Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 Hi Mark: About all I can offer is sympathy, because like so many others, I've been there. Too bad we don't all have an M.D. standing by with syringe of demerol. Yes, at times I considered going (or rather being taken) to the emergency room for a hypo. I was simply incapacitated. As we tell our sons: You just have to suck it up and gut it out. Hope you feel better real soon, Harry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 hi mark, i can sure sympathize with you. i have been going thru a pretty rough time since december. pain in every joint....hurts to move. but, for me, laying down makes it worse. my fatigue level is almost painful...i could lay down and sleep anywhere, anytime, but i limit to a 15 minute power nap at noon...that seems to help. as much as i hate to do it....lately i have been taking an extra burst of prednisone one day per week to try settle things down. i take no ap on the wkends, and monday is usually my best day. then i take mino m-w-f and clindy on tue.....gets me into a pretty good flare by saturday. guess im getting off track...to answer your question....i keep on the move as much as possible....and a cuple hot baths during the day seem to help. dave > Is there anything you guys do in particular when you are going thru a > monster flare? I'm am screaming all over - neck,shoulders,hands,hips, > knees, feet - takes all my effort just to stand, feel tired now. Do you > just lay down and rest - does that make it feel better or do you just > stiffen up worse? Not sure if I should try to keep moving or just not move > period. Also - have any of you ever had this stuff affect your vision? > Last few days, my vision doesn't seem to be quite right - thinigs are just > not as sharp as they should be - makes me want to blink now and then to try > and refocus. Can this be the RA affecting it? I know some of you have had > this stuff really bad - I used to sit here and think - boy, glad that's not > me. Well, now I know how you felt - gads. > > Any thoughts are appreciated! > > Mark > http://members.tripod.com/~Mark_Holmes > RA 4/98 AP 7/98 > Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive > leaf;slippery elm;Zone Diet > RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 In a message dated 7/10/99 11:10:45 AM Eastern Daylight Time, MHOLMES@... writes: << I'm am screaming all over - neck,shoulders,hands,hips, knees, feet - takes all my effort just to stand, feel tired now. Do you just lay down and rest - does that make it feel better or do you just stiffen up worse? >> Hi Mark, Ooooooh I feel for you. So so hard when you have so much pain. I can't say I ever got it in so many joints so fiercely at one time. BUT when I did get overwhelmed with the pain I would take a dose of Prednisone to quiet things down. I remember when the Doc gave me Decadron 20mg and now I know that is a terrificly high dose. Haven't done that in years but I do have 5mg and 1mg tabs on hand to pulse if I need it. I will not put up with those screaming, pulsing, toothaching, earaching, throbbing joints anymore like I did the first couple years of the RA. Perhaps you should ask your Doc for some to have on hand for times like this. Sometimes all it takes is 1 dose to quiet things down. Good luck and prayers for you, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 When I have gone through big flares like this, I have always tried to rest as much as possible. At times this was the only option as if I tried to remain normally active I would just get worse and would start getting dizzy every time I tried to do anything. Also, just about every book I have read on RA says to rest the joints in an acute flare. It is important to move the joints some everyday though, to keep the range of motion. Some gentle yoga-like stretching, and just things like opening and closing your fist repeatedly should fit the bill. Aggressively resting always led to improvement for me. My eyes have been getting a tired feeling lately too, I put it down to too much time reading on the computer, but your question makes me think, maybe not?? Mine just feel overused, tired and wanting to blink, like you described, but not out of focus. Do yours get a little " sticky " feeling in the corners, like a mild hay fever or head-cold is affecting them? That is how mine feel sometimes, although I have no other cold or allergy symptoms. For me, it was always a case of my body telling me, if you don't use your judgment and go lie down, I'm going to lay you out cold. Sometimes I ignored it and twice actually blacked out in public. So, I cast my vote for rest. At times when it is just a case of several stiff and achy joints and not an overall feeling of illness, I just push through it. Listen to the wisdom of your body, and give it what it tells you it needs, IMO. Thanks for posting this question, it will be very interesting to me to see how others in the group deal with big flares. Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 Mark, When I'm flaring badly, I pretty much give in to it and try to rest as much as possible. I find I often run a fever when I'm flaring, which wears me out even more so that I need to rest. I know it hurts no matter what position you're in, just try to find whatever is the least uncomfortable. I also try to move around periodically to avoid totally seizing up. I also have trouble with my vision in a flare, although since I quit taking Plaquinel, my vision has been significantly better for the most part. I don't know how to break a flare, although I caught a cold in the middle of my last one and miraculously, on about the third day of the cold, the flare eased up. I think the cold deflected my immune system away from my joints and I was almost glad I caught it. Just be kind to yourself, rest as much as possible and remember, this too shall pass. Hope you feel better soon. a " HOLMES, MARK T. " wrote: > > From: MHOLMES@... (HOLMES, MARK T.) > > Is there anything you guys do in particular when you are going thru a > monster flare? I'm am screaming all over - neck,shoulders,hands,hips, > knees, feet - takes all my effort just to stand, feel tired now. Do you > just lay down and rest - does that make it feel better or do you just > stiffen up worse? Not sure if I should try to keep moving or just not move > period. Also - have