Guest guest Posted September 25, 1998 Report Share Posted September 25, 1998 Hi Trish, All you had to do was register. I';ll make the first post soon, and then we are off! My feet are pretty nasty fifty percent of the time - it is plantar fascitis caused by the PA. Other than ice, using a wooden foot roller device, elevation and using a cane to take so me pressure off, there is not much to do except take the DMARDS and or pain meds. Today I had a whopper neck pain, and a severe headache with vomiting. I virtuallly laid in bed most of the day feeling miserable and exhausted. I sure hope that the increase in Imuran helps me soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1998 Report Share Posted September 25, 1998 uhhhh, I think you sent this to me inadvertantly. Uv [ ] Re: MTX >From: CTNATIVE@... > >Hi Trish, > >All you had to do was register. I';ll make the first post soon, and then we >are off! > >My feet are pretty nasty fifty percent of the time - it is plantar fascitis >caused by the PA. >Other than ice, using a wooden foot roller device, elevation and using a cane >to take so me pressure off, there is not much to do except take the DMARDS and >or pain meds. >Today I had a whopper neck pain, and a severe headache with vomiting. I >virtuallly laid >in bed most of the day feeling miserable and exhausted. I sure hope that the >increase in Imuran helps me soon. > > > >------------------------------------------------------------------------ >To unsubscribe from this mailing list, or to change your subscription >to digest, go to the ONElist web site, at and >select the User Center link from the menu bar on the left. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 1999 Report Share Posted January 29, 1999 Dear Randi, I am on 15 mg of MTX. I know that it can take several months to kick in. I don't know when mine did. I may have noticed less morning stiffness, as for pain, I didn't get any relief until I started the prednisone. Good Luck! Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 1999 Report Share Posted January 30, 1999 Trish, Have you taken Oxycontin instead of pred for the pain? Pred can give you OA over long time usage? Have you tried various pain meds so as to avoid the pred? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 In a message dated 1/30/99 10:39:47 AM Hawaiian Standard Time, PBias@... writes: << Have you taken Oxycontin >> What is Oxycontin? I tried several different NSAID prior to starting pred, with no success. I'm told that 5 mg/day is a very low and safe dose? I know that I don't want my quality of life to go back to what it was before starting prednisone. My entire focus was my pain. I definitely don't want to go there again! Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 Trish, Oxycontin is a twelve hour time released pain medication that has narcotic in it. It is stronger than Lorcet Plus, or Hydroco/APAP 7.5/650 which last only four hours. Oxy keeps a little in your system so you don't have the wearing off and kicking back in of the 4 hour pain meds. Pred, for me, seemed to help hold the joints together better but offered no relief from the pain. I take an NSAID, Relafen @ 1000 mg every 12 hours along with 40mg of Oxy. then I take 25-30mg of methatrexate every Monday. I have been told that anyone on pred should take a supplement to prevent osteoarthritis. Anybody remember what? Was it the folic acid? I know the Doc gave me a folic acid prescription to go along with the methatrexate. I guess it depends on how much pain you have. I was taking the four hour stuff...2 pills every 4 hours and was in serious pain. It got to the point that the Oxy though costs more was justified cause you only take ONE every 12 hours. Thank goodness for prescription cards. At Walmart the Oxy was $245 for 60 and at Winn Dixie it was $209. Big difference but I pay $10, WHEW! The Doc can not write a refill as it is a class ?? drug and the Federal Government prohibits refills. Can't even phone it in. Have to have a written prescription. Luckily my local Doc is willing to write it on the months I don't go to the Rheumy or else he'd have to mail me a prescription every month. The local Doc does the blood work every month also since I'm on Methatrexate. I don't know why but if I don't take the pain meds I can't walk or lift up a glass of water. The PA is SLOWLY getting better. The bones are fine but the tendons are a mess. Pat B Wet, Eufaula, Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Bias wrote: > > Trish, > Oxycontin is a twelve hour time released pain medication that has > narcotic in it. It is stronger than Lorcet Plus, or Hydroco/APAP 7.5/650 > which last only four hours. Oxy keeps a little in your system so you > don't have the wearing off and kicking back in of the 4 hour pain meds. > Pred, for me, seemed to help hold the joints together better but offered > no relief from the pain. I take an NSAID, Relafen @ 1000 mg every 12 > hours along with 40mg of Oxy. then I take 25-30mg of methatrexate every > Monday. I have been told that anyone on pred should take a supplement to > prevent osteoarthritis. Anybody remember what? Was it the folic acid? I > know the Doc gave me a folic acid prescription to go along with the > methatrexate. I guess it depends on how much pain you have. I was taking > the four hour stuff...2 pills every 4 hours and was in serious pain. It > got to the point that the Oxy though costs more was justified cause you > only take ONE every 12 hours. Thank goodness for prescription cards. At > Walmart the Oxy was $245 for 60 and at Winn Dixie it was $209. Big > difference but I pay $10, WHEW! The Doc can not write a refill as it is > a class ?? drug and the Federal Government prohibits refills. Can't even > phone it in. Have to have a written prescription. Luckily my local Doc > is willing to write it on the months I don't go to the Rheumy or else > he'd have to mail me a prescription every month. The local Doc does the > blood work every month also since I'm on Methatrexate. I don't know why > but if I don't take the pain meds I can't walk or lift up a glass of > water. The PA is SLOWLY getting better. The bones are fine but the > tendons are a mess. > > Pat B > Wet, Eufaula, Alabama > > --------------------------------------------------------------- > > Subject: [ ] Re: MTX > Date: Mon, 1 Feb 1999 13:51:58 EST > From: MMSsmom@... > Reply- onelist > onelist > > From: MMSsmom@... > > In a message dated 1/30/99 10:39:47 AM Hawaiian Standard Time, PBias@... > writes: > > << Have you taken Oxycontin >> > > What is Oxycontin? I tried several different NSAID prior to starting pred, > with no success. I'm told that 5 mg/day is a very low and safe dose? I know > that I don't want my quality of life to go back to what it was before starting > prednisone. My entire focus was my pain. I definitely don't want to go there > again! > > Trish > > ------------------------------------------------------------------------> To unsubscribe from this mailing list, or to change your subscription > to digest, go to the ONElist web site, at and > select the User Center link from the menu bar on the left.Hi - the side effect of Prednisone is osteoporosis, that is thinning of the bones, leading to possible fractures. Calcium and milk products would be the supplement. Osteoarthritis is the wear and tear kind of arthritis, non-inflammatory. Also folic acid is used with methotrexate to prevent the mouth ulcers that sometimes occur with methotrexate. Lorna, Canada. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 In a message dated 2/4/99 1:45:03 PM Hawaiian Standard Time, PBias@... writes: << I have been told that anyone on pred should take a supplement to prevent osteoarthritis. Anybody remember what? Was it the folic acid? >> Yes, anyone on pred should take a calcium supplement. The folic acid is taken with the MTX to minimize side effects, i.e., mouth sores. The bones are fine but the tendons are a mess. Isn't that odd, who would have every thought that arthritis would affect your tendons? I have it in an ankle and a wrist as well. Oxycontin is a twelve hour time released pain medication that has narcotic in it. Is that common to take a narcotic for arthritis? Are you on it indefinitely? Trish Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 Trish, I was told that the tendons are a common problem for PA but you can't see that on an x-ray. It shows up on an MRI. The tedons are swollen and wriggly like a worn out rubber band. I don't know why but maybe the psoriasis that attacks the skin is doing the same attacking of the tendons??? sort of psoriasis on the tendons but can't be seen like psoriasis n the skin??? Pain med is for pain. If it takes that much med in able to walk and function then thats what it takes. Hopeully once the PA is under more control I will be able to decrease the pain med. I have been told this and am still waiting and waiting. You don't get 'high' as the med is doing it's job of trying to lessen the pain. When I finally don't need as much I have been old I'll start to 'feel good' and then will be able to cut back. Still, waiting and waiting. Hope you write often, Pat B Eufaula, Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 1999 Report Share Posted August 5, 1999 In a message dated 08/05/1999 9:38:40 PM Eastern Daylight Time, SAWalter@... writes: << Does the MTX relieve the pain enough to get back to a more normal life? >> Lee Ann..the MTX helped me a lot when I started it 6 years ago...but when I got several cases of URI during the years I sometimes had to come off the MTX to recover. Each time I not only saw a rapid and vicious return of the PA inflammation...but when I restarted the MTX it took weeks to kick back in and I needed a larger dose to get the same results. Right now it is working about half of what it did originally. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 In a message dated 8/5/99 6:38:27 PM Pacific Daylight Time, SAWalter@... writes: > > Does the MTX relieve the pain enough to get back to a more normal > life? We went out looking for houses last night. We really are > not in the best position financially to move yet. I thought > maybe we should give the medication a chance to work. Does it > help that much. I will still have the stairways to deal with. Does MTX help? 5 months ago I was confined to a chair or bed. My dose is at 15 mg injectable now, and 3 weeks ago I started to feel a whole lot better. Not 100%, but good enough to resume some of my former activities. I should be able to return to work in 1-2 weeks, am back in the gym 3 times a week, and have reduced my intake of narcotics dramatically. I'm hoping to be back in the air (I skydive) by Labor Day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 Hi Annette I have started out on 7.5 mg a week. I know that is a low dose. Did you (or anyone else) start that low and did you have to build up to a dose that works? I took my first dose on Monday. I did not feel too good the next day. I was a little sick to my stomach. It is funny how I feel great for a week or so and then I will start to run a fever and ache. I thought I was just picking up a bug or flu every couple of weeks. URI is a urinary tract infection? Is a URI common on this drug? Lee Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 On Fri, 6 Aug 1999 12:49:59 -0500, " Lee Ann Walter " <SAWalter@...> wrote: >From: " Lee Ann Walter " <SAWalter@...> > >Hi Annette >I have started out on 7.5 mg a week. I know that is a low dose. >Did you (or anyone else) start that low and did you have to build >up to a dose that works? I took my first dose on Monday. I did I started out at 7.5, I believe that is a pretty common starting point. I worked up to 17.5 per week, the doctor didn't want to go any higher than that orally. Then I added in Imuran, and I'm currently in remission. Took almost a year to get here though. Steve http://www.zoomnet.net/~steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 In a message dated 08/06/1999 5:07:52 PM Eastern Daylight Time, SAWalter@... writes: << Hi Annette I have started out on 7.5 mg a week. I know that is a low dose. Did you (or anyone else) start that low and did you have to build up to a dose that works? >> Lee Ann...I started on 17.5 mg of MTX because the inflammation was acute...SED rate was over 130. I have had many URIs over the last 6 years and have had to go off the MTX several times to recover from them..and each time it failed to work as well when I resumed treatment. For me, the nausea and infections are directly related to how well the MTX is working and controlling the inflammation and skin. It is a seesaw...with joint pain and psoriasis on one side and nausea and URIs on the other. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 yes, the MTX can help dramatically, but it is common that when you go off it to fight some nasty URI or other infection...it will often be less helpful when you resume treatment. Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 1999 Report Share Posted August 12, 1999 In a message dated 08/12/1999 9:29:05 PM Eastern Daylight Time, SAWalter@... writes: << Does it make any of the rest of you feel kind of goofy? >> I have not felt " goofy " just nauseous and ill...like I have been poisoned..and I have. As for building a tolerance...it is common for you to need a higher dose if you go off and then resume it. Any of these meds has the potential to just up and quit working...either completely or incrementally, at any time. Take note of the number of old timers at this who have gone from drug to drug...thats why. I hope you feel better, and I envy you the vacation... Annette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 My personal advice on taking the pills. Always take it on a full stomach, preferable after dinner, so you can sleep off much of the fatigue and unpleasant queasiness and vomiting that can happen. Prep yourself to take a Kytril or Zofran about an hour before your pills or shot of Metho-this will keep the puking at bay. Remember to take more if you need it after the shot or pills at the appropriate time interval on the directions of the prescription. Take Folic Acid six days of the week. Taking it on the day of your Methotrexate has been proven to lessen the impact of the Methotrexate. Folic Acid is called Methotrexate-Agonist- they kind of take away the power from one another. Taking the Metho during the week will keep anemia and mouth sores at bay. Some people take up to five mg a day, six days a week for that reason. Good Luck-and remember there is tons in the archives about Metho, Folic Acid etc... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 Well you have all impressed me with your bad experiences of MTX. I have so many drug reactions that I am very leery of all drugs unless I know for sure it doesnt bother me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 Well, I must admit I was a bit startled by all the mail asking me to stick around. I'm not sure you know what you're asking for, but I'll give it a shot. (maybe it was a day when I was just being too thin-skinned). I reckon I was upset at some things that were said. I didn't realize that folks really wanted to hear me expressing my doubts. I figured that I might be distracting folks from believing in what they are doing and I understand fully how important it is to feel that way. That said, I thank all of you who have asked me to stick around. Now as to 's sentiment below, how can you know for sure MTX will bother you until you try it? I don't think you can. I have no idea if it would bother me either - I doubt that any of us know this. And as I said to in a personal note, I think we have to remember that people who have had bad experiences with MTX tend to migrate towards other groups such as the AP here and are more prone to express their bad experiences. I find it unlikely that those who have experienced good effects from MTX are going to appear on this list (or if they did, would be unlikely to speak out) so I think we need to remember that these viewpoints, though entirely valid from the perspective of those who posted, are to some extent biased. Please understand me - I have no doubts that these individuals experienced these effects. However, If I was a guessing person, I would guess that a good majority of folks get relief from metho for a certain number of years (and again that probably varies with the individual). After all, there are some reasons that the majority of docs will prescribe it for RA over other drugs. I suspect they have found it works better than other things they have tried (leaving out the AP, of course). Most of the docs I speak to indicate that their patients are doing fine on this drug. Now, I am sure they have a few who are having side effects, but I gotta tell you, unless they're lying, their comments indicate that there are not a lot who experience serious side effects. Now, I don't think any medicines come without certain risks - how bad the risk is with metho probably depends on the person. And no, I'm not trying to minimize the risks of metho- as I read the pamphlet that comes with the prescription, it sure sounds spooky. On the other hand, I've had plenty of other drug handouts spell out horrible things too and yet I've never gotten any of those symptoms. So I guess in my usual long rambling way, I am trying to say that let's not get too spooked over all these medications to the point that we turn a totally deaf ear. We may all find ourselves up against the wall sometime and if we have developed this total fear in our minds of certain drugs, it may prevent us from taking something that we need to take for at least a short period of time. Well, I guess you can see that ol' cantankerous is back! Mark http://members.tripod.com/~Mark_Holmes RA 4/98 AP 7/98 Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine 400mg 3x/day;Zone Diet;acidopholus;Slippery Elm;Fish Oil(9 caps/day);Milk Thistle;bromelain;boswellia;glucosamine(1500mg) RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html ICQ 18123139 Re: rheumatic MTX > From: " SC " <sasc@...> > > Well you have all impressed me with your bad experiences of MTX. I have so > many drug reactions that I am very leery of all drugs unless I know for sure > it doesnt bother me. > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 Re: rheumatic MTX Hi Mark.............glad you reconsidered! Re. mtx - I did not have any adverse reactions to it (unless you count the very real emotional stress I experienced while on it); after 3 months I noticed a significant increase in pain - the rheumy's answer to this was to up the dosage and begin prednisone. The fact that I had to have a liver panel workup done every 3 weeks (with a liver biopsy in the wings if panel showed problems) told me that the complications are/can be very very