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Dr. Bob is Robert Hsiung, MD,
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Posted by ed_uk on June 14, 2005, at 14:36:00
In reply to Medical Marijuana/ MS / Canada, posted by dog on June 14, 2005, at 13:33:04
Hi Dog,
http://www.medicalnewstoday.com/medicalnews.php?newsid=23299
~Ed
Posted by dog on June 14, 2005, at 16:49:27
In reply to Sativex » dog, posted by ed_uk on June 14, 2005, at 14:36:00
> Hi Dog,
>
> http://www.medicalnewstoday.com/medicalnews.php?newsid=23299
>
> ~Ed
>
>Hi Ed,
thanks for the info. do you know anyone who takes it? i wonder where the good old U.S. of A. is situated on the question of this new drug. do you know? we'll probably never see it or at least it would take a lifetime to get approved.
my neurologist, who is over 60, told me he would never prescribe any medical marijuana product as it was too addictive. it is illegal in Illinois, my state, anyway. i think there are a few states that might allow it, but my state of Illinois is pretty conservative.my pain is such that at times it is pretty unbearable. i have taken muscle relaxers and tylenol #3s, but don't like the side effects.
i used to smoke marijuana when i was a kid, but quit when i was 20. i became a born-again christian and gave all the partying up for a much richer existence. now, at 45, with the MS pain and all, i might be tempted to try it again, but i would not do it illegally. as i said before, i have enough trouble right now w/out breaking the law.... i know a guy who was found with 1 pound of it a few years ago and was busted big-time: a felony.
i wonder what other US of A people think? i have heard one can smoke marijuana in Canada w/out fear of prosecution... is this correct?
you Canadian folks have us U.S. people beat on a lot of fronts.
Posted by ed_uk on June 14, 2005, at 18:06:11
In reply to medical marijuana/Sativex/ethics, posted by dog on June 14, 2005, at 16:49:27
Hi Dog,
>.......do you know anyone who takes it?
No, it's not approved in the UK. Nevertheless, about 400 people in the UK are currently being treated with Sativex with the permission of the MHRA - our medicines regulatory agency, a bit like your FDA.
>i wonder where the good old U.S. of A. is situated on the question of this new drug. do you know?
I've no idea!
>.......we'll probably never see it or at least it would take a lifetime to get approved.
I think it might get approved..........Marinol (THC aka dronabinol: the major active ingredient of cannabis) is already approved in the US.
http://www.rxlist.com/cgi/generic2/drona.htm
http://www.rxlist.com/cgi/generic2/drona_ids.htm>........my pain is such that at times it is pretty unbearable.
Do you suffer from neuropathic/nerve pain? Do you suffer from muscle spasm?
For muscle spasm you could try........
Baclofen (Lioresal)
Dantrolene (Dantrium)
Tizanidine (Zanaflex)For neuropathic pain you could try gabapentin (Neurontin). Have you tried it? Oxcarbazepine (Trileptal) might also be helpful.
Does the Tylenol 3 help your pain? What side effects are you having?
>i might be tempted to try it again, but i would not do it illegally........
I would. Having said that, it's unusual for people to get arrested for possession of small quantities of cannabis now that it's been 'downgraded' to a class C drug in the UK.
Kind regards,
Ed.
Posted by dog on June 16, 2005, at 9:02:14
In reply to Re: medical marijuana/Sativex/ethics » dog, posted by ed_uk on June 14, 2005, at 18:06:11
Ed, that was one of the best emails i think i have ever had! the info. esp. will help. i am a newbie w/ MS... don't have much experience and/or knowledge of it but am learning albeit slowly. my pain is such that i sometimes hurt all over. its like the morning after a car wreck or an accident kind of pain, just all over. esp. legs and arms but certainly not limited to them, also back and sides, etc.
tylenol #3s do help but make me feel "drugged" esp. after i get up the next morning. if i take a nap on my day off, i am esp. sluggish all day. one of my problems is fatigue. have tried amantidine (sp?), but it doesn't help much i don't think.... will mention those other drugs you have told me about though.
i have an awful time getting up in the morning w/ pain and fatigue being the main problems... i have missed an inordinate amount of work. some drugs seem to make it worse. the depression is being exacerbated by the Rebif, i believe, so i am taking 120 mg of Cymbalta a day.i've tried :
Baclofen (Lioresal)
Tizanidine (Zanaflex)and these helped me some, but they make me feel overly sluggish.
i haven't tried this:
> Dantrolene (Dantrium)
will try the other things you wrote re pain.thanks, dog
Posted by ed_uk on June 16, 2005, at 17:04:27
In reply to Re: medical marijuana/Sativex/ethics, posted by dog on June 16, 2005, at 9:02:14
Hi Dog,
>Ed, that was one of the best emails i think i have ever had!
