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Author Topic: Just started new regimen  (Read 6575 times)

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Offline Mendicant

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Just started new regimen
« on: December 11, 2017, 04:34:48 am »
Dear friends,

After being on Atripla since 2010, then quitting completely in 2015, then starting it again in 2017, it became clear that the regimen had failed and the virus was resistant to all three ingredients of atripla.

So, I went to three HIV specialists a few days ago in Delhi and I found a very caring, compassionate doctor of the three and he gave me a new regimen.

Last cd4 as of Sept 2017 was 64 and VL of 220,000.

I started taking dolutegravir 50/darunavir 800/ritonavir 100 since the last 4 days.

The first night was very rough but it seems the body is getting adjusted to the meds now.

I'm also taking azithromycin 1250 my once a week to prevent IRS. Antibiotics are very hard on my body and knock me out big time. I guess I have to swallow the pill regardless.

I'm also getting this weird fever that comes in the evening and it affects my sleep  every night.

Thanks for listening!!!

Offline Mendicant

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Re: Just started new regimen
« Reply #1 on: December 13, 2017, 11:34:33 pm »
Guys, I need help.

Struggling with this new combo. Low appetite, oral thrush that has been there for over one year is getting inflamed, vomiting a few times, feeling blah all day.

8 days into the meds, how long does the body need to adjust to new meds.

Will oral thrush not go away until cd4 crosses 200?

Help me please!!!

Offline Jim Allen

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Re: Just started new regimen
« Reply #2 on: December 14, 2017, 01:41:17 am »
Hi

Oral thrush for a year well you need to have this checked and treated, to be honest should have happened before or at least at the same time if needed when staring the new meds. Did they not check and treat or begin treatment for any known issues?

See a doctor for the vomiting as well. This could have nothing to do with the new meds and could also be related to the antibiotics and untreated infections / overgrowth. Whatever the cause I wish you well and truly can only stress that you need to see a doctor to treat this.

Jim
« Last Edit: December 14, 2017, 01:44:37 am by JimDublin »
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Offline Mendicant

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Re: Just started new regimen
« Reply #3 on: December 14, 2017, 02:33:46 am »
I was taking diflucan for over 9 months for oral thrush. It was effective in only reducing it by 20% or so. The doctor in Delhi in April had said that unless cd4 goes over 200, oral thrush will not resolve fully.

Caught between a rock and had place.

I'm trying home remedies like apple cider vinegar gargle, salt water gargle but this is a very persistent thrush.

Cannot easily eat, drink or swallow.

Will I survive this ordeal, I don't know.


Offline Jim Allen

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Re: Just started new regimen
« Reply #4 on: December 14, 2017, 08:33:42 am »
Hi

Well with a CD4 count of lower than 200 fungal overgrowth is more common, but 9 months worth despite treatment would be a concern to me at least, and I hope it clears soon.
 
Quote
Cannot easily eat, drink or swallow.

I really think you need to talk to the doctor again about the thrush and prehaps have it checked to see if it has spread deeper down the throat and/or if alternative treatment to what you are taking for the thrush and antibiotics is warranted at this stage.  This is next to talking to them about the puking & fever as it could be totally unrelated.

Wishing you well and I know how rough it can be when untreated HIV has given rise to other problems that need to be managed, however you can get through this.

Jim

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Offline Mightysure

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Re: Just started new regimen
« Reply #5 on: December 14, 2017, 02:29:10 pm »
Sorry that you're experiencing this. Sounds like you're in India, so access to medications is better than the US. Is there any reason why you stopped?
Id keep seeking medical attention because they're the best ones to access your symptoms and come up with the best treatment options.

Offline Mendicant

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Re: Just started new regimen
« Reply #6 on: December 14, 2017, 10:20:36 pm »
Can't believe I wrote a long post, clicked on preview and the whole post disappeared

Offline mecch

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Re: Just started new regimen
« Reply #7 on: December 14, 2017, 10:53:48 pm »
Thats a pity. Try typing your posts in a word program then cut and paste to here.

What is the situation with doctors in Delhi. Do you see an infectious disease doctor? General practitioner? Do doctors "specialise" in HIV there?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Mendicant

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Re: Just started new regimen
« Reply #8 on: December 15, 2017, 12:41:45 pm »
Thank you Jim for a great link.