any of you ever had this stuff affect your vision? > Last few days, my vision doesn't seem to be quite right - thinigs are just > not as sharp as they should be - makes me want to blink now and then to try > and refocus. Can this be the RA affecting it? I know some of you have had > this stuff really bad - I used to sit here and think - boy, glad that's not > me. Well, now I know how you felt - gads. > > Any thoughts are appreciated! > > Mark > http://members.tripod.com/~Mark_Holmes > RA 4/98 AP 7/98 > Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive > leaf;slippery elm;Zone Diet > RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 Make sure you or someone puts your affected joints through range of motion exercises several times a day. Ethel " HOLMES, MARK T. " wrote: > > From: MHOLMES@... (HOLMES, MARK T.) > > Is there anything you guys do in particular when you are going thru a > monster flare? I'm am screaming all over - neck,shoulders,hands,hips, > knees, feet - takes all my effort just to stand, feel tired now. Do you > just lay down and rest - does that make it feel better or do you just > stiffen up worse? Not sure if I should try to keep moving or just not move > period. Also - have any of you ever had this stuff affect your vision? > Last few days, my vision doesn't seem to be quite right - thinigs are just > not as sharp as they should be - makes me want to blink now and then to try > and refocus. Can this be the RA affecting it? I know some of you have had > this stuff really bad - I used to sit here and think - boy, glad that's not > me. Well, now I know how you felt - gads. > > Any thoughts are appreciated! > > Mark > http://members.tripod.com/~Mark_Holmes > RA 4/98 AP 7/98 > Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive > leaf;slippery elm;Zone Diet > RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Mark: I, also, have been going through a really bad stage, and for the life of me I can't figure out the cause. I wake up all through the night filled with pain, so much I can't even roll over. I walk like a 110 year old woman when I get up in the morning. It';s especially bad in my knee's and shoulders. And I was doing SO well before this started. I get so depressed about it that I can hardly function. I feel like giving up, but of course I don't. I just keep going. I have THIS hope very strong in me that just knows things will be better. No, I don't stay in bed, I have to go to work, etc. And I feel quite a bit better after I'm up and moving for a while. Although the depression has been lasting pretty much through my days. I wish this (whatever it is ) would ssssstop...... Thanks for listening. Guess I wasn't much help to you, except to know " you're not alone " . Sandy On Sat, 10 Jul 1999, HOLMES, MARK T. wrote: > From: MHOLMES@... (HOLMES, MARK T.) > > > Is there anything you guys do in particular when you are going thru a > monster flare? I'm am screaming all over - neck,shoulders,hands,hips, > knees, feet - takes all my effort just to stand, feel tired now. Do you > just lay down and rest - does that make it feel better or do you just > stiffen up worse? Not sure if I should try to keep moving or just not move > period. Also - have any of you ever had this stuff affect your vision? > Last few days, my vision doesn't seem to be quite right - thinigs are just > not as sharp as they should be - makes me want to blink now and then to try > and refocus. Can this be the RA affecting it? I know some of you have had > this stuff really bad - I used to sit here and think - boy, glad that's not > me. Well, now I know how you felt - gads. > > Any thoughts are appreciated! > > Mark > http://members.tripod.com/~Mark_Holmes > RA 4/98 AP 7/98 > Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive > leaf;slippery elm;Zone Diet > RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Mark, I'm sorry to hear you are having such a difficult time right now. I guess the bottom line is that you must listen to your body. Rest when you need to but balance it with some gentle movement and range of motion. It is so easy to lose some degree of functioning in a joint. It has happened to me before I've realized what's going on because our natural instinct is to protect a painful joint. Another issue I have found to be very important is the mind/body connection. A flare causes a lot of physical and emotioal stress. In my case, stress plays havoc with my RA and my pain levels. I have found visualization and relaxation techniques to be crucial during a flare. I have even found pain levels to be decreased after doing some of these techniques. A good place to start is with THE RELAXATION RESPONSE by Dr. Herbert Benson. rheumatic Monster Flare >From: MHOLMES@... (HOLMES, MARK T.) > > >Is there anything you guys do in particular when you are going thru a >monster flare? I'm am screaming all over - neck,shoulders,hands,hips, >knees, feet - takes all my effort just to stand, feel tired now. Do you >just lay down and rest - does that make it feel better or do you just >stiffen up worse? Not sure if I should try to keep moving or just not move >period. Also - have any of you ever had this stuff affect your vision? >Last few days, my vision doesn't seem to be quite right - thinigs are just >not as sharp as they should be - makes me want to blink now and then to try >and refocus. Can this be the RA affecting it? I know some of you have had >this stuff really bad - I used to sit here and think - boy, glad that's not >me. Well, now I know how you felt - gads. > >Any thoughts are appreciated! > >Mark >http://members.tripod.com/~Mark_Holmes >RA 4/98 AP 7/98 >Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive >leaf;slippery elm;Zone Diet >RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Hi Mark! Geoff Crenshaw here. " HOLMES, MARK T. " wrote: > > Is there anything you guys do in particular when you are going thru a > monster flare? I'm am screaming all over - neck,shoulders,hands,hips, > knees, feet - takes all my effort just to stand, feel tired now. Do you > just lay down and rest - does that make it feel better or do you just > stiffen up worse? Not sure if I should try to keep moving or just not move > period. Also - have any of you ever had this stuff affect your vision? > Last few days, my vision doesn't seem to be quite right - thinigs are just > not