Wegeners and Chicken Pox

[dunkie2202]

Question and I hope someone knows the answer...
The one thing my doctor said to me after finding out I had Wegeners was stay clear from ppl and kids who have chicken pox or shingles.... I didn't ask Y

How dangerous is it for us???????

I'm still on Cytoxin had third dose friday, just found out last night that my son, grandson and future DIL (whom live with us) had a visit last weekend with her family and her two younger sisters have chicken pox. They went down there because I didn't want the little one around me after chemo for three days.

My Grandson turned one yesterday and so I've had very close contact with him. Argghhhhhhh
I sent him away to protect him from contact with me and perhaps he's now brought something back to me.............:predrage:

[DEE]

not 100% sure but i was give a list of times when must inform medical team and contact with chickenpox was one of them , i seem to remember them saying they needed to give treatment to protect you
hope this is of some help i always work on if i dont know ring the people that can sort it for me
has work on several occasions
hope things work out for you to DEEx

[dunkie2202]

Thanks Dee, I think I'll ring the doctors today and ask their advice. Better to be safe than sorry hey.

[marta]

Hey Dunkie, I don't think they can do anything to protect us from chicken pox/shingles (same family of viruses) once we're on the 'cocktail' because the vaccine for it is a live vaccine and our bodies can't handle a live vaccine. Also when adults contract chicken pox it hits us way harder than kids and can have nasty complications that are hard to deal with even if you're not on our particular cocktail of goodies. I think this is why they tell us to stay clear. Because they're viral the only way to protect people is with vaccines and once contracted all they can do is keep an eye out for complications and let the virus run its course while alleviating the symptoms. I definitely think you should see your doc and let him/her know that you might have been exposed. They'll probably end up keeping a close eye on you for a bit - the virus' gestation period is 2-3 weeks so if you've been exposed it'll take that long before you see any symptoms.

Hope that you feel nothing yucky for the next several weeks and your fears don't come to fruition.

[jola57]

Hi Dunkie, I assume none of you had chicken pox previously. Like Marta said watch for signs and let your doc knoe that you may have been exposed.

[dunkie2202]

Hi Jolanta, I've already had chicken pox as a kid. I didn't catch it when my four boys had it 19 yrs ago. I've heard that you can get it more than once and I surpose that we would be more inclined to catch it with no imunnity. But I will let my Dr know its about. Marta funny you mention our cocktail of goodies, one of the tablets they put me one from the start is Valtrex ( the one prescribed for shingles ) I take it daily so I guess there's probably not much else I can do but fingers crossed.

[marta]

Hey Dunkie, I think you're pretty safe if you've had it before and didn't catch it when your boys had it. I think once you have the antibodies in your system you're playing on the safe side of the fence. I guess there is weird anomalies that might make you catch it more than once, but I think you've used up all your 'strange, crazy odds' by catching WG, so I'm thinking you'll be fine on this particular front:wink1:. Besides if you've got all your bases covered, you shouldn't be worrying about this as stress is proably more dangerous than the virus by the sounds of it. Take care and go and throw your feet up and have a doughnut (pred Marta is projecting).

[andrew]

I had a similar issue a year or two ago when a friend's kid had whooping cough. I was told by my doc to stay well away from them. Within that same conversation we discussed things such as mumps and chicken pox, both of which I had as a kid. Doc explained it as my immune system, after going through the wringer like it does with WG, would have completely 'forgotten' that I'd had these and I'd be an odds-on favourite to pick them up again. I think the same would apply to most/all of us.

[elephant]

That is what I was told too by a immunologist. I worry about it often because I have two small kids and I don't know if my children's friends has been immunized (MMR). I was told that if I got the measles that I would be hospitalized, it can get in the lungs. Basically it can kill us. One reason why I don't work in the hospitals anymore.

[jola57]

We can get anything and everything, we are immunocompromised

[marta]

I had no idea that all the dues we had paid as children are null and void now. I wasn't told this when I left the hospital. What a bummer.

[dunkie2202]

WOW that sucks....I've got six small grandchildren to worry about catching childhood diseases from now too... hey thanks guy's and girls for the input....much appreciated

[Doug]

I regard the necrosis of my right mandible (top 50% or so, with loss of all teeth, of course, in that quarter of my mouth since the bone was dead) as an effect of Wegener's granulomatosis more that the herpes zoster attack I suffered in 2007.

My pulmonologist (doctor most of my treatment for WG comes from after the initial hospitalizations at diagnosis and for the month and a half of hospitalizations after....) and I discussed this at the time, and we agreed on that.

The oral surgeons who performed the surgery to trim out that dead bone, however, see it through their specialty, and this episode was something like the 40th known instance in their specialty. That, of course, meant that their fees were picked up- no charge to me- since they got a paper out of it, full of lovely photos of my mouth and scars from herpes zoster.

I mention this because necrosis of the mandible seems to be one outcome of this hellish disease, WG! That alone is a good reason to avoid exposure to this disease on top of what we have.

[marta]

Whoa Doug. That sounds like a horrible experience. This is where I really see a little bit of denial on my part when it comes to this disease. Yeah, no kidding stay away.

