Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 I'm a lot like you, Cher, in that the interferon got rid of my joint and muscle aches. however, once I finished treatment, it returned with a bang. Now tho, it's not my joints that ache but my muscles that burn, muscles I didn't even know I had. I think, and this is just my opinion, that once hep c has " triggered " something, like joint pain, lupus, fibromyalgia, etc, that when you clear the virus that doesn't mean the thing it triggered goes away too. That is a separate deal. I test fine on all my routine labs. You'd think I was the healthiest person around, except for the hep c and fibroymyalgia and chronic fatigue. My primary and my therapist are working together with me to help me with my fibro and chronic fatigue. Yesterday in fact, I went to see both. 6 months after my high dose interferon cancer treatment, I should be feeling better. And I do some, but not enough. I wouldn't be able to work if I had to. I'm also trying to lose weight. I gained a ton on both treatments (it increased my thyroid and I was very sedentary) and I needed to lose even before treatment. These same drugs prolly won't make YOU feel better, or work the same way for you, but they work for me, so they are just an EXAMPLE.So here's what I'm doing... I take Wellbutrin twice a day. That is for depression and it perks me up, gives me a little energy. Fish Oil - twice a day to help cholesterol and triglycerides (my trigl. are high, but cholesterol is great). Trazadone - one at nite for sleep (normally I sleep about 2 hours at a time and that makes me hurt more. With a sleep aid such as this, I can sleep 7 - 8 hours at a time and my body gets stage 4 sleep, the stage at which the body repairs itself, and I honestly don't ache as much the next day! It's amazing.) I was taking Elavil for this, but we are concerned that it triggered my chronic hives (remember, 2 years of itching!). Zonegran - once nightly. This my therapist just prescribed me yesterday. It is normally prescribed for seizures, but has shown it works well for people in pain, esp against migraines (which I have thanks to the hep/fibro), against neuropathic pain, and works well for weight loss. He said that he has had people rave about the weight they've lost using Zonegran. Course there's always the % who don't respond or react well to anything, and I read all the possible precautionary stuff. (ALWAYS read the fine print). This in particular sounds promising.... " A very exciting recent placebo-controlled trial published in JAMA April 9, 2003 issue by Kishore Gadde, M.D. et. al., demonstrated a significant weight loss in obese patients taking zonegran at a dose of at least 400 mg per day. At 32 weeks, the average patient demonstrated a 9.4% weight loss. They lost on average 4 inches in the waist. Patients lost weight in week 16 to 32 (although at a slower rate than week 0- 16 ) so the final weight loss is not known. This data adds to other data seen in epilepsy patients which found weight loss as well. At least one study suggested that females were more likely to lose weight than males. " quoted from http://www.loftusmd.com/Articles/AED/zonegran.html So we'll see what happens. neuropathic pain is = " When neurologists think of neuropathic pain, we are refering to pain being caused to the peripheral nerve fibers themselves. Descriptions of neuropathic pain by patients typically include words such as burning, shooting, stabbing, or electric like and not aching or crushing. The distribution of pain will be along the course of a particular peripheral nerve or a group of nerves of similar length. For neuropathic pain, nonnarcotic pain relievers are generally not helpful. Narcotic pain relievers typically have initial success but many times patients have to keep increasing the dose. Neurologist have learned that othe types of medications - such as tricyclic antidepressants and some anti-epileptic drugs (AEDs) are very useful in this type of pain. In addition, steroid or other nerve blocks are also not particularly effective. The approach to a patient with neuropathic pain when seen by a neurologist will be very different when seen by physicians who consider themselves pain specialists. quoted from http://www.loftusmd.com/Articles/Pain/overview.html (I am using this doctors website to quote from cuz he makes it very readable. This doesn't mean he's the best person to know about it, just that he was easy to find on the net and seemed the easiest to read about that particular thing. He has some links to other things that might be interesting to heppers, like meds used to treat neuropathic pain Keppra, Lamictal, Neurontin, Tegretol and arbatrol, Topiramate, Trileptal, Zonegran So Cher, I'd say, find a doc who will work with you over time to eliminate possible triggers for your pain and try some different meds to find the ones that work best for you. Sometimes feeling bad could be as simple as low postassium, (which isn't really simple cuz it makes you really sick). But you won't know that unless you have a doctor who is looking