as sharp as they should be - makes me want to blink now and then to try > and refocus. Can this be the RA affecting it? I know some of you have had > this stuff really bad - I used to sit here and think - boy, glad that's not > me. Well, now I know how you felt - gads. When mine was really, really bad I increased and played around with my RA SPES doseage, splitting it am/pm, etc. Brought it under control usually within 24 hrs. The blurry vision is more from the fatigue of the flare. Your eyes use 50% of your body's energy. When the chronic pain worsens into a serious flare, there just isn't as much to go around, so your vision suffers. Try to get lots of rest, make sure you - or someone else helps you - do range of motion exercises, sleep very, very warm (near hot) and drink tons of water, and eat very clean food - no condiments or spices of any kind, raw veggies if you can chew, unseasoned grilled fish, non-chemical organic chicken, and avoid meat / dairy / wheat / coffee / sugar. The RA SPES was a Godsend. Don't know if you've tried it but if not you might want to. Seems it works for about 80% of those who use it. HTH -- Regards, Geoff Crenshaw, ACC ---------------------- Managing Partner ** No Disclaimers ** Captain Cook's Cruise Center ---------------------- ---------------------------------------------------------------------- Over 3,000 daily cruise & tour specials > Top 5% of Web Sites http://www.800-800-cruise.com [specials] > Top 100 Travel Sites .. > Top Web Sites for Cruise tips New Zealanders http://www.800-800-cruise.com [tips] USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 ---------------------------------------------------------------------- geoff@... " Behold now, Behemoth, which I made as well as you; He eats grass like an ox. Behold now, his strength in his loins, and his power in the muscles of his belly. He bends his tail like a cedar; The sinews of his thighs are knit together. His bones are tubes of bronze; His limbs are like bars of iron. He is the first of the ways of God. " God speaking to Job... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 In a message dated 7/10/99 8:53:43 PM Eastern Daylight Time, mimianne@... writes: << ok, when you refer to a " flare " ... my fingers and feet always hurt, no flaring at this time. if i take prednis. for say 2 months, does your RA turn into " flares " ??? will pred. actually have this effect???? i am also thought that you could not just take a preds. pill every now and then, that you had to " stay on the stuff " . please explain how to correctly " pulse " THANKS! >> Hello, I hurt all the time also. A flare is a sudden episode of abnormally high pain, sometimes accompanied with throbbing with every heart beat. It can be in only one joint or several. You would not take Pred for 2 months and consider that pulsing. You are then using Pred as an every day med for the disease. If you are on daily doses of Pred, pulsing is when you increase the dosage for a short period. Very short, like a day or two. If you are not using Pred daily you may be able to stop a flare by taking a 5 or 10mg of Pred once. Please talk to your Dr. about this. Prednisone is nothing to take lightly or cavalarily. In fact most Drs. do not even like to prescribe it at all. I know of no instance where taking Pred turns into " flares. " This has been my personal experience. Hope it helps. Anita RA 26 years, Fibro, AP 17 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Hi Everyone I guess I have not paid attention but could someone explain to me what SEP is? Merci Mado in Ottawa Re: rheumatic Monster Flare >From: Geoff Crenshaw <geoff@...> > >Hi Mark! Geoff Crenshaw here. > > " HOLMES, MARK T. " wrote: >> >> Is there anything you guys do in particular when you are going thru a >> monster flare? I'm am screaming all over - neck,shoulders,hands,hips, >> knees, feet - takes all my effort just to stand, feel tired now. Do you >> just lay down and rest - does that make it feel better or do you just >> stiffen up worse? Not sure if I should try to keep moving or just not move >> period. Also - have any of you ever had this stuff affect your vision? >> Last few days, my vision doesn't seem to be quite right - thinigs are just >> not as sharp as they should be - makes me want to blink now and then to try >> and refocus. Can this be the RA affecting it? I know some of you have had >> this stuff really bad - I used to sit here and think - boy, glad that's not >> me. Well, now I know how you felt - gads. > >When mine was really, really bad I increased and played around with my >RA SPES doseage, splitting it am/pm, etc. Brought it under control >usually within 24 hrs. > >The blurry vision is more from the fatigue of the flare. Your eyes use >50% of your body's energy. When the chronic pain worsens into a serious >flare, there just isn't as much to go around, so your vision suffers. >Try to get lots of rest, make sure you - or someone else helps you - do >range of motion exercises, sleep very, very warm (near hot) and drink >tons of water, and eat very clean food - no condiments or spices of any >kind, raw veggies if you can chew, unseasoned grilled fish, non-chemical >organic chicken, and avoid meat / dairy / wheat / coffee / sugar. > >The RA SPES was a Godsend. Don't know if you've tried it but if not you >might want to. Seems it works for about 80% of those who use it. > >HTH >-- >Regards, > >Geoff Crenshaw, ACC ---------------------- >Managing Partner ** No Disclaimers ** >Captain Cook's Cruise Center ---------------------- >---------------------------------------------------------------------- >Over 3,000 daily cruise & tour specials > Top 5% of Web Sites >http://www.800-800-cruise.com [specials] > Top 100 Travel Sites >. > Top Web Sites for >Cruise tips New Zealanders >http://www.800-800-cruise.com [tips] > >USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 >---------------------------------------------------------------------- >geoff@... > > " Behold now, Behemoth, which I made as well as you; He eats grass like >an ox. Behold now, his strength in his loins, and his power in the >muscles of his belly. He bends his tail like a cedar; The sinews of his >thighs are knit together. His bones are tubes of bronze; His limbs are >like bars of iron. He is the first of the ways of God. " > >God speaking to Job... > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 Hi Geoff: Yes that is what I mean. Mado Re: rheumatic Monster Flare >From: Geoff Crenshaw <geoff@...