Living and dying

[MarkB]

It's been a while since I have posted, and a member of this forum whose views I respect greatly has suggested that I do so again. I was diagnosed in February of 2007; as far as I can tell, I was infected in mid 2006. At the time, my CD4 was 590 and my VL 245,000. Shortly after diagnosis, I developed shingles: I have no idea why, except that I had been nursing my mother, who died of cancer a fortnight after my diagnosis, and caring for my father, who had Alzheimer's. Not long after that, I was made redundant (twice), and then had to find a new place to live. Also, my close circle of friends reduced dramatically when I disclosed my diagnosis. All of this put me under a lot of pressure at the time.

I was put on Acyclovir to treat the shingles. By the time of my second set of tests my CD4 was 600 and my VL had fallen to about 9,000. It subsequently remained steady at about the 4,000 mark, but my CD4 eventually fell to 380 and the percentage went from 37 to 18. My blood pressure went up dramatically, and my cholesterol peaked at 9.7.  It is a 250-mile trip to the hospital in London where I was diagnosed and am being treated, as the local hospital (I live in a very rural area) has no HIV clinic at all and the nearest one, which is over 100 miles away, only sees patients on an ad-hoc basis. There are no support groups and I still only know one other person who is HIV+.

It's probably fair to say that I was clinically depressed at the time, and I certainly had suicidal feelings, but I stopped talking about how I felt at the HIV clinic as I was told that the hospital would have to "take action" (by which I assume they meant that I would be sectioned). As I didn't want that, I pretend to be happy whenever I go for my appointments. They hummed and hawed about medication, but eventually in September of 2009 they put me on Atripla and statins. To cut a long story short, physically the treatment seems to be effective. At the last test my CD4 was 740 and my percentage had gone up to 44. The last doctor I saw (I seem to see a new one every time I go) said that while these numbers aren't great they are reasonable, given my age. The cholesterol has gone down to 5.3.

Initially, I had a surge of energy and I felt a measure of contentment about how things were going. There weren't too many side effects, except for the vivid nightmares and the liver / kidney functions being elevated. As some of you may recall, I have had pretty some mixed reactions from my GP's surgery to my diagnosis, but fortunately I haven't had to go there in over a year. However, I have gradually descended into a sort of nightmarish twilight world, and about a year ago I became seriously depressed again. Obviously I'm not about to tell the HIV clinic as they don't want to know anyway, and I don't want to get packed off to a mental hospital. So I joined Dignitas, which is a Swiss-based euthanasia charity (the UK doesn't have provision for assisted suicide). At first, they seemed OK with my wish to end my life. Last year I contacted them to arrange to travel to Switzerland and undergo euthanasia. However, the interviews did not go well (it's not a swift process), and they eventually decided that I was too depressed to avail myself of their services at this time. Apparently you have to be happy to commit suicide. Imagine the pathetic scene: there was me, single, somewhat isolated, HIV+, haven't been sexually intimate with anyone since 2006, no job, no prospects, thinking that I was such a fucking loser that not even a euthanasia organisation would accept my request for euthanasia. It doesn't get much lower.

Of course I could take my own life in another way. But the beauty of the Dignitas arrangement was that nobody has to discover your body after you off yourself, and they take care of the cremation and the legal side of it afterwards. So here I am, feeling trapped, to be honest. The real reason why I wanted to die is because I'm no longer really alive. Sometimes I've wondered whether how I feel is just me, or whether the medication has something to do with it. But whatever the reason, this is not living, and it can't be a way of life.

Thanks for reading.
 

[spacebarsux]

I am at a complete loss for words.

I just pray and hope you find a way out of this hole.

One on one therapy can go a long way in making you feel better. I urge you to seek the help of a mental health professional at the earliest. Please don't give in, there has to be a way out of this.

I am sure some of the more experienced members will offer you more detailed advice.

[Theyer]

Your first paragraph details enormous loss and at a time when you needed to talk , for your circle off friends to constrict is cruel.

The hospital was very er clumsy.

Under the UK Mental health act they do have a duty to intervene when a person states they are suicidal ,but that intervention must start with an assessment on how strongly motivated you are to commit suicide ,it would include a psychiatrist , social worker with additional training in Mental health work and from the tone off your piece I would off been amazed  if they  had sectioned you to a psy Hos.

