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Let's talk about CFID's Patients Drug Sensitivities/Intolerances
- Thread starter Navid
- Start date
Lisa,
My first concern would be that some potentially beneficial treatments might be judged as having too many side effects (or the trials might be stopped prematurely) when the problem was actually initial dosing schedules or combinations of medications that were too aggressive.
jackie
Senior Member
- Messages
- 591
shane, lisa
exactly. (makes me think of that ridiculously BRIEF Acyclovir study done 20-some years ago...it lasted 30 DAYS! what was that about.............?!)
My own example...I continue to waffle over beginning immune modulator Eguilibrant, because I'm afraid of how I will feel on it. I have a relative that has been taking it for several months and every time she tries to tirate up to an entire pill - she feels terrible....on the other hand as long as she stays at 1/2 a dose, she feels really good - and is seeing an overall improvement in her me/cfs. Although the "goal" is to incease the dosage - if this is the maximum for HER (and it's helping)....why not?
Our systems are different, so I may take 1/8 -1/4 to test MY system out. Some people break off CRUMBS of their meds to control dosages...or have them compounded into liquids or "sprinkles" (didn't you use a liquid for one of your meds, Shane?). Of course, to some people even a tiny drop on the tonque may be too much. When you'e already fragile and sick...having the patience to wait it out...can be too much to bear.
I think it's going to take a lot of experimentation AND demanding some accommodation and leeway from our providers when the time comes. Not to mention a demand for our OWN meds! j
exactly. (makes me think of that ridiculously BRIEF Acyclovir study done 20-some years ago...it lasted 30 DAYS! what was that about.............?!)
My own example...I continue to waffle over beginning immune modulator Eguilibrant, because I'm afraid of how I will feel on it. I have a relative that has been taking it for several months and every time she tries to tirate up to an entire pill - she feels terrible....on the other hand as long as she stays at 1/2 a dose, she feels really good - and is seeing an overall improvement in her me/cfs. Although the "goal" is to incease the dosage - if this is the maximum for HER (and it's helping)....why not?
Our systems are different, so I may take 1/8 -1/4 to test MY system out. Some people break off CRUMBS of their meds to control dosages...or have them compounded into liquids or "sprinkles" (didn't you use a liquid for one of your meds, Shane?). Of course, to some people even a tiny drop on the tonque may be too much. When you'e already fragile and sick...having the patience to wait it out...can be too much to bear.
I think it's going to take a lot of experimentation AND demanding some accommodation and leeway from our providers when the time comes. Not to mention a demand for our OWN meds! j
Robin & Lisa,
I've discussed acyclovir (a relatively mild anti-viral) at length with Dr. Montoya. The typical dose for someone with an HSV-1 or HSV-2 infectious outbreak is 3200 mg/day. They start at that level right out of the gate and seldom have any side effects. I was started at 100 mg/day and have been tapering up at an additional 100 mg every 2nd week. I had, and to a lesser degree five months later, continue to have mild side effects (and more recently significant improvement) that my pharmacist refused to believe were related to acyclovir even though what I an experiencing is listed in the PDR. I've heard of patients that started at 100 mg and ended up in the ER. Those same patients were taken off anti-virals for a period and then restarted at 40 mg with equally small increases over time and they are now seeing benefits. As for why we're so sensitive to some meds, who knows.
I don't know that I would assume all of this has already been worked out. I would opt instead for vigilance and a willingness to be open to modifying beliefs and assumptions as evidence accumulates. At times we are such an unknown entity. Researchers are already looking back at what was thought to be safe (or ineffective or too dangerous) four years ago (starting with full doses of Valcyte or acyclovir) and rethinking many assumptions.
I've discussed acyclovir (a relatively mild anti-viral) at length with Dr. Montoya. The typical dose for someone with an HSV-1 or HSV-2 infectious outbreak is 3200 mg/day. They start at that level right out of the gate and seldom have any side effects. I was started at 100 mg/day and have been tapering up at an additional 100 mg every 2nd week. I had, and to a lesser degree five months later, continue to have mild side effects (and more recently significant improvement) that my pharmacist refused to believe were related to acyclovir even though what I an experiencing is listed in the PDR. I've heard of patients that started at 100 mg and ended up in the ER. Those same patients were taken off anti-virals for a period and then restarted at 40 mg with equally small increases over time and they are now seeing benefits. As for why we're so sensitive to some meds, who knows.
