low-dose hydrocortisone and provigil (modafinil) : side effects ?

[fablepd]

Hello.
The only drug which really help me and almost solve all my CFS with hypersomnia symptoms is Provigil. I'm quite lucky because a lot of people with CFS see no improvements with Provigil.
The problem , as i already wrote in another post here in Phoenix Rising, is that i have great dehydration and little tachicardia and i build tolerance very quickly, i.e. at the third day it has no effect, so i can use it only twice a week.
The endocrinologist encountered a secondary hypoadrenalism and they prescribed me 37.5 acetate cortisone / day. I know a lot of studies about CFS warning about use low-dose hydrocortisone for the well-know adrenal suppression effect.
I'm writing now for another reason. I'ld like to know if any other here in the forum has got improvements with low-dose hydrocortisone, with what dosage and after how many weeks/ months and if anyone is also taking Provigil along with hydrocortisone and has side-effects (the worst the exaggerate dehydration and some discomfort in the phalanges of the hands.
Thanks for any comment and answer.

Fabio.

 

[heapsreal]

you could look at using pregnenolone first up to try and raise cortisol, it can also help raise other hormones which may be low also. Suggest google pregnenolone steel etc which will give you an idea of what its about. probably an alternative to try first before trying HC.

start low and go slow with doses, from 5mg and slowly build to 50mg. Either micronized pregnenolone pills or transdermal creams are whats commonly used.

 

[fablepd]

Thanks a lot heapsreal ! One strange thing is that my testosterone is high , even if i never tested DHEA . No one ever told me why it's higher than the standard range , and even if probably the case in the video is not the mine, for sure i'll talk with my endocrinologist about pregnolone , since i doubt i can buy it over the counter.
Thanks again !

 

[heapsreal]

Thanks a lot heapsreal ! One strange thing is that my testosterone is high , even if i never tested DHEA . No one ever told me why it's higher than the standard range , and even if probably the case in the video is not the mine, for sure i'll talk with my endocrinologist about pregnolone , since i doubt i can buy it over the counter.
Thanks again !

sometimes in the earlier stages of adrenal fatigue/dysfunction, dhea can spike, so guessing maybe testosterone can to. I would keep and eye on it and see what changes. You might find adaptogenic herbs and using licorice could help???

 

[adreno]

One strange thing is that my testosterone is high..

Cortisol and testosterone normally has an inverse relationship, so low cortisol is often accompanied by high testosterone. T is mainly produced in the testes, and only a small amount comes from DHEA conversion.

 

[fablepd]

I used euquinax (Panax Quinquefolius) , which has been described has very useful in chronic fatigue without any improvements in 2 months ;( never tried licorice, will do it !

 

[heapsreal]

I used euquinax (Panax Quinquefolius) , which has been described has very useful in chronic fatigue without any improvements in 2 months ;( never tried licorice, will do it !

hormones are only apart of cfsme treatment, try to look into immune function and infections further, they seem closer to the source of the problem, adrenal dysfunction seems secondary but still worth treating.

 

[drob31]

sometimes in the earlier stages of adrenal fatigue/dysfunction, dhea can spike, so guessing maybe testosterone can to. I would keep and eye on it and see what changes. You might find adaptogenic herbs and using licorice could help???

Just curious; do you believe the adrenal glands can get fatigued?

 

[drob31]

This is interesting, as modafanil is one of the things I was thinking of trying.

Could damage from CFS cause subclinical narcoleptic symptoms? This is something modafanil would help with.

Also, what if CFS or the condition that is causing fatigue is also causing low dopamine? I was thinking that welbutrin may be something I would try for this.

 

[fablepd]

hormones are only apart of cfsme treatment, try to look into immune function and infections further, they seem closer to the source of the problem, adrenal dysfunction seems secondary but still worth treating.

heapsreal , i also have HHV-7 PCR virus active but other people with CFS and HHV- positive treated with valcyte had no imrpovements here in Italy ;(
drob31 yes since i got mononucleosis and CFS i have narcoleptic symptoms. I have Provigil prescribed and it helps me a lot but i build tolerance extremely quickly so i use it only twice a week. Dehydration the worst problem with provigil ;(
Thanks for your suggestion about wellbutrin drob31 !

 

[heapsreal]

heapsreal , i also have HHV-7 PCR virus active but other people with CFS and HHV- positive treated with valcyte had no imrpovements here in Italy ;(
drob31 yes since i got mononucleosis and CFS i have narcoleptic symptoms. I have Provigil prescribed and it helps me a lot but i build tolerance extremely quickly so i use it only twice a week. Dehydration the worst problem with provigil ;(
Thanks for your suggestion about wellbutrin drob31 !

Theres been a few people here helped by antivirals, plus i think its a treatment that one needs to stick with for a few years?? Also Dr Lerner has found those that were positive to the herpes viruses but didnt respond to antivirals had some other bacterial co-infection such as lyme etc, so worth looking into.

I dont think there is a one hit wonder, but i think the infections and immune system are closer to the cause i guess and then slowly start fixing hormone abnormalities and other symptoms etc as you go.

In Italy i think you can buy immunovir over the counter quite cheap, this is commonly used to help improve immune function.

Valcyte is approved for cmv and off label for hhv6, maybe its not as effective for hhv7 but i dont really know?? Its possible some HIV meds could be effective for hhv7??

 

[heapsreal]

Just curious; do you believe the adrenal glands can get fatigued?

no i think its an issue in the brain or hypothalamus with signalling etc, maybe inflammation is interrupting the function of hypothalamus. From what i have read the PVN/paraventricular nucleus in the hypothalamus is what controls signals to the adrenal glands.

