Wife diagnosed as HIV+

[Fairynuff]

Jimmie, good to hear your update. Hopefully you're both feeling more settled. Possibly a bit daunted by the prospect of the meds but hopefully side effects will be minimal. Keep us informed. Good luck again to you both

[Hammock]

Sorry to hear about your problem, OP. HIV is not a death sentence nowadays. There are much worse diseases which are difficult to cure or are still uncurable, like Hep C, diabetes (like one poster has already mentioned), psoriatic arthritis. I don't even want to mention mental diseases. Please follow up your doctor's advice and enjoy life. Cheers.

[jimmiejackson]

Thought I would post an update as things are going on.

My wife started the medication around 2 weeks ago and mostly it has been fine. Little bit of dizziness at night time (especially when getting up to use the bathroom during the night) and a bit of morning dopiness but otherwise nothing major.

Then on Thursday (two days ago) she started to get a rash in just a few spots on her legs. Not itchy and quite consistent with what I've read is a common side effect from Efavirenz. From some of the pictures I've seen online it isn't severe, but it's pretty noticeable all over her body, I would say 50% coverage in small, mostly light red dots the size of a one baht coin or so (some larger and more pronouced).

Today she woke up and it had started to itch so she called her SSF hospital to see if the appropriate Doctor was there today so she could go and check. They told her he was so she went off to the hospital.

Of course the Doctor wasn't there at all, and won't be until Monday. No surprise there.

She saw another Doctor who said "I don't know much about this, come back Monday".

They then gave her an appointment Monday without asking what time she's actually available and sent her to the pharmacist.

The Phramacist told her to stop taking her HIV medication immediately until she saw the Doctor and gave her some antihistamines (without checking what medication she's already on, which includes antihistamines for ongoing allergies).

Pretty sure this advice is both wrong and dangerous for several reasons.

I asked my wife immediately to call Bumrungrad and make an appointment tomorrow. I'd rather spend the 1300 baht or whatever it is and have a Doctor who knows what they're talking about check her out.

Actually that's not true, I'd rather her assigned hospital would do it properly and free of charge as they are meant to under the SSF. There's a difference between long waiting times and not the most modern facilities, which are to be expected, and dangerous incompetence. Not sure they didn't cross the line today on that one.

But the situation is as it is, I've been here long enough to know how things work and know how take it in my stride. I'm blessed that 1300 baht in Doctor's fees don't mean a huge amount to me in the scheme of things. I just feel so sorry for the people who don't have that luxury and have to blindly follow whatever advice is given to them - I hope one day that isn't the case for them.

So, will report back. Feels good to share!

[jimmiejackson]

Just to clarify, I told her not to stop her HIV mediation (I'd rather she had a rash than came off cold turkey on the advice of a Phramacist who didn't even check for possible interactions) and not to take the antihistamines. I bought some calamine lotion and we've been applying that all day. It might not be ideal but I'm quite sure it won't make things worse and it helps relieve the itching. So now I'm waiting to see what happens tomorrow.

[Sheryl]

You were quite correct to tell her not to stop the HIV meds. Stopping meds when a rash develops is normally correct but not for EVF. If it is only rash (with or without itching) and no systemtic symptoms (and no blistering/peeling rash) it is often possible to proceed with the drug. Rash like this occurs i nup to a thord of people on EFV and generall yresolves afer a few weeks, the main thing is to monitor the rash to make sure it does nto develop into a blostering/peeling type which would indicate a potentially serious reaction.

Besides antihistamines, which she is already on, local application of a steroid cream to the itchy areas may help.

She is probably OK to wait until Monday on this unless fever or other signs develop.

Sounds like the issue at the hospital is that there is just one HIV specialist which is obviously not good and would invariable mean delays of up to several days in getting treatment.

I suggest you look into what other hospitals she can register at under SSF as she is much better off at one with at least a few HIV specialists, which would mean a larger hospital. Call the SSF office to find out which hospitals she can choose from and also when the next opportunity for switching hospitals will be.