My clinic is the Kobler at Chealsea and Westminster. They have always had good links with There Mental Health services due to a Gay psychiatrist who was working there in the mid 80.s.

I have used there services/ Three periods off counselling with a Qualified Psychogist .It  was very good and useful.
I strongly suggest that you ask at your clinic for psychological help, do not be surprised if you are again asked the scuicde question, they have too as part off there work when making there assessment,

Your honest answer along the lines off yes I have thought a lot about it ,but I have made no attempts on my own life and my request is about daily on going depression not help to stop me taking my life in the next week,Will move the process on to hopefully a series off counselling sessions.

I am going away for a week but please feel free to ask further ? I will get back to your thread
best wishes
mhtv

[MarkB]

Thank you: that is very helpful.

I am aware that Atripla can exacerbate depression, and have often thought of just stopping it altogether and seeing whether there is something else they can give me to control the virus which doesn't make each day hard to face. I am tired of the nightly bad dreams and the sense of being adrift on a silent sea of sadness all the time. And, to be honest, I am just tired.

[BT65]

Theyer has given you some good advice.  I strongly encourage you to speak with your doctor about getting a different HIV med.  The Atripla seems to be doing a lot of damage to your mental health. 

Please reach out somewhere, and keep talking here.

[komnaes]

Hi Mark,

It's a bit long, but bare with me..

Let me tell you first I share your experiences of dealing with all those nightmares and vivid dreams. Unfortunately for some of us the Sustiva in Atripla can be really "evil" - to quote some of my friends here, who had been urging me to switch for over 12 months. The kind of mood problems and depression it brings only us - those who have experienced them first hand - would know how destructive they're.

So, trust me, don't, I repeat DO NOT, refuse to consider switching just for the fear of new meds. There are many many options that are as effective in keeping the virus at bay without the CNS side effects (dreams, etc), so there's absolutely no reason to keep on taking Atripla.

And I can also tell you - I switched 2 weeks ago, and you know what, despite some apparently severe side effects (I am recovering though and working with my doctor to adjust dosage, etc), I STILL think it's the best decision I ever made since my diagnosis. Why? The nightmares are GONE. Completely. I might still have one or two the last two weeks, but not only I could hardly remember them now (unlike in the past, I felt like I was just living through the nightmares' continuations for the rest of the day), I sleep better now and am much more clear-minded.

Right now, you would probably have to point a gun at the head first to get me back on Sustiva.

As for Dignitas, I am also a member. I signed up during the darkest days while struggling with side effects. Now I only think of it as a last option - like perhaps one day (hopefully many years away) I am diagnosed with something else terminal I may use them just to make my end easier for myself and family; and I remain a member to keep this option and to also support their services because I do also support their philosophy.

Having contacted them for a period of time, I am not surprised that they don't accept you. As far as the laws are concerned, I am rather sure that just HIV alone is no longer a good enough reason for assisted suicide, in particularly when the member requesting it is also showing signs of a major depression. It should have been clear to you that your chance of being accepted was very low to begin with - especially when Switzerland is going through a major debate (I believe a referendum) on allowing organizations like Dignitas to provide this type of support to non citizens. The last thing they want is to be caught with a case that the authority could challenge.

Dignitas, therefore, should only be seen as an option for folks that are really at the end stage of their life, suffering from a disease that they will soon die from or have no chance of recovery with only the prospect of complete physical and mental incapacity. In conclusion, hardly for someone who is only dealing with chemically induced side effect that can be dealt with by switching meds, and with a very good chance of keeping your HIV under control for years to come.

So please, take it from someone who shares your experiences - things will seem a lot easier once those dreams are gone, and you can begin to work things out, step by step.

And finally - since you're taking all those hours traveling to London for your check-ups, why not also time them with support groups there? Make some HIV friends there - and thanks for the internet - you can easily keep in touch with and talk to people for supports. Damn, you can even try to reach out to some of us. PM us!  You may be the only one in the village (excuse the Little Britain pun), but we can all be reached through the web. It's hardly a replacement of physical contacts, I know, but still beats not having any \at all.