:-)
>my pain is such that i sometimes hurt all over. its like the morning after a car wreck or an accident kind of pain, just all over. esp. legs and arms but certainly not limited to them, also back and sides, etc.
Could you see a pain specialist? Each type of pain needs to be individually identified and treated. Neuropathic pain (pain due to nerve damage) can be treated with drugs such as gabapentin (Neurontin). Your Cymbalta may also relieve neuropathic pain. Dantrolene (Dantrium) - a skeletal muscle relaxant, is only effective in treating pain due to muscle spasm.
>tylenol #3s do help but make me feel "drugged".......
Perhaps you could try a different opioid/acetaminophen combination such as oxycodone/acetaminophen (Percocet) or hydrocodone/acetaminophen (Vicodin).
>one of my problems is fatigue. have tried amantidine (sp?), but it doesn't help much i don't think....
The supplement acetyl L-carnitine may be of some help...........
J Neurol Sci. 2004 Mar 15;218(1-2):103-8.
Comparison of the effects of acetyl L-carnitine and amantadine for the treatment of fatigue in multiple sclerosis: results of a pilot, randomised, double-blind, crossover trial.
Tomassini V, Pozzilli C, Onesti E, Pasqualetti P, Marinelli F, Pisani A, Fieschi C.
Department of Neurological Sciences, University of Rome "La Sapienza", viale dell' Universita 30, Rome 00185, Italy.
Treatment with acetyl L-carnitine (ALCAR) has been shown to improve fatigue in patients with chronic fatigue syndrome, but there have been no trials on the effect of ALCAR for treating fatigue in multiple sclerosis (MS). To compare the efficacy of ALCAR with that of amantadine, one of the drugs most widely used to treat MS-related fatigue, 36 MS patients presenting fatigue were enrolled in a randomised, double-blind, crossover study. Patients were treated for 3 months with either amantadine (100 mg twice daily) or ALCAR (1 g twice daily). After a 3-month washout period, they crossed over to the alternative treatment for 3 months. Patients were rated at baseline and every 3 months according to the Fatigue Severity Scale (FSS), the primary endpoint of the study. Secondary outcome variables were: Fatigue Impact Scale (FIS), Beck Depression Inventory (BDI) and Social Experience Checklist (SEC). Six patients withdrew from the study because of adverse reactions (five on amantadine and one on ALCAR). Statistical analysis showed significant effects of ALCAR compared with amantadine for the Fatigue Severity Scale (p = 0.039). There were no significant effects for any of the secondary outcome variables. The results of this study show that ALCAR is better tolerated and more effective than amantadine for the treatment of MS-related fatigue.
Other treatments for fatigue due to MS........
Modafinil (Provigil) - may be effective for relieving excessive daytime drowsiness.
Traditional stimulants such as amphetamine (Adderall), dextroamphetamine (Dexedrine) and methylphenidate (Ritalin, Concerta) may also be of some help.
>Dantrolene (Dantrium)
Unlike baclofen and tizanidine, dantrolene doesn't cause drowsiness. Dantrolene does sometimes cause muscle weakness though.
Kind regards,
Ed.
Posted by Maxime on June 18, 2005, at 13:01:01
In reply to Medical Marijuana/ MS / Canada, posted by dog on June 14, 2005, at 13:33:04
> Maxime, you didn't tell me what you thought of medical marijuana and MS... are people in Canada using it for their MS? what are the laws restricting it? here the laws are very strict and so strict i will not chance it! i don't need any more troube than i already have.
I'm going to answer you on the alternative board.
Maxime
Posted by ed_uk on June 21, 2005, at 22:03:56
In reply to Re: medical marijuana/Sativex/ethics, posted by dog on June 16, 2005, at 9:02:14
Are you there? Did you see my post? Hope so :-)
~Ed
Posted by dog on June 24, 2005, at 14:58:14
In reply to Dog??? » dog, posted by ed_uk on June 21, 2005, at 22:03:56
> Are you there? Did you see my post? Hope so :-)
>
> ~Edyes thanks so much! i have been away from my office computer for a few days and my laptop at home is not working very well.
currently, i am going to get off the Rebif i have been doing since April 2005 and will soon start copaxone, a non-interferon based therapy. perhaps that will help the depression, etc. only thing is, i have to take injections every day instead of just 3x weekly.
i hope this works as well as the Rebif as far as preventing the MS progressing.