> > >mahay wrote: >> >> From: " mahay " <mahay@...> >> >> Hi Everyone >> >> I guess I have not paid attention but could someone explain to me what SEP >> is? Merci >> Mado in Ottawa > >SEP?? Do you mean SPES? >-- >Regards, > >Geoff Crenshaw, ACC ---------------------- >Managing Partner ** No Disclaimers ** >Captain Cook's Cruise Center ---------------------- >---------------------------------------------------------------------- >Over 3,000 daily cruise & tour specials > Top 5% of Web Sites >http://www.800-800-cruise.com [specials] > Top 100 Travel Sites >. > Top Web Sites for >Cruise tips New Zealanders >http://www.800-800-cruise.com [tips] > >USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 >---------------------------------------------------------------------- >geoff@... > > " Behold now, Behemoth, which I made as well as you; He eats grass like >an ox. Behold now, his strength in his loins, and his power in the >muscles of his belly. He bends his tail like a cedar; The sinews of his >thighs are knit together. His bones are tubes of bronze; His limbs are >like bars of iron. He is the first of the ways of God. " > >God speaking to Job... > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 mahay wrote: > > From: " mahay " <mahay@...> > > Hi Everyone > > I guess I have not paid attention but could someone explain to me what SEP > is? Merci > Mado in Ottawa SEP?? Do you mean SPES? -- Regards, Geoff Crenshaw, ACC ---------------------- Managing Partner ** No Disclaimers ** Captain Cook's Cruise Center ---------------------- ---------------------------------------------------------------------- Over 3,000 daily cruise & tour specials > Top 5% of Web Sites http://www.800-800-cruise.com [specials] > Top 100 Travel Sites .. > Top Web Sites for Cruise tips New Zealanders http://www.800-800-cruise.com [tips] USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 ---------------------------------------------------------------------- geoff@... " Behold now, Behemoth, which I made as well as you; He eats grass like an ox. Behold now, his strength in his loins, and his power in the muscles of his belly. He bends his tail like a cedar; The sinews of his thighs are knit together. His bones are tubes of bronze; His limbs are like bars of iron. He is the first of the ways of God. " God speaking to Job... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Hi Mado! Geoff Crenshaw here. RA SPES is an herbal compound that several of us on and off the list have found extremely effective for reducing inflammation, swelling & subsequent pain. I was given it by my DO, Dr. Pfau - (AP/Homeopath doc in Las Vegas) when I was in a really bad way. Saying it saved my life is not an overstatement. Others on the list have also reported dramatic positive results from using it to get off of Prednisone, NSAID's and other anti-inflammatories up to and including remission. One must temper that, however, with the understanding that: REMISSION = SLEEP ... NOT CURE! The group as a whole researched the ingredients last year and posted briefs on what each herb does individually. Also posted to the list were some of the results of a published double-blind study of the compound. (I saved these if you want them.) As a whole, the compound reduces the pain and swelling of rheumatic disorders while nourishing the adrenal cortex and influencing the adrenal gland to produce more of the body's own anti-inflammatory hormone, cortisol. Being made from living material (plants) it contains the usual array of hormones all living things produce, along with the other stuff like nondigestible fiber, etc. The compound should NOT be viewed as a curative for RA, but rather as an adjunct to the therapy, replacing Rx and OTC anti-inflammatory meds in those cases for whom it works (roughly 80%). It is taken on a daily regimen, like vitamins - not as a pain reliever, i.e., when needed. There is another compound from the same company which is purported to be a curative for OA, but I have no familiarity with it as that is not my disease (whew!). The drawbacks to the compound are cost and availability. It is not readily available at every corner drugstore or health food store; It is expensive retailing at $60 a bottle for 30 capsules, which is 15 days worth at label dosages. Obviously, being an herbal, it is not covered by most insurance. The group does enjoy a special arrangement with one supplier wherein we can buy the compound at a steep discount of $45/btl instead of $60. (I set this up with my supplier at the request of the group; My company processes credit cards for them.) It works best when taken on an empty stomach (as does anything taken orally) and most dramatically if you are not taking other antiinflammatories. There are no know contraindications for the compound, nor drug interaction problems that we know or have been advised of. Taken as " individual " components some of the herbs could be contraindicated for specific situations, e.g., licorice for High BP. According to the manufacturer however, these contraindications do not exist in the amounts contained in the compound. Some of us did report mild insomnia (waking at 4 or 5 am) in cases where we took all or part of the dose at nighttime; One person reported she was unable to continue the compound due apparently to a preexisting borderline potassium deficiency which presented when she was using it. (Potassium deficiency presents as irregular heartbeat.) The insomnia was relieved by taking the evening dose earlier in the day (say before 6:30 pm). I believe the lady with the potassium situation discontinued the compound. If you use more than 1 capsule daily over a period of time, you may find it more comfortable to wean off of the herbs over about a 7 day period, rather than stopping abruptly so your adrenal gland can adjust to working without being prompted. This is not due to danger (unlike Prednisone) but comfort. I have stopped them cold, reduced and increased my dosages, played with timing, etc., over the course of the year I've been on RA SPES with no ill effect, but everyone is different and there is no reason to suffer needlessly. (No pain, All gain as my bride is wont to say.) I started on 2 capsules a day (minimum