[Issangeorge]

Doesn't seem that unusual to me that a hospital wouldn't have an HIV specialist on duty on a Saturday. I doubt most western hospitals would be much different.

[PomRakBKK]

It is possibly good for people to know that information.

Personally I think if I were in that situation I would still use a condom but condoms cannot help some forms of sex and with those there is normally a lower risk and this information could help someone regarding that.

Condoms cannot help some forms of sex? What do you mean?

The only way to infect somebody with HIV is through blood to blood contact. Oral sex and kissing cannot infect somebody. Especially the infection from female to male is not easy.

The use of condoms is the only way to prevent an infection and it is sufficient. Condoms should be used and then there is no real risk.

I don't see a reason to inform anybody about the infection if condoms are used.

Total bullshit, sorry.

If your sexual parter has braces for example it's very easy to cause a little 'scratch' or opening and exchange blood that way.

Even if he/she doesn't have braces you might have a small opening in your mouth you don't know about and so does he/she.

Same goes for kissing.

[jimmiejackson]

Thanks Sheryl, the information definitely helped.

The result of the consultation with Dr Asda was that he acted as if it isn't a big deal, which is good because that's what I read about the situation too. Definitely helped put my wife at ease about it.

He prescribed some Eucerin cream and a strong antihistamine and said it should be improving within a week. Only need to stop taking the medicine and seek urgent attention if she starts to get ulcers in and around her mouth and eyes, fever or any other severe reaction. To be honest, she looks pretty bad (I'd say similar to how someone looks when they have chicken pox, it's extremely obvious) but hopefully it will go away soon enough.

As far as his recommendations for a good SSF hospital, he said the best choice would probably be Bamras in Nontanburi which has a lot of specialists but is quite far, another would be Rajavithi in Victory Monument which is much closer. The general advice was that the bigger the hospital the better and to check their list of Doctors to see how many specialists work out of there. If it's quite a few they're more likely to have someone who knows what they're doing available more of the time. I won't go into specifics but let's say the feedback on my wife's current SSF hospital wasn't exactly positive.

So right now my wife is knocked out on some strong antihistamines but generally ok and tomorrow we'll see what the situation is with switching hospitals.

[Kabula]

Check the exclusions in your policy as most major medical and travel Insurance policies currently exclude insurance coverage for HIV. I'm no longer a fan of Bumrungrad Hospital after many years living here. Their prices now are unaffordable for most. The last time I went there I asked for a package annual health checkup. The doctor charged me individually for each test which was much more expensive. I even had a nurse get me the package brochure and I shook it in his face. He did nothing. I filed a fraud complaint with the administration and after a two week investigation they ruled in my favor and returned all my money with an apology. Another time I inquired about a colonoscopy and they insisted that I spend the night for the prep which in my opinion is ludicrous and another way to over bill. I would contact several hospitals and get Doctor recommendations and prices. I would also research what health foods and herbs to consume to boost the immune system. The Insurance company may lull you on and not deny the claim immediately if there is no coverage, but reserve their right to deny in the future after their investigation. This is common in emergencies and after policy holders run up very large bills and get treatment, they deny the claim. For this reason over the years hospitals have taken it on the chin and were forced to double their prices. Best of luck to you both.

[jimmiejackson]

Doesn't seem that unusual to me that a hospital wouldn't have an HIV specialist on duty on a Saturday. I doubt most western hospitals would be much different.

I agree, would have been nice if they told my wife that in response to the exact question "is an HIV specialist Doctor working today and available to see me" before she went, but there we are.

At least we have the option to pay out of pocket and see a Specialist at the weekend for quite a reasonable price, I'm thankful for that.

