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Hi Dileep,

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I am quite happy that my shingles are are gone upto 65 to 70 % and turned into black dots..I am woundering that it is gone in just 2 days and expecting the remaining to go off in another 2 days..I will start my UV treatment from next week..
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Its good news that your shingles are recovering fast. As for the time, you need to restart using protopic and radiation therapy, your derm will be able to tell you better.

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AGain i am worried if i use Protoopic..what do you say..what is vaccine ??
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Vaccines are medicines given through injections to prevent a disease attacking you in future. Something like polio and hepatitis vaccines given to children in their infancy. For shingles there is a vaccine named Zostavax, which is FDA approved. Discuss with your derm about it. It is generally given to people with weak immune system and who had chickenpox but not shingles in their lifetime. It is the chickenpox virus which stays in your body and attacks when your immunity is low, resulting in shingles. Only your derm can tell you whether this vaccine will work for you.

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Do you mean, after u use uva, your vit is stabilized and then you stopeed taking treatment ?? and is it starts spreading after 3 years..then this time when it starts back, you did’nt take the treatment while spreading ??
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I did but vitiligo when relapsed is far worse and more difficult to control. Once it started creeping on my palms, lips, fingers etc which are most difficult to treat, I gave up. Also psoralin + PUVA is not a treatment you can continue for long as psoralins plays havoc with your stomach and nausea, indigestion are the main side effects. By the time UVB arrived, it was too late.

Sanjay

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Hi Dileep,

Vitiligo treatments including using immunosuppressing agents such as protopic and radiation therapy aims to weeken your immune system and puts you in the high risk category for developing shingles. In your case the damage has already been done and you need to get rid of it as soon as possible. All the medicines you are taking for shingles are aimed at boosting your immune system to fight the shingles virus. Taking any radiation therapy or even a topical imunosuppressant cream may work against it and will interfere with the recovery process. It will take max 3-4 weeks for you to recover from shingles, so my advice would be to refrain from any vit treatment including UVB for this time period. Also after the shingles treatment, better get a vaccine for shingles so that it doesn’t attack you again when you restart your vit treatment.

As for the lamps, its costing me so much because I am trying to buy from US and the shipping and taxes add up to the original cost of 320 USD for four lamps. Thank you very much for the indian contact, the price seems to be very reasonable there. I will try to contact him through his email and see if I can get it from India.

Your vit case seems similar to mine. For me also, it started with some spots near eye and hands. I got PUVA +oral treatment for that and it got well controlled that time and I kept it under control for 3-4 years and the patches were hardly visible. The problem started after the marriage when I had little time to continue the treatment. It spread slowly with long phases of stable phases, but it never really stopped growing and it is sprinkled all over my body. I bought a NBUVB unit 3 years back and it worked for almost an year till the bulbs burnt out. It was mainly beneficial for area around my face and neck. But it was all in vain as after 2 years of no treatment, it has again come back with a vengeance. So the problem with vit is that you can only control it a little for a while with various treatments, but as soon as you stop, it is almost certain that it will come back. I hope that some day there will be a final cure to vit, till then you can either keep fighting it or ignore it. I keep doing both at times…

Sanjay

[schandel]

Hi ,

Thats really bad happenings in just 3 months…my sympathies are with you..Were you using any Immunosuppressing agents…like Protopic , Elidel or any other generic medicine with your NBUVB treatments? If yes, then instantly stop it. Shingles (herpes zoster) comes from the virus hiding inside the person’s body, not from an outside source. It had nothing to do with that spray chemical. The moment your immune system get weakened, the shingle virus can attack. My advice would be to listen to your derm and stop all treatments for vitiligo till your shingles get completely cured. I guess your immune system is malfunctioning at the moment and I would also advise to get your thyroid levels checked. I am not a medical expert, just telling you from my own personal experience as I had also gone through something similar when I was in college. My hypothyroid was undetected at that time and by the time it got detected, I got extremely painful shingles on my face and vitiligo set in soon after.

Slightly deviating from the above topic, I have a query for you. You are using a 2 foot NBUVB unit with four lamps..right? I also have a similar one…only the lamps are burnt out and I need to replace ’em. Did you buy your unit from India? If yes can you find out the cost of four new lamps? In dubai it is costing me around 550 USD..a bit steep for me.

Sanjay

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Hey mysterious girl,

Thanks for the greetings. I joined this board way back in 2001. Jai and Ria were the among the first Indians I got to know. This site has helped me a lot in keeping me updated about vit. I learned about NBUVB lamp and bought one, it helped me recover a bit but then I lost interest and I just went on with my life using cover up creams.

