Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 In a message dated 5/14/99 11:45:18 PM Eastern Daylight Time, cocka2@... writes: << Can any of you shed any light on what's going on with me and any advice about the Pred? I'm getting very discouraged!!! >> Hi Lee, I am in the same boat you are so I'm sorry I can't offer you any advice. I am on 4mg. down from 5 and am very stiff in the a.m. and stiff after I sit for awhile etc. I am swollen all over and new joints are being affected like my knees, elbows, and ankles. These had almost never been involved before. Like you, I am very discouraged. Fingers never lose their swelling all day. Can hardly roll over in bed at night and can no longer do my crawl stroke when swimming because of the shoulders. I hope and pray someone has some answers for you. Hugs, Anita RA 26 years, AP 15 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 i think you are going through what a lot of us are going through, or have gone through in the past. i had lowered my prednisone from 5 mg to 3 mg and could not take it. i gradually got worse and going back to 5 didnt help. i decided to take it to 10 for a week to get releif, then down to 7.5 until i stabilize. i am still struggling at the moment, but if there is one thing i learned on this therapy, it patience!! sometimes i like to push it too fast and it really gets me in trouble. this is gonna take some time and its important to take it slow. you may have to take the pred back up......you dont have to live with that much pain. i went through the shoulder pains too, for about 3 months. they are much better now.....a good sign. good luck....doubt i helped much....just hang in there...it will get better. dave ra-9 yrs.....ap-13 mo > In a message dated 5/14/99 11:45:18 PM Eastern Daylight Time, > cocka2@... writes: > > << Can any of you shed any light on what's going on > with me and any advice about the Pred? I'm getting very > discouraged!!! > >> > > Hi Lee, > > I am in the same boat you are so I'm sorry I can't offer you any advice. I > am on 4mg. down from 5 and am very stiff in the a.m. and stiff after I sit > for awhile etc. I am swollen all over and new joints are being affected like > my knees, elbows, and ankles. These had almost never been involved before. > > Like you, I am very discouraged. Fingers never lose their swelling all day. > Can hardly roll over in bed at night and can no longer do my crawl stroke > when swimming because of the shoulders. > > I hope and pray someone has some answers for you. > > Hugs, Anita > RA 26 years, AP 15 months > > ------------------------------------------------------------------------ > ONElist: bringing the world together. > > Join a new list today! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 HI Lee, My first awful herx on the doxi was in the archilles tendons. I was put out of work for three weeks because I couldn't walk, but a podiatrist gave me a slant board to stretch on and it worked wonders. I was back to work in a week. Next is was my shoulders. They were so bad I cried and couldn't lift them. Then my feet. THen my knees locked up. I couldn't use my right hand in the mornings due to so many fingers being stiff and swollen.I didn't know how long I was going to be walking or even functioning. It was horrible as I had never felt like this in the entire duration of the disease. I was like you and my enegy didn't wane with the doxi herx. Since seeing Dr. Franco in April it has been like a miracle in the past month. He changed my meds and supplements. Life is almost back to normal. There are days that I don't even feel any pain except in my knees. I have gone from almost 20 joints hurting to less than 4 ( and these aren't too bad). The morning stiffness has greatly been reduced. I also have cut back from 5mg of pred to 4 mg and haven't noticed any changes in pain or stiffness. Will be going for 3 mg in several weeks. Less than 2 months ago, I was unable to hardly walk. I couldn't even dress myself as I couldn't lift my arms or use my hands to snap or button. I started doxi in Sept 98 and I was in a herx until April that I thought I wouldn't survive. What meds and supps are you on ? I will be glad to share with you with what I am taking. Hang in there. I thought I would' never see the light at the end of the tunnel and I do believe it is here. wrote: >From: Lee Tanner <cocka2@...> > >I've been on AP for 7 months now and have reduced my >Prednisone to 7mgs.from 10mgs. All was going fine until >about 3 weeks ago when my Achilies tendons became very >painful. I'vexwalked with a limp for several weeks due to >the pain. This week my shoulder joints have gotten very >painful also. Tylenol doesn't do much good. I increased >the Pred to 8 mgs yesterday and today but I don't feel any >pain relief. I haven't felt this bad in a long long time! >Usually herxs make me very tired but my energy level is >still very good these past weeks. So I don't think this is >a herx unless it's one without the usual drop in energy. I >don't know what to do. Especially I don't know what to do >about the Pred. I'm tempted to go to 10mgs but it took so >long to get down to 7mgs I hate to go back up. Also, it use >to be that I was stiff in the a.m. and by about 1:00 p.m. I >was a lot better. Then by evening I was in pretty good >shape. Over the past 3 weeks I don't improve as the day >goes on. Even the swelling in my hands doesn't go down like >it use to. Can any of you shed any light on what's going on >with me and any advice about the Pred? I'm getting very >discouraged!!! > > >------------------------------------------------------------------------ >Congratulations to " Trail Rider, " our latest ONElist of the Week. >http://www.ONElist.com >Visit our homepage and share with us how ONElist is changing YOUR life! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Hi Lee, I know your feeling well. But I think Dave is right we do have to be patient. In Dr. Brown's book " The Road Back " , I can not recall any cases that the improvement was rapid. But he sure did have success. I get very discouraged myself and feel like I may have made the wrong choice with this treatment, then you get into this group and start reading and realize that it was really the only choice. I have the swelling and soreness and stiffness almost continually in my knees, ankles, fingers and wrists and I think that I have 4 nodules started on my hands. I also have it in the neck, shoulders and upper arms some days. But I am better than I was a couple of years ago, while on conventional killers. I had 4 great days this past week, and then the last 4 have been real hellers. Now I am hoping and looking forward to the next good spell. Just hang in there and don't give up. We are all pulling for you. Skippy RA 10 years AP 9 mos. Denny OA 2 years AP 6 mos. rheumatic Need Advice >From: Lee Tanner <cocka2@...> > >I've been on AP for 7 months now and have reduced my >Prednisone to 7mgs.from 10mgs. All was going fine until >about 3 weeks ago when my Achilies tendons became very >painful. I'vexwalked with a limp for several weeks due to >the pain. This week my shoulder joints have gotten very >painful also. Tylenol doesn't do much good. I increased >the Pred to 8 mgs yesterday and today but I don't feel any >pain relief. I haven't felt this bad in a long long time! >Usually herxs make me very tired but my energy level is >still very good these past weeks. So I don't think this is >a herx unless it's one without the usual drop in energy. I >don't know what to do. Especially I don't know what to do >about the Pred. I'm tempted to go to 10mgs but it took so >long to get down to 7mgs I hate to go back up. Also, it use >to be that I was stiff in the a.m. and by about 1:00 p.m. I >was a lot better. Then by evening I was in pretty good >shape. Over the past 3 weeks I don't improve as the day >goes on. Even the swelling in my hands doesn't go down like >it use to. Can any of you shed any light on what's going on >with me and any advice about the Pred? I'm getting very >discouraged!!! > > >------------------------------------------------------------------------ >Congratulations to " Trail Rider, " our latest ONElist of the Week. >http://www.ONElist.com >Visit our homepage and share with us how ONElist is changing YOUR life! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 1999 Report Share Posted May 19, 1999 You seem to be having a flare which is entirely normal. These flares decrease in intensity and occur farther apart as AP therapy progresses until remission is reached. With all the antibiotics you are taking, there is a very good possibility the intestinal flora is out of balance even if you have been taking acidophilus. This problem can stop your progress on the AP. I don't like using anti-fungals for candida. We have several people reporting good results using olive leaf extract. If you try it be sure you get one that is strong enough. Check out http://www.eastparkresearch.com. Their product is 38% oleuropein content. You could also try lowering the antibiotic dosage until the flare subsides rather than increasing the prednisone. I would also suggest you check out section 11 of the FAQ for ideas of things to check. http://www.rheumatic.org/faq.htm Have you tried the peroxide baths to release the toxins? Be sure you drink looooots of water and have proper elimination to move those toxins out. Massage is also good. Ethel Lee Tanner wrote: > > 200 mgs Minocin MWF (100mgs in a.m. and 100 mgs. in p.m.) and 250 mgs > Zithromax Tues and Sat. > > Snooks wrote: > > > What antibiotic dosage are you on? > > > > Ethel > > > > Lee Tanner wrote: > > > > > > From: Lee Tanner <cocka2@...> > > > > > > I've been on AP for 7 months now and have reduced my > > > Prednisone to 7mgs.from 10mgs. All was going fine until > > > about 3 weeks ago when my Achilies tendons became very > > > painful. I'vexwalked with a limp for several weeks due to > > > the pain. This week my shoulder joints have gotten very > > > painful also. Tylenol doesn't do much good. I increased > > > the Pred to 8 mgs yesterday and today but I don't feel any > > > pain relief. I haven't felt this bad in a long long time! > > > Usually herxs make me very tired but my energy level is > > > still very good these past weeks. So I don't think this is > > > a herx unless it's one without the usual drop in energy. I > > > don't know what to do. Especially I don't know what to do > > > about the Pred. I'm tempted to go to 10mgs but it took so > > > long to get down to 7mgs I hate to go back up. Also, it use > > > to be that I was stiff in the a.m. and by about 1:00 p.m. I > > > was a lot better. Then by evening I was in pretty good > > > shape. Over the past 3 weeks I don't improve as the day > > > goes on. Even the swelling in my hands doesn't go down like > > > it use to. Can any of you shed any light on what's going on > > > with me and any advice about the Pred? I'm getting very > > > discouraged!!! > > > > > > ------------------------------------------------------------------------ > > > Congratulations to " Trail Rider, " our latest ONElist of the Week. > > > http://www.ONElist.com > > > Visit our homepage and share with us how ONElist is changing YOUR life! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Hi there, I have been like this for three years.......The dreams for me comes when i take painkillers to close to bed time. I am still waiting for relief....My mind is going crazy....... hugs, Corinne along302003 wrote: > Hi guys > > I could use some help I told you guys a couple of weeks ago about the > fatique and achiness. Well this is still going on. but I am also > having trouble sleeping at night I am having dreams of me progressing > to the point I cann't hardly move. Is this normal to be having dreams > like this or should I talk to the doctor. Also the doctor said he > would up my medicine anytime I told him I need it I am wondering if > I should do that to help with the pain adn everything. Thanks for any > help I have to go now talk with you later > > Thanks > Angie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Angie, I too have pain and fatigue daily and now dread going to sleep because I am in pain there as well. I don't know, but I guess it is just this terrible disease. I would talk to your doctor and see if there is some other type of medication you could try or he could increase the doses of the meds you are already on. Hang in there, I hope you are feeling better soon. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Angie, It is normal to worry about RA progressing, especially when you know there is a chance that it could. I would think that this worry is interfering with your sleep. Worry causes stress and stress causes the disease to flare. Have you read anything about meditation or relaxation techniques? When I can't shut my mind off at night, I take my mind to the beach and listen to the sounds of the waves and I can even " smell " the salt air. Is there anything that you can think about that could help you to concentrate on pleasant things? They sell CD's that have all kinds of relaxing sounds. If you can get good sleep at night, maybe it would help the fatigue. If I don't sleep well, I'm more tired than normal the entire day. Fatigue is part of my life that I've learned to live with, but there are things you can do to help with fatigue. Getting a good night sleep and reducing stress were the most important things for me. If your disease isn't under control, your meds may have to be increased. Are you on pain meds? a On May 16, 2005, at 5:57 AM, along302003 wrote: > Hi guys > > I could use some help I told you guys a couple of weeks ago about the > fatique and achiness. Well this is still going on. but I am also > having trouble sleeping at night I am having dreams of me progressing > to the point I cann't hardly move. Is this normal to be having dreams > like this or should I talk to the doctor. Also the doctor said he > would up my medicine anytime I told him I need it  I am wondering if > I should do that to help with the pain adn everything. Thanks for any > help I have to go now talk with you later > > Thanks > Angie > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 So sorry that you are still having such a terrible time, Angie. Please call your physician! Tell him everything you told us. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] need advice > Hi guys > > I could use some help I told you guys a couple of weeks ago about the > fatique and achiness. Well this is still going on. but I am also > having trouble sleeping at night I am having dreams of me progressing > to the point I cann't hardly move. Is this normal to be having dreams > like this or should I talk to the doctor. Also the doctor said he > would up my medicine anytime I told him I need it I am wondering if > I should do that to help with the pain adn everything. Thanks for any > help I have to go now talk with you later > > Thanks > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2008 Report Share Posted February 27, 2008 I was exposed to toxic mold at work and home for over a six months, a year ago, never did get on disability. Then this past Christmas, I was re-exposed for a few days. And I've been having health issues ever since, in particular; heart palpitations, memory and a hyper-sensitive to a varied of airborne allergens. By the end of January, it reached to such an extreme that my system just flipped, it changed. I was numb for a couple of days then most to all my symptoms had gone away. In those days I started on heavy vitamins, doubling Echinacea. I ran out Echinacea a few days ago and didn't replace right away. I realized yesterday I'm having the same extreme reactions as before, including memory problems. My reactions are now transitory responses. Needless to say I'm back to doubling up. I know the air ducts at my job are affecting me, which is in a large building. I feel I need to tell my boss before she decides to fire me. Does anyone have any suggestions as to how? without sounding like an idiot. How do I begin to approach the Chase building I work in? I work for a non profit located on the second floor. In my experience most doctors don't really understand or believe in all of the affects of toxic mold exposure. Quote Link to comment Share on other sites More sharing options...
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