POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Zohar on August 16, 2010, 01:06:08 am
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I'm coming up to the end of my first month on Prezista, Truvada and Norvir and although things started out OK, I've spent the last two weeks with constant lower abdominal pain.
I have also completely lost my appetite and when I do prepare meals I find that I simply can't eat very much of it all. My diet has been reduced to a couple of bowls of a cereal a day, and about a litre of orange juice. Like a lot of people with HIV, I'm concerned about weight loss and a dear old friend who I've not seen in some time gently told me she thought I was looking on the thin side - she actually offered to buy me food right there!
Has anyone got any advice on either of these issues?
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Hey there Zohar,
I'm on the same regimin, never had any appetite problems as you describe.
Given that you are only eating a couple bowls of cereal a day, I would definately get in to see your doctor asap, I would call him today. I wouldnt mess around with this by waiting any longer.
Keep us posted,
Will
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Zohar, I see that on July 12th you discussed previously taking astragalus in tincture form for appetite loss. Since you just stated that you've only been on this med regimen for a month is it safe to assume that you had appetite issues as well previous to starting it and then they returned? I'm kind of confused.
A substantial loss of appetite is always an area of concern, and you should discuss this with a doctor.
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Yes, I have had issues with poor appetite earlier on in the year which I had some success with treating with astragalus, but I seemed to be well over that. Before starting this regime I was eating a pretty decent amount, at least 2000 cals. a day, but within a couple of days of taking the drugs my appetite vanished completely along with the appearance of the aforementioned abdominal pain.
I don't think I can live on a couple of bowls of cereal and fruit juice for too much longer! :(
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I've just checked on the Prezista website and they state that abdominal pain is a known side effect of the drug.
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Yes, I have had issues with poor appetite earlier on in the year which I had some success with treating with astragalus, but I seemed to be well over that. Before starting this regime I was eating a pretty decent amount, at least 2000 cals. a day, but within a couple of days of taking the drugs my appetite vanished completely along with the appearance of the aforementioned abdominal pain.
I don't think I can live on a couple of bowls of cereal and fruit juice for too much longer! :(
Thanks for the clarification -- and no, you can't live on cereal and fruit juice.
I had appetite issues back from 1999-2003 and you do not want to go down the road. What was your baseline weight and how much have you lost?
I'd still have this discussion with your doctor, and in the interim I'd score some protein drink/powder (to make shakes) meal replacement type thing. I used to use EAS Myoplex. Don't waste you time/money on piddlysquat stuff like Insure.
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''I had appetite issues back from 1999-2003 and you do not want to go down the road. What was your baseline weight and how much have you lost?''
What happened when you had appetite issuses?
My baseline weight is 67kg so I'm naturally slim, but I don't know what it is at the moment as I don't have any scales. The trouble with me is that I tend to lose weight on my face first so I've started to look quite gaunt now.
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What happened when you had appetite issuses?
I lost such a substantial amount of weight in such a quick time I had an actual clinical diagnosis of HIV-related wasting.
I don't mean to be critical, but how can you be worrying so much about this and not even be weighing yourself? Could be much ado about nothing. You're not giving anyone on here enough information to clearly say how much of an issue it is, or even if you should be ringing up your doctor.
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I think not being able to eat a proper meal in close to a month is the real issue here, regardless of my weight. Even if my weight had stayed the same (which it hasn't as clothes no longer fit properly) I want to return to my regular diet of three full meals a day.
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OK, fine. So why haven't you called your doctor? A month is a long time to just eat bowls of cereal.
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Just wondering if anyone else has had any experience of these issues? If so, how did you deal with them?
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Just wondering if anyone else has had any experience of these issues? If so, how did you deal with them?
Hi Zohar -
I think one of the biggest answers you are going to get in regards to abdominal pain and appetite/weight loss issues is that people dealt with it by seeing their doctor.
There are so many different factors that could be at play that it would make it difficult for someone to give any other answer, because even though that solution may have worked for them, you situation may be different.
I know for me, early on I had GI issues which were related to GERD, also found out I have diverticulosis and hiatic hernia. I also had a swollen spleen early on.
So, the best advice is to consult with your doc and see what is the most appropriate treatment based on what may be going on - either that or buy stock in cereal companies.
Hope you find out what is going on so you can effectively treat it. :)
Edited for spelling.
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Just wondering if anyone else has had any experience of these issues? If so, how did you deal with them?
I had dramatic loss of appetite with rapid weight loss recently, but my situation was different from yours in that a) I had been overweight and was therefore quite happy about the situation and b) I knew what the cause was, and that it was not going to go on forever. Of course if it had gone on and on I would have discussed it with my doctor, which is what I, like everyone else here, think you ought to do. (As it was, the discussion I did have with my doctor was along the lines of--"how can I avoid gaining it back?")
I too drank orange juice during my illness. The funny thing was that I had just written against juice in a thread here--too much sugar too quickly etc.--but in my illness it was a quick way to make sure that I got a few calories at least. Eating was about half a banana and half a piece of toast a day, and I was actually struggling to get them down. Considering what a glutton I normally am it astonishes me that I was like that. Again, because I was starting from a point of being overweight, I didn't force myself to eat more than I wanted. If I had felt that I was underweight I would probably have tried to do so.
One peculiarity of my situation was that all food and water tasted disgusting to me. I love good cheese, but it was revolting to me while I was ill! Water tasted like poison, etc. The worst was that my grandmother was staying with me for part of it, and I was cooking gourmet meals for her and watching her eat them and hoping that they tasted good, and she was assuring me that they did, but they all tasted to me as if they were rancid.
There is a degree to which I believe in listening to the body and letting it do what it wants; maybe for a certain time a fast is what one's body wants--I think that was the case with me--but again I wouldn't go too far in that direction.