Posted by ed_uk on June 24, 2005, at 15:40:06
In reply to Re: Dog???/ now going off Rebif, posted by dog on June 24, 2005, at 14:58:14
Hi Dog,
>copaxone
Let us know how it goes :-)
~Ed
Posted by dog on June 25, 2005, at 16:37:28
In reply to Re: Dog???/ now going off Rebif, posted by ed_uk on June 24, 2005, at 15:40:06
> Hi Dog,
>
> >copaxone
>
> Let us know how it goes :-)
>
> ~Edi will, Ed, and thank you again for the great advice. i haven't been able to follow up on your suggestions yet. i'll probably wait a bit after i begin the other medicine to try them. by giving me the abstract re the anti-fatigue meds, i will really impress my neurologist!
dog
Posted by ed_uk on June 25, 2005, at 21:17:01
In reply to Re: Dog???/ now going off Rebif, posted by dog on June 25, 2005, at 16:37:28
Hi Dog,
>thank you again
You're welcome :-)
~Ed
Posted by dog on August 9, 2005, at 12:27:57
In reply to Re: Dog???/ now going off Rebif, posted by dog on June 25, 2005, at 16:37:28
have been on copaxone for over 2 weeks now. not near as many side effects as Rebif.. however, a 2nd opinion Doc told me in Feb 05 i have SPMS, and if that's so, Copaxone might not be the best thing for it... does anyone know?
thanks, dog> > Hi Dog,
> >
> > >copaxone
> >
> > Let us know how it goes :-)
> >
> > ~Ed
>
> i will, Ed, and thank you again for the great advice. i haven't been able to follow up on your suggestions yet. i'll probably wait a bit after i begin the other medicine to try them. by giving me the abstract re the anti-fatigue meds, i will really impress my neurologist!
> dog
>
Posted by ed_uk on August 9, 2005, at 13:08:00
In reply to Re: Dog???/ now going off Rebif » dog, posted by dog on August 9, 2005, at 12:27:57
Hi Dog,
As far as I know, Copaxone works best for relapsing-remitting MS. Has your neurologist suggested any other treatments?
Kind regards
~Ed
Posted by dog on August 9, 2005, at 14:02:23
In reply to Re: Dog???/ now going off Rebif » dog, posted by ed_uk on August 9, 2005, at 13:08:00
Ed,
thanks for reply...in Feb of 2005 i got a 2nd opinion, after i was diagnosed w/ MS in Jan. 2005. the 2nd opinion Dr. from the Univ. of Chicago, thinks its SPMS. the Dr. down here in Peoria, IL doesn't think its necessarily SPMS yet.
i was complaining to the Dr. here in Peoria about the Rebif side-effects, esp. the depression worsening. so he has given me a non-interferon drug. not sure if thats best though.
what do you think?
Posted by ed_uk on August 9, 2005, at 14:42:12
In reply to Re: Dog???/ now going off Rebif, posted by dog on August 9, 2005, at 14:02:23
Hi!
I think Copaxone is a sensible alternative to interferon.
~Ed
Posted by dog on August 9, 2005, at 15:02:47
In reply to Re: Dog???/ now going off Rebif » dog, posted by ed_uk on August 9, 2005, at 14:42:12
Ed,
i agree of course, but what if i have SPMS, which i think, and the MS Specialist Doctor in Chicago thinks, i most likely do have? Copaxone is fine for RRMS, but is it a sensible alternative to interferon for SPMS?
do you think Copaxone works as well as interferon for RRMS?
dog
> Hi!
>
> I think Copaxone is a sensible alternative to interferon.
>
> ~Ed
Posted by ed_uk on August 9, 2005, at 15:41:48
In reply to Re: Dog???/ now going off Rebif, posted by dog on August 9, 2005, at 15:02:47
Hi,
>Copaxone is fine for RRMS, but is it a sensible alternative to interferon for SPMS?
I don't know. In the UK at least, only interferon is approved for SPMS.
>...do you think Copaxone works as well as interferon for RRMS?
I don't know enough about Copaxone to answer that question. I mainly know about psychiatry!
Kind regards
~Ed
Posted by dog on August 9, 2005, at 16:15:40
In reply to Re: Dog???/ now going off Rebif » dog, posted by ed_uk on August 9, 2005, at 15:41:48
Ed,
sorry to "put you on the spot" as we say here in the states, but i feel i have to know some of this stuff and the literature, at least the stuff i've seen so far, is so vague.i have never, ever been answered so well or so precisely as these posts you have given me. i am very grateful. i have gotten more info. from you than my other Dr.s! i can't thank you enough.
dog (from a very small town in West Central Illinois)
Posted by ed_uk on August 9, 2005, at 16:26:38
In reply to Many, Many Thanks to Ed, posted by dog on August 9, 2005, at 16:15:40
Hi!
