Question about porphyria and xanax

Submitted by Shahbah on Sat, 2010-02-13 19:50

Hi

I have only been on docy and roxy for 5 weeks now and I can really feel porphyria building up with more and more fasciculations, weakness, very bad headaches... I am taking 3 g of vit C to try to counter this, I take charcoal before going to bed, but those don't seem to really help. I drink a lot of water.

Today I have tried Xanax which immediately brought a significant improvement, I could get out with some friends, talk and have a normal dinner like a normal person, which seemed just incredible knowing that I was in bed the whole afternoon, very sick and not knowing what to do with myself...

My question is: do some people take xanax against secondary porphyria? As I know it is addictive, I am quite scared of that aspect, and that is why I am asking for help, if anybody knows any product that is equivalent to that drug without the danger it can have...

Thank you very much!

Shahbah        

Xanax isn't a drug that's prescribed to treat porphyria so it's very doubtful that anyone takes it for that.  Frankly, I'm surprised that it's had that affect on you.  I would not start taking it for porphyria because as you pointed out, it is addictive.

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

My doctor gave me Xanax,all it will do is mask your problems and stop you questioning your doctor!!!

Do not use it,i refused it and was offered Valium and again i refused it,its a very bad practice to push these drugs just to keep you quiet.

You want to be well and not end up an addict!!!!

Good luck. 

CPN,cap oct 09,NAC2400mg,Doxy 100mg,full sups,

Moving to dr Stratton protocol next month .

lee

Dr. S told me in a conversation "if xanax works, its prophyria". It also works for me. Keep going the need for xanax will go away when you start feeling better.

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Actually, if you read the section  from the CPN Handbook on treating "secondary porphyria" (below is the excerpt)  there is a section on the use of benzodiazapines in the treatment of porphyria.  

I dislike taking taking any pharmaceutical; BUT, I occasionally use .25 mg of Xanex, (Xanex is not my porphyria treatment but I did find it helped occasionally during or after pulsing).   Due to the lack of my thryoid I have endocrine-based, occasional anxiety for which the script was written.    IMO, it's no different than any drug that  may be addictive - limited and only necessary use is the key. Anyone who has had severe porphyria symtoms can appreciate any measure to alleviate porphyria, but it is only a temporary fix. 

I know the addiction issue as I had a terrible time titrating off Klonopin.  I was on it for over 15 years (originally prescribed to me for "restless leg syndrome" in the early 90's before the the consequences of long-term benzo's was known).  I was on a very low dose (.5 mg/day) but because I had been on it for so many years, it took almost a year to be able to stop taking it.

Again, this is just my opinion and experience.  Something to probably be discussed with one's PCP.

  Excerpt:

Antiporphyrinic Drugs 9. Benzodiazapine Drugs The specific benzodiazapine drugs used depends, in part, on the symptoms. For example, if panic attacks are the problem, xanax (0.5 mg three or four times per day) can be used. If sleeping is a problem, restoril (30 mg at night) can be used. 10. Hydroxychloroquine Hydroxychloroquine (100 - 200 mg once or twice per day) is often used to treat porphyria. For patients with symptoms of porphyria, a single 100 mg dose of hydroxychloroquine may be tried. If this trial dose relieves the symptoms, hydroxychloroquine may be continued. The hydroxychloroquine dose must be adjusted for each patient. This is done by increased the dose slowly, starting with 100 mg every other day, then slowly increasing to a maximum dose of no more than 200 mg twice per day. Most patients do well on 100 mg once per day. Visual/eye exams should be done periodically as per manufacturerís recommendations (See PDR).

*2/15/10-edited a few words 

 

 

 

 

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Thank you everyone for your answers. Of course I do not plan to take xanax every day but only when I feel terrible enough to try alsmost anything... This porphyria thing is really the hardest part and I think I am too early in the protocol to  know what works best for me. It's a pity there is no strandard and sure way to get all the endotoxins out...

Also, I know some of you try sauna and I was wondering if the heat was not bad because of its vasoconstriction effect. As I have those daily headaches I was wondering if sauna would help... Any thoughts?

Thanks again for your great help!!! 

Diagnosed with MS on March 2009, started CAP on Jan 2010. Doxy 200mg- Roxy 300mg- NAC and all major supplements.
lee

Cholestyramine is helping me. It was a little tough getting on it at first. However, now I take 2 packets a day and it has been a life safer. The charcoal did not seem to do much for me.

200mg doxy daily, 500 zithromax mwf,flagyl 1000 m-fri.rifampin 2x daily,chloestryramine 2x daily

Lee and Shahbah,

Recently I switched to the PAR pharmaceuticals generic brand of Cholestyramine.  I specifically asked for a formulation with no aspartame sweetner which is in all the "lite" formulation.  This formulation does have some sugar in it, I would prefer no sugar but this is what this pharmacy can get.   Acutally this brand tastes much better than my previous generic, this one is almost pleasant. 

Lee, it was the same for me Lee charcoal did not seem to do much for me and I road the rocky road of porphoria for 5 months before starting the cholestyramine so I had a long history and really was totally amazed by the mental clarity, the emotional stability and more that happened in about a week of taking it nightly.  

Then a time latter, I also discovered ChitosanHD from www.wholehealth.com and that has been helpful.   If you have any reactions to shell fish this one is not for you.

But still, I am more confident that taking 1 - 2 packets of cholestyramine, just before bedtime, after a small fat stimulus, cleared my brain fog like nothing else and it even helps with stool regularity for me personally.   I do keep it away from real meals to prevent the absorption of needed nutrition and take it at least 40 minutes after nightime supplements which I take on an empty stomach to enhance their quick absorption so that I can take the Cholestyramine without affecting them.  

My Cholestyramine Rx is for 3 - 4 times a day, I have never taken it more than once a day, at bedtime.    Any one who wants more detail or chat on this sometimes charged subject please pmessage me if you like, and I will chat more with you, it is not for everyone but if your conditions are right it can be a strong answer to clearing porhyrins from the body.

Certainly we shall hear about those who have had some less than the best experience with this particular absorbifactant substance in the short term, and really everyone has different concomittant conditions that need consideration in any choice we make!

Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Shabhah, Heat is vasodilating, with the sauna you get a pleasant red glow to your skin!  Louise
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Louise, that is great news for me, so now I can  go to a sauna with a big smile on my face! Thanks a lot!
Diagnosed with MS on March 2009, started CAP on Jan 2010. Doxy 200mg- Roxy 300mg- NAC and all major supplements.