real, and horrible. Convinced me that I didn't want to push my luck by increasing the dosage - and increasing the chances that it would do me harm. The doctor's description (only offered because I insisted) of side effects of mtx and prednisone could have sent anyone racing to the nearest exit! Anyway.....I've often wondered if I made the right decision. And, I think " yes " . It was my decision to make - no one else - and any consequences because of that decision is mine to deal with. I guess what I'm trying to say is that we all do what we think is best when we find ourselves " up against that wall " .......... your way most probably would not suit me, nor my way you. The biggie, I think, is respecting these differences of opinion... 'Nuff said.......be well, Well, I must admit I was a bit startled by all the mail asking me to stick around. I'm not sure you know what you're asking for, but I'll give it a shot. (maybe it was a day when I was just being too thin-skinned). I reckon I was upset at some things that were said. I didn't realize that folks really wanted to hear me expressing my doubts. I figured that I might be distracting folks from believing in what they are doing and I understand fully how important it is to feel that way. That said, I thank all of you who have asked me to stick around. Now as to 's sentiment below, how can you know for sure MTX will bother you until you try it? I don't think you can. I have no idea if it would bother me either - I doubt that any of us know this. And as I said to in a personal note, I think we have to remember that people who have had bad experiences with MTX tend to migrate towards other groups such as the AP here and are more prone to express their bad experiences. I find it unlikely that those who have experienced good effects from MTX are going to appear on this list (or if they did, would be unlikely to speak out) so I think we need to remember that these viewpoints, though entirely valid from the perspective of those who posted, are to some extent biased. Please understand me - I have no doubts that these individuals experienced these effects. However, If I was a guessing person, I would guess that a good majority of folks get relief from metho for a certain number of years (and again that probably varies with the individual). After all, there are some reasons that the majority of docs will prescribe it for RA over other drugs. I suspect they have found it works better than other things they have tried (leaving out the AP, of course). Most of the docs I speak to indicate that their patients are doing fine on this drug. Now, I am sure they have a few who are having side effects, but I gotta tell you, unless they're lying, their comments indicate that there are not a lot who experience serious side effects. Now, I don't think any medicines come without certain risks - how bad the risk is with metho probably depends on the person. And no, I'm not trying to minimize the risks of metho- as I read the pamphlet that comes with the prescription, it sure sounds spooky. On the other hand, I've had plenty of other drug handouts spell out horrible things too and yet I've never gotten any of those symptoms. So I guess in my usual long rambling way, I am trying to say that let's not get too spooked over all these medications to the point that we turn a totally deaf ear. We may all find ourselves up against the wall sometime and if we have developed this total fear in our minds of certain drugs, it may prevent us from taking something that we need to take for at least a short period of time. Well, I guess you can see that ol' cantankerous is back! Mark http://members.tripod.com/~Mark_Holmes RA 4/98 AP 7/98 Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine 400mg 3x/day;Zone Diet;acidopholus;Slippery Elm;Fish Oil(9 caps/day);Milk Thistle;bromelain;boswellia;glucosamine(1500mg) RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html ICQ 18123139 Re: rheumatic MTX > From: " SC " <sasc@...> > > Well you have all impressed me with your bad experiences of MTX. I have so > many drug reactions that I am very leery of all drugs unless I know for sure > it doesnt bother me. > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 Mark, I took mtx for several years along with plaquinil with no adverse side effects. They worked for awhile as is usually the case but then seemed to lose their effectiveness. I found the AP (two years ago) when I was looking for something new. I have elected to stay on the plaquinil (200mg twice a day) as I think it may still have some merit. With regular eye exams I don't think there is any real danger. I agree that we sometimes get paranoid about these meds. There are no absolutes