Desperately need some help !!!!!

Posted , 5 users are following.

18 years ago i started with a malar rash on my face after being in the sun. Had a positive ANA speckled 1:320 and a positive SSA . Had some joint pain and some fatigue and stiffness.  Went to Rheumotologist and he wasnt convinced that i had clinical evidence of Lupus or Sjogrens. Just treated me with vioox and mobic. Then 8 years ago finally went to Dermatologist and confirmed cutaneous lupus. So i was given plaquenil to take . I took 400 mg for a few years then tapered down to 200 mg a day .  I felt great on it. Eventually the malar rash dissappeared , joint pain gone , no swelling just feeling good.Then a few months ago i got what looked like an allergic reaction ( rash )  on my right side of forehead , hairline and my eye got all swollen. Went to Dr. Thought it was an allergic reaction . I had never taken prednisone in my life .  Gave me a shot of kenalog and gave me predisone for 5 days . In between that time i had to go back to dr because of this terrible pain where the rash was on my forehead. I also had a few pustules that looked like chicken pox on right side of body . Dr. determined it was shingles. I recovered very quickley as a matter of fact all the pustules were dried up in a few days. Then after i finished the predisone i got this sore on my labia. Turns out it was genital herpes. Never in my life had i experienced anything like this. I have had one partner my whole life so how could this happen .I have been married for over 35 years and now thiis . I was devastated .Am 60 and all my children are grown and what in the world am i doing dealing with this at this age .  I was told that probably i got infected at one point and the predisone woke it up .So I was given valtrex for 10 days. On the 9th day i had an episode of A FIB . I had had only one episode of A FIB 7 months before and i was taking Z Pack . So i was given a different blood pressure medicine to control heart rate i converted back to sinus rhythum by myself. Since then i have been having outbreaks every 3 to 4 weeks. Went to see gyn today . They seem to think that my immune system is shot . Offered to be put on another anti viral but hesitant because of the A FIB .The gyn told me that since i am not having any  relations that i shouldnt be getting outbreaks so often .I told them that i was getting very doubtful wether i really had sjogrens and the only reason i was put on plaquenil was because of the cutaneous lupus.  Recently went to a new rheumatologist and  my blood work showed .ANA positive , homogeneous, 1:80 , SSA positive , SSB negative and ESR 31 . Everything else normal.My gyn is very concerned because she says if my immune system is so down that maybe i should consider stopping plaquenil .  I also have felt the same way. I am not totally convinced that i have sjogrens or maybe a mild case . I talked to my new rheumy about this herpes situation and that i wanted to stop taking the plaquenil but all she did was say that plaquenil is not that strong like prednisone and other bio's and to address this with my gyn . Unfortunately there are not alot of rheumatologist in the area that are good mine just retired . So I dont know what to do . Has anybody ever stopped taking plaquenil . And how long does it take for your immune system to come back up ? Also read about L lysine and vitamin C  if anybody could recommend a good brand or any suggestions . This herpes thing is getting to me and I just dont know what to do . And i am so sorry for this being so long . Just thought maybe somebody may have had something similar happen to them . I would appreciate any suggestions. Thank you all.

1 like, 7 replies

7 Replies

  • Posted

    Hello Sunflower, I see you have had no replies to date so I will try to give you some encouragement although I state with emphasis that I am a biologist but am not in the medical profession so my knowledge is limited to what I have read and what I have experienced in my 72 years on this planet.

