SLE and HSV-2: treatment of both possible?

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kimberlyrenee
Regular Member


Date Joined Aug 2009
Total Posts : 43
   Posted 12/14/2009 8:09 PM (GMT -7)   
I was diagnosed with SLE in August 2009 and HSV-2 (genital herpes) in October 2009. My lupus has also been flaring for months, and I have been on 5mg of Prednisone and 200mg of Plaquenil since August. The herpes outbreaks have been constant and extremely painful for the last 2 months, even while taking regular doses of Valtrex (1GM every 12 hours) the entire time.

I went back to my OBGYN this week and he said that the reason the Valtrex hasn't worked (or even helped) could be because of the immunosuppressive lupus medications. I don't know why he didn't think of this before because he's known about my situation and meds since I first saw him, but now he and my rheumy have decided to take me off all the Prednisone to see if the Valtrex will work. Which sucks, because steroids (Pred and monthly cortisone shots) are the only thing I can tell has helped at all with my lupus.

Has anyone else with HSV-2 and lupus dealt with these contradictory medication problems? Or Valtrex not working? Any suggestions about something else to try or a combination of things that have helped anyone else living with these two things? The pain is intense and I need the herpes to finally let up so I can try to get my lupus under control.

Thank you for your help in advance...
kimberly~

SLE, raynaud's, CFS


Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 12/14/2009 10:23 PM (GMT -7)   
I find that very odd. I have been on Plaquenil and Prednisone since 2002 for SLE. Also have been on Valtrex much of that time for HSV-I (oral herpes, fever blisters). I can go a few months without the Valtrex and without blisters, but if I have a lupus flare and start getting regular fevers I have to take the Valtrex to keep the blisters away.

So my experience has been that the Valtrex works just fine with my Pred(15mg to 4mg) and Plaq(200mg)....

I'm wondering if maybe you have something else going on that is keeping the HSV-2 triggered...a yeast infection comes to mind as I also take Nystatin, a med for the treatment of system yeast (vaginal & oral & stomach)? Dunno, just thinking out loud.

I hope something works quickly for you -- can't be pleasant at all,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


kimberlyrenee
Regular Member


Date Joined Aug 2009
Total Posts : 43
   Posted 12/15/2009 2:51 PM (GMT -7)   
Is Nystatin prescription or otc? I feel like I may need to find another gyno...
sle, sjogren's, raynaud's, alopecia areata, cfs

"Don't hold back in mourning your old self and abilities. Reassure yourself that it's normal to be sad about it and okay to admit it. Only when you allow the emotionally protective walls you’ve spent years constructing fall to the ground, can you begin to take steps toward healing. And only then can the rebuilding begin." -Sara Gorman


Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 12/15/2009 4:01 PM (GMT -7)   
Nystatin is prescription, but I don't think a gyno would prescribe it -- they'd probably stick to the genital treatments.

I was given it by my rheumy because I was having multiple vaginal yeast infections, ongoing thrush (oral yeast) and stomach issues associated with internal yeast issues. The individual treatments just weren't doing the trick, this was what we tried after a year or so of treating everything individually.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/15/2009 4:02 PM (GMT -7)   
Maybe a gyno who specializes in STD's? Just a thought, don't even know if there is such a thing.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 12/16/2009 10:36 PM (GMT -7)   
I think lynnwood is right about the two being able to work together because my mom was on a high dose of entocort and got shingles/sores/herpes and was on valtrax and it worked for her eventually. Maybe because prednisone thins tissues, like skin, the herpes seems to last longer, but the medications are still working, its just harder to heal. Also, my mom was put on nystatin treatment too, sort of a shotgun. You may need to get your rheumie involved in solving this. MAybe you need a higher dose? Maybe something else is constantly triggering it like lynnwood said. The rheumie should help you, they get these problems all the time and are good at workingout solutions usually.

Right now, I have staph infection from a bug bite and it feels like herpes. I hope you get better soon,the pain is bad. You might check into the shingles vaccine and whether it would help at all with herpes, its verysimilar virus. I don' t know about that.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


kimberlyrenee
Regular Member


Date Joined Aug 2009
Total Posts : 43
   Posted 12/18/2009 1:01 PM (GMT -7)   
thanks for all the info. it turns out that the gyno I was seeing didn't even do a herpes culture until the 3rd time I saw him... he said it looked so stereotypical that he didn't think a culture was necessary. it was negative. now he's treating me for a yeast infection... the "sores" are broken skin from itching.

they're keeping me off the pred until it clears up :[ and prescribed fluconazole for 4 weeks and an estrogen cream?

i hate having to manage the judgements of doctors on top of everything else. because he didn't do any test the 1st time he saw it, i spent over $400 in prescrips and office visits based on a wrong diagnosis. so frustrating >:[
sle, sjogren's, raynaud's, alopecia areata, cfs

"Don't hold back in mourning your old self and abilities. Reassure yourself that it's normal to be sad about it and okay to admit it. Only when you allow the emotionally protective walls you’ve spent years constructing fall to the ground, can you begin to take steps toward healing. And only then can the rebuilding begin." -Sara Gorman


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/18/2009 1:23 PM (GMT -7)   
Glad we helped you find the right answer -- that 1st gyno is not to be trusted!!!!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 12/20/2009 8:18 PM (GMT -7)   
I only got my sore that is over a month old cultured a few days ago. They just treated me for staph and it got worse. Yeast infections are different with AI disease than they are normally, it seems you can get them places you never thought you could, they can really make ugly painful sores, and they can last much longer. I'm glad you got it figured out. I have three different treatments for them--nystatin mouth wash, noritate (metronidazole)cream,and the otc stuff. It can be a real battle. Diet should help maybe...
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/20/2009 10:49 PM (GMT -7)   
Marji,

If you are having multiple variations of yeast tha having trouble getting them to heal, you might ask your dr about Nystatin -- it is a fairly strong systemic treatment I was started on when I had 3 infections around. It stopped it in it;s tracks and has kept it away for quite a while now.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

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