for all those little things that can make us heppers and once upon a time heppers feel bad. Without my therapist, I wouldn't be making the progress I am now with my antidepressant. I found out I can't take the newer SSRI's, they make me depressed. I have to take Wellbutrin, which works on Dopamine. The older meds like Elavil and Trazadone don't bother me as much. They make me sleepy when I take them, but not all day, just enough to get a good nites sleep. Keep working on it Cher. It's rarely a simple thing that fixes us. It's more like trial and error. Good luck Alley alleypat@... http://home.comcast.net/~alleypat http://alleypat.livejournal.com " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 I'm a lot like you, Cher, in that the interferon got rid of my joint and muscle aches. however, once I finished treatment, it returned with a bang. Now tho, it's not my joints that ache but my muscles that burn, muscles I didn't even know I had. I think, and this is just my opinion, that once hep c has " triggered " something, like joint pain, lupus, fibromyalgia, etc, that when you clear the virus that doesn't mean the thing it triggered goes away too. That is a separate deal. I test fine on all my routine labs. You'd think I was the healthiest person around, except for the hep c and fibroymyalgia and chronic fatigue. My primary and my therapist are working together with me to help me with my fibro and chronic fatigue. Yesterday in fact, I went to see both. 6 months after my high dose interferon cancer treatment, I should be feeling better. And I do some, but not enough. I wouldn't be able to work if I had to. I'm also trying to lose weight. I gained a ton on both treatments (it increased my thyroid and I was very sedentary) and I needed to lose even before treatment. These same drugs prolly won't make YOU feel better, or work the same way for you, but they work for me, so they are just an EXAMPLE.So here's what I'm doing... I take Wellbutrin twice a day. That is for depression and it perks me up, gives me a little energy. Fish Oil - twice a day to help cholesterol and triglycerides (my trigl. are high, but cholesterol is great). Trazadone - one at nite for sleep (normally I sleep about 2 hours at a time and that makes me hurt more. With a sleep aid such as this, I can sleep 7 - 8 hours at a time and my body gets stage 4 sleep, the stage at which the body repairs itself, and I honestly don't ache as much the next day! It's amazing.) I was taking Elavil for this, but we are concerned that it triggered my chronic hives (remember, 2 years of itching!). Zonegran - once nightly. This my therapist just prescribed me yesterday. It is normally prescribed for seizures, but has shown it works well for people in pain, esp against migraines (which I have thanks to the hep/fibro), against neuropathic pain, and works well for weight loss. He said that he has had people rave about the weight they've lost using Zonegran. Course there's always the % who don't respond or react well to anything, and I read all the possible precautionary stuff. (ALWAYS read the fine print). This in particular sounds promising.... " A very exciting recent placebo-controlled trial published in JAMA April 9, 2003 issue by Kishore Gadde, M.D. et. al., demonstrated a significant weight loss in obese patients taking zonegran at a dose of at least 400 mg per day. At 32 weeks, the average patient demonstrated a 9.4% weight loss. They lost on average 4 inches in the waist. Patients lost weight in week 16 to 32 (although at a slower rate than week 0- 16 ) so the final weight loss is not known. This data adds to other data seen in epilepsy patients which found weight loss as well. At least one study suggested that females were more likely to lose weight than males. " quoted from http://www.loftusmd.com/Articles/AED/zonegran.html So we'll see what happens. neuropathic pain is = " When neurologists think of neuropathic pain, we are refering to pain being caused to the peripheral nerve fibers themselves. Descriptions of neuropathic pain by patients typically include words such as burning, shooting, stabbing, or electric like and not aching or crushing. The distribution of pain will be along the course of a particular peripheral nerve or a group of nerves of similar length. For neuropathic pain, nonnarcotic pain relievers are generally not helpful. Narcotic pain relievers typically have initial success but many times patients have to keep increasing the dose. Neurologist have learned that othe types of medications - such as tricyclic antidepressants and some anti-epileptic drugs (AEDs) are very useful in this type of pain. In addition, steroid or other nerve blocks are also not particularly effective. The approach to a patient with neuropathic pain when seen by a neurologist will be very different when seen by physicians who consider themselves pain specialists. quoted from http://www.loftusmd.com/Articles/Pain/overview.html (I am using this doctors website to quote from cuz he makes it very readable. This doesn't mean he's the best person to know about