    I don't know how much background reading you have done so I may be telling you what you already know.  Many people who have had chickenpox as a child will have attacks of shingles, more so as they age.  My understanding is that the virus 'retreats' to the spinal cord where the immune system cannot get at it then remains dormant, usually for decades.  Then in comes down a nerve and appears as shingles.  A low immune system is one, but only one, of the causes listed (and I am not at all convinced it is a cause); I have a friend, in his 60s at the time and in very good health, who put his shingles attack down to a visit to the chiropractor.  The genital herpes virus, being a different strain of the same virus, does the same thing and you would not the first one to have it appear, as if a new infection, many years after being infected.  Some infected people never show any signs but can still infect partners.  If your husband has been your only partner, then you have contracted it from him, from an infection he got either before you were married or after - no matter what he says.  It is common, after the initial appearance of blisters (and this is the first time for you), for there to be flareups during the following months but mostly these taper off to the point where they don't occur at all.  On what grounds has it been decided that your immune system is 'shot' when the only really abnormal thing in your blood work is an ESR of 31?  Remembering that after each flare up the virus goes back up the nerve and lodges in nervous tissue, even if you do have a 'low' immune system it should not be causing it to travel back down the nerve and if you have an autoimmune disease, my understanding of autoimmune diseases is that your immune system is over rather than under active.  Also, and this may be news even to gynacologists, anti-viral drugs will stop the blistering but will not stop the virus travelling back down the nerve.  'Having relations' may affect the incidence of flareups in some people but that is most certainly not the only cause as flareups are not reinfections.  I have never heard of prednisolone (its name in my country) 'waking up' an infection, nor have I understood either prednisolone or plaquenil to be immune suppressants.  You are obviously very stressed and distressed about all of this, with good reason; stress itself is often cited as the cause of both a shingles outbreak and genital herpes flareups.  

    I will add, but do not tell them I said this, that not all doctors know what they are talking about, particularly, but not exclusively, when it is things outside their area of expertise!  Do not accept everything they tell you at face value.

    Now, after all of that, I want to say this to you: genital herpes is just an infection like any other infection except that it recurs now and then, at least initially. The incidence of it is huge.  Do not distress yourself about it because it is an STD; it is no big deal.  Try to think of it as a bit of an inconvenience that will pass, pretty much like a cold, expect an occasional flareup and think 'ho-hum, here we go again', and deal with your other health issues as if it wasn't there.

    It has been nice talking with you Sunflower.  I hope I have helped.

     

    • Posted

      HI Mauren , thank you so much you made me feel alot better. It's just beem getting to me because i just had an outbreak and after it heals this time was 8 days i just got another one . So i am really confused as to why this is  happening so soon. I have been very careful about tryjing not to spread it  so am alittle confused . Is there something that i am missing.? I try each day to have a positive outlook especially since we have a family vacation coming up and i want this thing gone at least for that week so maybe am stressing even more. I dont know what else i can do . I am taking vit C and D3 and eating garlic and looking into l lysine . Also i wanted to find out about coconut oil ? What  kind of coconut oil is best refined or unrefined ?  I was using acyclovir ointment but it doesnt do anything .I am trying to stay away from the anti virals until at least i come back from vacation just incase it triggers the a fib .  I have a Dr. appt with my primary this week to see if she has any suggestions . Concerning the plaquenil when i went to gyn i dont know but she basically was blaming the plaquenil . That if i stopped it it would give my immune system a chance to come back and fight this thing. I brought my concerns to my rheumatologist but they left me a message that if i was concerned with my immune system to go see a immunologist . So any suggestions as to anyother supplements or foods that i can eat . And what's funny i feel really good now physically , no a fib etc except theses outbreaks that mess up everything down there . I really appreciated that you took the time to write me . And i greatly appreciate any suggestions . Thanks again have  a great day .

  • Posted

    Hi Sunflower:

    There is another way you may have gotten your herpes: the birth canal. Herpes is one of the reasons there are more and more caesarians. If your parents didn't know they had it, or their obstetrician was unaware either of them having it or that it could be passed through vaginal delivery ,,, I'm not casting aspersions on your parents, just saying that there was plenty of ignorance to go round regarding herpes prior to 1982 in the States. I don't have herpes -- grace of God & sheer dumb luck because i was way too active from '69 - '80s. I do no t know if it's something that can be passed through breastfeeding. I only know about the birth canal aspect from friends who had to have caesarians.