Mighty, I have absolutely no explanation for my suicidal behavior in 2015 when I was in the peak of my health (CD 4 880) and I just let it slide

I know I'll not easily forgive myself for this life and death situation

As far as meds availability is concerned in India, it is not so easy, with limited options and high cost.

Just for estimate, average income in India is about $150-200, and the meds I'm taking run upto $250. I'm blessed my family is standing behind me with financial support, otherwise most people end up taking older, not-so-popular meds like Azt. And we all know it's toxicity. Govt will give older meds very erratically.

When I was living in America a few years ago, finding meds and insurance was like climbing the everest...I lost all hope of finding health coverage, as I was also in contract jobs for years.

It's a  shame that india has the means to really lower drug prices but large American pharmas put too many patent issues.

I talked to my doctor in delhi and he suggested taking an acid reflux which I just started for 24/7 hiccups.

If only I could find some resolution for oral thrush (I have started Apple C. Gargle and tea tree oil gargle)/since today.

And if I can put my finger on daily unexplained fevers twice a day with evening temp running upto 102.6. I will be so much better off.

Believe me, in a city of 6 million where I live, there's not a real HIV or infectious disease specialist

Guys, you are all priceless in helping someone you don't even know.

I just want to say THANK YOU


Offline Mendicant

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Re: Just started new regimen
« Reply #9 on: December 16, 2017, 12:30:38 pm »
Thats a pity. Try typing your posts in a word program then cut and paste to here.

What is the situation with doctors in Delhi. Do you see an infectious disease doctor? General practitioner? Do doctors "specialise" in HIV there?
.

Mecch, there are at least HIV specialists and infectious disease doctors in Delhi.

In my hometown, with a population of about 6 million, there's no real HIV doc or ID specialist.

If you go to a regular doctor, he will just pull back as soon as he finds about your HIV status, and God forbid you have to be admitted at clinic, the nurses won't come near you, try to avoid giving you medication. There's still so much stigma and fear of this disease.



Offline Mendicant

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Re: Just started new regimen
« Reply #10 on: December 16, 2017, 01:02:29 pm »
Today the doctor ordered a whole slew of tests. Since I had contracted TB in April and did a full six month of treatment, be wanted to rule out possible recurrence of TB.

I got a test of complete blood count LFT, kidney test, ESR, chest x-ray, CT-scan, urine test, aerobic and anaerobic blood culture. Some results are out, some will take a few weeks.

Hiccups are severely reduced since yesterday.

Strangely, by evening I'd get a fever of 102.5 but today for the first time in 12 days, no fever and it's 11pm. Could all the blood that was drawn cleared any infection?

Just waiting on CT scan reports that are due in 1-2 days.

Offline Jim Allen

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Re: Just started new regimen
« Reply #11 on: December 16, 2017, 01:17:55 pm »
Are you measuring your temperature daily, just wondering why?

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Offline Mendicant

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Re: Just started new regimen
« Reply #12 on: December 16, 2017, 10:28:23 pm »

Yes Jim, because this unexplained  fever is recurring everyday, morning it's about 100.5, evening it could run upto 102.5

This obviously makes me tired and lethargic and disrupts my sleep.

I have been taking paracetamol every night and that keeps the fever down for 3-4 hours.

At first, I thought it was the meds but in reality the fever started 3-4 days before I started the meds, when I was in Delhi to see the HIV doc. Delhi is btw the most polluted city in the world as of today.

I hope it is a benign bacterial infection that should clear with some antibiotics (only CT scan will confirm if it could be TB, and the results will be out in a day's time).

Other than that, I feel my body is tolerating the meds pretty well and hopefully a VL test in a few weeks will bring good news.

Offline Jim Allen

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Re: Just started new regimen
« Reply #13 on: December 16, 2017, 10:38:58 pm »
That's more the outcome rather than the why, but I think I got it

Anyhow hope you do feel better soon in life, people pick up all kinds of bugs that can take time to resolve. Fingers crossed your TB testing will be cleared and with a supessed viral load in the near future your body can also build back up that immune system and start healing

Jim
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Offline Mendicant

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Re: Just started new regimen
« Reply #14 on: December 17, 2017, 02:54:19 am »
Thank you Jim for rooting for me.