it, just that he was easy to find on the net and seemed the easiest to read about that particular thing. He has some links to other things that might be interesting to heppers, like meds used to treat neuropathic pain Keppra, Lamictal, Neurontin, Tegretol and arbatrol, Topiramate, Trileptal, Zonegran So Cher, I'd say, find a doc who will work with you over time to eliminate possible triggers for your pain and try some different meds to find the ones that work best for you. Sometimes feeling bad could be as simple as low postassium, (which isn't really simple cuz it makes you really sick). But you won't know that unless you have a doctor who is looking for all those little things that can make us heppers and once upon a time heppers feel bad. Without my therapist, I wouldn't be making the progress I am now with my antidepressant. I found out I can't take the newer SSRI's, they make me depressed. I have to take Wellbutrin, which works on Dopamine. The older meds like Elavil and Trazadone don't bother me as much. They make me sleepy when I take them, but not all day, just enough to get a good nites sleep. Keep working on it Cher. It's rarely a simple thing that fixes us. It's more like trial and error. Good luck Alley alleypat@... http://home.comcast.net/~alleypat http://alleypat.livejournal.com " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Willem said <<Claudine you would have made a wonderfull Doctor.Have you ever considered becoming one?.>> Willem!!! Shame on you!! Claudine doesn't want to play doctor with you haaaaaaaaaaaaaaaaaaaaaaa or maybe she does evil grin. Alley alleypat@... http://home.comcast.net/~alleypat " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 Willem said <<Claudine you would have made a wonderfull Doctor.Have you ever considered becoming one?.>> Willem!!! Shame on you!! Claudine doesn't want to play doctor with you haaaaaaaaaaaaaaaaaaaaaaa or maybe she does evil grin. Alley alleypat@... http://home.comcast.net/~alleypat " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Hi Aleycat.No I don.t feel ashamed only hot because it.s very,very hot in Holland.Climate change is taken it.s effect.The reason for me asking Claudine about her aspiration of not becoming a Doctor is that I hve never met a person who could explain things so clearly and passionate.Those qualities you rarely see in Doctors.My Doctor does.nt explain anything,I only need him for prescriptions,the info I get from the web from persons like Claudine.Have a nice day in also very hot Texas and oh yes have some fun.Willem. Re: RE: arthritis joint like pain (cherry) Willem said <<Claudine you would have made a wonderfull Doctor.Have you ever considered becoming one?.>> Willem!!! Shame on you!! Claudine doesn't want to play doctor with you haaaaaaaaaaaaaaaaaaaaaaa or maybe she does evil grin. Alley alleypat@... http://home.comcast.net/~alleypat " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Hi Aleycat.No I don.t feel ashamed only hot because it.s very,very hot in Holland.Climate change is taken it.s effect.The reason for me asking Claudine about her aspiration of not becoming a Doctor is that I hve never met a person who could explain things so clearly and passionate.Those qualities you rarely see in Doctors.My Doctor does.nt explain anything,I only need him for prescriptions,the info I get from the web from persons like Claudine.Have a nice day in also very hot Texas and oh yes have some fun.Willem. Re: RE: arthritis joint like pain (cherry) Willem said <<Claudine you would have made a wonderfull Doctor.Have you ever considered becoming one?.>> Willem!!! Shame on you!! Claudine doesn't want to play doctor with you haaaaaaaaaaaaaaaaaaaaaaa or maybe she does evil grin. Alley alleypat@... http://home.comcast.net/~alleypat " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 -----Original Message----- From: AlleyPat [mailto:alleypat@...] It's rarely a simple thing that fixes us. It's more like trial and error. The above statement says it all- I and my neurologist have experimented for several years with OTC, scripts, and alternatives. What works for me is a mix of all three. I am doing pretty good now, although it took a few years of trying to get here. But-it can be done-never give up. gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Willem, I was just joking with ya My gf in Holland says it's hot there too. But I guess it's hot for yall. I think it's in the high 80's (F) for yall. That's spring time for us! Monday I was out in the heat and it was 98F, supposed to hit 100F but don't think it made it. I keep my page weather section checking Eindhoven weather. Eindhoven63...90 F Arlington, TX*71...94 F Dallas, TX*75...95 F Ft. Worth, TX*73...95 F Yall are warm! That's at 10:36am Wed my time. Wow! Willem, stay cool man. Run nude thru a few fountains Alley alleypat@... http://home.comcast.net/~alleypat " Thou reeky dizzy-eyed pantaloon! " from http://www.tower.org/insult/insult.html Quote Link to comment Share on other sites More sharing options...
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