    I got shingles at 37, after 2 or 3 injections of high dose steroids into an SI joint. From what we're seeing now, perhaps the steroids all8w shingles to come out. Is it coincidence that no one in my huge family of brands from the 1860s-'70s, aunts & uncles from 1900-1916, and all my parents friends, neighbors, etc., ever got shingles, but nor were they being hit with steroids left, right and center. Nowadays we're all getting knee injections & steroid pills for every bad cough, and everyone gets shingles. All those relatives of mine had had chicken pox, and almost all of them lived at least to 80.

    Don't beat yourself up about the herpes because nobody knows how far back this goes. It is indeed just another illness. YOU did nothing wrong.

    • Posted

      Thank you aitarg, I did not know that fact about herpes being able to be passed on through the birth canal.  Thank you for correcting me; Sunflower is distressed enough and I would hate to add to her distress by giving her incorrect information.
    • Posted

      Thank you Altarg , for taking the time to answer my concerns.You are right I did nothing wrong !! I have to keep reminding myself this .  As too my parents , I didnt know this either but who knows .And you are absolutely right the drs are handing out steroids like crazy , i too have been prescribed them in the past  but i neveer took them because i know they are  bad but this time i had no choice because my eye and one side of my face was all swollen otherwise i wouldnt of taken them .  When i asked the gyn why did this come out all of a sudden because never in my life had i had any reason to believe that i would ever end up with this she said that the prednisone had caused it to come alive . I guess they cant think of another reason. So for right now i am trying to take one day at a time . Praying that this outbreak will go away soon and not get hit with another which is whats been happening . Any ideas as to why this is happening as soon as one heals i get another .This is what is frustrating me . At least if i got a break i could handle this better . Any suggestions would be greatly appreciated . Also thank you for your kind words , i am so thankful for this forum because at least you all have gone through this and know how it feels .
    • Posted

      Sunflower, it may be time for you to write a note, listing all of your doctors st the top and sending a copy to each one. Tell them that you need them all to work together rather than each one saying that your problems belong under some other specialty.

      Regarding what the gyn said and the rheumatilogist's reply by phone message: is it possible that the gyn said that your autoimmune system was out of whack and then you accidentally just referred to the immune system in your message to the rheumo? I ask because if this happened in the States, rheumos and immunologists are completely separate and officially not allowed to dabble in each other's realms, and an American rheumos would surely leave such an unhelpful message every time.

      It is all confusing even when one is fortunate enough to not be dealing with as many flareups as you've got going on right now. I don't have much to suggest except this:

      - try a dermatologist. Sometimes they go straight for controlling skin outbreaks without so much hullabaloo. My ex had weird outbreaks on the soles of his feet. No one ever figured out what the stuff was but the dermatologist 's cream helped tremendously, and then the problem disappeared after about a few years. If he'd used the cream daily rather than waiting for outbreaks, maybe it would've ended sooner.

      - try acupuncture. I've no idea if it can help in this circumstance, but at least they'll be more direct. PM me if you want to know generally what to expect.

      - go to Healing Qi Gong (pronounced chee-gung) You can buy a DVD & do this at home every morning but it is good to go to a few classes to learn correct posturing. The program I do is almost all from a sitting position on a sturdy chair. If nothing else, it is very calming and refreshing. My old instructor always reminded us to send our minds to a restful vacation spot while doing the exercises.

      - alternatively try a chiropractor if you believe in chiropractory.

      - yoga, but not kundalini nor the high-temperature/ultra sweating kinds

      - check out the herpes forum

      - see a naturopath or an osteopath. These may send you on radical life change paths which might not work til after vacation.

      One thing is certain: worry and fear make everything worse, hence my suggestions of Healing Qi Gong & yoga as both of these will help de-stress both mind & body.

      I wish I could promise you better results. I'll keep you in my prayers.

    • Posted

      I want to sincerely thank you Aitarg for all the suggestions. I will be seeing a dermatologist next week and my primary this week so I will be voicing my concerns . Hopefully they will have some answers . Thank you for keeping me in your prayers . I really want to join my family on this vacation so I hope that at least that week things will mellow out . I will keep you posted . Have a great week

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