Look mate.. your numbers are good, and life can be improved, as long as we take the first step to deal with the main culprit, the one drug that is causing this very severe side effect. Take action now.. no point of dealing with Dignitas now anymore and spending more resources on traveling there.. talk to your clinic/doctor to begin the process of switching. Come back to us if you need recommendations on med options. Talk to us here also if you need moral supports.

You sound like a good man and I am sure things will work out!

Hugs, Shaun

(edited for typos)

[MarkB]

Thank you Shaun, and I will think about what you, and the others who have posted here, are advising.

I do not know what to do about the drugs. At the physical level, this thing is working. Mentally, I'm a wreck. I had no history of depression (well, serious depression anyway), before diagnosis and treatment. But what if some new regime doesn't work? What if its own side effects are worse, physically, than the mental ones I am enduring now? As the doctor said to me "We don't have limitless options on treatment, you know". I am aware of the fact that if I come off Atripla I can never go back on it. Is it better to exist like this than to take the risk of a regime which might fail?

And why didn't Dignitas understand? HIV is a terminal illness. I just wanted it all to stop. Is that wrong?

[Assurbanipal]

I do not know what to do about the drugs. At the physical level, this thing is working. Mentally, I'm a wreck. I had no history of depression (well, serious depression anyway), before diagnosis and treatment. But what if some new regime doesn't work? What if its own side effects are worse, physically, than the mental ones I am enduring now? As the doctor said to me "We don't have limitless options on treatment, you know". I am aware of the fact that if I come off Atripla I can never go back on it. Is it better to exist like this than to take the risk of a regime which might fail?

Mark

I really think you need to get off Atripla and one of the most useful things this forum could do is to help you figure out what buttons to push with your London clinic so that they give you a new set of drugs.  While treatment options are not limitless, they are large -- one suspects your doctor said that as a way of encouraging adherence to treatment, rather than as an expression that you only have one potential course of treatment.

And unless there is some specific UK treatment protocol involved, there's no physical reason  that if you leave Atripla you couldn't go back on it if you wanted to.  You just have to make sure that you make a seamless transition to another set of drugs so that resistance does not develop (the problem is that the sustiva component in Atripla lasts days longer in your body than the other two components -- so if you just stop Atripla without starting something else you wind up effectively on sustiva monotherapy, which is when resistance develops)

But at any rate I'm hoping some of our UK members will chip in with advice on how to persuade your doctor to put you on a better combo.  You deserve better treatment than you have received.

Assurbanipal

[komnaes]

Mark,

I am from Hong Kong, our system is modeled on the NHS and as far as I know they're very similar. But there bound to be some differences, so I will leave the details to other UK members.

But I can share my experiences - the doctors here will not actively discuss alternatives to a combo/med (especially if your numbers are good) UNLESS they're aware of the severity of your side effects. Persisting nightmares and depression are severe side effects that HAVE to be dealt with, and I can assure you that no experienced and responsible doctors would not consider switching if they're aware of them in a patient.

As for new combos, DO YOUR OWN HOMEWORK FIRST. I know what you're gone through all these years, but as long as we're not physically incapable of doing so (and also when help is readily available as in here) it's really up to us to help ourselves. Once I made the decision to switch, I came back here to ask for recommendations, and I got a full list of options, backed with informed knowledge and first hand experiences, within days! I am grateful for that.. but that's exactly what we're here for each other.

I brought those recommendations back to my doctor and he was happy to explain them to me and we quickly made a decision. Granted, there's no guarantee that a new combo will be side effect-free, but it's still a step you must take now because of the severity of mood issues Atripla is causing you. Like I said, and I cannot emphasize it more, once the dreams begin to subside, you will see things, or even your life, VERY differently.

And you're wrong to say that HIV is terminal.. nowaday it's almost like saying life is terminal because we ail gonna die anyway. Terminal only has any real meaning if death is imminent. HIV is definitely incurable, but it's also manageable. With meds we are living longer and longer, almost to the point of normal self expectancy. I don't know what you've gone through with Dignitas - but I imagine you've only met their people for a primarily interview; after that they would also need a doctor to certify that a member is suffering from a "terminal" condition that death is imminent. With that in mind, can you see now why Dignitas is not an option?