in our situation especially when we remember that our docs no matter how great they are have only a license to " practice " medicine! The AP and supplements have turned my life around. Good luck. RA 9 years AP 2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 1999 Report Share Posted August 28, 1999 In a message dated 8/28/99 1:46:14 PM Eastern Daylight Time, MHOLMES@... writes: << I find it unlikely that those who have experienced good effects from MTX are going to appear on this list (or if they did, would be unlikely to speak out) >> Hi Mark, I believe I have made my comments about my experience with Mtx before you joined the group. Mtx was a very good drug for me for about 13 years. I had no side affects that were apparent or evident. (Course we all know about the hidden dangers and damage all drugs do to our bodies.) Labs were always in the normal range. Well, not always. A couple times my white count went down and then I just skipped a couple doses and it came back up. That was early on in the protocol. My hair has gotten thicker since being off. I didn't have alopecia or anything but now have a tad thicker rug on my head. The SGOT and SGPT (which I think are liver monitors, Dr. Chiu?) were alway low. Beginning Mtx in 1984 I was also on aspirin, 9-12 per day. Then because of H-Pylori in 1995 when DX was made I went on 5mg Prednisone. I had had stomach pain for years using Axid, Prilosec, Zantac etc. That's all, no other NSAID's. In 1997 new Doc put me on Relafen or Voltaren. Didn't help much. I worked up to 12.5mg Mtx per week. If I tried 15 the lethargy and exhaustion was unacceptable. Then I heard about the AP and decided this was something I wanted to do. I went through hell the first couple months but gradually picked up a bit. Now of course as you all know, I am very bad again. Joints involved that have never been involved in my 26 years with this cursed affliction. At the moment I am waiting for my new Doc to read the AP and other stuff I gave her. She is a DO and I am disappointed that she seems no different than the allopaths. Maybe she will change after reading the Protocol. That's my story. Yes, there were times, I had flares when on Mtx but a quick short one day pulse of Pred took care of it zippo. I do know this that if I felt as bad as I am now I would never have stayed on the Mtx as long as I did. Course what do I know, maybe it did more damage than I realized. By that I mean, perhaps I would be further along on the AP if I had never been on Mtx. I dunno. Nobody knows. I also know that I have a very strong immune system. I never get sick. People could be puking and coughing all around me and I don't catch it. Thank God for that. Now some might say, if my immune system is so strong why is it not killing the mycoplasmas? I dunno that either. Good luck everyone, Hugs, Anita RA 26 years, Fibro, AP 19 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 I'm glad you've decided to stay, Mark. As you have seen, you're a valued member of the group! Mark, you have to do what you feel is right for you. As I said when I wrote about my experiences with methotrexate, I can speak for my case only. Before I started the AP, and in fact, before I found a doctor who would prescribe it, I kept thinking that I believed it would help and that if I never tried it, I would never know and worse than that, I would never get the benefits of it. It was a chance of improving that was in my hands, and I just had to make sure I did it. Perhaps there is enough doubt in your mind now about the AP not working and metho possibly stopping the erosion, that you have to do it. The bottom line is that in the long run, you don't want to be in a position where you look back and think, " I should have done it! " . You have to follow your instincts. Besides, it seems you can do both if you want to. I posted this earlier, but you may have missed it. My rheumatologist who does a lot of research projects, is going to be doing a study on the effects of Didronel is slowing or stopping bone erosion. Didronel is a drug used in osteoporosis; it stops/slows down the osteoclasts from resorbing bone. He says it is the osteoclasts that resorb the bone in RA. Perhaps your doctors at the NIH would know something about this. If you want his name and number, please contact me. All the best with whatever you decide. Re: rheumatic MTX Well, I must admit I was a bit startled by all the mail asking me to stick around. I'm not sure you know what you're asking for, but I'll give it a shot. (maybe it was a day when I was just being too thin-skinned). I reckon I was upset at some things that were said. I didn't realize that folks really wanted to hear me expressing my doubts. I figured