Guest guest Posted October 18, 2001 Report Share Posted October 18, 2001 If anything, the high triglycerides should make you *more* of a candidate for the DS, not less. ~alyssa, who also has high TG... Test results > Today saw my doctor to go over results of tests I am taking pre-op. Two > things were worrisome: > > 1. Triglycerides. He said there was so much fat in my blood that they > could not check my cholesterol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2001 Report Share Posted October 19, 2001 Hi , I was told that you have to stay on lipitor forever even if you count is really low as the cholesterol is still there just stuck to the sides of the veins and when you go off lipitor it can flake off any time and whamo!! heart attack.Is this what any of you have been told? Lorri Re: Test results > At 1:54 AM -0700 10/18/01, Gold-Dust wrote: > >Today saw my doctor to go over results of tests I am taking pre-op. Two > >things were worrisome: > > > >1. Triglycerides. He said there was so much fat in my blood that they > >could not check my cholesterol. > > > >2. Kidney function is down. He said this could possibly be from > >dehydration, and is sending me to take the test again next week. Naturally, > >I will be drinking up a storm. > > > >My question: Could either of these things disincline a surgeon from doing > >the surgery? > > Probably not. > > > >Do these problems make me not a good candidate? > > In fact, the triglyceride elevation makes you an ideal candidate. > Before I started on Lipitor (pre-op), my total cholesterol had jumped > from about 230 to 289. After three months on Lipitor, it had dropped > to 188. Then came the DS, and three months post-op, still on > Lipitor, my total cholesterol dropped to 114 !!! Triglycerides were > 128. > > Total Cholesterol = 114 > HDL = 30 (nominally low, but still >25% of total cholesterol) > LDL = 58 > Triglycerides = 128 > > I have been off Lipitor for almost three months, and I had my > bloodwork last Monday, but have not received the lipid panel results > yet. I have been eating lots of meat and have been using butter for > the first time in decades, so we shall see how well the fat > malabsorption works for me. My expectation is that the results will > be fine, even without the Lipitor. Assuming that they will be fine, > the DS sure is a boon for hyperlipidemic patients. > > > My surgery is > >presently scheduled for November 29th, with all test results due no later > >than Nov. 15th. > > > > Good luck! > > --Steve > -- > Steve Goldstein, age 61 > Lap BPD/DS on May 2, 2001 > Dr. Elariny, INOVA Fairfax Hospital, Virginia > Starting (05/02/01) BMI = 51 > BMI on 10/18 = 40 (-73 lb.) > Losing more slowly than most, but enjoying renewed health and life in general. > > ---------------------------------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Beth Makes my job so much easier when you go on and publish my response for me with your post. PFT's are just such an inexact science. I was also recently told that DLCO is the worst in terms of different and inconsistent readings. > > > > Hi everyone, > > Well everything is fine I didn't get precisely the results I expected. My ct scan shows some mild progression and oddly my pft, specifically my FVC and my DLCO are somewhat lower than the last time I had them done in June. Nothing horrible, just not as good as I assumed based on how I've been feeling. > > Now I know that Bruce is going to respond that the numbers and the ct scan are useful and all but what really matters is how I've been feeling and I'm feeling good. This is absolutely positively true and so I'm not going to let this get to me. Tomorrow I go back to rehab and I will move forward. > > Dr. on is going to consult with my rheumatologist and we will probably increase the Imuran from 100mg to 150mg for awhile. > > So that's the story. All is well, just not as well as I would like it to be. > > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Beth, You are STABLE...you feel OK, you are going to a demanding rehab!!!! Numbers don't tell the entire story!!! You are upset about the numbers...so be it! Just remember that you do feel better than the numbers!!! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Beth wrote: Hi everyone, Well everything is fine I didn't get precisely the results I expected. My ct scan shows some mild progression and oddly my pft, specifically my FVC and my DLCO are somewhat lower than the last time I had them done in June. Nothing horrible, just not as good as I assumed based on how I've been feeling. Now I know that Bruce is going to respond that the numbers and the ct scan are useful and all but what really matters is how I've been feeling and I'm feeling good. This is absolutely positively true and so I'm not going to let this get to me. Tomorrow I go back to rehab and I will move forward. Dr. on is going to consult with my rheumatologist and we will probably increase the Imuran from 100mg to 150mg for awhile. So that's the story. All is well, just not as well as I would like it to be. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Thanks . Like I said, I'm not letting this upset me. They are just numbers and we have to look at them in perspective. They are just a piece of the "big picture". And my big picture is that I'm pretty high functioning for someone with 40% of her lungs that work properly, right? Thanks for the support. I appreciate it! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, September 21, 2009 8:57:58 PMSubject: Re: Test results Beth, You are STABLE...you feel OK,you are going to a demanding rehab!!!!Numbers don't tell the entire story!!!You are upset about the numbers...so be it!Just remember that you do feel better than the numbers!!! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Beth wrote: Hi everyone, Well everything is fine I didn't get precisely the results I expected. My ct scan shows some mild progression and oddly my pft, specifically my FVC and my DLCO are somewhat lower than the last time I had them done in June. Nothing horrible, just not as good as I assumed based on how I've been feeling. Now I know that Bruce is going to respond that the numbers and the ct scan are useful and all but what really matters is how I've been feeling and I'm feeling good. This is absolutely positively true and so I'm not going to let this get to me. Tomorrow I go back to rehab and I will move forward. Dr. on is going to consult with my rheumatologist and we will probably increase the Imuran from 100mg to 150mg for awhile. So that's the story. All is well, just not as well as I would like it to be. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2009 Report Share Posted September 21, 2009 Thanks Bruce! We've had this discussion so many times, I just could hear your voice in my head. Scary huh? LOL Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, September 21, 2009 8:54:57 PMSubject: Re: Test results BethMakes my job so much easier when you go on and publish my response forme with your post. PFT's are just such an inexact science. I was alsorecently told that DLCO is the worst in terms of different andinconsistent readings.> >> > Hi everyone,> > Well everything is fine I didn't get precisely the results Iexpected. My ct scan shows some mild progression and oddly my pft,specifically my FVC and my DLCO are somewhat lower than the last time Ihad them done in June. Nothing horrible, just not as good as I assumedbased on how I've been feeling.> > Now I know that Bruce is going to respond that the numbers and thect scan are useful and all but what really matters is how I've beenfeeling and I'm feeling good. This is absolutely positively true and soI'm not going to let this get to me. Tomorrow I go back to rehab and Iwill move forward.> > Dr. on is going to consult with my rheumatologist and we willprobably increase the Imuran from 100mg to 150mg for awhile.> > So that's the story. All is well, just not as well as I would likeit to be.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 Hi Jane...Just want to say hello. I'm not on the board as much as before we moved but try and say hi to those posts I see. You are taking good care of yourself that's for sure. Keep on keepin' on friend. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Test results Beth, How was the weather in your area today? Was it raining? (It has really rained here in Georgia) Whenever I had PFTs and the weather was really yucky & raining, my numbers were always lower. Wait until you have the tests again to determine where you are. I am sure you are just where you were. DLCO can go up & down. Mine has been gradually going up, but Dr. thought that it was because I had just learned how to do the test. I also wanted to say to some of the newbies that my first pulmodude wanted me to walk slow and not do anything. I can assure that I did not follow his advice. I also went to Handbell practice this afternoon. Two people were already there the director and one other). They are amazed that I go out and about when there is so much sickness going around. Little do they know that I am very choosy as to where I go. And what I do. Besides constant handwashing, I have added gargling with salt water twice a day and blowing my nose very well and using the neti pot or some salt water in the nose. It has cut down on the amount of sinus drainage that is always present. I got the idea for the salt water from a note that brought home from the day care where she works. Another biggie on that note was this: Do not drink out of public water fountains. I also carry my masks around if I need to use them. And staying out of crowds. Sometimes my exercise class is crowded so I try to go at a different time when those people are finished. And I constantly wash my hands while I am there. I didn't meet to get carried away on writing all of this. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Hi everyone,> Well everything is fine I didn't get precisely the results I expected. My ct scan shows some mild progression and oddly my pft, specifically my FVC and my DLCO are somewhat lower than the last time I had them done in June. Nothing horrible, just not as good as I assumed based on how I've been feeling.> Now I know that Bruce is going to respond that the numbers and the ct scan are useful and all but what really matters is how I've been feeling and I'm feeling good. This is absolutely positively true and so I'm not going to let this get to me. Tomorrow I go back to rehab and I will move forward.> Dr. on is going to consult with my rheumatologist and we will probably increase the Imuran from 100mg to 150mg for awhile. > So that's the story. All is well, just not as well as I would like it to be. > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 MB... sorry the results were disappointing...keep on keeping' on gal! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Test results MB, Can I start by telling you I love you and I HATE THIS DISEASE.. I know how disappointed you are in the results but look at what you are doing--ROAD RUNNER, EXERCISE GIANT, DEAR SWEET MONITOR OF A BUNCH OF SICKIES WITHOUT COMPLAINT I MIGHT ADD.. I love you and we are ALL here for you. Your the best. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi everyone, Well everything is fine I didn't get precisely the results I expected. My ct scan shows some mild progression and oddly my pft, specifically my FVC and my DLCO are somewhat lower than the last time I had them done in June. Nothing horrible, just not as good as I assumed based on how I've been feeling. Now I know that Bruce is going to respond that the numbers and the ct scan are useful and all but what really matters is how I've been feeling and I'm feeling good. This is absolutely positively true and so I'm not going to let this get to me. Tomorrow I go back to rehab and I will move forward. Dr. on is going to consult with my rheumatologist and we will probably increase the Imuran from 100mg to 150mg for awhile. So that's the story. All is well, just not as well as I would like it to be. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 Safeway has it here.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Test resultsTo: Breathe-Support Date: Tuesday, September 22, 2009, 7:03 AM Pink Kroger here now has clorox wipes just inside the entrance for wiping the cart handles. I was curious as to whether that is a practice in other areas or by other grocers. > > > > Hi everyone, > > Well everything is fine I didn't get precisely the results I expected. My ct scan shows some mild progression and oddly my pft, specifically my FVC and my DLCO are somewhat lower than the last time I had them done in June. Nothing horrible, just not as good as I assumed based on how I've been feeling. > > Now I know that Bruce is going to respond that the numbers and the ct scan are useful and all but what really matters is how I've been feeling and I'm feeling good. This is absolutely positively true and so I'm not going to let this get to me. Tomorrow I go back to rehab and I will move forward. > > Dr. on is going to consult with my rheumatologist and we will probably increase the Imuran from 100mg to 150mg for awhile. > > So that's the story. All is well, just not as well as I would like it to be. > > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 Hi Bruce, hope you're having a good day! Yes, the wipes are in most of the stores here.... MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Test results PinkKroger here now has clorox wipes just inside the entrance for wiping thecart handles. I was curious as to whether that is a practice in otherareas or by other grocers.> >> > Hi everyone,> > Well everything is fine I didn't get precisely the results Iexpected. My ct scan shows some mild progression and oddly my pft,specifically my FVC and my DLCO are somewhat lower than the last time Ihad them done in June. Nothing horrible, just not as good as I assumedbased on how I've been feeling.> > Now I know that Bruce is going to respond that the numbers and thect scan are useful and all but what really matters is how I've beenfeeling and I'm feeling good. This is absolutely positively true and soI'm not going to let this get to me. Tomorrow I go back to rehab and Iwill move forward.> > Dr. on is going to consult with my rheumatologist and we willprobably increase the Imuran from 100mg to 150mg for awhile.> > So that's the story. All is well, just not as well as I would likeit to be.