But
Today, I'm sad and disappointed. CT scan report is suggesting the following

"Mediastinal lymphadenopathy with scattered calcification in bilateral apex. Fibrosis and peribronchial thickening in both upper lobe. Tree-in-buid appearance in right upper lobe and small patchy opacities in right middle lobe, suggestive of Koch's and it's sequalae"

This after starting a whole six month TB treatment in April and finishing in September... Why, why, why?

Offline Mendicant

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Re: Just started new regimen
« Reply #15 on: December 17, 2017, 11:46:53 am »
Looks like people are enjoying their Sunday and have no time for this poor soul.

Offline Jim Allen

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Re: Just started new regimen
« Reply #16 on: December 17, 2017, 10:07:11 pm »
So enlarged lymph nodes, some swelling and patchy lung nodules

Are they planning a biopsy? Have they spoken to you about the next steps.

Look you are only a few weeks into HIV treatment, some damage and conditions have come-up before starting treatment that are now being uncovered or addressed and the road to recovery and healing is a bumpy one for some but its a journey others have faced and overcome. 

The good news is you are addressing the issues, and seeking treatment for them and separately you have started HIV treatment so once suppressed it can no longer do uncontrolled / unchalleged measured and unmeasured damage to you and your system. 

Jim 

https://radiopaedia.org/articles/tree-in-bud-sign-lung
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Offline Mendicant

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Re: Just started new regimen
« Reply #17 on: December 18, 2017, 03:41:26 am »
The delhi doc has now ordered a bronchoscopy and biopsy of the area.

To that, I'm going to Delhi tonight on an emergency travel to get admitted to the hospital where my doc is a consultant.

They will run the tests and begin treatment.

The doc said it looks like a recurring TB.

Guys, is there a gentler, milder treatment for TB in the 21st century other than 6 month of treatment.

What do docs in the US give for TB and HIV? Rifampicin has many cross reactions with many HIV meds...

Is INI with Rifabutin an option?

I'm resistant to most nrti and nnrti meds.

Offline Mightysure

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Re: Just started new regimen
« Reply #18 on: December 18, 2017, 10:40:56 am »
Does INI mean integrase inhibitors? If so, most of them on the market have a low resistance profile so I would thinking would be ok for them to administer one of those and your antibiotic, but I thought you mentioned resistance to Tivicay, but there are 2 others currently on the market.

And don't take it personally if you don't get quick responses. I think with the advancements in treatment recently,  we're increasingly living normal lives and so people don't spend as much time in these forums as they used to.


But we're here for you.

Offline Mendicant

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Re: Just started new regimen
« Reply #19 on: December 18, 2017, 10:20:36 pm »
No Mightysure I'm not resistant to tivicay, in fact that's what I'm taking once every night with Darunavir 800 and Ritonavir 100.

I think I need to give the body 2-4 weeks, (it's been exactly 11 days so far)

And I'm not sure what INI was, I had just read on a US govt site

I'm hoping full hope that this will be my long term regimen. Expensive in India but not more than your life.

I think that's exactly the reason the participation of thousands of members is so light because most of us have moved on with their lives.

But, trust me when I say that when newbies like me visit, we are really clinging with a straw and any reply, even one of encouragement fills you up with hope and courage.

I have three big battles at the moment. One, acute candidiasis of the mouth, two unexplained fevers which look like a recurring TB, and three, hiccups most of the time that don't seem to be responding to anti acid meds.

When it rains it pours.

I'm glad I'm still here

Offline Mightysure

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Re: Just started new regimen
« Reply #20 on: December 19, 2017, 12:25:54 pm »
Well im glad that youre not resistant to that. INI means integrase inhibitor, which is the drug class Tivicay belongs to.  Im not a pharmacist or doctor, but Tivicay typically has a lower interaction profile.

I dont think people have completely moved on, people just get busy and treatments have given us normal lives, but trust, this is a truly caring and compassionate community.

There have been people who've come to us with two t cells, several OIs and they recovered and are mainstays. Theyre living normal lives and i know that you will recover and be like us, not even thinking about it until you take your meds.

I don't know much about Indian healthcare, but I would try to relax as much as you can and just envision yourself happy and healthy and helping others who will unfortunately be in your current situation.

Offline den2542

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Re: Just started new regimen
« Reply #21 on: December 20, 2017, 10:02:21 pm »
Not sure if this help but when I had thrush and didn't know what thrush was I gargle with both clear vinagar and hydrogen peroxide each separately. I'm praying for you brother. God we all are. And I spend my time in these forums bc if I can be of help to someone I will. Bc I remember how close I came.

