Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 I just have a couple of questions and I was hoping maybe someone can give me there input. 1.)what kind of meds are most of you on 2.)does anyone have any problems with there feet with this sickness The reason that I ask these question is that I am without a doctor right know, my old doctor just prescribes me meds. without seeing me, --wonderful world of insurance--and I am on pred. and metho. and I am still having alot of problems, maybe there is something else that another person is on that I can try.Second I have had alot of problems with my feet and NO doctor here knows what it is, they swell,go numb,and tingle,red splotes,lots of pain,but on the same note will gone completly normal somtimes.every doctor and hospital I have went to have never heard of RP beening in your feet but it is a constant battle with me,and never have been diagnosed with any other autoimmune sick.thank anyone for any info it is aprtated more than you know. brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 In a message dated 10/06/1999 10:08:04 AM Eastern Daylight Time, brandy303@... writes: << ctor right know, my old doctor just prescribes me meds. without seeing me, >> -Where do you live?? Very important to have a doc that knows about and/or is willing to learn about RP. Pete is on prednisone 7mgs a day and trying to come down,cyclosporin 100mg 2x a day, methotrexate 29 mg 1x per week,calcium with vitD , xanax 0,5mg 3x a day, maxide 25mg 1x a day,risperdal 1/2 mg 2x a day9he takes this for ringing in his ears since he lost his hearing),pepcid 20mg 2x a dayand zoloft 100mg a day but switching to trazadone because zoloft has made him more bloated(this of course would make one more depressed!!!!!!!!). Pete gets his lab work done every month and so far(18 months) has continued to be normal. If you have any questions aany of Pete's meds please feel free to ask.Take care Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 about the fet vasculitis is not uncommon with RP and I am not saying it is but it may be a factor in your problems. I am also on Pred and metho. and have some relief. I still have pain and aches but my ears haven't inflammed 5 times the normal size and my nose so far has stayed relativly normal in size. You need blood work every 4 weeks with metho and pred what is your doctor an idiot? Love and Gentle Hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Janet, Thank you so much for your info on my question. I live in Texas and evry doctor that I have seen here and we are talking at the very least 50, either have never heard of RP,heard of someone having it, or my own personal favrorite leave the room-after consltation- and look on internet or read somthing about it. I do not have insurance right know I an tring to get on disablity due to every job that I have had in the past 6 months has let me go due to having to leave early or going to the hospital and not asking me to return.=(This has really been a very difficult situation for me in the past year but I am trying my best to go through every day with my head up and hope for the best but I am getting very letdown with my situation. Thank you very much for the med. answers I want to call my doctor to let he know about these meds. so maybe I can try them. take care brandy p.s. I lost the hearing in my right ear last year and the ringing is driving me nuts doctors that I have seen have told me that it is normal thank you for letting me know there is a med. that will take that away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Angie Thank you for the info,YES my doctor is a complete fool. I do blame him for the loss of my hearing and other problems due to, when I called him to tell him somthing was wrong with me I can't quit throwing up, or walk-due to my equallibrium-he said it was a stomach virus and stay in bed, by the end of the week my hearing was gone and can not return. I do not have insurance right know that is why there is no blood work. brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Thank you for the reply, I am sorry that you have so many problems with your legs. But with this info I do not feel like I am crazy, the doctor make me feel like I am making this up. brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 , That is the sweetest thing that someone has ever ofter to me.Thank you, I am on pred. but my father helps me out, as much as he can and I have my meds. for right know but thank you so much--you are going to make me cry--(in a good way). I am sorry that you are going to have to dish out that much for your meds. it is a huge amount for med. but if it works it will be worth it.