Look, if you want to start now, just say you'd like to find out what are other available combo options for you, OK? We can ask the mods to move it to "Treatment and Side Effects" later. It is actually that easy. I had spent too much time suffering before switching, and now I see why no one, I mean NO ONE, should allow himself to suffer like this while the solution is just an easy decision to switch off Atripla/Sustiva.

I have a good feeling that "it" will all stop for you as well.

Hugs, Shaun

(modified for typos)

[MarkB]

Look, if you want to start now, just say you'd like to find out what are other available combo options for you, OK? We can ask the mods to move it to "Treatment and Side Effects" later. It is actually that easy. I had spent too much time suffering before switching, and now I see why no one, I mean NO ONE, should allow himself to suffer like this while the solution is just an easy decision to switch off Atripla/Sustiva.

I'm happy for the mods to move this thread if they feel it is in the wrong place.

MarkB

[komnaes]

Hi Mark,

Look at what you've quoted:

Look, if you want to start now, just say you'd like to find out what are other available combo options for you, OK? We can ask the mods to move it to "Treatment and Side Effects" later.

A question about side effects belong to "Treatment..", there's no need to move this current thread. So do you want us to start sharing our experiences and ask for other recommendations on alternatives to Atripla that is likely to the cause of your depression?

Hugs, Shaun

[Ann]

Mark, as your post is mainly about depression, it's probably best left here.

However, that does not mean you cannot start a new thread in the Treatment forum about the possible combos to which you can switch.

It's not true that if you stop using Atripla, you cannot ever go back. It's only one drug in the combo out of three - Sustiva - that is a bit tricky to stop, but if you go straight from a combo including Sustiva to another combo without interruption, this is no longer a problem. It's only when you stop Sustiva and do not replace it immediately with something else that you can have problems.

You really only need to change one element of your current combo and that's Sustiva. Sustiva is notorious for causing depression even in people who never had problems with depression before. There are quite a few other options you can consider and I strongly urge you to post a new thread in Treatment so others can help you explore the options.

You do not have to continue to put up with what Sustiva is doing to you, regardless of what your doctor says. You are the person who has to take the meds, not him, and ultimately your treatment decisions lie with you.

Good luck Mark, I hope you get this sorted soon.

Hugs,
Ann
xxx

[thunter34]

I lost a friend / romantic interest a few years back to suicide, and I am convinced to this day that his medications helped further the spiral that eventually claimed him.

[Assurbanipal]

Mark

It seems so clear that Atripla is part of the problem.  I wonder about your doctor's resistance to changing it out.  Might it be, in part, because you live so far away were there to be any problems after the switch?  If that is a concern, do you have any options to stay with friends nearer London for the first week or so after a switch and would that make a switch more feasible for your doctor?

As far as treatment options, since you are doing well physically on Atripla, why not ask for a switch to Truvada / Isentress?  Truvada is two of the drugs in Atripla, and this would just switch out the Sustiva component that makes people depressed.  Isentress is twice a day, but it is heat stable and doesn't require food. 

Best, my friend
A

[MarkB]

As it happens I am due to go to the clinic shortly, and I will discuss all of this with whomever I see. In the meantime, following posters' comments here, I spoke with one of the CNS team. While he acknowledged that ultimately it is a matter for my clinician, his advice was strongly against my asking to come off Atripla, and said that Sustiva is "the drug of choice". I did not know this. He also pointed out that any regime will come with its side effects, some of which could be worse that what I am experiencing currently. He also underlined the fact that my numbers are OK at the moment. Basically, his approach was along the lines of "Ffs, would you stop whinging and man-up?!"

[Assurbanipal]

Is CNS-- clinical nurse specialist?  or Central Nervous System specialist?

(Two countries -- divided by a common tongue...)

But I find what he told you outrageous (in the literal sense of the term -- I feel my blood pressure rising as I type.)  The idea that Sustiva is the drug of choice for someone who has turned to thoughts of suicde after starting it is, at best, uninformed.  You cannot be expected to "know" things which are not true. 