Offline leatherman

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Re: Just started new regimen
« Reply #22 on: December 21, 2017, 06:51:26 am »
mycelex troches always helped to clear up my thrush (and I had it really bad several times). Of course to keep thrush away (for the most part) you'll need to get that viral load down (that just takes some time with ARVs) so that your immune system can keep the thrush in check.
leatherman (aka mIkIE)


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Offline Mendicant

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Re: Just started new regimen
« Reply #23 on: December 21, 2017, 10:07:46 am »
TB confirmed. Fungal infection in the in esophagus

Writing from hospital bed
 
Started TB treatment a few hours ago.l

Same time, amphotericin B by injection

Several antibiotics, paracetamol IV

Leatherman, dent with folded hands,  thank you
« Last Edit: December 21, 2017, 10:18:47 am by Mendicant »

Offline Mendicant

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Re: Just started new regimen
« Reply #24 on: December 23, 2017, 02:15:46 am »
Amy informed opinions on my choice of meds? Two doctors are of two different minds with my regimen.

Doctor A says I'm only taking two HIV meds (Dolutegravir) + (Dorunavir/Ritonavir) and I need to add tenofovir to the regimen.

Doctor B (my doctor who I trust) says the combo is potent.

Any opinions if I must add tenofovir (one more med burden)?

Offline Mightysure

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Re: Just started new regimen
« Reply #25 on: December 23, 2017, 03:17:16 pm »
Id go with what you have. Tenofovir is great, but nlt necessary.  Unless your current regimine is failing somehow, i see no need.

Offline Mendicant

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Re: Just started new regimen
« Reply #26 on: December 24, 2017, 02:13:02 am »
Mighty, I agree with you and though my doctor is out of town (returns tomorrow), the other doctor A pushing tenofovir added it to my protocol. But I very politely declined and said I'd rather wait for my primary doc.

Btw, Is this good news? On my dtg/drv/rtv boosted my first VL results came two days ago. With a VL of 227,000 in April 2017 (last checked), 15 days of above therapy started two weeks ago brought it down to 444.

Is it news to celebrate? Only that cd4 moved up only 14 points to 78.

And taking amphotericin b shots daily is knocking the hell out of me. Does anybody know for how many days ampho injections have to be taken for esophageal candidiasis? Are they over treating me?

Of course, full dose of TB treatment is going on simultaneously.

Ahh, feel like a walking pharmacy.

Offline Jim Allen

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Re: Just started new regimen
« Reply #27 on: December 24, 2017, 02:58:57 am »
taking amphotericin b shots daily is knocking the hell out of me. Does anybody know for how many days ampho injections have to be taken for esophageal candidiasis? Are they over treating me?

Well I'm glad to hear your thrush is being treated and sorted now. As I mentioned before 9 months of it whist on treatment for it is not good, so I suspect they are treating it as resistant or "invasive" esophageal candidiasis.

https://www.poz.com/basics/hiv-basics/candidiasis-thrush-yeast-infection

Quote
Ahh, feel like a walking pharmacy.

Once you have the candidiasis and the TB treated it will reduce the number of meds your on and hopefully this feeling will reduce/drop.

Quote
Btw, Is this good news? On my dtg/drv/rtv boosted my first VL results came two days ago. With a VL of 227,000 in April 2017 (last checked), 15 days of above therapy started two weeks ago brought it down to 444.

Is it news to celebrate? Only that cd4 moved up only 14 points to 78.

Sure, looks that is a huge reduction, the goal of HIV therapy is to suppress the virus and ideally within 6 months of starting treatment, now some get there quicker than others and you are well underway towards UD, give it a few months and you will get there.

Take it easy and hope you feel better soon.

Jim
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Offline Mendicant

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Re: Just started new regimen
« Reply #28 on: December 24, 2017, 05:55:21 am »
Thank you Jim, you are a sweetheart.

Offline Mightysure

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Re: Just started new regimen
« Reply #29 on: December 24, 2017, 11:04:38 pm »
Yes. Thats a big drop in a short amount of time. Its very much cause to celebrate. In the early days, that would've been considered undetectable because 500 was the cut off.  It seems as if the virus is responding well and there's no need to add anything.