=)Also don't be sad for me empathys we are all in this great boat together and we all can relate. Again thank you! brandy lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 In a message dated 10/7/99 8:35:48 AM Central Daylight Time, dlbmo@... writes: << my legsdeveloped painful ulcers to the bone. ok now. it wasa reult of the pred. and chemo. i had to have >> , I have them also , ugly as all hell. They are geting better, it is a problem I have been battleing for over 4 years, I also get them on lower arms, I have " SEVERE " alergies, and I became very ill with the sores with the Metho, Arava and Immuran after being on the for over a month, I have two right now that I have had now for over 2 months and is not healing good, but we are getting better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 In a message dated 10/7/99 9:00:09 AM Central Daylight Time, brandy303@... writes: , I hate to ask this question, but I am, Do you have money to pay for medicine right now? and are you on Prednisone? I have open prescription for Pred and its paid 100% as much as I need, if you are on it, I can send all you need. I get 20 mg and 5 mg bottles, I don't mind, I know what it is like for you and I am so sad for you. I go today to pick up my Enbrel, my INS only pays for half, so I pay $560.00 a month, its going to kill us to pay it, but I am waiting on approval for disability also, I hated to do it but I have no other choices right now. P << I do not have insurance right know I a trying to get on disability due to every job that I have had in the past 6 months has let me go due to having to leave early or going to the hospital and not asking me to return.=(This has really been a very difficult situation for me in the >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 In a message dated 10/07/1999 9:59:55 AM Eastern Daylight Time, brandy303@... writes: << brandy p.s. I lost the hearing in my right ear last year and the ringing is driving me nuts doctors that I have seen have told me that it is normal thank you for letting me know there is a med. that will take that away. >> - Just remember everyone is different especially when it comes to the meds.I will look up Dr.Jane Buckner's e-mail and you can e-mail her your story she is in Seattle Wa and hopefully is doing research on RP. There is also I think Mayo Clinic in Scotsdale Arizona and they have a big Rheumatology Dept. Will get back to you later Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 i had terrible problms with my feetand legs. they got so big and painfulthati could not walk. my legsdeveloped painful ulcers to the bone. ok now. it wasa reult of the pred. and chemo. i had to have air presure boots that wen all the way up mylegs for 8 hoursa day Diuretics also helped. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 In a message dated 10/7/99 9:06:51 AM Central Daylight Time, brandy303@... writes: << I do not have insurance right know that is why there is no blood work. brandy >> Its stuff like this that makes me mad...where are the caring docs of the world when you need them.???? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 In a message dated 10/7/99 9:17:31 AM Central Daylight Time, brandy303@... writes: << I do not feel like I am crazy, the doctor make me feel like I am making this up. >> , Tell that darn doctor that you know your own body and if it ain't working right you know it better than him and pay attention and take care of the problem.... You have to be a little bit aggressive. Go for it. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 ><< I do not have insurance > right know that is why there is no blood work. > > brandy > >> >Its stuff like this that makes me mad...where are the caring docs of the >world when you need them.???? >Lu AMEN!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Lu, My trail with doctors is more depressing to me than having this sickness,it makes me feel like is there no one in this world , besides god that you can put your health in the hand of. I have had the worst luck in the world ,I have throw fits, I have called lawyers,nothing ever seems to work, so I put my faith in god that he will guide me to the right one when the time is right. I have been to over 50 doctors and so far they have done nothing but make matter worse for me.But every one pray for me that thing will change. lol brandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Hi everybody - this is (evnarz) and I've been reading all that responded to my e-mail last nite - what a relief to hear that others are at least expereincing same symptoms - its less scarier today now that I've found all of you :) My feet are the enemy right now - shared with RLR last nite that I feel like the RP is a huge army that deploys troops to different areas of my body fighting a damn good fight looking for new cartiledge to destroy and when they've done their job by god they start marching on to the next battleground - right now of course my feet. Does anyone else feel this way? Stupid, but gives me a sense of humor when I let myself get mad at the troops! Scariest thing by far is the esophogus thing that feels like a heart attack - does go away in 10 - 20 minutes -but it is the worst kind of pain. Does anyone else out there have to take prescription paid med? i can't live without it - and I don't mean from an addicition stand point - I found a wonder drug that is a slow release pain med and keeps me up and about almost all day - if anyone wants to talk about it email me. Lucky for any of you who don't have this much pain. Is anyone else in