[jimmiejackson]

Check the exclusions in your policy as most major medical and travel Insurance policies currently exclude insurance coverage for HIV. I'm no longer a fan of Bumrungrad Hospital after many years living here. Their prices now are unaffordable for most. The last time I went there I asked for a package annual health checkup. The doctor charged me individually for each test which was much more expensive. I even had a nurse get me the package brochure and I shook it in his face. He did nothing. I filed a fraud complaint with the administration and after a two week investigation they ruled in my favor and returned all my money with an apology. Another time I inquired about a colonoscopy and they insisted that I spend the night for the prep which in my opinion is ludicrous and another way to over bill. I would contact several hospitals and get Doctor recommendations and prices. I would also research what health foods and herbs to consume to boost the immune system. The Insurance company may lull you on and not deny the claim immediately if there is no coverage, but reserve their right to deny in the future after their investigation. This is common in emergencies and after policy holders run up very large bills and get treatment, they deny the claim. For this reason over the years hospitals have taken it on the chin and were forced to double their prices. Best of luck to you both.

Thanks for your advice. Luckily my wife is covered under the Social Security system so her treatment is free. The trips to Bumrungrad are at my insistence and only for Consultation with the specialist. As this by itself is not highly expensive (if we did lab work and got prescriptions there, that would be another matter) it is worth it to me to be able to speak to someone in English who I can ask all the questions I want to and who can advise me on how to navigate the system in the most efficient way. I know that many others aren't so lucky and have to go fully private for treatment, although with the Red Cross service it isn't hugely expensive now.

The insurance I have (a joint policy with myself and my wife on it) was taken out several months before we got the diagnosis and we haven't used to it claim anything yet. As we don't need to do any further declarations and the renewal is guaranteed (as part of their conditions) I fully intend to keep this policy running, especially as they guarantee coverage of a child without a medical declaration required. If something big comes up it gives us the option to go private rather than worry about relying on the Government hospital entirely, so we're lucky to have that option.

[Sheryl]

I would add that it is possible to have both bad and good experiences at any hospital depending on the individual doctor you select. The OP is not using Bumrungrad for diagnostic tests or medications. He is solely using it to have consultations with a specific specialist of outstanding qualifications and dedication who is not available on a private basis anywhere else.

[Sheryl]

A post with dangerous quack advice has been removed along with replies to it.

[Fairynuff]

Jimmie, hope your wife is doing better now and the rash has gone. Has she had any other side effects from the meds?

[NickJ]

Big shout out to Sheryl for the anti-quak removal........So many nut bags out there that will post total bs. I watched a Magic Johnson interview awhile ago. It was pretty good. He is a billionaire now and in the interview he stressed that he is on everyday Hiv meds and takes care of himself via diet and exercise......

.......stay cool JJ....the world as you know it is far from ending.I refrenced Magic as its been donkeys years since he was dx'd

[sanukma]

Sorry to hear that your wife has had some problems after starting the medication. Guess my earlier promise of smooth sailing goes out the window then.

The chances are that these side effects are only temporary and will pass.

You made the right choice in not listening to the pharmacy when they said to stop the meds. You mentioned she is getting antihistamines and that she was also on other medication before you went to the hospital.

I know some antihistamines can react with HIV meds. But hopefully she has been gotten some that are tolerable.

For the future you should always look up possible interactions with other medicines she will get, no matter if it is from a fancy bumrungrad specialist or any other doctor. It is almost impossible for a doctor to have the full picture all the time.

I personally use this website to search for possible interactions. It is a very good tool to use. http://www.hiv-druginteractions.org

Please note that if an orange warning comes up when you plot in the drug names it does not mean that she can not take these drugs at all. Only that it needs to be closely monitored or that they should not be taken at the same time as the HIV medicine or that dosage might have to be reduced. Talk with a doctor in this case. Red warning is a no go and a different medicine needs to be found to replace it.

Good luck

Edit to add:

The front page is a bit chaotic. But just click where it says "click here" and you go straight to the interactions "calculator"

You can chose the different HIV medicines by their trade name, generic names and the actual name of each component.

All available HIV medicines should be there.

[jimmiejackson]

Sorry to hear that your wife has had some problems after starting the medication. Guess my earlier promise of smooth sailing goes out the window then.

The chances are that these side effects are only temporary and will pass.

You made the right choice in not listening to the pharmacy when they said to stop the meds. You mentioned she is getting antihistamines and that she was also on other medication before you went to the hospital.