Dont expect your CD4 to increase proportionately to your VL decrease.  Thats a slower climb, and it could seem frustrating at times, but the thing to keep in mind is that your virus is getting to UD and your OIs are being treated.

Offline Mendicant

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Re: Just started new regimen
« Reply #30 on: December 25, 2017, 03:33:48 am »
Thanks Mighty.

On a totally separate note (I'm still in the isolation ward in the hospital), I want to share and see if anybody has had any similar experiences

When I started taking Atripla in 2010, I also started taking 25 ml of Indian gooseberry juice with equal amount of water first thing in the morning on an empty stomach. IGJ is supposed to be useful in immune deficiency as per ancient Indian science of Ayurveda.

So I experimented and if I took it for a couple of months before going for a cd4, I would notice higher jump in cd4 count.

Then I would quit for 3 months and then notice a smaller increase.

I don't know if this is scientific or not, but I got totally sold into this.

Another secret. From 2012 through 2015 when I quit meds completely I was doing one day on, one day off, and kept on seeing my cd4 go up.

I was in top shape, traveling everywhere, and life was good. But then quitting the meds altogether in 2015 June brought me to the brink.

I'm not suggesting anybody try anything but once I reach home, I will start my IGJ formula.

If anybody has tried this or aloe vera juice and want to share their experiences I'd love to hear.
« Last Edit: December 25, 2017, 03:48:29 am by Mendicant »

Offline leatherman

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Re: Just started new regimen
« Reply #31 on: December 25, 2017, 07:06:29 am »
So I experimented and if I took it for a couple of months before going for a cd4, I would notice higher jump in cd4 count.

Then I would quit for 3 months and then notice a smaller increase.
what was the point range of this increase/decrease? CD4s can change by up to 100 points within a single day, so unless you experienced at least 150+/-, there was no statistical change in your count.

Two other things about cd4 counts:
1) the count is a quantity measure of how many cd4s you have in your system. It is not however a measure of the quality (i.e. strength or effectiveness) of those cd4s. The rationale is that having more cd4s means your immune system has a greater chance of fighting off germs - but that is not always the case. Some people live healthy lives with barely 300 cd4s while others who have cd4s about 1000 struggle with issues. So while more is certainly better, having more is no guarantee that you'll be any "healthier".

2) the best way to consider your cd4 count is by the trend of at least 3 tests over at least 3 months. Graph those points to see if your trend is up or down or flat. That's the best way to think about this highly fluctuating medical lab result.

Another secret. From 2012 through 2015 when I quit meds completely I was doing one day on, one day off, and kept on seeing my cd4 go up.
resistance to medication can happen when meds are taken infrequently. Infrequent dosing can allow the level of meds to drop to a lower level giving HIV a chance to learn how to work around the effects of the medication. Taking meds at any other rate than every day is simply asking for the trouble of the meds becoming ineffective against your HIV.  (a small caveat: HIV meds actually require at least 95% or more adherence to be effective).
leatherman (aka mIkIE)


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Tivicay/Prezcobix

Offline Jim Allen

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Re: Just started new regimen
« Reply #32 on: December 25, 2017, 07:18:36 am »
Indeed.

I've recently dropped 300 count between testing, I put it down to sneezing once and recession ;D. I've also jumped large numbers from time to time, my point is its means nothing.

Jim
 
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Offline Mendicant

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Re: Just started new regimen
« Reply #33 on: December 26, 2017, 05:02:01 am »
Guys, help me out here.
Is this not a catch 22 situation? I'm already dealing with severe esophageal candidiasis, then pumping in 7-8 antibiotics for TB treatment (which are causing more candida to develop) and then treating candidiasis with strong doses of amphotericin B.

Amphotericin is very hard on the body and I don't believe it's a long term treatment.

Is this a cycle that is hard to beat? How to best go about it?

My doc is still out of town and I want to do some homework before he gets back tomorrow.

Offline Expat1

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Re: Just started new regimen
« Reply #34 on: December 27, 2017, 09:52:34 am »
Sorry you are having some problems.  But please be assured that the doctors are doing everything possible to get your condition under control.   They are treating three conditions at once, and they need to adjust those treatments to each other and you.  As such the internet is not a very good place to consult as each treatment requires specific drugs, those drugs and interact with each other, and then there is the individual response of the patients.  Also each country has a bit different selection of drugs available, and each doctor has his or her own experiences to factor into all of this.