I don't know that I would assume all of this has already been worked out. I would opt instead for vigilance and a willingness to be open to modifying beliefs and assumptions as evidence accumulates. At times we are such an unknown entity. Researchers are already looking back at what was thought to be safe (or ineffective or too dangerous) four years ago (starting with full doses of Valcyte or acyclovir) and rethinking many assumptions.
shane:
i agree with you. i think we will have to start at miniscule dosages and titrate up....2 problems i'm concerned abt:
1) will docs agree to this
2) do we have to worry abt drug resistance because we are starting with such low doses
i believe montoya, at the start of his work w/valcyte and cfid's pts, worked under the premise that you had BLAST the infection with high doses.
i know the 3 lyme docs i worked with at the start of my illness also believed this about abx treatment...you had to hit the infection hard or else it would become resistant. i did in fact end-up in the hospital at least 3 times after taking my full dosage of abx protocols and entering into near comatose states...only time and iv fluids brought me back to my baseline crappy state.
when i finally stopped taking abx, my health improved to where it is now...approx a 50 on the kps scale.
i guess what we will need to learn is whether or not "hiv" drugs can be titrated up or if this will just embolden the retro-virus.
thanks
i agree with you. i think we will have to start at miniscule dosages and titrate up....2 problems i'm concerned abt:
1) will docs agree to this
2) do we have to worry abt drug resistance because we are starting with such low doses
i believe montoya, at the start of his work w/valcyte and cfid's pts, worked under the premise that you had BLAST the infection with high doses.
i know the 3 lyme docs i worked with at the start of my illness also believed this about abx treatment...you had to hit the infection hard or else it would become resistant. i did in fact end-up in the hospital at least 3 times after taking my full dosage of abx protocols and entering into near comatose states...only time and iv fluids brought me back to my baseline crappy state.
when i finally stopped taking abx, my health improved to where it is now...approx a 50 on the kps scale.
i guess what we will need to learn is whether or not "hiv" drugs can be titrated up or if this will just embolden the retro-virus.
thanks
Forebearance
Senior Member
- Messages
- 568
- Location
- Great Plains, US
My experience has been that it takes a lot of finesse and patience to figure out doses of things that will work for me. It really helps that I have a doctor who believes me when I report the effects of the things I try.
I've heard that Dr. Guyer in Indiana believes in not overtaxing our systems by trying to do too much healing too quickly, and I agree with that philosophy.
I know that it's safe to begin very gradually with some anti-retroviral things, like the Lauricidin I am taking. I don't think viruses can become resistant to that, or to Virastop. Will it be safe to begin gradually with prescription anti-retrovirals? Would it cause drug resistance with some medicines to do that?
I've heard that Dr. Guyer in Indiana believes in not overtaxing our systems by trying to do too much healing too quickly, and I agree with that philosophy.
I know that it's safe to begin very gradually with some anti-retroviral things, like the Lauricidin I am taking. I don't think viruses can become resistant to that, or to Virastop. Will it be safe to begin gradually with prescription anti-retrovirals? Would it cause drug resistance with some medicines to do that?
yes certainly many IF's but fun to suppose just the same.
why do you think if the drug is the right one to shut down xmrv we still wouldn't have probs.....the first dosage prob isn't going to shut it down and in the meantime many of our bodies are over-reactive to drugs, herbs, supps, etc.
i hope you are right....but i think it's unlikely
One med at a time
I think that there are multiple strategies to deal with high sensitivity. One would be to carefully add one med at a time (may not work if you need multiple meds to treat something like a retrovirus). In my case, there are other meds that might help support the immune system but we're holding off until I'm stable on the maximally effective dose of acyclovir (still gradually increasing dosage and trying to figure out maximal effect).
As for XMRV being a possible cause of CFS and our treatment sensitivities. If the sensitivities are caused by XMRV and you get that under control wouldn't that lower the likelihood of an adverse reaction to other meds (and then wouldn't the treatment of XMRV simply be what it is)?
I think that there are multiple strategies to deal with high sensitivity. One would be to carefully add one med at a time (may not work if you need multiple meds to treat something like a retrovirus). In my case, there are other meds that might help support the immune system but we're holding off until I'm stable on the maximally effective dose of acyclovir (still gradually increasing dosage and trying to figure out maximal effect).
As for XMRV being a possible cause of CFS and our treatment sensitivities. If the sensitivities are caused by XMRV and you get that under control wouldn't that lower the likelihood of an adverse reaction to other meds (and then wouldn't the treatment of XMRV simply be what it is)?
Gemini
Senior Member
- Messages
- 1,176
- Location
- East Coast USA
Lisag, thanks for raising such an important issue.
New drug prescribing technology available from Genelex, Labcorp, etc. -- P450 tests of drug metabolizing genes to determine if they are up or down regulated --may help. Some tests are cheek swab, at home , mail it in to the lab.
The 2C19, 1A2, 2D6, 2C9, 3A4,5,7 pathways metabolize the various HIV retrovirals.
Physicians can select drugs/doses depending on how a pathway is working; you may tolerate one drug better than another based on your genetics.
Insurance including Medicare is starting to cover P450 testing. As an aside, the FDA put a notice on the Coumidin label suggesting physicians do genetic testing before prescribing so they can determine the correct dose.
Infections are known to disrupt P450 enzymes.
Could chronic infections be causing the drug & chemical sensitivities seen in CFS/ME?
Would clearing an infection with antivirals cause drug & chemical sensitivities to disappear?
Maybe we're finally going to get answers to those questions with some drug trials.