label dosage) in the AM, split that 1a/1p which got rid of my morning stiffness, increased to 1a/2p, then 2a/2p (4/day) which is maximum label dose. At the time I started I was spending part of my time in a wheelchair, had lost over 25% of my body weight (6'4 " from 200 lb. to 142 lb.) and was loosing about 3 lb. per day. I noticed relief on the compound within a few days, and after 9 months had regained my weight stabilizing once again at 200 lb., am out of the chair walking barefooted on tile, something I was unable to do for the preceding 15 years. One complication I noticed was feeling " too good " and not being mentally prepared for it... I overdid it by going out and washing 3 cars. It felt so good to be able to get out and do this once tedious chore! But was I sore the next day. I have taken as much as 6/d (3 times) when I was being particularly idiotic about my diet and engaged high volumes of ice cream, beef, barbecue and pepper sauce. (Six was the maximum dose used in the double-blind study.) While it helped in the instant, there was no apparent continuing relief or improvement so I dropped back very quickly. (There was negative impact upon my purse!) Three months ago I added-in the AP after achieving " technical " remission of the RA from the herbs. (I was not taking anything else. My rheumy declared me in remission - my view of remission and his apparently differ.) Since then I have experienced the familiar Herx's written of so frequently here, but not to any really bad degree. I believe the herbs have kept the influence of the Herxing to a minimum. 4 days ago I reduced my dosage back to 3/day (1a/2p). It was an interesting experience, considering months before my Rheumy had declared me the " perfect " candidate for Methotrexate. I'm not discounting his expertise, I simply preferred a different road than where his training and experience dictated he take me. HTH -- Regards, Geoff Crenshaw, ACC ---------------------- Managing Partner ** No Disclaimers ** Captain Cook's Cruise Center ---------------------- ---------------------------------------------------------------------- Over 3,000 daily cruise & tour specials > Top 5% of Web Sites http://www.800-800-cruise.com [specials] > Top 100 Travel Sites .. > Top Web Sites for Cruise tips New Zealanders http://www.800-800-cruise.com [tips] USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 ---------------------------------------------------------------------- geoff@... " Behold now, Behemoth, which I made as well as you; He eats grass like an ox. Behold now, his strength in his loins, and his power in the muscles of his belly. He bends his tail like a cedar; The sinews of his thighs are knit together. His bones are tubes of bronze; His limbs are like bars of iron. He is the first of the ways of God. " God speaking to Job... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 1999 Report Share Posted July 13, 1999 Geoff wrote: >briefs on what each herb does individually. Also posted to the list were >some of the results of a published double-blind study of the compound. >(I saved these if you want them.) I would like to see them as I am looking for alternatives to nsaids, which don't seem to work for me, and to the prednisone I am having to take right now to keep a flare in control. Could they perhaps be put up in the shared files area, or could you please send them along to me? I have heard from another source that RA Spes contains a lot of steroids, not prednisone or other known steroids, so presumably phytosterols of some sort???--do you have any info on this? TIA, Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Hi Liz! Hi Mike! Geoff Crenshaw here. Below are some relevant posts I saved on RA SPES from when the group looked it over last year. As to your question about hormones, Liz, I don't have what " I " think is a good answer. I know every living thing has it's own natural hormones, steroids, etc., some more, some less, some OK for us, some questionable (like the new stuff in dairy cattle), and some outright dangerous, like Prednisone. One of our members had an herbalist whome she used to see purportedly enlist the aid of a lab to do a gas chromatograph on the compound. The herbalist then reported to our member it contained steroids of an " unknown nature " but definately NOT prednisone or any other manufactured steroid. Our member was never privy to see the actual report, nor have we seen it, so we have no first hand info. I understand it is available for $150 or so if you're interested. +++ START OLD POSTS +++ Tue, 04 Aug 1998 01:09:47 Hello Dottie: It is great to hear that you are doing so well with clindamycin. Keep us informed. Along with Geoff, I have been testing RA-SPES. So far, the results have been impressive. Reduced pain, inflamation, and stiffness, along with more energy and ability to get more things done. I hear that you are doing research on the ingredients of RA-SPES. Will you be able to share this with the group when you are ready? I know many are interested. We will continue to work on finding it at a lower price, so that more can afford to try it. So far Geoff has found the best price of $45. CHINESE JOURNAL OF RHEUMATIC DISEASE, vol 3,#3,p29,1985 1- Test showed improvement in 7 markers. 2-Clinical symptoms reduced by 50% in 2 weeks & 90 % after 3 months. 3-Patients took 4 to 6 capsules per day. SINCERELY, ray --------------- Wed, 05 Aug 1998 14:46:42 -0700 Dr. Stan on wrote: > > Dear Geoff-- > > Could you and Ray be a little more specific about your before and > after experiences with RA SPES? > > Thanks- > > dr. stan > RA 2 yrs.; AP 13 mos. Sure. Been on this stuff about 3 wks now... BEFORE Fingers swollen 2-3x normal size; golf-ball size swelling on back of left wrist; right wrist not visible with swelling completly merged to *distal* joints of fingers; hands do not close; fingers unable to hold single sheet of paper; hands unable to hold weight of standard wooden pencil; hands cramping at keyboard; muscle-tendon presentation in palm of rt hand; muscle-tendon presentation on underside of rt little finger at proximal to medial joints; multiple nodules appearing and growing in both elbows; shoulders limited range of motion; top of shoulders presenting nodules bilatterally; left elbow range limited, swollen to inside of arm; both wrists swollen to inside of arm; left elbow