That said, I live in Thailand, and if I were to get TB I'd rather it be in Thailand than in America because, they have a lot more local experience with treating it.

So take a deep breath, and know that the best place to get information is from the doctors that are treating you and as issues arise see have faith that they will attempt to resolve them.

Good luck,
Hoping you have a Good Next Year.

Offline Mendicant

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Re: Just started new regimen
« Reply #35 on: December 27, 2017, 08:20:02 pm »
Thank you expat for that great advice. I'm an expat too living in India and now when I think about it, India has millions of TB cases each year while US may see a few hundred, so you are right, doctors are very adept in treating TB here.

I only like to get general opinions and give updates here, I know this is no place or substitute for medical advice.

So 5 days of amphotericin and I can eat and swallow much better (than before).

Only swelling in both feet and left cheek.

I can't wait to get out of the hospital and live a full life again. And not be suicidal again.

Wish you also a very happy new year and to all my fellow posters here.

Offline Mendicant

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Re: Just started new regimen
« Reply #36 on: December 28, 2017, 08:08:22 am »
Does amphotericin cause anemia? My hemoglobin has dropped quite a bit (about 7), albumin dipped to near 1, since 5 days of ampho. I know in a couple of CBC tests before starting meds and one before starting ampho, they were not as low as they are now.

Doctor is looking at giving me 1 unit of blood. Will that help?

Offline Jim Allen

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Re: Just started new regimen
« Reply #37 on: December 28, 2017, 08:34:52 am »
Hi

I will swing back and comment a bit more when I can give your thread the attention it deserves however ill leave you with this thought for the moment.

You are sick and being treated, a touch of anemia is not the end of the world all things considering were you could have been without the ongoing treatments. Work with your doctor, surly if it was a major concern they would have stepped in by now.

Try to keep in mind that this is only temporary that you are being treated with some of this stuff and once you have this all behind you, be adherent to your HIV meds as in daily, correctly and consistently this time, and don't fall into counting CD4 counts and drinking juice instead again. The only thing that suppresses your HIV successfully is HIV meds. This counting CD4 & Ancient Juice taking to treat it was a path of thinking that is counter productive and ultimately harmful/unhealthy.

I do hope you feel better soon and that you can build a rapport with the doctors treating you at the moment as I think that always helps, both the patient and the staff.

Jim
« Last Edit: December 28, 2017, 10:20:29 am by JimDublin »
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Offline Expat1

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Re: Just started new regimen
« Reply #38 on: December 29, 2017, 09:11:36 am »
Yes, 1 unit of blood is a usual treatment of anemia.  Again, it just shows that your doctors are on top of this.
Hope you feel better soon.  And Jim is right, the only thing that keeps your HIV in check is ARVs  or (HEART), not juice from ancient recipe.  So when this is all behind you, take your medicine daily and live life.
Have a Good New Year in 2018!

Offline Mendicant

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Re: Just started new regimen
« Reply #39 on: January 03, 2018, 08:35:55 am »
Hi all,

Wish you all a great 2018.

I'm also getting close to 4 weeks on treatment. Can't say I feel fully fine, there's a sense of slowness and fatigue.

I know nobody can even say if it's the meds or getting used to it.

Also, it's been a few days I've been discharged from the hospital. Amphotericin helped with severe candidiasis but felt very hard on the body. As I mentioned earlier, had to get a unit of blood. And had very low potassium levels. Besides, feeling like a log after each treatment.

Now, for the life of me, hiccups, one reason I went to see the doc, have not stopped, in fact, they come 5 in one go, then 1 every 4 seconds. They were there before TB treatment was started.

I've tried stopping breath (helps 50% of the time), drinking lemon water, other home remedies, but this is very persistent. Disrupts my diet, sleep, everything.

I checked online and none of my meds seem to cause hiccups. I'm taking 4 TB meds too at the same time with ARV, can't say if they are the culprit.

A friend suggested getting Regalan med but that appears to be for seizures, I'm afraid to try that.

Would homeopathy be an option for hiccups?

Offline Jim Allen

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Re: Just started new regimen
« Reply #40 on: January 03, 2018, 10:13:19 am »
 :)

Glad to hear you are out of the hospital and that you have the invasive candidiasis under control with the treatment. Harsh treatment but truly needed.