And... where does he get off, recommending that you not even talk about the issue with the doctor?

Perhaps, though, you might want to arm yourself for this discussion by printing out the official warnings about depression that come with Sustiva.  In the US they would be here: http://packageinserts.bms.com/ppi/ppi_sustiva.pdf

What are the possible side effects of SUSTIVA?
Serious psychiatric problems. A small number of patients experience severe depression, strange thoughts, or angry behavior while taking SUSTIVA. Some patients have thoughts of suicide and a few have actually committed suicide. These problems tend to occur more often in patients who have had mental
illness. Contact your doctor right away if you think you are having these psychiatric symptoms, so your doctor can decide if you should continue to take SUSTIVA (efavirenz).

and here: http://packageinserts.bms.com/pi/pi_sustiva.pdf

5.4 Psychiatric Symptoms
Serious psychiatric adverse experiences have been reported in patients treated with SUSTIVA. In controlled trials of 1008 patients treated with regimens containing SUSTIVA for a mean of 2.1 years and 635 patients treated with control regimens for a mean of 1.5 years, the frequency (regardless of causality) of specific serious psychiatric events among patients who received SUSTIVA or control regimens, respectively, were severe depression (2.4%, 0.9%), suicidal ideation (0.7%, 0.3%), nonfatal suicide attempts (0.5%, 0), aggressive behavior (0.4%, 0.5%), paranoid reactions (0.4%, 0.3%), and manic reactions (0.2%, 0.3%). When psychiatric symptoms similar to those noted above were combined and evaluated as a group in a multifactorial analysis of data from Study 006, treatment with efavirenz was associated with an increase in the occurrence of these selected psychiatric symptoms. Other factors associated with an increase in the occurrence of these psychiatric symptoms were history of injection drug use, psychiatric history, and receipt of psychiatric medication at study entry; similar associations were observed in both the SUSTIVA and control treatment groups. In Study 006, onset of new serious psychiatric symptoms occurred throughout the study for both SUSTIVA-treated and control-treated patients. One percent of SUSTIVA-treated patients discontinued or interrupted treatment because of one or more of these selected psychiatric symptoms. There have also been occasional postmarketing reports of death by suicide, delusions, and psychosis-like behavior, although a causal relationship to the use of SUSTIVA cannot be determined from these reports. Patients with serious psychiatric adverse experiences should seek immediate medical evaluation to assess the possibility that the symptoms may be related to the use of SUSTIVA, and if so, to determine whether the risks of continued therapy outweigh the benefits. See Adverse Reactions (6.1).

6.1 Clinical Trials Experience in Adults
...
Psychiatric Symptoms
Serious psychiatric adverse experiences have been reported in patients treated with SUSTIVA. In controlled trials, psychiatric symptoms observed at a frequency of >2% among patients treated with SUSTIVA or control regimens, respectively, were depression (19%, 16%), anxiety (13%, 9%), and nervousness (7%, 2%).

17.5 Psychiatric Symptoms
Patients should be informed that serious psychiatric symptoms including severe depression, suicide attempts, aggressive behavior, delusions, paranoia, and psychosis-like symptoms have been reported in patients receiving SUSTIVA [see Warnings and Precautions (5.4)]. If they experience severe psychiatric adverse experiences they should seek immediate medical evaluation. Patients should be advised to inform their physician of any history of mental illness or substance abuse.

Good luck.  Don't take any nonsense from the nurses (easy for us to say...)

[MarkB]

Hello Assurbanipal

"Clinical Nursing Specialist". I think he was suggesting that Sustiva was "the drug of choice" for controlling the virus; in regard to the symptoms, he obviously felt that 'the better the devil you know than the devil you don't'. Which is, of course, a powerful argument. I have no history of mental illness, though god knows enough has happened since diagnosis to feel depressed about. But this isn't just a case of "feeling down in the dumps": it's like being eaten alive.

/... edited for clarity.