I am glad to see so many new Indians across the globe together on this board along with an exclusive forum for them. Reading about their experiences while dealing with vit brings back lot of memories of my own past and give me a sense of belonging to an exclusive group of “elites” .

With well over 300 posts, you seem to be an important member of the “family”…my greetings to you and… yess..one more thing..you do look quite beautiful even in the that half picture of yours. Congrats..

take care Gina.

Sanjay

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Hi Jai,

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How can i forget you.Yes its the same gal.
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My heartiest congratulations to you and your girl. She waited five years for you? Wow..thats cool…..Hope everything works out fine with you two..We would like to see the pic of you together with her if possible…

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I am very sorry to know what had passed on u. Any how happy that u havent stopped smiling.
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Life is always full of stress whether it is personal or work related. What matters is how you handle it. Think about the worst that could happen to you and the present scenario would look much pleasant to you..If you look around carefully there are so many things to smile about. Just dwell on them. I have finally learn it the hard way, but I am glad I did.

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I am very much worried about the problems, which i need to face after the marriage bcoz of vitiligo.
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Since your future wife and in-laws already know about your vitiligo before marriage, there seems to be little reason for you to feel this way. After marriage, there are so many other things to think about that your white spots will seem too insignificant to be bothered about.
Before marriage I too was very self conscious about my vitiligo, but after marriage, as priorities changed, I learnt to ignore it.. Having a positive self image and self confidence will make you more attractive to your partner than getting your vit cured. Just my 2 cents..

take care

Sanjay

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Hi Van

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she also is a pretty woman and kiddo is cute hope things go well for u…

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Thanks again for your kind words…
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In ur pics u seem comfy with ur vitiligo.. thats good !
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Yeah I am comfortable about vit showing on my visible parts except my face.
It was never a hurdle in achieving anything in my life. Yet I would do anything
in my capacity to get rid of it

Take care

Sanjay

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Hi Van,

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Avani sounds an unusual name
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Yeah it is…it means “mother earth” and stands for stability and tranquility. Considering my son’s name is Aviral meaning ” non stop” and “always moving”, her name is in direct contrast with him and hence pretty intriguing. Both names were chosen by the youngest sister of my wife who would “kill” if the name chosen by her is not finalised….

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for the sake of the children
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Yes that is the utmost priority right now and I will keep trying my best to improve the things. I have however described my problem in more detail in the other post..

Thanks again for your concerns.

Take care

Sanjay

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Hi Pooja,

A very complex situation indeed. Yet as the saying goes “it is better to marry someone who loves you rather than someone who you love” still holds strong in your case.

In my opinion if he is marrying a girl just because his parents have fixed the marriage, its not gonna be a happy marriage if he is in love with someone else and his future wife is clueless about it.

Being each other’s best friends before marriage goes a long way to cement your marital life and I would suggest you to accept his proposal if he is ready to break the engagement. Trust me he must be having some pretty darn good reasons to break it off. Just being tall, good looking and educated does not automatically makes a perfect soulmate.

You should also be 100% sure before accepting his proposal that you love him just as much as he loves you. Since he is aware of your feeling for the other guy, you will have to make extra effort to convince him of your strong inclination in spending rest of your life with him.

Don’t worry too much about his family or his fiance, as his family will eventually be happy if their son is happy and his fiance would be far better off to be married to someone else who is not in love with some other girl. You guys might shock few people around you initially but just think beyond all this towards the happy future you guys might share with each other and make up your mind before its too late.

Being selfish is not such a bad thing. Afterall, practically spaking, everyone else is.

Take care

Sanjay

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Hi Van and Rashmi

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wow.. i loved reading that story.. i am sure it can be a source of great inspiration for all of us. True what u exude reflects on ur face and adds charm or lack of it on the face.
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Well she was also the first one to get married right after college..that too with one of our lecturers. Now both of them have their own architectural firm and are a happy couple.

I also knew of one girl who was the sister of one of my schoolmates. When I first saw her I was around 17 and she must have been around 20. She was an extremely fair and attractive girl, a bit too fair for an Indian girl, but never did it occur to me that something was wrong with her skin. I found out about few years later through my friend that her sister had generalised vitiligo and she was totally depigmented. She also has a successful career and got married thru love to one of her colleagues in the Canada Embassy.

The one thing to notice in these two instances were that both girls got married thru love and not arranged marriages although both were from conservative families. I wouldn’t recommend arranged marriage to any vittie. It just doesn’t work out.

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u know what sanjay… u should come here more often.. i am sure ur words of advice around here..can really benefit so many of us.
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Thanks again for the kind words. I would try my best to be regular. Although with you around I am sure nobody misses good advice on this forum.

For update sake my latest pic…you can clearly see the vit on both hands and legs. Face is ofcourse covered with dermacolor.

take care

Sanjay

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