfapyridine.5 Excision and intralesional steroids have been used for cases of limited disease.

Appropriate treatment of associated diseases is also important in the management of EED. Flares of EED tend to coincide with exacerbations of the associated disease. This phenomenon has been observed in those cases associated with HIV infection,19 celiac disease,22 and streptococcal infection.4 EED is a chronic condition and, if left untreated, the lesions will persist for years with intermittent periods of remission. The longest reported duration of illness is 39 years.5 In this case, the rapid improvement of our patient due to dapsone was not expected given the chronicity of the disease but highlights the sometimes unpredictable clinical behavior of EED.

Erythema elevatum diutinum mimicking extensive keloids
Ravi S Krishnan,  Linda Y Hwang,  Jaime A Tschen,  Paul Subrt,  Sylvia Hsu. Cutis. Chatham: May 2001.Vol.67, Iss. 5;  pg. 381, 6 pgs

I'll send you and Gerry the full text of this article via PM.

Ann

[ademas]

I feel for you, Matty.

I have psoriasis (relatively mild) and psoriatic arthritis (moderate-severe), and just tested positive for rheumatoid arthritis. 
I also have some bizarre condition known as dupuytren disease, which is thought to be a "spontaneous disturbed-tolerance auto-immune disease."  (WTF?)  It's caused nodules along the tendon of the palm that are slowly drawing my pinky finger toward the palm.

In short, I'm a mess--but on the bright side, I hardly notice my neuropathy anymore! 

Sorry, dear.  I truly do feel for you.  I would give my right arm (or at least my left hand and six of my toes) that you didn't have to go through this.

I know you don't want to, but I would start HAART and get my numbers up some, as so many of the treatments for arthritis and immune disorders are actually immunosuppresants. 

Just my 2 cents, and maybe not worth that, but do know that my good thoughts are heading your way.

[Matty the Damned]

Ann, Gerry and Rich -

Once again mad props to you guys for going to all this effort. The information is most helpful and informative. I can't thank you enough.

Ademas,

I've been following your thread about your athritis and other problems with interest. Even before I was struck with this odious condition. It's a dreadful sort of pain, is it not?

I hope you get the relief you deserve. I'm thinking of you pet.

MtD

[Christine]

Hi Matty,
I don't have any experience with dealing with an auto-immune oi, so I just wanted to send you my good thoughts.

Know that I am thinking of you, and hoping you feel better soon. I am glad the pain killers bring some relief. Big hugs to you!!

Christine