that I might be distracting folks from believing in what they are doing and I understand fully how important it is to feel that way. That said, I thank all of you who have asked me to stick around. Now as to 's sentiment below, how can you know for sure MTX will bother you until you try it? I don't think you can. I have no idea if it would bother me either - I doubt that any of us know this. And as I said to in a personal note, I think we have to remember that people who have had bad experiences with MTX tend to migrate towards other groups such as the AP here and are more prone to express their bad experiences. I find it unlikely that those who have experienced good effects from MTX are going to appear on this list (or if they did, would be unlikely to speak out) so I think we need to remember that these viewpoints, though entirely valid from the perspective of those who posted, are to some extent biased. Please understand me - I have no doubts that these individuals experienced these effects. However, If I was a guessing person, I would guess that a good majority of folks get relief from metho for a certain number of years (and again that probably varies with the individual). After all, there are some reasons that the majority of docs will prescribe it for RA over other drugs. I suspect they have found it works better than other things they have tried (leaving out the AP, of course). Most of the docs I speak to indicate that their patients are doing fine on this drug. Now, I am sure they have a few who are having side effects, but I gotta tell you, unless they're lying, their comments indicate that there are not a lot who experience serious side effects. Now, I don't think any medicines come without certain risks - how bad the risk is with metho probably depends on the person. And no, I'm not trying to minimize the risks of metho- as I read the pamphlet that comes with the prescription, it sure sounds spooky. On the other hand, I've had plenty of other drug handouts spell out horrible things too and yet I've never gotten any of those symptoms. So I guess in my usual long rambling way, I am trying to say that let's not get too spooked over all these medications to the point that we turn a totally deaf ear. We may all find ourselves up against the wall sometime and if we have developed this total fear in our minds of certain drugs, it may prevent us from taking something that we need to take for at least a short period of time. Well, I guess you can see that ol' cantankerous is back! Mark http://members.tripod.com/~Mark_Holmes RA 4/98 AP 7/98 Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine 400mg 3x/day;Zone Diet;acidopholus;Slippery Elm;Fish Oil(9 caps/day);Milk Thistle;bromelain;boswellia;glucosamine(1500mg) RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html ICQ 18123139 Re: rheumatic MTX > From: " SC " <sasc@...> > > Well you have all impressed me with your bad experiences of MTX. I have so > many drug reactions that I am very leery of all drugs unless I know for sure > it doesnt bother me. > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 Re: rheumatic MTX I posted this earlier, but you may have missed it. My rheumatologist who does a lot of research projects, is going to be doing a study on the effects of Didronel is slowing or stopping bone erosion. Didronel is a drug used in osteoporosis; it stops/slows down the osteoclasts from resorbing bone. He says it is the osteoclasts that resorb the bone in RA. Perhaps your doctors at the NIH would know something about this. If you want his name and number, please contact me. All the best with whatever you decide. - Thank you for reminding me of this. Yes, that would be good to have his number. And yes I will pass this along to the docs at the NIH to see what they know of it. Thanks again! Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 1999 Report Share Posted August 29, 1999 rheumatic MTX > From: " Kellis & O'Connor " <docsol@...> > > Mark, > I understood you to ask about experiences with mtx. So, those of us > who had a negative experience and responded are hysterical!! > It always seemed to me that you had doubts about AP as you have > brought this up over and over again. Only because I have gotten progressively worse - naturally I would have doubts. From the 4-6 month period of time, I thought it was kicking it, because I got dramatically better. Why I went downhill so fast this Spring, I don't know. And my docs certainly don't know. (although my NIH docs after having studied my synovial fluid and tissue samples, said I was destined to have a severe case of this disease based on how my tissue samples compared with others - the reason they worry about me so much) But