Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Amy, Congratulations to your husband, you must be very proud of him! I hope when you said that you stopped your prednisone for three days that this was part of a weaning schedule you were using and just didn't decide to stop the drug all together. It's a nasty drug and one that must be used carefully. Marilyn mhogg69@... ----Original Message Follows---- From: DOGEJA@... Reply-Stillsdisease Stillsdisease Subject: Good News!! Date: Thu, 22 Aug 2002 15:36:53 EDT I just wanted to share with one and all that my husband made the E-7 board. He is now a senior NCO in the Army. Sgt. First Class. I am very proud of him. An update of my Stills... I tried to go three days with no pred. I didn't last... I am back to taking 5 mg a day and feel oh so much better. I didn't think 5 little mg would make any differance but I guess it does. Amy _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Dear Amy & Husband, Congratulations to both of you!! What wonderful news. It's always so nice to hear something very wonderful. If possible...both of you go out and celebrate. Amy, just be careful with your prednisone. Everyone is different, but it is a hard drug to stop cold turkey. I hope that you are feeling better soon friend. Love, Sue #2 -- Good News!! Date: Thu, 22 Aug 2002 15:36:53 EDT I just wanted to share with one and all that my husband made the E-7 board. He is now a senior NCO in the Army. Sgt. First Class. I am very proud of him. An update of my Stills... I tried to go three days with no pred. I didn't last... I am back to taking 5 mg a day and feel oh so much better. I didn't think 5 little mg would make any differance but I guess it does. Amy _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 Dear Amy, That is Wonderful News, Congradts! I hope that you didn't stop the Prednisone on your own. This med must be stopped very slowly especially the lower the amount your on. I don't mean to preach I am just concerned. Thanks For The Wonderful News. You Made My Day! Sorry I am behind in my emails. I am trying to catch up today. Love, jatw@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 Hi Amy, Great to hear the news regarding your husband, its wonderful. Apologies for the delay but I have been on holiday and only got back yesterday whereby I have done nothing but wash and tumble dry 11 loads of clothes!!! So this is the first time I have been on-line for a few weeks. Take care a, Oliver and the clan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Ruth, how long have you been on the prednisone? I started at 35 or 40...not sure, and have tapered to 5 mg now. It has been at 5 mg for about 9 months now. Hopefully, I can get down. But this has been going since July of 01...now we are September of 02. I see the doctor next month. But I have begun Plaquenil now. THe Rheumatologist gave me the meds for pain. He said that it helps with the joints that are affected by Lupus and Rheumatoid Arthritis. However, he has not dx me with those yet. However, the meds seem to be making a difference for me at least in sleeping. I can sleep all night long! THe first time in years and years! So what I am wonderinf,,,can you take something for the pain stiffness too? Just wondering. Debby [ ] Good News!! Hi everyone, I just wanted to share some good news. I had normal LFTS after finishing my tapering on predisone so the doctor said I get to be off predisone for a couple of months and than they will recheck me. Today was the last day, I took my last 2.5 mg dosage, so starting with 50 mg and ending with 2.5. I am so thrilled I get off predisone for two months, what a blessing!! I was wondering if anyone could tell me how long they had the joint pain when they tapered on predisone. Rhonda and I have been tapering and having a lot of joint pain. I also wondered how long it takes to get rid of the excess weight from the predisone, I am rather hoping to see it come off. I have never gained weight so rapidly in my life as I did with the predisone. By the way-Jerry thanks so much for the info on autoimmune cholangitis, I really appreciate your posts on all the great websites. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2002 Report Share Posted September 18, 2002 Debby, I started on 50 mg of predisone in March, when the doctor started tapering me, he dropped me to 40 mg from 50 in one day! That didn't feel so good. Than they dropped me from 40 mg to 35 mg, reducing it by 5 mg for each two weeks. When I got down to 5 mg they wanted me to stop and I asked them if I could go to 2.5 for two weeks and do it more slowly. I complained about how fast the tapering was going, this is where I would have rather had a hepatologist on the case. My new G.I. said they tapered me too fast. I am also taking 100 mg. of immuran. I thought about medicine for the joint pain but I am taking 20 plus pills a day as it is. I thought