I know some antihistamines can react with HIV meds. But hopefully she has been gotten some that are tolerable.

For the future you should always look up possible interactions with other medicines she will get, no matter if it is from a fancy bumrungrad specialist or any other doctor. It is almost impossible for a doctor to have the full picture all the time.

I personally use this website to search for possible interactions. It is a very good tool to use. http://www.hiv-druginteractions.org

Please note that if an orange warning comes up when you plot in the drug names it does not mean that she can not take these drugs at all. Only that it needs to be closely monitored or that they should not be taken at the same time as the HIV medicine or that dosage might have to be reduced. Talk with a doctor in this case. Red warning is a no go and a different medicine needs to be found to replace it.

Good luck

Edit to add:

The front page is a bit chaotic. But just click where it says "click here" and you go straight to the interactions "calculator"

You can chose the different HIV medicines by their trade name, generic names and the actual name of each component.

All available HIV medicines should be there.

Thanks for your message and recommendations. I have bookmarked the page! I agree that no Doctor, even the best of the best, is infallible. In my profession I have areas that I'm an expert in, however that certainly doesn't mean that I never make any mistakes, or recommendations that are less than optimal. I definitely appreciate having resources to double check everything!

[jimmiejackson]

One week on from the peak of the rash, it seems to be improving. A week ago it really looked terrible, it was bright read and all over her body and face and to be honest, a little scary. I think it's human nature to see something like that and think that it's something really serious and terrible.

Right now the rash seems to be fading. From bright red, the patches have faded to something resembling a bruise. They are still very noticeable but appear a lot less "angry" than they did. On her face and neck they have faded to the point of not being noticeable unless you're looking for them. On her arms, legs and back they are far more noticeable but seem to be fading.

Apart from that, no other major side effects have reared their head (touch wood).

She will go to get more drugs from the Government hospital and will try and convince them that they should do another blood test to see how the medication is working. I hope they do, otherwise I will pay out of pocket at the Red Cross. Either way, I will be taking the results back to Dr Asda to look over.

So now we are about a month into this whole thing and it's been quite a journey. For anyone reading this in the future, it will be ok, just stay calm and take the necessary steps to get things under control.

Will continue to update as things go on.

[Fairynuff]

Good to hear things are settling for her. You must both be very relieved.

[Sheryl]

Thanks for the update.

Your wife is lucky to have you....and to be infected now rather than 20 years ago when HIV was a sure death sentence.

[SantiSuk]

I don't have HIV and I dont know about* anyone who does but I have to say this is the most uplifting thread I ever read on ThaiV.

*As I learnt on here I probably do know someone who has HIV.

[inbangkok]

Considering this thread is till going.....I cannot post the link because it is to the BKK Post....but google "Kindergarten HIV test drama riles activists " as it was just posted today.

Another prime example of how out of touch Thai society is in regards to this disease and why you should never tell anyone you have it while living here. Stupidity knows no bounds regarding HIV/AIDS in Thailand......truly unbelievable in the yer 2016.

[Fairynuff]

Thanks for the update.

Your wife is lucky to have you....and to be infected now rather than 20 years ago when HIV was a sure death sentence.

Can I also add that the forum is also lucky to have Sheryl with an extensive knowledge to share

[jimmiejackson]

Just want to make an update now that it's been a while since the last one.

Eventually, the rash went down, I'd say it took about another week to fade away to the point it wasn't really obvious from a distance. Still now there is some faint sign of the rash on her arms and legs, like little dark spots under the skin that get more prominent when she's hot. The Doctor says this is normal and will just take some time to fade away.

After the first month of medication had finished my wife went back to her SSF hospital to get more medication. It was another drama, with her coming for an appointment, the Doctor not being there, then having to wait while the Doctor came back. The Doctor then told her she should change medication because of the rash and prescribed something different. She then had to see the Psychologist again who said that she will give her the same medicine (at my wife's insistence. I told her not to change anything without the go ahead of Dr Asda) again. Eventually she was given 2 month's supply, again for free.