[dunkie2202]

OMG Doug...hellish disease is an understatement....What the hell did we do to deserve this???? I'm devistated and I've only known i've had this for 9 bloody weeks....

[Jack]

I suppose the only good news is that it is so unpredictable that you cannot read across directly from one person's experience to another. I for one always live with the idea that it is not going to happen to me even though experience sometimes points out that I may be wrong. For every patient having a bad time, there are probably many who are living quite happily at their New Normal and have little reason to participate in the discussions on the Forum - it perhaps gives a distorted picture?

[Doug]

Exactly, Jack. The herpes zoster hit me on the right side of my face. My understanding is you tend to have it in the same place you experienced chicken pox as a child. That makes no sense to me particularly sense I thought chicken pox hit you everywhere. I was 8, I think, when I had it, so have no memory of the fine detail. Anyway, the other detail: learn the symptoms because the longer it takes you to seek medical care, the more the damage to the nerves concerned. I had the disease several days before I could get in to see the doctor, by which time I was a basket case. This an emergency room matter for weggies. I ended up being transported by ambulance to a regional hospital three hours away. My experience is exceptional, even if viewed through the filter of WG, not herpes zoster.

[gwenllian111]

My two have had chicken pox when I was immunosuppressed, and I personally had no reprocussions from this. I had chicken pox as a child myself, and assume i have some immunuity against it.

[Doug]

That's great to know! It would be difficult not to have contact with your children when they need a little loving from Mommy! You didn't have plasmapheresis, did you, Gwen? My question of anyone who knows would be how safe one with a history of recent plasmapheresis would be in this circumstance.

[Jack]

I asked this question and was told that Plasmapheresis has no effect on previously acquired immunity.

[JanW]

I agree with what Jack says. There are so many variables with this disease that no one who is newly diagnosed should assume that they will end up with any problems anyone else on this board has, and, of course, there are many out there whose lives may have changed only a little having this disease, so that they might not even seek the kind of support one gets on a message board.

[Sangye]

So true! Also, the docs don't really know what's left of our antibody history once we start these drugs. The body can be very sneaky about hiding info like that.

Just looking at the mechanism of action for each drug, it seems to me that rtx would do the most damage to one's antibody history, since it destroys all B cells (antibody-producers) for several months. However, here we have Gwen who's had lots of rtx and still didn't get chickenpox when it was "offered." I think the take-home message is use reasonable cautions to protect yourself from infections but don't worry yourself to death.

[Geoff]

I think the take-home message is use reasonable cautions to protect yourself from infections but don't worry yourself to death.

I whole heartedly agree with this simple, basic idiom. Regular hand cleaning, keeping your fingers away from your mouth etc. But above all try and keep an upbeat attitude!! (Yes I know its hard but consider the options):biggrin1:....on second thought dont!

[dunkie2202]

I agree with what Jack says. There are so many variables with this disease that no one who is newly diagnosed should assume that they will end up with any problems anyone else on this board has, and, of course, there are many out there whose lives may have changed only a little having this disease, so that they might not even seek the kind of support one gets on a message board.

I never assumed I would have the same problems as everyone else...it's a pity I wasn't one of those people who's life hardly changed at all from this disease. (how lucky they are) I thought this was a forum for fellow WG's to ask questions..... not get shot down in flames...Perhaps it was a mistake to join here.

[Jack]

Hi dunkie,

I'm not sure what you are reading into this post, but I can't see anything that could be interpreted as an attack. That is just not how this Forum works. :sad:

I'm sure that Jan was not aiming anything at you, she was just reflecting on my post mentioning that all cases are so different. This feature singles out Wegener's to some extent in that there is not much in the way of a standard treatment protocol or definite prognosis. Also, the Forum may not be representative of typical cases since the less severe ones perhaps post less often.

The Forum is a place where you will not be judged or attacked and can feel free to express your feelings to people who DO understand everything you are going through and will sympathise. They will even forgive you if you're having a bad day!

[elephant]

Dunkie, even though I am in medical remission( taking four medicines to keep me in remission), I plan on staying on this forum because I have become attached to all of you guys and I love helping others when I can. Since I can't work as a clinical RN, it makes me feel like I can contribute. Everyone is different, some people get into remission and just need to move on and so forth. Dunkie, I am glad you are on this forum!:biggrin1:

[Sangye]

Dunkie, I interpreted Jan's comments as trying to comfort you, definitely not attacking or criticizing. It's very common for new members to read the stories on here and think it's all going to happen to them, so we often let them know that's not the case. Many have breathed a huge sigh of relief hearing that! :smile1:

I joined this group 2.5 years after diagnosis. I didn't know anything about other Weggies or their cases. I was terrified to join a support group because I was having such a hard time with my own case and maintaining hope, that I didn't think I could handle hearing things might get worse. When I read everyone's stories, I felt so sick, like I was doomed. We don't want anyone else to have that fear, because it's not based in truth.