I would wait and see if the joint pain eases up after tapering. I have had joint pain before I started predisone but not as severe as this, I think the predisone probably is the reason. If the pain doesn't let up after another month I might ask my primary about Plaquenil. I am so glad you are getting some relief at least with the joint pain, you have had so much to deal with. Ruth > Ruth, how long have you been on the prednisone? I started at 35 or 40...not sure, and have tapered to 5 mg now. It has been at 5 mg for about 9 months now. Hopefully, I can get down. But this has been going since July of 01...now we are September of 02. I see the doctor next month. > > But I have begun Plaquenil now. THe Rheumatologist gave me the meds for pain. He said that it helps with the joints that are affected by Lupus and Rheumatoid Arthritis. However, he has not dx me with those yet. However, the meds seem to be making a difference for me at least in sleeping. I can sleep all night long! THe first time in years and years! So what I am wonderinf,,,can you take something for the pain stiffness too? Just wondering. > > Debby > [ ] Good News!! > > > Hi everyone, > I just wanted to share some good news. I had normal LFTS after > finishing my tapering on predisone so the doctor said I get to be off > predisone for a couple of months and than they will recheck me. > Today was the last day, I took my last 2.5 mg dosage, so starting > with 50 mg and ending with 2.5. I am so thrilled I get off predisone > for two months, what a blessing!! I was wondering if anyone could > tell me how long they had the joint pain when they tapered on > predisone. Rhonda and I have been tapering and having a lot of joint > pain. I also wondered how long it takes to get rid of the excess > weight from the predisone, I am rather hoping to see it come off. I > have never gained weight so rapidly in my life as I did with the > predisone. By the way-Jerry thanks so much for the info on autoimmune > cholangitis, I really appreciate your posts on all the great > websites. > Ruth > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Ruth... one of the reasons you take prednisone is to alleveiate inflammation which can cause pain in your joints... a damagd liver restricts your adrenal glands ability to make natural anti-inflammatories such as cortisol.... and corticosteroids such as prednisone take the place of the adrenals funcion.... weaning too fast from pred. can be painful as the adrenals are lazy and forget to start producing corisol since it had been done for them. I " m on 5 mgs and could probably go to 2.5 but haven't yet.. My joint pain has returned and I fight it with Advil but also have become accustome to it (pain) and don't notice it if I don't dwell on it... my biggest sorce of pain is my back and I may have to ask for a more potent painkiller some day but I really don't want any narcotics... mabe I'll give Ultram a try.. Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Ruth, Wonderful news.....we have our fingers crossed for you... Cheryl & Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Ruth.... great news on your reports! glad to hear it.. My doctors have told me that I would be on prednisone for the rest of my life (or 60 more yrs....whichever comes 1st ,,, I opted for the latter) keep the good news coming... Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Ruth I am so pleased for you. It is great just to know you might get off prednisone, but to actually be doing it is wonderful. Hope all goes well. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Good Morning Ruth ! I'm just delighted to hear your news. You always have been so a dear friend to me and your e-mails had a great impact in my walk with God. By the way, I welcome all the pounds that you might want to loose since my weight right know has become a major issue. God Bless You ! Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Hi , Just a mail to say congrats Ruth thats great news! I've just dropped 1mg so am now on 2mgs pred (and 2g Cellcept). I will be tapered by 1mg or 1/2mg at a time every few months until i (hopefully) come off it. Your have reduced so fast that is great for you! I started on 25mgs 2years ago and and am still tapering slowly... As for the weight I think it depend how active you are and what sort of metabolism you had pre pred, I think for some people it takes a few years to get back to pre pred proportions... I hope it is quicker for you! Jerry- My doc is surprised I had made it down to 3mgs with no flare up.. so I may be in the same boat as you.. although I don't fancy being on the pred for the rest of my life.. i'm only 23 now!! Best wishes all AIH dx aug 2000 London UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 Dear Tony, I wish so much I could give you my extra pounds and more to make you well. You are in my thoughts and prayers daily. We all love you dear friend and we are looking to the Father for a special touch for you. Tony, I am so glad I could somehow be of encouragement to you, that is a direct answer to prayer, and a great honor to be your friend. Isaiah 40:29-31: He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will run and not grow weary, they will walk and not be faint. rmeeks3230@... wrote: Good Morning Ruth !I'm just delighted to hear your news. You always have been so a dear friend to me and your e-mails had a great impact in my walk with God. By the way, I welcome all the pounds that you might want to loose since my weight right know has become a major issue. :)God Bless You !Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2002 Report Share Posted September 19, 2002 ... i certainly hope not either! I'm sure you know tho that each of us is different and each can only relate his/he own experience... thats what makes this group so educational. In my case I think its because I've already been transplanted and my docs don't want to take any chances. Jeez I don't want to be on it the rest of my life either and I'm almost 60, so what is that another 40 or 50 yrs.?. I'd kill myself to be 23 again or even 43' Your going to be just fine! love you ...jerry Hi , Just a mail to say congrats Ruth thats great news! I've just dropped 1mg so am now on 2mgs pred (and 2g Cellcept). I will be tapered by 1mg or 1/2mg at a time every few months until i (hopefully) come off it. Your have reduced so fast that is great for you! I started on 25mgs 2years ago and and am still tapering slowly... As for the weight I think it depend how active you are and what sort of metabolism you had pre pred, I think for some people it takes a few years to get back to pre pred proportions... I hope it is quicker for you! Jerry- My doc is surprised I had made it down to 3mgs with no flare up.. so I may be in the same boat as you.. although I don't fancy being on the pred for the rest of my life.. i'm only 23 now!! Best wishes all AIH dx aug 2000 London UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2004 Report Share Posted January 24, 2004 That's awesome. Get away from that scale. I had to hide mine. I was in awe of my muscles one morning and then I decided to step on the scale...and then proceeded to have a meltdown when it was up. It truly shouldn't matter... > Well, I'm almost done with week 2, challenge 2. It's gone > well...food had been 95% clean and according to plan, workouts as > well. Scale hasn't changed much - 1.4 lbs down - but I don't really > care about those numbers too much (not that I wouldn't like to see > them go down much faster lol!). But...and this is the exciting > part...I measured today. I'm down 11.75 inches total in just under > two weeks!! WOOT WOOT!!, as Kathi used to say (Kathi...are you still > out there? I miss your posts!) > > Just wanted to share my good news. Hope everyone is having a good > weekend! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 , That was how my hearing deteriorated. It kept fluctuating until there was little room and it remained consistent. There had been a question about why the fluctuation but no investigation. Now with the unimplanted ear I have been experiencing fluctuations in hearing for quite some and continues so. Good News!! > Hi everyone, > > I received good news from my CI audi today. She says I'm *definitely* a CI > candidate, but they need to conduct further testing for my left ear because > it has been fluctuating between a severe to profound loss and a profound > loss. My CI audi told me that regardless of this inconsistency, I'm still > considered a candidate -- they just need to understand the reason why this > inconsistency is taking place before they can proceed with surgery. > > I'm scheduled for another ABR next month and will have further hearing and > speech discrimination tests in August. > > My CI center will be sponsoring a picnic next week for CI recipients and > anyone interested in knowing more about CIs. I definitely plan to go and am > excited about the opportunity to talk to others about their CI experiences. > > As usual, I'll keep you all updated on how things progress. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi , Yes, it seems that all of my audiograms indicate a severe to profound loss -- with the exception of the audiogram conducted in April. I'm not sure why although I do have problems with feeling as though my left ear is " popping " (especially when the barometric pressure changes) so perhaps that's contributing to the inconsistent results. One thing is for sure...my CI center is being *very* thorough in their evaluation. <smile> I appreciate that because I want to know as much as possible about the cause of my hearing loss. So far, the only thing I know is that it was caused by prematurity. Hopefully, the upcoming tests will be able to provide more information about the cause as well as why my left ear is fluctuating and my right ear has become worse. When I e-mailed my CI audi to find out my current degree of hearing loss, she said it is severe to profound in both ears with the left ear being worse than the right. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi , One additional comment...After my initial hearing and speech tests, my CI audi said that she'd like to see me use a CI in my left ear and a HA in my right. I don't know if her opinion has changed since then, but perhaps the ABR and audiogram/speech tests I have done over the next two months will help determine which ear should be implanted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 lisa, is hearing loss in your family or just? you? > Re: Good News!! >Hi , >Yes, it seems that all of my audiograms indicate a severe to profound >loss -- with the exception of the audiogram conducted in April. I'm not sure >why although I do have problems with feeling as though my left ear is > " popping " (especially when the barometric pressure changes) so perhaps >that's contributing to the inconsistent results. >One thing is for sure...my CI center is being *very* thorough in their >evaluation. <smile> I appreciate that because I want to know as much >as possible about the cause of my hearing loss. So far, the only thing I >know is that it was caused by prematurity. >Hopefully, the upcoming tests will be able to provide more information about >the cause as well as why my left ear is fluctuating and my right ear has >become worse. >When I e-mailed my CI audi to find out my current degree of hearing loss, >she said it is severe to profound in both ears with the left ear being worse >than the right. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Hi Tina, I was adopted shortly after birth, so I don't know whether or not hearing loss was present in my family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 , That has been my experience with the fluctuating hearing, the intermittent popping sound, as if whatever is firing off the last of whatever it does, though I have not associated with any external conditions. Re: Good News!! > Hi , > > Yes, it seems that all of my audiograms indicate a severe to profound > loss -- with the exception of the audiogram conducted in April. I'm not sure > why although I do have problems with feeling as though my left ear is > " popping " (especially when the barometric pressure changes) so perhaps > that's contributing to the inconsistent results. > > One thing is for sure...my CI center is being *very* thorough in their > evaluation. <smile> I appreciate that because I want to know as much > as possible about the cause of my hearing loss. So far, the only thing I > know is that it was caused by prematurity. > > Hopefully, the upcoming tests will be able to provide more information about > the cause as well as why my left ear is fluctuating and my right ear has > become worse. > > When I e-mailed my CI audi to find out my current degree of hearing loss, > she said it is severe to profound in both ears with the left ear being worse > than the right. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Just want to confirm, is there any other conditions that produce popping sound beside eustachian tube dysfunction? Regards/ Jerome Re: Good News!! , That has been my experience with the fluctuating hearing, the intermittent popping sound, as if whatever is firing off the last of whatever it does, though I have not associated with any external conditions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Jerome, Someone on another list suggested that my CI audi may be looking for signs of Large Vestibular Aqueduct Syndrome/LVAS since (like AN) it is consistent with my neonatal history. My CI audi said that she was looking for more information about the presence of a " condition " but didn't specify what that was. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 , We're all here for you and rooting you on. Once you get past all the testing, I'm sure you'll be on your way to hearing with a CI. It just sounds as if they are making sure they check everything out and that is a good thing. Hang in there. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Alice, I completely agree! I'm glad my CI center is being so thorough in their evaluation. It's taking more time, but that's okay. (I've taken the fall semester off from school, so time constraints won't be a problem.) I'd rather have my CI team work at a slower pace to get as much information as possible instead of rushing through the process and making me feel like I'm in a whirlwind of confusion. When all is said and done, I will know that I've exhausted all means possible for better hearing. In the end, patience is always rewarded. Quote Link to comment Share on other sites More sharing options...
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