In the meantime, her request to the SSF to get her registered hospital changed to Rajavithi in Victory Monument was approved. There is a limited window of time each year where you can change hospitals, and a limit to how many people each hospital will take, so luckily it all worked out. She hasn't been there yet but as a big hospital with a lot of specialists, we're hoping the experience will be better. My main reason for wanting her to change hospitals was in case she needs to be admitted for any reason, and the two private insurances that she has don't work out, at least we have a decent back up option.

She enquired about the blood tests at her old SSF hospital but the hospital said that if she wanted them more than once every six months (the first one being six months from her first visit), that she would have to pay for herself.

As it is much cheaper, my wife went back to the Red Cross and got the blood tests done there. The tests were similar to last time, except this time we added on a few things - liver function, kidney function, a urine analysis, and didn't need to do a few others (HIV test, Hepatitis etc).

The results came back and her CD4 had gone up to 650 with a percentage of 30. Her HIV viral load went down to 51.

We went to see Dr Asda again later that week to go through the results. The Liver Test came back with a few things a bit high, which is to be expected as it is coping with the medication, but he said if they stay at that level he is happy. He said that the CD4 looks very good and the HIV viral load is where it should be, and we're hoping it will be undetectable by 3 months into treatment.

We will get another round of blood tests in two months and see how things are.

As for costs, the medication is free so that's a good thing. The blood tests cost somewhere around 3000 Baht a time, the consultations at Bumrungrad between 1000-1400 Baht.

In general it's just a part of life now. There is an alarm every evening for her to take her pills. She didn't drink or party before so not doing so now is not a major issue not to do it now. We're lucky in a lot of ways to have caught it early enough and to be able to get good treatment.

Thanks to the many on this forum who have given constant support and an outlet for me to discuss my concerns and hopes, it's made things much easier to deal with.

[Sheryl]

All sounds very good, and excellent that she can switch to Rajawithi. There will be long waits there but the quality of care is excellent and full array of specialists available.

One thing to look into - they have an "after hours" clinic where can see top specialists by appointment, I don't know if SSF will cover that but if it won't cover the added fee perhaps it would still cover the meds, tests and normal doctor fee with her paying the extra -- something to ask about as it both saves wait time and ensures direct care by the senior docs as opposed to the residents under their supervision.

The after hours clinic is Monday to Friday at 4 PM – 8 PM and Saturday at 8 AM – 12 AM. 9th floor at station 1

[jimmiejackson]

Thanks for the info Sheryl, I'll get her to look into that and report back how it works out.

[Rayk]

Wish you and your wife all the best and hope everything works out for you in the end.

Good luck and be strong, if not for you, for your beautiful wife.

[Fairynuff]

Great to hear things are going so well for you both JJ. Keep updating us

[Nemesis7]

My best friends GF was  tested hiv last year he was confused like hell and was scared . She is an expat however he needed the sane advice, I was with them all the way , took them to see a dr in Pattaya first ( a French guy extremely rude ) then to bumrangrad and they are under the treatment of that ekchai a young dr. To be honest with you there is nothing to worry about ,, just please go viral load and cd4 test first start the medication prescribed and soon with in 4-6 months she should be undetectable. If you really love her please don’t judge her fir what already happened just think how hard it is for her to accept the reality as it is . But these days doctors says as long as the viral load are suppressed and she never misses her medication, she will be just fine and can live a normal life just like any one of us and until she is undetectable please use condom just to be on safe side and temporarily you can take prep medication. By the way even in Bumrungrad the test and medication isn’t that expensive. If not mistaken the SR fee was around 1400 bhat and one month supply of medication was around 2000 bhat. Iam pretty sure soon some days to come there will be a vaccine for HIV and remember having HIV doesn’t mean she has AIDS. Wishing you two all the best and hang in there . 

[NYGuy816]

I totally agree with the above comments. My friend is in the same situation and he had to maintain a healthy lifestyle. He is into meditation and diving too. He's currently finishing his degree, more focused on his goals in life, and is happily married. Just focus on your wife's health and wellness and provide the best support and medical treatment possible. I wish you and your wife the best. Cheers.