will not straighten; left arm flexion & extension inhibited; both hips bilatterally painful; right & left knees engorging periodically... but *NOT* bilatterally; calf pain; cramping in bottom of feet; cramping by contrasted muscle pairs in lower limbs; swollen ankles - bilatterally; swollen joints in feet protruding beyond sole, especially proximal joints; hammer-head toes; zero energy; forgetfullness; loss of appetite; weight loss; trouble keeping weight on; hairloss; expected and routine depression for symptoms. RA 15 yrs Enough for your purposes? Unaware exact specs on blood work. AFTER Fingers - returned to normal size, proximal joints now visible but still swollen - mobility & grip strength improved; swelling on left wrist - reduced 80%; right wrist - swelling reduced 98% - appears nearly normal; hands - close about 80% now w/ improved grip; fingers unable to hold single sheet of paper - can now; hands unable to hold weight of standard wooden pencil - no problem now; hands cramping at keyboard - not anymore; muscle-tendon presentation in palm of rt hand - gone; muscle-tendon presentation on underside of rt little finger at proximal to medial joints -- still there; multiple nodules appearing and growing in both elbows - reducing in size & number; shoulders limited range of motion - improved, and both near normal; top of shoulders presenting nodules bilatterally - nearly gone; left elbow range limited, swollen to inside of arm - improved, swelling decreased - no longer visible on underside of arm, mobility improved, nearly able to straighten completely; both wrists swollen to inside of arm - improving but still problematic in left, better in rt; left elbow will not straighten - improved (almost full); left arm flexion & extension inhibited - improved as noted; both hips bilatterally painful - resolved, pain gone; right & left knees engorging periodically... but *NOT* bilatterally - improved, self-resolving w/out draining nor cortisone; calf pain - gone; cramping in bottom of feet - gone; cramping by contrasted muscle pairs in lower limbs - gone, thank God... you can't imagine how painful it is to have a cramp and when you try to straighten the muscle to relieve it, the contrasting muscle cramps too; swollen ankles - bilatterally - improved 75%; swollen joints in feet protruding beyond sole, especially proximal joints - improved dramatically, rt foot nearly gone, left now distinct vs merged due to reduction - able to walk few feet w/out padding from shoes; hammer-head toes - improving - one is almost flat, rest unremarkable at this time; zero energy - improved on 0-10 scale w/ 0 at bottom, energy now fluctuating between 7-8, sometimes 9; forgetfullness - improved; loss of appetite - immproved; weight loss - stabalized and starting to gain but very slow; trouble keeping weight on - improved as noted; hairloss - well, it doesn't fix *everything*; expected and routine depression for symptoms - resolved. Help? -- Regards, Geoff ---------------------- Fri, 07 Aug 1998 02:09:06 , here is a summary of recent posts on RA-SPES. I suggest you try it, along with getting more antibiotic in your program. RESEARCH: CHINESE JOURNAL OF RHEUMATIC DISEASE, vol 3,#3,p29,1985 1- Test showed improvement in 7 markers of RA 2- Clinical symptoms reduced by 50% in 2 weeks & 90 % after 3 months. 3- Patients took 4 to 6 capsules per day. INGREDIENTS: 1-Acanthropanax senticosus Harms (Ginseng)-------------------- The active substance, glycoside, appears to be responsible for the adaptogenic properties of this plant. Glycosides act on the adrenal glands to provide support and stimulation of efficient adrenal functioning. Shown to increase the activity and production of the T-lymphocytes (the white blood cells that protect against microorganisms such as bacteria and viruses). 2-Alisma plantago-aquatica L. (Water Plantain or Mad-dog Weed) Active substance is a glycoside. Anti-inflammatory, anti-toxic effects. Also reported to have diuretic and diaphoretic properties. 3-Artemisia capillaris Thunb (Oriental Wormwood) ----------- Mild medicinal application. Effect of enhancing blood circulation. " Aiyeh " in chinese. 4-Bupelrum chinense-------------- Improves immune system activity. Used by chinese herbalists to reduce or relieve pain resulting from inflammation. 5-Corydalis bulbosa------------- Invigorates blood and promotes circulation. Effective in pain reduction. Used in chinese medicine. " Yanhusou " in chinese. 6-Dioscorea opposita Thunb (Wild Yam)------------------------ Wild Yam contains a multitude of hormone-like compounds that have been used to treat a variety of medical problems. These hormone compounds (precursors) assist in the body's productions of hormones, such as DHEA and Pregnenalone. These substances help regulate our metabolisms. The levels of these substances declines naturally as we age. Research has shown a direct correlation between this decline in hormone levels and degenerative health conditions such as rheumatoid arthritis and osteoarthritis. Recognized for its anti-inflammatory, anti-rheumatic and mild diaphoretic effects. 7-Glycyrrhiza (Licorice)---------- Glycyrrhizin, a saponin found in the licorice root, has anti-inflammatory, anti-viral and anti-allergenic properties. Time honored remedy for arthritis due to its anti-inflammatory properties. Stimulates the productions of 2 steroids, cortisone and aldosterone, which help reduce inflammation. Used by the chinese for more than 5000 years. 8-Schizandra chinensis Baill----- Considered to be an adaptogen, capable of increasing the body's resistance to disease and stresses (immune enhancement). 