You are at least mentioning cereal; I assume given the circumstances that you're at least using whole milk. Milk is probably the premier weight-gaining food. Could you enjoy ice-cream? Rice pudding? Bread with lots of butter? Would you be able to eat a couple of eggs a day for protein? How about a shake with cream, yogurt, egg yolk, banana, and honey? These are all things that would at least keep you from real malnutrition until you get things sorted out, and they should be relatively easy to get down.
Finally, you mention recently have started a meds regime. Could you be going through IRIS right now, or just adjusting to the new situation?
Good luck!
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CRAP! I'm going through that too. I was on Vericept, Epiver and Zerit two times a day and switched toyour meds once a day. The side affect war off and are not as bad as I was having on the old meds.
Relax, take somenix. That's a joke. Just adjust to your life now.
Love, Huggs and Tuggs. Hang in there and hang out with us.
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Actually, most savoury food taste sort of bitter at the moment,which means that meals aren't appetising.
I guess a doctor would be able to advise if IRIS is at the bottom of this, although I'm aware that gastrointestinal issues are one of the more common side effects with PIs.
I like to hear about other peoples experiences and I think that is pretty much the point of the '...Treatment and Side effects' forum, although it obviously doesn't, and shouldn't, replace seeing a doctor. I started this thread when I did because I have a scheduled appointment with my GP this week and just thought this might bring up particular things I could feed into the consultation.
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Actually, most savoury food taste sort of bitter at the moment,...
That's why most of the things I suggested were on the sweet side, like ice-cream etc.--because I know from my own recent experience about how that is. But if you're having abdominal pain maybe warm, liquidy things would go down more easily? In the east they always give thin rice porridge to convalescents, and in the west of course there's good old chicken broth. One good way to add calories to chicken broth is just to add a bit of coconut milk; then a squeeze of lemon and a bit of ginger and you have a very revivifying drink.
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Thanks for the tip, Nestor, but I don't eat anything that ever had a face! So it's creamy vegetable soups for me!
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When I was having appetite issues everything tasted odd or bad. Does thrush cause this?
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When I was having appetite issues everything tasted odd or bad. Does thrush cause this?
It does. But so can a range of other things, including some medications.
MtD
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When I was having appetite issues everything tasted odd or bad. Does thrush cause this?
That makes at least three of us now. I don't think I had thrush, and I wasn't on any medication.
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Jut a quick update. I saw the doctor a couple of days ago and he thinks that the problems I'm experiencing are side effects. He prescribed an anti spasmodic and anti nausea drug. I've taken both in the last 48 hours and neither has really made much difference.
He was concerned about my diet and wanted to prescribe supplementary milk shakes (Skandishake) to boost my calorie intake, but due to clinic rules and red tape, was unable to do so. Good old NHS, eh?
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If he thinks it's a side effect, and seeing how it's gone on for a month and you've only ate cereal, why in is he not recommending changing the drug that he believes is causing this?
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Jut a quick update. I saw the doctor a couple of days ago and he thinks that the problems I'm experiencing are side effects. He prescribed an anti spasmodic and anti nausea drug. I've taken both in the last 48 hours and neither has really made much difference.
He was concerned about my diet and wanted to prescribe supplementary milk shakes (Skandishake) to boost my calorie intake, but due to clinic rules and red tape, was unable to do so. Good old NHS, eh?
So basically nothing has changed, Doc couldnt even get you supplements?
I'm with MissyP and am wondering why he didnt consider a change in regimin, or perhaps further tests? something?
Perhaps it's time for another doctor/
-Will
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@willywump: If the doctor thinks it's a side effect, what 'further tests' should he be considering?
He seems to think that things will settle down in time and that it's worth sticking with this regime for the time being. I have to say, I'm not passionate about staying on these particular drugs, but given that I've experienced side effects on three regimes to date, there's a fairly high chance I'd have problems on other treatments.
It's amusing that when I started this thread some people responded with 'See your doctor', and now that I have, his professional opinion is being questioned with the suggestion that I should switch to someone else (who may well take exactly the same approach as my current doctor)! :)
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@willywump: If the doctor thinks it's a side effect, what 'further tests' should he be considering?
He seems to think that things will settle down in time and that it's worth sticking with this regime for the time being. I have to say, I'm not passionate about staying on these particular drugs, but given that I've experienced side effects on three regimes to date, there's a fairly high chance I'd have problems on other treatments.
It's amusing that when I started this thread some people responded with 'See your doctor', and now that I have, his professional opinion is being questioned with the suggestion that I should switch to someone else (who may well take exactly the same approach as my current doctor)! :)
If you stated previously in this thread that you were already on your third regimen due to side effects I didn't see it, and I apologize if I overlooked this.
So that's why Wumpy and I asked what we did, and now we have the proper answer -- see how an internet message board works?
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Still finding the responses ironically funny! ;D
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Zohar
I have the same regime of meds you are on plus etravirine, yes i do have stomach cramps and loss of apetite. Also as I was discussing my hemoglobin issues with my hematologyst, he suggested that I take Megestrol Acetate. I then remember he prescribed it when I was in the middle of chemoabout 15 years ago (before the HIV thing). Consulted with my HIV doctor and took it. It works, man! I did a number on my fridge..I started eating again and gained back the weight. With that drug you have to be careful and just take it for only 60 days maximum. Ask your doctor if that is a safe alternative for you. Good luck!
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Beanconpr: How long have you been on this regime for?
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Zohar,
I take prescription Bentyl (dicyclomine) 2 X 20mg tablets and OTC acidophilus twice a day at the same time I take my Viracept and Combivir. It really helps, if not alleviates, the cramps.