your note only emphasises the fear I had when I wrote the first note, that I was afraid my doubts might make others worry about their beliefs and I didn't want to do that to anyone. You're validating that concern of mine. I didn't mean to imply that if you had a negative experience you were hysterical. In fact I stated that I had no doubts that you experienced these effects. Yet I also know that it works for many people, if even for a limited time (and a number of notes to me, both privately and publicly confirm that - and even my father has been on it for the last 4-5 months without problems). I'm not advocating it at all - something everyone seems to think I am doing. I bring it up because I am trending downward and I've done the AP for a year(even added Zithromax), been on varous herbals, MSM, drunk my water, changed my diet around 100%, gave up coffee,etc. And all my docs tell me, well, you should be trying the standard treatment (these are folks who spent hours with me talking about it and I felt their concern was genuine - these were not folks just blowing me some smoke) So, naturally, I wonder what the group thinks or what they've experienced. I want to improve and when I see folks like Franco and Trentham even using it, I think, hmmmm...., maybe there is a use for it. But I want to know real experiences and I want to know stats before I go down that path. > Why don't you take the mtx or whatever the NIH physicians are > recommending. Perhaps you won't have adverse reactions and it/they will > keep you going for awhile. > I get the impression that what you want is to hear from us that you > should take it. I say that based on your remarks regarding the > " hysteria " and your apparent anger. Perhaps I will - I am still collecting data and everyone who has written me I want to thank, as that has been especially helpful. I hope this group remains open - after all we are all in this to get better, not to hang on to a one particular philosophy over another (although it is all our hope that it is a virus that we can defeat permenantly with AP). I am certainly not angry - I am just about the most laid back person you will ever meet. I am a rather persistent ass at times - once I get a burr under my saddle, I don't want to rest till I've got that devil out! Hopefully you will pardon me this character flaw. I am sure it is annoying to some of you. > I can understand that. My life has been taken away, I live on my > electric bed, use the computer, read, watch tv, crochet. It sucks. My > body is destroyed. I am totally dependent on my husband and he resents > it and I feel it. I am bound by severe ecoomic constraints so my care > is basically myself and this group. Most days I am disappointed to wake > up alive. I want to rise and walk my wonderful Newfie, drive to places, > work at either one of my professions that I studied so hard for, and see > people. Amen - as do we all. Having been a very active person, I want nothing more to head for the woods with 40 lbs on my back and hike a thousand miles. And it grates on me that I can't do this and perhaps may never do this. My wife and I have 300 miles to go to finish the Appalachian Trail - 2100 miles of hiking. Every guest who comes to our Inn asks us when we're going to finish the trail. Do you know how hard that is to have to answer that question?I am only thankful that I am " laid back " as I stated before, so if I have to kick my feet up and be content with reading a good book and stroking the cat, then I will take those small pleasures as well, knowing that there are many who have suffered far worse than I have (Ethel, and thousands of others). So I know your pain as we all do - I am encouraged by the folks at the NIH who think that good things are coming down the pipeline, as I was equally encouraged by my conversation with a GP visiting our Inn the other day who implied the same thing - that good things were coming. Let us all hope that is true. > I don't wish this on anyone and I pray for all of us on this list. > I wish I could make it better for all of us. It is terrifying. > > NC Amen - it truly is, but though I am a worrier, in some crazy way, I am an optimist as well and somewhere ,somehow, we are all going to (in our own way) kick this damn stuff to kingdom come. http://members.tripod.com/~Mark_Holmes RA 4/98 AP 7/98 Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 500mg T,Sa; Lodine 400mg 3x/day;Zone Diet;;Slippery Elm;Fish Oil(9 caps/day);Milk Thistle;bromelain;boswellia;glucosamine(1500mg) RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html ICQ 18123139 Quote Link to comment Share on other sites More sharing options...
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