I dont think anyone really knows for sure but we do need proper adrenal hormones for our immune system to function properly and also to control inflammation as well as creating energy.

 

[helperofearth123]

Modafinil was one of the things I tried in the months before my diagnosis while still at Universtity. It had amazing effects on my reading ability, actually pushing it up above normal but that was when symptoms were mild before getting really ill. I carried on taking it as I slid down and down.

Looking back it might have contributed to making things worse as it's just a stimulant, like an amphetamine.

When I was only very mildly ill I would take it but it would stop me from sleeping so I sometimes took it a few days in a row hardly getting any sleep to get an essay done.

Then when I got more ill I ended up taking for weeks in a row and if I stopped, I would be basically bed ridden or house bound. With daily use over many weeks I started to notice a "high" like feeling as if I was getting high on coke or something lol (don't actually know what that feels like).

All in all its a pretty amazing drug for mild concentration problems which works wonders when taken occasionally. I was a powerhouse of productivity while it was working, chugging through dense philosophy texts day after day. I couldn't get regular dosing right though and if the body is broken underneath the artificial energy boost it could make things much worse.

 

[drob31]

It sounds like modafanil and drugs like it should only be used as needed, like once a week when you really need it.

 

[fablepd]

drob31 : I'm an unlucky case. I know people taking it for weeks without building tolerance but i feel really great with provigil taking half-dose (100mg) twice a week . I've been using for 1.5 years and i'm so glad to have discovered it.

hepsreal: please, what's your opinion ? After how many weeks usually one can see improvement in glandular functioning when taking low-dose hydro cortisone ? Of course my hypersomnia had decreased but at the same time i feel depressed , angry and with instable mood (12.5mg cortisone acetate in the morning + 6.25 at 13).
I'd like to hear your all opinions about this study : http://press.endocrine.org/doi/full/10.1210/jcem.86.8.7735 .
I found it very useful .
Thanks !

 

[heapsreal]

drob31 : I'm an unlucky case. I know people taking it for weeks without building tolerance but i feel really great with provigil taking half-dose (100mg) twice a week . I've been using for 1.5 years and i'm so glad to have discovered it.

hepsreal: please, what's your opinion ? After how many weeks usually one can see improvement in glandular functioning when taking low-dose hydro cortisone ? Of course my hypersomnia had decreased but at the same time i feel depressed , angry and with instable mood (12.5mg cortisone acetate in the morning + 6.25 at 13).
I'd like to hear your all opinions about this study : http://press.endocrine.org/doi/full/10.1210/jcem.86.8.7735 .
I found it very useful .
Thanks !

I think your asking if you do a certain length of time on HC that your adrenal dysfunction will have improved and you will be able to stop the HC and maintain this better function??

With cfs/me i would think so unless the core issues are treated as generally the adrenal dysfunction is a secondary issue??? Although i have read about people who dont have ME that are able to stop HC and have recovered from adrenal fatigue?

My thoughts on treating cfs is to line all your ducks up and pick them off one by one. So list all your dysfunctions etc so immune function, infections, adrenal function, sex hormones, neurotransmitters, sleep function, inflammation, oxidation etc and slowly start to try and treat them all.

With your feeling depressed on HC, maybe you could have a low serotonin and try 5htp? You feel better on modafinil, modafinil increases dopamine and noradrenaline, so maybe look at other things that can help with those neurotransmitters. There are some antidepressants that just work on noradrenaline such as edronax, it may be worth trying low doses to see how you respond.

i think the way you use modafinil is smart as tolerance can be an issue with many meds. There are some studies showing it has neuroprotective effects, so maybe be alot better for you than traditional type stimulants??

I would still look into pregnenolone to try and help raise cortisol levels, it can also help increase neurotransmitters and lift mood as well.

Dont take what i say as gospel, has its hard to tell online how one is function etc but google and research some of the things i have just posted like the pregnenolone etc and talk these things over with your doctor. Bringing these things up with your doctor, sometimes they can offer alternatives as well.

cheers!!

 

[fablepd]

Thanks a lot hepseral for your information ! That's very kind ! I'll try to talk about pregnenolone with my endocrinologist (late february ) but he seems so hydrocortisone-only-therapy .... i've searched for studies in pubmed about pregnenolone in chronic fatigue syndrome but haven't found any important ;((((

cheers !

 

[heapsreal]

Thanks a lot hepseral for your information ! That's very kind ! I'll try to talk about pregnenolone with my endocrinologist (late february ) but he seems so hydrocortisone-only-therapy .... i've searched for studies in pubmed about pregnenolone in chronic fatigue syndrome but haven't found any important ;((((

cheers !

Probably not alot of studies on it as its not a patentable drug?? Best is probably reports from natural hormone orientated doctors who use this for adrenal fatigue/dysfunction.

My own experience is that it helped increase cortisol levels.

 

[minkeygirl]

@fablepd I have been toying with Kava lately for sleep and muscle relaxant and someone told me this. The medication is moclobemide. So maybe for the depression you are experiencing?

Kava has an active incredient,yangonin, which is a MAO-B not MAO-A.MAO-B regulates Dopamine and Phenylathylamine while MAO-A Serotoninand Norandrenaline,that's why SWIY have nothing to afraid of with the SSRI is taking.

 

[fablepd]

Probably not alot of studies on it as its not a patentable drug?? Best is probably reports from natural hormone orientated doctors who use this for adrenal fatigue/dysfunction.

My own experience is that it helped increase cortisol levels.

Of course I agree with you .
Thanks heaps real i simply didn't know that also in Italy it can be bought without medical prescription. I'll try it and let you know . Thanks !