9-Scutellaria baicalensis-------- (Skullcap) Used to treat inflammatory-type disorders in China and Japan for centuries. The plant root, also called " goldenroot " , contains a high amount of flavonoids, giving it is yellow color. Known for it antioxidant, antiviral, antibacterial effects. [NOTE: Not to be confused with Goldenseal] SINCERELY, ray ---------------------------------- Tue, 01 Sep 1998 12:05:01 -0700 Hello group! Geoff Crenshaw here. I went looking for more info on this after some private email (women would say - 'he stormed off in a huff') and discovered the following of benefit to anyone with a BP concern with this particular product. My thanks to for her encouragement and 'call to action'. This data is from the same Physician Ray was talking about, and all cautions regarding this particular study should be applied to this information also. SOURCE RA-SPES Basic Study and Clinical Trial for Rheumatoid Arthritis F. Tzeng, M.D. Page 23, [Table II-2. Safe Dosage and Side Effect] CASE DOSAGE WEIGHT BP (other data omitted here) ( - indicates no change) (before -> after) (3 mo's) 1 2-3 qd - 178/82 -> 134/82 2 2 qd - - 3 2 bid - - 4 3 bid 219 -> 224 150/100 -> 152/90 5 2 bid - 140/90 -> 125/90 6 2-3 bid - - 7 2 tid - - 8 2 bid 118 -> 124 160/80 -> 140/76 9 2 bid - - 10 2 bid - - " Note 8. Dosage and potential side effect Two patients gained weight. Two patients became appetitive. One patient increased neutrophils/lymphocytes rate. One patient increased triglycerides. One patient increased GOP and GPT. Four hypertensive cases, blood pressure was got down. Two hyperlipemia cases, triglycerides level was decreased. " -------------- From: 'Original Data RA SPES Clinical Trial' Case Sheets CASE SEX / AGE / DATE OF ONSET PREVIOUS DRUGS ADVERSE REACTIONS TO PREVIOUS DRUGS 1 F 54 07/13/93 Tylenol, Dolobid, Prednisone 15mg, Motrin, Feldene Hypertension 120/100mmHg, after a month: GI intolerance (Mylanta) 2 F 33 07/--/92 Ketoprofen, Prednisone 5mg, Ansaid, Feldene, 12/02/95~09/07/96 SPES+Orudis Adverse reactions: - CONTINUED Prednisone 5mg 3 NOTE - Sheet for Case No. 04 appears to be this patient F 81 20 yrs Methotrexate 2.5mg twice/wk, Motrin, Sulindac, Prednisone 5-10mg/d Adverse reactions: - 4 NOTE - Sheet for Case No.05 appears to be this patient F 45 1 YR Relafin, Oruvail Adverse reactions: - 5 NOTE - Sheet for Case No.06 appears to be this patient CAUTION: BP numbers NOT EXACT MATCH Table reports: 140/90 -> 125/90 Sheet reports: 140/90 -> 125/80 F 56 2 YRS Tylenol, Plaquenil, Methotrexate, Prednisone, Gold Adverse reactions: - 6 NOTE - Sheet for Case No.07 appears to be this patient F 38 5 yrs Naprosyn, Tylenol, Imuran, Prednisone Adverse reactions: moon face, Hyperlipoproteinemia 7 NOTE - Sheet for Case No.09 appears to be this patient F 72 10/28/95 Arthfree, Prednisone, Methotrexate, Feldene, Voltaren Indocin, SPES Adverse reactions: - 8 NOTE - Sheet for Case No.11 appears to be this patient F 66 5 09/19/96 Previous Drugs: No Adverse reactions: - CAUTION: BP numbers NOT EXACT MATCH Table reports: 160/80 -> 140/76 Sheet reports: 160/82 -> 140/76 9 NOTE - Sheet for Case No.14 appers to be this patient F 46 08/28/96 Tolectin, Prednisone 10mg/d Adverse reactions: - 10 SEE NOTE NOTE BY GC: These are the apparent correlating data, table to sheets. It seems the table reflects 'selected cases' and the sheets do as well. This data was provided by BotanicLab in their " Doctors Kit " and is obviously not exhaustive. CASE No. CASE No. TABLE SHEET 1 01 2 02 3 04 <-- 4 05 5 06 6 07 7 09 <-- 8 11 <-- 9 14 10 ---- I hope this helps anyone looking for additional data. -- Regards, Geoff +++ END OLD POSTS +++ HTH, Geoff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Mark, Just got back from a trip and reading this e-mail makes me feel for you and remember what it was like for me -- awful, too. Two things I might suggest: if your stomach will tolerate it, you might try ibuprofen and see if that helps. Also, fish oil capsules (high grade, salmon oil is probably the best) is helpful for pain and for your energy level. During the first 3 months I was on AP with all sorts of pain and lacking energy, I read in " The Zone " that people with autoimmune disorders were unable to convert substances into GLA and EPA (essential fatty acids) which are vital for the good prostaglandins that fight against pain and, therefore, must use supplements. After I had been on them for a month I had to close my Mom's house and handle the distribution of its contents. I found myself up late at night after going all day. Prior to this, I was requiring long, long naps just to survive. When I realized the change at the end of these long days, I was briefly at a loss to explain it, but it had to be the combination of Minocin and the fish oil caps. Nothing else had changed. Hope you feel better soon. I really believe you will. Also, I believe when your body tells you you need rest, you do need rest. Hang in there, Billie Re: rheumatic Monster Flare >From: " Dave Brantl " <dbrantl@...> > >hi mark, >i can sure sympathize with you. i have been going thru a pretty rough time >since december. pain in every joint....hurts to move. but, for me, laying >down makes it worse. my fatigue level is almost painful...i could lay down >and sleep anywhere, anytime, but i limit to a 15 minute power nap at >noon...that seems to help. as much as i hate to do it....lately i have been >taking an extra burst of prednisone one day per week to try settle things >down. i take no ap on the wkends, and monday is usually my best day. then >i take mino m-w-f and clindy on tue.....gets me into a pretty good flare by >saturday. >guess im getting off track...to answer your question....i keep on the move >as much as possible....and a cuple hot baths during the day seem to help. >dave >> Is there anything you guys do in particular when you are going thru a >> monster flare? I'm am screaming all over - neck,shoulders,hands,hips, >> knees, feet - takes all my effort just to stand, feel tired now. Do you >> just lay down and rest - does that make it feel better or do you just >> stiffen up worse? Not sure if I should try to keep moving or just not >move >> period. Also - have any of you ever had this stuff affect your vision? >> Last few days, my vision doesn't seem to be quite right - thinigs are just >> not as sharp as they should be - makes me want to blink now and then to >try >> and refocus. Can this be the RA affecting it? I know some of you have had >> this stuff really bad - I used to sit here and think - boy, glad that's >not >> me. Well, now I know how you felt - gads. >> >> Any thoughts are appreciated! >> >> Mark >> http://members.tripod.com/~Mark_Holmes >> RA 4/98 AP 7/98 >> Minocycline (Lederle generic) 100mg 2x/day; Lodine 400mg 3x/day;olive >> leaf;slippery elm;Zone Diet >> RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html >> >> >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Please put it on the shared files section, I'm not interested in it now, but maybe later. Liz G. wrote: > > From: " Liz G. " <pioneer@...