Quote
there's a sense of slowness and fatigue.


Would not surprise me, you been through a lot in the last weeks, finally treating the OI that was allowed to take hold and being stressed in Hospital, give yourself time and plenty of it to get back on top. Also I can imagine that the sleep being disputed by the hiccups must be adding to this feeling.

Quote
Now, for the life of me, hiccups, one reason I went to see the doc, have not stopped, in fact, they come 5 in one go, then 1 every 4 seconds. They were there before TB treatment was started.

I've tried stopping breath (helps 50% of the time), drinking lemon water, other home remedies, but this is very persistent. Disrupts my diet, sleep, everything.

I checked online and none of my meds seem to cause hiccups. I'm taking 4 TB meds too at the same time with ARV, can't say if they are the culprit.

A friend suggested getting Regalan med but that appears to be for seizures, I'm afraid to try that.

Would homeopathy be an option for hiccups?

Personally, Homeopathic Medicine is never an option for any real illness. Seen too many die from otherwise treatable illness and no qualitative independent evidence of its benefits.

Anyhow hiccups to the point it disrupts sleep ... Well I am really sorry to hear that, truly. I am sure you could do with good nights sleep given that you are feeling fatigued and disputed sleep is no good at all.

See a doctor again for advice, hiccups is caused from the movement of the diaphragm muscle.

Jim
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Offline Expat1

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Re: Just started new regimen
« Reply #41 on: January 03, 2018, 01:04:14 pm »
When I was in High School,  I got hiccups for 3 days.  Finally went to Doctor.  He gave me Librax   (Librium and something else).  Said that after a few days the body gets in somekind of feed back loop.  I would consult the Dr to make sure it is ok with the other drugs you take.  But it worked for me almost immediatley.

And three days of hiccups really did hurt. So I feel for you.


 LIBRAX®
(chlordiazepoxide HCl and clidinium bromide) Capsules

WARNING

RISKS FROM CONCOMITANT USE WITH OPIOIDS

Concomitant use of benzodiazepines and opioids may result in profound sedation, respiratory depression, coma, and death (see WARNINGS AND PRECAUTIONS).

Reserve concomitant prescribing of these drugs for use in patients for whom alternative treatment options are inadequate.
Limit dosages and durations to the minimum required.
Follow patients for signs and symptoms of respiratory depression and sedation.
DESCRIPTION
Librax combines in a single capsule formulation the antianxiety action of chlordiazepoxide hydrochloride and the anticholinergic/spasmolytic effects of clidinium bromide.

So the combo was an anti anxiety and an anticholinergic/spasmolytic
comes in 1 small pill.  I took them for a few days.  Then never again.

Offline Mendicant

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Re: Just started new regimen
« Reply #42 on: January 04, 2018, 10:43:15 pm »
Thank you Jim and Expat.

Yesterday I got some relief by itself, even a relief of few hours is God-sent, and I hope that I see more of that.


Offline Mendicant

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Re: Just started new regimen
« Reply #43 on: January 08, 2018, 03:02:34 am »
Hi guys,

A brief update and a couple a questions.

I have seen some relief in persistent 24*7 hiccups, now they stop on their own for a few hours but may start again unexpectedly esp. in the evenings.

5 weeks into new HIV regimen and while I'm very grateful that my VL is almost undetectable, I'm wondering if my body is taking too long to adjust to the meds.

A general feeling of malaise, occasional joint pains (ankle, wrist), lack of energy, enthusiasm, laying up in bed all day, that's how I'm spending my days.

I may find it an easy escape route to say it's because of TB meds I'm taking at the same time.

But this is my second TB infection in less than eight months and I don't recall feeling so blah.

Meds are working that's great, but is the body tolerating them as it should?

I wish there was a test to determine how well a body tolerates meds.

Any input would be very welcome.

Thanks!
Mani

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Re: Just started new regimen
« Reply #44 on: January 08, 2018, 03:13:53 am »
My two cents, there is a trend it seems to me from your posts of you looking to blame your HIV meds for illness now and historically leading you here.