[phildinftlaudy]

My suggestion might seem a little extreme - and being in the US and you being overseas - it may not have the same effect, but, if I was having depression issues and felt my meds were making the problem worse (namely the Sustiva) and my doctor did not want to change my combo - after me telling him/her my issues, this is what I would do....   I would write out on a piece of paper that I had advised him of the issues, I would write on the same piece of paper that he was refusing to change my meds - I would then present it to him and have him sign it acknowledging these facts ---- I would inform him that if any adverse events happened to me as a result of his inaction, that my family and/or other representatives (or myself) would be taking whatever legal action appropriate against him and/or the clinic as a result of his failure to address these issues when made aware of them.  If he won't sign the paper, I would at least make him aware of its existence and, if you have someone that can accompany you to the clinic to be a witness that would also be a plus.  You'd be surprised at how "accomodating" even the most arrogant doctors can become when they know that they are under threat of being held accountable for their actions.

Whatever you decide - please know that people do care about you.  Feel free to continue sharing and seeking suggestions.  The very best to you Mark.

-Phil

[Zohar]

Hi MarkB,  Sorry that you're suffering from depression and hope that you can get the help and support you need.  I can only reiterate what has been said already about coming off Atripla - it's simply not for everyone and your doctor will know this. I took it for a short period of time and it made me feel ghastly and quickly made the decision that I had to stop as discussed with the doctor. I actually know several people that have had a very similar experience after various amounts of time and all switched to other treatments and their mental health improved both dramatically and quickly. I started to feel far more like myself within about 48 hours.

I know that doctors in the UK are not crazy about switching people onto different combos but, believe me, they would MUCH rather you did that than commit suicide.

Whenever I've enquired about Isentress I've always been told that it's reserved for when the main classes have been exhausted so I would be surprised if you were offered that. So I imagine that you will be offered something like Nevirapine and Truvada, or the most commonly prescribed PI here which is Prestiza, along with Truvada and Norvir. Neither of these combinations are known to have CNS side effects and I honestly can't see why your doctor would have trouble switching you over.

I know some people find doctors a bit daunting but you really have nothing to lose by telling him/her that you have struggled with Atripla and will be stopping so need them to go through the alternatives with you.

[MarkB]

Thank you Zohar (your nick makes me think of זֹהַר‎‎ (splendour, radiance)): beautiful name.

What you and others say sounds wise; there are, however, many fears and questions - as well as "what if's?". I didn't know that Isenstress is reserved for the last line of treatment. In fact, there is so little I know about any of these drugs, and even if one or another combination seems good on paper, or from the recommendations of others, it doesn't, of course, mean that they will work for me.

In a way, this thread has served one very important purpose. It tells me that I am not going mad.

Kindly,

MarkB

[Zohar]

Something I've learned is that doctors do not like patients going in demanding a specific drug, so I would hold back on aiming for Isentress if I were you. In any case, given your issues that might not be the next best drug for you since one study reported similar rates of insomia to Sustiva:

http://www.thebody.com/Forums/AIDS/Meds/Q206731.html

I'm not one to tell people what to do as I hate that myself but I would strongly suggest you consider seeking therapy via your clinic as it sounds as if you need more emotional support than you perhaps acknowledge. I do find it troubling that you've devoted so much time and energy in investigating ending your own life, before you've researched the various HIV drugs you could take instead and talked this through with your doctor.

Don't be afraid to ask for help and guidance at your clinic, be that from your doctor, a therapist, or social worker. I think most clinics in London have some sort of 'patient rep' who are often positive themselves, and whose function it is to help steer patients through the system  (you should be able to get their contact details from your clinic receptionists). Please make use of all this support before you even contemplate taking your own life again.

[MarkB]

Further to Ann's suggestion, and following a lengthy meeting today with my new doctor, I have posted on the Treatment forum. I would continue to welcome any thoughts and suggestions you may wish to offer.

Kind regards,

MarkB

[newt]

Hello Mark

Sent you a private message

For the record the technical part of it is here:

"All modern combos work as well as each other. There is choice, lots of choice. The "drug of choice" thing for efavirenz-based combos like Atripla is about 5 years old (ie 5 years out of date). Plus, getting really depressed on Atripla/efavirenz is a noted (in guidelines around the world) reason to use something else."

It may not solve all your depression issues, but it will help to be on a combo without efavirenz in it.

- matt