> > > Geoff wrote: > >briefs on what each herb does individually. Also posted to the list were > >some of the results of a published double-blind study of the compound. > >(I saved these if you want them.) > > I would like to see them as I am looking for alternatives to nsaids, which > don't seem to work for me, and to the prednisone I am having to take right > now to keep a flare in control. Could they perhaps be put up in the shared > files area, or could you please send them along to me? I have heard from > another source that RA Spes contains a lot of steroids, not prednisone or > other known steroids, so presumably phytosterols of some sort???--do you > have any info on this? TIA, Liz G > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Geoff, I too am interested in the components of RA Spes and anything else you know about it. I am currently starting to wean off prednisone. Thanks, >From: " Liz G. " <pioneer@...> >Reply- " Liz G. " <pioneer@...> > " RA Support Group " <rheumaticonelist> >Subject: Re: rheumatic Monster Flare >Date: Tue, 13 Jul 1999 10:13:24 -0700 > >From: " Liz G. " <pioneer@...> > >Geoff wrote: > >briefs on what each herb does individually. Also posted to the list were > >some of the results of a published double-blind study of the compound. > >(I saved these if you want them.) > >I would like to see them as I am looking for alternatives to nsaids, which >don't seem to work for me, and to the prednisone I am having to take right >now to keep a flare in control. Could they perhaps be put up in the shared >files area, or could you please send them along to me? I have heard from >another source that RA Spes contains a lot of steroids, not prednisone or >other known steroids, so presumably phytosterols of some sort???--do you >have any info on this? TIA, Liz G > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 arjay wrote: > > From: arjay <arjay@...> > > Please put it on the shared files section, I'm not interested in it now, > but maybe later. > Pardon my ignorance, but... how? -- Regards, Geoff Crenshaw, ACC ---------------------- Managing Partner ** No Disclaimers ** Captain Cook's Cruise Center ---------------------- ---------------------------------------------------------------------- Over 3,000 daily cruise & tour specials > Top 5% of Web Sites http://www.800-800-cruise.com [specials] > Top 100 Travel Sites .. > Top Web Sites for Cruise tips New Zealanders http://www.800-800-cruise.com [tips] USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 ---------------------------------------------------------------------- geoff@... " Behold now, Behemoth, which I made as well as you; He eats grass like an ox. Behold now, his strength in his loins, and his power in the muscles of his belly. He bends his tail like a cedar; The sinews of his thighs are knit together. His bones are tubes of bronze; His limbs are like bars of iron. He is the first of the ways of God. " God speaking to Job... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 If I get worse for some unknown reason instead of being in remission in a couple more months I'd want to consider RASpecs---certainly ahead of presnisone so I'd want to know more about it. If the info is available why not put it where everyone can easily find it. Geoff Crenshaw wrote: > > arjay wrote: > > > > From: arjay <arjay@...> > > > > Please put it on the shared files section, I'm not interested in it now, > > but maybe later. > > > > Pardon my ignorance, but... how? > -- > Regards, > > Geoff Crenshaw, ACC ---------------------- > Managing Partner ** No Disclaimers ** > Captain Cook's Cruise Center ---------------------- > ---------------------------------------------------------------------- > Over 3,000 daily cruise & tour specials > Top 5% of Web Sites > http://www.800-800-cruise.com [specials] > Top 100 Travel Sites > . > Top Web Sites for > Cruise tips New Zealanders > http://www.800-800-cruise.com [tips] > > USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 > ---------------------------------------------------------------------- > geoff@... > > " Behold now, Behemoth, which I made as well as you; He eats grass like > an ox. Behold now, his strength in his loins, and his power in the > muscles of his belly. He bends his tail like a cedar; The sinews of his > thighs are knit together. His bones are tubes of bronze; His limbs are > like bars of iron. He is the first of the ways of God. " > > God speaking to Job... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 1999 Report Share Posted July 15, 1999 Hi ! Geoff Crenshaw here. arjay wrote: > > If I get worse for some unknown reason instead of being in remission in > a couple more months I'd want to consider RASpecs---certainly ahead of > presnisone so I'd want to know more about it. If the info is available > why not put it where everyone can easily find it. I posted it to the support email list, figured that was the most available possible to everyone on the list. I didn't know (then) how to put it in shared files, have never used that area and am not familiar with it. I'm no neophyte to computers but sending it to the list really did seem the best answer. I'll try scrounging around in ONElist when I get some time and see how that all works. Then I'll re-work some of the emails I saved for posting there and let y'all know when it's up. -- Regards, Geoff Crenshaw, ACC ---------------------- Managing Partner ** No Disclaimers ** Captain Cook's Cruise Center ---------------------- ---------------------------------------------------------------------- Over 3,000 daily cruise & tour specials > Top 5% of Web Sites http://www.800-800-cruise.com [specials] > Top 100 Travel Sites .. > Top Web Sites for Cruise tips New Zealanders http://www.800-800-cruise.com [tips] USA PH: 800-800-CRUIse PH: 559-636-8413 FAX: 559-734-1420 ---------------------------------------------------------------------- geoff@... " Behold now, Behemoth, which I made as well as you; He eats grass like an ox. Behold now, his strength in his loins, and his power in the muscles of his belly. He bends his tail like a cedar; The sinews of his thighs are knit together. His bones are tubes of bronze; His limbs are like bars of iron. He is the first of the ways of God. " God speaking to Job... Quote Link to comment Share on other sites More sharing options...
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