Please know that this is a safe place for you to share. You will not be attacked-- we don't allow that. I've been in this group for 2 years now, and there have been a couple misunderstandings. But every time we've cleared things up and I'm good friends with anyone involved. You can express any of your feelings here and expect to be heard, validated and comforted. I hope you'll stay. I've enjoyed getting to know you so far. :hug1:

[JanW]

Absolutely Dunkie, I was only trying to suggest that it may only get better from here, and people can go into remission or be relatively symptom free for long periods of time with this disease. WG by no means is a disease of persistent, progressive decline.

How you feel is how you feel and I (nor anyone else here) would ever try to invalidate that. Many here know that my ongoing symptoms are less severe than many others (although I have had a serious surgery due to the disease and have been disfigured by it), but they have never made me feel that I cannot participate because I can work, enjoy my kids, and get through the day mostly pain and fatigue free. My doc has a patient he has never even treated medically who has 100 percent certain (dx via biopsy) WG. So you just never know.

[Doug]

Dunkie ~ Please stay aboard! Each person's story adds to our all-over understanding of what it is to be a weggie. I can vouch for Jan W. She is a very sweet and dear lady who brought us news of the Vasculitis Foundation conference in California recently, from the perspective of a weggie journalist in attendance. It was some of the newest and best reporetage on our disease I've read lately, and a comfort to read: There are people out there working on the disease, to control it, to cure it, to deal with the issues each of us weggies deals with day in and day out. Jan's reportage was done on her own initiative, and was well-received here.

I can vouch for the misunderstandings that can come of reading quickly through comments or reading into comments. Just ask my pagan friends on the forum! Ha! (I still love and respect you!) It happens. No one will hold anything against you. We are in this together.

[JanW]

Thanks for your kind words, Doug!

[Doug]

We're here for each other, Jan!

[dunkie2202]

My deepest appologies for miss reading into your thread Jan. I have been pretty emotional the last few weeks. Prednisone Paranoid... I've just spent the last week back in hospital and finally home again. Damn bug's.... I had one in the bowel, one in the bladder and apparently one caught from hospital MRSA . Went off the fluid tablets and have absolutly bloated......They put me in isolation to protect me from any other germs and to protect everyone else from getting MRSA. Filled me full of antibiodics via drip. Up'ed my dose of Prednisone from 20 to 50 without disgussing with my Dr. She flipped when she found out. Any way med's are now sorted, I'm home and feeling much much better.

[elephant]

Dunkie, I am glad you are out of the hospital. I know how prednisone can make you feel, up and down,angry, mad, sad and happy. I think when I was on 50 mg, I did not even call my friends! I ate the kitchen instead!

[flana]

I had done some research and put down some thoughts when I contracted Shingles... from my blogspot... please note that I still use the creams etc. as it is still not gone since more than year and a half.


In a months time I developed rashes or something that appeared like rashes all over my bottom and immidiately saw my primary physicians who thought it might be Herpes and suggested I see a dermitologist. My Rheumatologist secured me an appointment with Dr. John Kasch, another real nice guy with tonnes of experience. He diagnosed it to Herpes Zoster (Shingles) at the back and Fungus infection at the groin area. Well medications started (Valtrex for antibiotics and a whole bunch of creams - hydrocortizone, econozole, triamnicinolone) and things started to improve in about a weeks time. Had a real hard time until things quitened down a bit. It is much better now, but I still continue with the medications (minnus the valtrex).

A note on Herpes Zoster:
"Shingles" results from reactivation of the virus that causes chicken pox (Varicella zoster). Nearly everyone who is now older than five had chickenpox at one time, generally as a child. Normally, even after the rash and other symptoms of chickenpox subside, the virus that caused the sickness continues to reside in the body in a dormant state, "hiding" in the root of one of the nerves somewhere along the spine. Decades later, as the immune system wanes slightly with age (a normal part of the aging process) or when the immune system is suppressed (by medications like cyclophosphamide), the virus becomes active again.
When it reactivates, Varicella zoster usually causes a painful rash in the distribution of a single nerve, such as over one side of the face or down one arm. The rash is characterized by groups of small vesicles (blisters) sitting on a base of reddened skin, and may be extremely painful. "Shingles" is treatable with anti-viral medicines such as Acyclovir or Famcyclovir. These should be instituted as soon as possible. Narcotic pain medicines may also be necessary for several weeks. In a small minority of cases, "shingles" results in pain that can last for months. This condition is called "post-herpetic neuralgia".

[elephant]

Thanks for the information Flana!

[dunkie2202]

Thankyou for the information Flana....I have been on Valtrex since I was dx with WG 12 weeks ago.

[flana]

Thankyou for the information Flana....I have been on Valtrex since I was dx with WG 12 weeks ago.
On Valtrex since 12 weeks? Is it OK?

[dunkie2202]

yep been on them for 12 weeks... I seem to be ok. They are weening me down on my Pred, I'm now on 10mg plus I take Valtrex & Dapsone because I can't take Bactrim as well as the usual vit d, caltrate, blood pressure, fluid tablets, calcitrieol...

[Sangye]

Dunkie, why are you on Valtrex?