You're welcome :-)
I can tell you about most drugs - especially psychotropics...... but I don't know much about MS!
Did you ever try a different drug for your muscle spasm/pain?
~ed (from Yorkshire, England)
Posted by dog on August 9, 2005, at 16:38:10
In reply to Re: Many, Many Thanks to Ed » dog, posted by ed_uk on August 9, 2005, at 16:26:38
i am taking trileptal (sp?), flurbiprofen, and some stuff you recommended for fatigue (can't remember the name right now) that is working well.
things seem to be going fairly well so far, though the heat, i think, is making me weak and sick. we have had a lot of heat and a bad drought here in Illinois. alot of my farmer friends and family are having a rough time. my vegetable garden also, as are alot of gardens here have suffered greatly.
there's still some pain, but the med.s make it tolerable... and thanks to the stuff you recommended for fatigue, i am feeling less fatigue during the day.
dog
> Hi!
>
> You're welcome :-)
>
> I can tell you about most drugs - especially psychotropics...... but I don't know much about MS!
>
> Did you ever try a different drug for your muscle spasm/pain?
>
> ~ed (from Yorkshire, England)
Posted by ed_uk on August 9, 2005, at 16:46:20
In reply to Re: Many, Many Thanks to Ed, posted by dog on August 9, 2005, at 16:38:10
Hi!
It sounds like you're doing rather well :-) I hope your neurologist can provide more information as to which drug would be most appropriate for SPMS.
~Ed
Posted by dog on August 9, 2005, at 17:04:55
In reply to Re: Many, Many Thanks to Ed » dog, posted by ed_uk on August 9, 2005, at 16:46:20
i called the MS nurse today. she told me the Copaxone should help me. she was vague re the SPMS. it seems my Dr. here in Peoria is not sure about SPMS. she kept saying "we have to wait".
however, the Dr. at the Univ. of Chicago Med. School seems to believe I have SPMS. i sent him an email today. hopefully, he'll answer soon. my insurance has approved at least one more visit with the Chicago Dr., so i plan on going up to Chicago in the next 2 months or so to see him.there's a medical school here in Peoria called the University of Illinois Medical School and the Library of Health Sciences is their library. i have full access to it because i work for public health. can you recommend any journals or books?
Hi!
>
> It sounds like you're doing rather well :-) I hope your neurologist can provide more information as to which drug would be most appropriate for SPMS.
>
> ~Ed
Posted by dog on August 10, 2005, at 11:33:25
In reply to Re: Many, Many Thanks to Ed » dog, posted by ed_uk on August 9, 2005, at 16:46:20
Ed,
since i began the Cymbalta, now at 90 per day, i have had trouble w/ sex: not necessarily maintaing an erection (no ED), but w/ orgasm...there's no "Happy Endings" for me...i can please my wife (at least she "says" she is pleased) My libido is a bit lower, but not too bad... but the anorgasmia it is very frustrating... i have had problems before w/ other SSRIs, but not to this extent. i am also taking 100 mg of Wellbutrin a day.
i have heard if i take a decongestant or an antihistimine or something else about 1 hour before sex i will have an easier time with orgasm.
haven't spoken w/ my Dr. yet... do you have any advice?dog
> Hi!
>
> It sounds like you're doing rather well :-) I hope your neurologist can provide more information as to which drug would be most appropriate for SPMS.
>
> ~Ed
Posted by ed_uk on August 10, 2005, at 13:56:53
In reply to Re: Many, Many Thanks to Ed, posted by dog on August 9, 2005, at 17:04:55
Hi!
>...can you recommend any journals or books?
Search for interesting abstracts at www.pubmed.com .....then you'll know whether you want to read the full articles. You should have access to the e-journals.
~Ed
Posted by ed_uk on August 10, 2005, at 14:12:50
In reply to Ed, can you advise re anorgasmia?, posted by dog on August 10, 2005, at 11:33:25
Hi!
>there's no "Happy Endings" for me...
That's very common with Cymbalta... and with the SSRIs.
Any chance you could decrease the dose of Cymbalta or switch to a different antidepressant? (not an SSRI or Effexor)
Increasing the Wellbutrin might help.
>i have heard if i take a decongestant or an antihistimine or something else about 1 hour before sex i will have an easier time with orgasm.........
Cyproheptadine (Periactin) - an antihistamine, sometimes helps. It's often quite sedating though so you might not feel like sex!
It might be worth a try.Various other 'antidotes' have been tried (but none are well established).......
Buspirone
Mirtazapine
Amantadine (I think you've already taken amantadine)~Ed
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