P450 tests--something for patients with drug sensitivites to check out in the meantime.
Convenient for the homebound.
Gemini
New drug prescribing technology available from Genelex, Labcorp, etc. -- P450 tests of drug metabolizing genes to determine if they are up or down regulated --may help. Some tests are cheek swab, at home , mail it in to the lab.
The 2C19, 1A2, 2D6, 2C9, 3A4,5,7 pathways metabolize the various HIV retrovirals.
Physicians can select drugs/doses depending on how a pathway is working; you may tolerate one drug better than another based on your genetics.
Insurance including Medicare is starting to cover P450 testing. As an aside, the FDA put a notice on the Coumidin label suggesting physicians do genetic testing before prescribing so they can determine the correct dose.
Infections are known to disrupt P450 enzymes.
Could chronic infections be causing the drug & chemical sensitivities seen in CFS/ME?
Would clearing an infection with antivirals cause drug & chemical sensitivities to disappear?
Maybe we're finally going to get answers to those questions with some drug trials.
P450 tests--something for patients with drug sensitivites to check out in the meantime.
Convenient for the homebound.
Gemini
Hope123
Senior Member
- Messages
- 1,266
I'd also add that as we know more about XMRV or the other pathogens related to CFS, fine-tuning of what medications work for an individual person will help decreased adverse effects.
1. For example, it is common when infections do not respond to a particular antibiotic or when people are very sick that the bacteria involved can be isolated and tested against various antibiotics to narrow down which it is sensitive to and how much is needed. This is already being done for HIV through genotyping and phenotyping. Clinical observations also help too -- it's long been know that African-Americans respond to certain blood pressure medicines better than others. Now that we have the tools to do it, I believe they are able to narrow this down to particular genetic differences.
2. Not out there yet for many medicines but for others - like a certain heart medicine, epilepsy medications - an individual's blood level of that medication can be measured to assess whether they need a higher or lower dose.
3. P450 tests are interesting but as far as I know, it hasn't been worked out yet for many medications how to adjust based on results. I know it's been used for certain antidepressants.
4. It also depends on a lot on what more we find out about CFS. For example, the immune reconstitution syndrome, which is when people with HIV feel worse on antiretrovirals temporarily even as their immune system is improving, is not because of dosing issues but because of that individual person's immune system and any underlying infections they have. I'd say it's early days yet to conclude that reactions are due to dosing issue although for an individual person it might as their doses are adjusted. As in all things CFS, we need more data.......................
1. For example, it is common when infections do not respond to a particular antibiotic or when people are very sick that the bacteria involved can be isolated and tested against various antibiotics to narrow down which it is sensitive to and how much is needed. This is already being done for HIV through genotyping and phenotyping. Clinical observations also help too -- it's long been know that African-Americans respond to certain blood pressure medicines better than others. Now that we have the tools to do it, I believe they are able to narrow this down to particular genetic differences.
2. Not out there yet for many medicines but for others - like a certain heart medicine, epilepsy medications - an individual's blood level of that medication can be measured to assess whether they need a higher or lower dose.
3. P450 tests are interesting but as far as I know, it hasn't been worked out yet for many medications how to adjust based on results. I know it's been used for certain antidepressants.
4. It also depends on a lot on what more we find out about CFS. For example, the immune reconstitution syndrome, which is when people with HIV feel worse on antiretrovirals temporarily even as their immune system is improving, is not because of dosing issues but because of that individual person's immune system and any underlying infections they have. I'd say it's early days yet to conclude that reactions are due to dosing issue although for an individual person it might as their doses are adjusted. As in all things CFS, we need more data.......................
I'm wondering if using antiretrovirals could excaserbate symptoms initially for most cfs patients because their body begins to actively fight the infection and other coinfections. If most patient have secondary coinfections, the increase in immune system activity could generate a herxheimer reaction. I hope that studies run on the antiretrovirals span enough time to see the long term benefit of the medication if there is one. One of the most difficult hurdle for research related to CFS has been the confounded relationships between effective treatments and symptom severity. Many treatment that are helpful in eradicating infection and boosting the immune system don't show immediate improvement because the actual process of killing of the pathogens makes symptoms worse.
Hope123
Senior Member
- Messages
- 1,266
My understanding is ultimately antiretrovirals are good for HIV+ folks but that immune recon synd (IRIS) can be quite severe in some folks. I just found this great Johns Hopkins site on HIV:
http://www.hivguidelines.org/clinic...atory-syndrome-iris-in-hiv-infected-patients/
The second question is not answerable with what we know today and I would not speculate whether we are less or more sensitive.
Hope123
Senior Member
- Messages
- 1,266
Part of IRIS is the recovering immune system fighting opportunistic infections where it could not before but not everyone gets IRIS. Also, opp. inf. are also treated the same time as antivirals are given. For HIV, viral load and CD4 are good measures of a recovering system even with IRIS. Who knows? Perhaps someday we'll have XMRV viral loads or NK cell function/count as possible measures.