the NYC area? Also - can I hear from anybody who has successfully gotten Social Security Disablity - and anyone who has gotten permanantly denied? I am in the middle of my first appeal - I have hired lawyers - but WE SHOULD ALL SHARE INFO ABOUT THIS BECAUSE IT IS SO MUCH ABOUT DOING IT THE RIGHT WAY and if anyone else is like my family - we are broke, broke broke from me losing my income and having to have housekeeping help because of my inability to use my hands and feet on any regular basis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 In a message dated 10/9/1999 10:34:55 AM Pacific Daylight Time, Evnarz@... writes: << Social Security Disablity - and anyone who has gotten permanantly denied? >> is permanantly denied. She doesnt have enough points to collect any benefits. Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 In a message dated 10/8/1999 8:38:54 PM Pacific Daylight Time, Lu1953@... writes: << I do not feel like I am crazy, the doctor make me feel like I am making this up. >> , >> , I'm sorry to hear that you are having so many problems. You are so young. When your young doctor's tend to consider your age more than your problems. I don't know the statistics but I know that there have been a lot of young athletes who died of heart attacks because doctors didn't look at the whole picture, just their ages. Like Lu or Roy said, (don't remember which one told you) get down right belligerent w/them. Angies right about the performance you must perform. You must allow them to see your sickness as it is. It's very hard w/these diseases, because we can look so good, but feel like hell!! Excuse my French, but I'm disgusted w/the doctors. Give them HELL! Rene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 In a message dated 10/9/99 10:50:46 AM Central Daylight Time, brandy303@... writes: << I have been to over 50 doctors and so far they have done nothing but make matter worse for me.But every one pray for me that thing will change. lol brandy >> Well you got my prayers , Hang in there... and don't forget we are here for you..... Love, Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 where do you live again? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Hi I have disability and it took me three years to get it. I was denied, I put in for the reconsideration and denied again and the third time I went before the administrative law judge and was granted it. I won on the disabilities that occurred because of the RP not necessarily the RP itself. You have to have a good doctor backing up your claim and a lawyer that knows the ropes. but it is possible and probable to get it. What pain med are you on? Mine give out way too quick and yes I need the a lot of the time. Motrin just don't work anymore. and I have other pain meds but always end up with breakthrough pain. Something long acting would be great. There are about 70 people on this list and it is funny how different our symptoms are but yet how similar they are as well. I look at RP as a pac man game with pac man being the RP gobbling up my cartilage, I understand the need for humor in it believe me Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 In a message dated 10/09/1999 8:56:05 PM Eastern Daylight Time, RTI2264@... writes: << Have a question for you? Why did they reclassify you as Polychondritis? Waiting for your answer >> Rene Because my lab work is never normal and I am never asymptotic. There is always something going on somewhere in my body RP related so they lost the relapsing part of it. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Hi Angie - Thank god you finally got your disablity - that's encouraging - the pain med I take is Oxycontin - I am sooooo lucky that I have a pain management doc that listens to me and does whatever it takes to keep me out of pain. It took about a year to get to the right dose, but I have been on the same dosage now for two years and it works like a dream - I rarely have breakthrough pain on my regular day to day symptoms, but when something new comes up it just hurts like hell through the Oxycontin anyway - but at least all of the other things are being attended to with the Oxy - it made me a little sleepy at first, but it you have a good tolerance to pain medication, it should really help you out. You have to have an understanding doctor tho and not one who thinks you are a drug-seeker - those jerks - if they had 1/100th of the pain that we RP's suffer they would definetly be DRUG SEEKERS for anything they could get their hands on. If you want to talk to me more about this e-mail me or you can call me too ---- I LOOOOOOOVE THE PAC MAN THANG - keep on laughing - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 In a message dated 10/11/1999 2:19:57 AM Eastern Daylight Time, Evnarz@... writes: << about this e-mail me or you can call me too ---- I LOOOOOOOVE THE PAC MAN THANG - keep on laughing - >> -914 area code isn't that around Suffern, NY??? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 Arlington,Texas Quote Link to comment Share on other sites More sharing options...
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