Here are some things to keep in mind, you were very sick recently with OI and TB and needed aggressive treatment meaning a mix of meds, your only just out of hospital (That in itself is fatiguing) and it will take time for your body to heal. Your VL is not yet fully suppressed, so your body is still dealing with that and as your VL becomes suppressed and CD4 go up your body will also start healing things its ignored up till now as it was too weak meaning yeah you could feel sick anyhow on a good note you have made great progress but still have a way to go yet.

5 weeks is not long and in time, now if this is not the right combination for you as this can be possible and there are remaining side effects for you that you can not manage, well then you can switch. So that is not the end of the world. To switch you should talk to your doctor but I suspect at the moment they might tell you that first things first, treat and finish treating the OI's/TB, suppress the virus and give yourself time to heal and adjust.

Talk to your doctor about the complaints as it could be caused by other issues and its worth checking out. I do hope you feel better soon as its been a rough time for you and getting past that can be hard.

P.S
My only other thoughts are have you spoken to or considered speaking to someone face to face about how you are feeling? I mean like a therapists or counsellor? Often we focus on physical health but emotional health is just as important and can have a great impact on us.   

Jim
 
« Last Edit: January 08, 2018, 03:33:40 am by JimDublin »
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Offline Mendicant

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Re: Just started new regimen
« Reply #45 on: January 10, 2018, 07:12:35 am »
The  Unexpected!!!

This morning I woke up to find my whole body filled with red, clustered rashes (I don't know what else they can be called). Thankfully, they are not itching, but I noticed a few dots near the wrist last evening but didn't think too much of it.

I messaged the doctor with pictures and he suggested an anti-allergy pill which I took.

Total loss of appetite, in fact, I forcefully shove some food in the mouth because of strong meds I'm taking. Full body lethargy, no energy for anything. Body aches, pains that shift from the neck to shoulders to legs. Definitely feel I'm losing weight but am too afraid to step on a scale.

And no Jim, I'm not trying to blame meds or anybody else for my situation, I write here freely because I think the forum allows it, what I'm going through, what reactions I'm having. I appreciate the power of meds, support of the forum more than ever.

5th week into the meds.

Everybody says hang in there, it'll get better, but a human body has physical limitation on how much sh*t it can endure.

Offline Jim Allen

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Re: Just started new regimen
« Reply #46 on: January 10, 2018, 07:26:19 am »
I can only share my perception.

Anyhow good luck with the allergy, if the pill does not help do go see the doctor as rashes are hard to asses even in the best of conditions, they can also look at the other problems your have.

Did the hiccups subside further?

Jim   
« Last Edit: January 10, 2018, 07:32:41 am by JimDublin »
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Offline Mendicant

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Re: Just started new regimen
« Reply #47 on: January 10, 2018, 07:45:55 am »
Strangely enough, hiccups have reduced 90% on their own since 2 days ago, and I cannot be more grateful. Now, this one dry cough that keeps me up all night needs to go.

Btw, I do travel tomorrow to see the doctor in Delhi and figure out what's going on. Never helps to have a doctor 400 miles away.
« Last Edit: January 10, 2018, 07:50:23 am by Mendicant »

Offline Mendicant

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Re: Just started new regimen
« Reply #48 on: February 01, 2018, 02:48:11 am »
Latest lab results are mixed and partly confusing

While VL has gone down further from 444 ( from mid-dec) to 171 (end-jan), what got me thinking was VL drop was from 227,000 to 444 in about 15 days of treatment (when I first started treatment) and could not go to UD in one and a half month's of treatment.

Second, CD4 actually dropped by 20 points. When I was on atripla a few years ago, at every test my CD4 would rise, but this was a surprising result on dtg/dar/rit. It fell from 77 to 57.

Is cd4% measured in %cd3+/cd4+, ? If yes, then I've seen that number go up from 5% to 10%, the only saving grace from this lab report.

I guess if I had seen my cd4 rise, however slightly, I would have had more peace of mind.

I checked with my doctor and he's just glad to see VL go down, didn't have much to say about cd4.

Still dealing with a few skin issues since I've been on this regimen, including peeling and severe flakiness.

But for the most part I've learned to keep my mouth shut and just bear it.

Offline Jim Allen

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Re: Just started new regimen
« Reply #49 on: February 01, 2018, 04:24:52 am »
The CD4 total count change is insignificant.

Glad to see the VL is being suppressed and well on route to being UD, the last bit can take a few months longer for some people, so far you seem well on track though.

Jim
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