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 Sher I'm having a good day now that I see your posts. Hope the joint pain leaves soon after the Cipro although if that was the cause it can take some time. > > > > > > Hi everyone, > > > Well everything is fine I didn't get precisely the results I > expected. My ct scan shows some mild progression and oddly my pft, > specifically my FVC and my DLCO are somewhat lower than the last time I > had them done in June. Nothing horrible, just not as good as I assumed > based on how I've been feeling. > > > Now I know that Bruce is going to respond that the numbers and the > ct scan are useful and all but what really matters is how I've been > feeling and I'm feeling good. This is absolutely positively true and so > I'm not going to let this get to me. Tomorrow I go back to rehab and I > will move forward. > > > Dr. on is going to consult with my rheumatologist and we will > probably increase the Imuran from 100mg to 150mg for awhile. > > > So that's the story. All is well, just not as well as I would like > it to be. > > > > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2009 Report Share Posted September 22, 2009 yes -- some of the groceries have the wipes -- many times the wipes are gone when i get there Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Test resultsTo: Breathe-Support Date: Tuesday, September 22, 2009, 1:12 PM Safeway has it here.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho From: Bruce <brucemoreland@ gmail.com>Subject: Re: Test resultsTo: Breathe-Support@ yahoogroups. comDate: Tuesday, September 22, 2009, 7:03 AM PinkKroger here now has clorox wipes just inside the entrance for wiping thecart handles. I was curious as to whether that is a practice in otherareas or by other grocers.> >> > Hi everyone,> > Well everything is fine I didn't get precisely the results Iexpected. My ct scan shows some mild progression and oddly my pft,specifically my FVC and my DLCO are somewhat lower than the last time Ihad them done in June. Nothing horrible, just not as good as I assumedbased on how I've been feeling.> > Now I know that Bruce is going to respond that the numbers and thect scan are useful and all but what really matters is how I've beenfeeling and I'm feeling good. This is absolutely positively true and soI'm not going to let this get to me. Tomorrow I go back to rehab and Iwill move forward.> > Dr. on is going to consult with my rheumatologist and we willprobably increase the Imuran from 100mg to 150mg for awhile.> > So that's the story. All is well, just not as well as I would likeit to be.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2009 Report Share Posted September 23, 2009 Bruce... I'm seeing a (new) doc on Monday for the joint pain. As I wrote to Vicky earlier, it's too far to drive back to Canby for medical care. This is a huge medical clinic so I'm confident I can have med needs taken care of. I'll stay with the pulmodude, I don't seem all that often anyway and he's not too far from our new location. Have a good one. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Test results SherI'm having a good day now that I see your posts. Hope the joint painleaves soon after the Cipro although if that was the cause it can takesome time.> > >> > > Hi everyone,> > > Well everything is fine I didn't get precisely the results I> expected. My ct scan shows some mild progression and oddly my pft,> specifically my FVC and my DLCO are somewhat lower than the lasttime I> had them done in June. Nothing horrible, just not as good as Iassumed> based on how I've been feeling.> > > Now I know that Bruce is going to respond that the numbers andthe> ct scan are useful and all but what really matters is how I've been> feeling and I'm feeling good. This is absolutely positively true andso> I'm not going to let this get to me. Tomorrow I go back to rehab andI> will move forward.> > > Dr. on is going to consult with my rheumatologist and wewill> probably increase the Imuran from 100mg to 150mg for awhile.> > > So that's the story. All is well, just not as well as I wouldlike> it to be.> > >> > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Jackie, That is great news!!!! KP > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > Cheers, > > > > .................................................................................\ ........................ > http://sutherland-studios.com.au > > Dummies author : > http://tinyurl.com/CodesandCryptograms > http://tinyurl.com/WordSearches > > .................................................................................\ ........................ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! To: neurosarcoidosis Sent: Thu, October 28, 2010 6:54:04 PMSubject: RE: Test results That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Thu, 28 Oct 2010 18:31:06 +1100> Subject: Test results> > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2010 Report Share Posted October 28, 2010 Thanks for the info on tapering off the pred. I've only been on the 60 mg/day for 4 weeks, does that make a difference as to how my body would tolerate coming off it this quickly? Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Thu, 28 Oct 2010 18:31:06 +1100 > > Subject: Test results > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > > > Cheers, > > > > > > > > .................................................................................\ ........................ > > http://sutherland-studios.com.au > > > > Dummies author : > > http://tinyurl.com/CodesandCryptograms > > http://tinyurl.com/WordSearches > > > > .................................................................................\ ........................ > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2010 Report Share Posted October 29, 2010 My neurologist actually specified " Drop by 10 mg/week " in his written report to my GP, which she got yesterday, and I'm going to stretch it out to 8 days (this is instead of the 5 days he told me initially). So hopefully that will be a bit better. Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > > I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! > > > To: neurosarcoidosis > Sent: Thu, October 28, 2010 6:54:04 PM > Subject: RE: Test results > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Thu, 28 Oct 2010 18:31:06 +1100 > > Subject: Test results > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > > > Cheers, > > > > > > > > .................................................................................\ ........................ > > http://sutherland-studios.com.au > > > > Dummies author : > > http://tinyurl.com/CodesandCryptograms > > http://tinyurl.com/WordSearches > > > > .................................................................................\ ........................ > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Well, you're right, it's a bit better. I'm more concerned about the amount of the drops--10mg a week. Gee whiz, how about 5 for starters. But I'm not going to start in on that again. And the crowd roared! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Sat, 30 Oct 2010 10:34:28 +1100> Subject: Re: Test results> > My neurologist actually specified "Drop by 10 mg/week" in his written report to my GP, which she got yesterday, and I'm going to stretch it out to 8 days (this is instead of the 5 days he told me initially). So hopefully that will be a bit better.> > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > > > I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! > > > > > > To: neurosarcoidosis > > Sent: Thu, October 28, 2010 6:54:04 PM> > Subject: RE: Test results> > > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > Subject: Test results> > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > .......................................................................................................> > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > Message Archives:-> > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > Members Database:-> > > Listings of locations, phone numbers, and instant messengers.> > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 I did express my / your concerns to my GP, and she agreed it did sound like a fast descent ... but that she wasn't the expert, and she was being guided by my neurologist, who has supervised this situation many times before, after all. So we're bowing to his superior knowledge and will see how it goes. My GP has given me a list of symptoms to look out for with steroid withdrawal, so I can keep an eye on things. Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > Well, you're right, it's a bit better. I'm more concerned about the amount of the drops--10mg a week. Gee whiz, how about 5 for starters. But I'm not going to start in on that again. And the crowd roared! > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Sat, 30 Oct 2010 10:34:28 +1100 > > Subject: Re: Test results > > > > My neurologist actually specified " Drop by 10 mg/week " in his written report to my GP, which she got yesterday, and I'm going to stretch it out to 8 days (this is instead of the 5 days he told me initially). So hopefully that will be a bit better. > > > > Cheers, > > > > > > > > .................................................................................\ ........................ > > http://sutherland-studios.com.au > > > > Dummies author : > > http://tinyurl.com/CodesandCryptograms > > http://tinyurl.com/WordSearches > > > > .................................................................................\ ........................ > > > > > > > > > > > > I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! > > > > > > > > > To: neurosarcoidosis > > > Sent: Thu, October 28, 2010 6:54:04 PM > > > Subject: RE: Test results > > > > > > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. > > > > > > Ramblin' Rose > > > Moderator > > > > > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100 > > > > Subject: Test results > > > > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > > > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > > > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > > > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > > > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > > > > > > > Cheers, > > > > > > > > > > > > > > > > .................................................................................\ ........................ > > > > http://sutherland-studios.com.au > > > > > > > > Dummies author : > > > > http://tinyurl.com/CodesandCryptograms > > > > http://tinyurl.com/WordSearches > > > > > > > > .................................................................................\ ........................ > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > Message Archives:- > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > Members Database:- > > > > Listings of locations, phone numbers, and instant messengers. > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2010 Report Share Posted October 30, 2010 Sounds like your GP is on the ball; I like that she gave you the symptoms to watch for. BTW, congratulations on being able to drive! I know that's a biggie. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) > To: Neurosarcoidosis > Date: Sat, 30 Oct 2010 18:25:11 +1100> Subject: Re: Test results> > I did express my / your concerns to my GP, and she agreed it did sound like a fast descent ... but that she wasn't the expert, and she was being guided by my neurologist, who has supervised this situation many times before, after all. So we're bowing to his superior knowledge and will see how it goes. My GP has given me a list of symptoms to look out for with steroid withdrawal, so I can keep an eye on things. > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > Well, you're right, it's a bit better. I'm more concerned about the amount of the drops--10mg a week. Gee whiz, how about 5 for starters. But I'm not going to start in on that again. And the crowd roared!> > > > Ramblin' Rose> > Moderator> > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Sat, 30 Oct 2010 10:34:28 +1100> > > Subject: Re: Test results> > > > > > My neurologist actually specified "Drop by 10 mg/week" in his written report to my GP, which she got yesterday, and I'm going to stretch it out to 8 days (this is instead of the 5 days he told me initially). So hopefully that will be a bit better.> > > > > > Cheers,> > > > > > > > > > > > .......................................................................................................> > > http://sutherland-studios.com.au> > > > > > Dummies author :> > > http://tinyurl.com/CodesandCryptograms> > > http://tinyurl.com/WordSearches> > > > > > .......................................................................................................> > > > > > > > > > > > > > > > > I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! > > > > > > > > > > > > To: neurosarcoidosis > > > > Sent: Thu, October 28, 2010 6:54:04 PM> > > > Subject: RE: Test results> > > > > > > > > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body.> > > > > > > > Ramblin' Rose> > > > Moderator> > > > > > > > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100> > > > > Subject: Test results> > > > > > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again!> > > > > > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way.> > > > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too.> > > > > > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November.> > > > > > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?).> > > > > > > > > > Cheers,> > > > > > > > > > > > > > > > > > > > .......................................................................................................> > > > > http://sutherland-studios.com.au> > > > > > > > > > Dummies author :> > > > > http://tinyurl.com/CodesandCryptograms> > > > > http://tinyurl.com/WordSearches> > > > > > > > > > .......................................................................................................> > > > > > > > > > > > > > > > > > > > ------------------------------------> > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > > > The Neurosarcoidosis Community> > > > > > > > > > > > > > > > > > > > Message Archives:-> > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages> > > > > > > > > > Members Database:-> > > > > Listings of locations, phone numbers, and instant messengers.> > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2010 Report Share Posted October 31, 2010 Yes, my GP is very good. Have just seen my 'regular' specialist (my favourite doctor, who has been managing my fibromyalgia for years) and he's given me a much better tapering schedule, which includes going down by 1 mg/week once I hit 10 mg. He also is going to speak to my immunologist about having me on prednisolone longer term (lower dose) rather than Imuran & cyclophosamide ... the fact that my vision has so dramatically recovered so quickly seems to be pointing more to a vasculitis, rather than sarcoidosis ... having a cerebral angiogram at some point to further test this theory. And yes, it's great being able to drive again, although I know I'm a bit 'hyped' up by the pred (50 mg) so I'm making sure I'm EXTRA careful and cautious on the road! LOL Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > Sounds like your GP is on the ball; I like that she gave you the symptoms to watch for. BTW, congratulations on being able to drive! I know that's a biggie. > > Ramblin' Rose > Moderator > > > > It's not that life is so short-------It's that we wait so long to begin. > (attributed to Wooden, among others) > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Sat, 30 Oct 2010 18:25:11 +1100 > > Subject: Re: Test results > > > > I did express my / your concerns to my GP, and she agreed it did sound like a fast descent ... but that she wasn't the expert, and she was being guided by my neurologist, who has supervised this situation many times before, after all. So we're bowing to his superior knowledge and will see how it goes. My GP has given me a list of symptoms to look out for with steroid withdrawal, so I can keep an eye on things. > > > > Cheers, > > > > > > > > .................................................................................\ ........................ > > http://sutherland-studios.com.au > > > > Dummies author : > > http://tinyurl.com/CodesandCryptograms > > http://tinyurl.com/WordSearches > > > > .................................................................................\ ........................ > > > > > > > > > Well, you're right, it's a bit better. I'm more concerned about the amount of the drops--10mg a week. Gee whiz, how about 5 for starters. But I'm not going to start in on that again. And the crowd roared! > > > > > > Ramblin' Rose > > > Moderator > > > > > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Sat, 30 Oct 2010 10:34:28 +1100 > > > > Subject: Re: Test results > > > > > > > > My neurologist actually specified " Drop by 10 mg/week " in his written report to my GP, which she got yesterday, and I'm going to stretch it out to 8 days (this is instead of the 5 days he told me initially). So hopefully that will be a bit better. > > > > > > > > Cheers, > > > > > > > > > > > > > > > > .................................................................................\ ........................ > > > > http://sutherland-studios.com.au > > > > > > > > Dummies author : > > > > http://tinyurl.com/CodesandCryptograms > > > > http://tinyurl.com/WordSearches > > > > > > > > .................................................................................\ ........................ > > > > > > > > > > > > > > > > > > > > > > I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! > > > > > > > > > > > > > > > To: neurosarcoidosis > > > > > Sent: Thu, October 28, 2010 6:54:04 PM > > > > > Subject: RE: Test results > > > > > > > > > > > > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. > > > > > > > > > > Ramblin' Rose > > > > > Moderator > > > > > > > > > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > > From: denise@... > > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100 > > > > > > Subject: Test results > > > > > > > > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > > > > > > > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > > > > > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > > > > > > > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > > > > > > > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > > > > > > > > > > > Cheers, > > > > > > > > > > > > > > > > > > > > > > > > .................................................................................\ ........................ > > > > > > http://sutherland-studios.com.au > > > > > > > > > > > > Dummies author : > > > > > > http://tinyurl.com/CodesandCryptograms > > > > > > http://tinyurl.com/WordSearches > > > > > > > > > > > > .................................................................................\ ........................ > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > > > > > > > > > Message Archives:- > > > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > > > > > Members Database:- > > > > > > Listings of locations, phone numbers, and instant messengers. > > > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2010 Report Share Posted November 1, 2010 , So glad you are feeling better, and able to drive again, I know that is one fear I have is losing the ability to drive, this weekend I walk part of the mall (small one) with my cane, and I notice driving home, I could only move my foot back and forth from the pedals, but couldn't lift them up, and they were heavy, it was the first time I was just a little bit cautious, well not that I'm usually not. but more so. The next day I payed dearly, my legs felt like cement,and in pain, and I was not able to get out of bed until almost 2 the next day. I hope you don't have Sarcoid, and that your eyes are going to be fine, although if you leave us, I'll be sad. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Yes, my GP is very good. Have just seen my 'regular' specialist (my favourite doctor, who has been managing my fibromyalgia for years) and he's given me a much better tapering schedule, which includes going down by 1 mg/week once I hit 10 mg. He also is going to speak to my immunologist about having me on prednisolone longer term (lower dose) rather than Imuran & cyclophosamide ... the fact that my vision has so dramatically recovered so quickly seems to be pointing more to a vasculitis, rather than sarcoidosis ... having a cerebral angiogram at some point to further test this theory. And yes, it's great being able to drive again, although I know I'm a bit 'hyped' up by the pred (50 mg) so I'm making sure I'm EXTRA careful and cautious on the road! LOL Cheers, ........................................................................................................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches ........................................................................................................ > Sounds like your GP is on the ball; I like that she gave you the symptoms to watch for. BTW, congratulations on being able to drive! I know that's a biggie. > > Ramblin' Rose > Moderator > > > > It's not that life is so short-------It's that we wait so long to begin. > (attributed to Wooden, among others) > > > > > > > To: Neurosarcoidosis > > From: denise@... > > Date: Sat, 30 Oct 2010 18:25:11 +1100 > > Subject: Re: Test results > > > > I did express my / your concerns to my GP, and she agreed it did sound like a fast descent ... but that she wasn't the expert, and she was being guided by my neurologist, who has supervised this situation many times before, after all. So we're bowing to his superior knowledge and will see how it goes. My GP has given me a list of symptoms to look out for with steroid withdrawal, so I can keep an eye on things. > > > > Cheers, > > > > > > > > ....................................................................................................... > > http://sutherland-studios.com.au > > > > Dummies author : > > http://tinyurl.com/CodesandCryptograms > > http://tinyurl.com/WordSearches > > > > ....................................................................................................... > > > > > > > > > Well, you're right, it's a bit better. I'm more concerned about the amount of the drops--10mg a week. Gee whiz, how about 5 for starters. But I'm not going to start in on that again. And the crowd roared! > > > > > > Ramblin' Rose > > > Moderator > > > > > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > From: denise@... > > > > Date: Sat, 30 Oct 2010 10:34:28 +1100 > > > > Subject: Re: Test results > > > > > > > > My neurologist actually specified " Drop by 10 mg/week " in his written report to my GP, which she got yesterday, and I'm going to stretch it out to 8 days (this is instead of the 5 days he told me initially). So hopefully that will be a bit better. > > > > > > > > Cheers, > > > > > > > > > > > > > > > > ....................................................................................................... > > > > http://sutherland-studios.com.au > > > > > > > > Dummies author : > > > > http://tinyurl.com/CodesandCryptograms > > > > http://tinyurl.com/WordSearches > > > > > > > > ....................................................................................................... > > > > > > > > > > > > > > > > > > > > > > I also can't stress enough that you need to taper very slowly. Even if your doc has you on a rapid taper, you don't have to listen to him! > > > > > > > > > > > > > > > To: neurosarcoidosis > > > > > Sent: Thu, October 28, 2010 6:54:04 PM > > > > > Subject: RE: Test results > > > > > > > > > > > > > > > That's great news about your vision, ! I hope it returns to 100%. I hate to keep harping away on this, but as I told KP, I think your doc is tapering the Pred too fast. I guess as I said before, they've probably done it & gotten away with it, but one of these days a patient is going to go into adrenal crisis, so why take the chance? We all want to be off Prednisone, but there are worse things, including a major relapse or flare in a new organ or system. I hope & pray that you will be fortunate & escape these problems, but be very vigilant about even slight changes in your vision or new/unusual symptoms anywhere in your body. > > > > > > > > > > Ramblin' Rose > > > > > Moderator > > > > > > > > > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > To: Neurosarcoidosis > > > > > > From: denise@... > > > > > > Date: Thu, 28 Oct 2010 18:31:06 +1100 > > > > > > Subject: Test results > > > > > > > > > > > > I'm just back from having another visual field tests done, and the great news is that my vision loss has gone from 45% a month ago, to closer to 5% now! The remaining loss is in the central part of my vision, so it still interferes with reading, but at least we know the corticosteroids are doing their thing, and it should recover fully, with any luck. And I'm allowed to drive again! > > > > > > > > > > > > My vision is very blurry, much worse than usual, because I've developed steroid-diabetes (which should go away once I'm off the steroids), and my high blood sugars are affecting my eyes. I've just started on a very low carb diet, to try to control my blood sugars that way. > > > > > > The ophthalmologist said my eyes showed no signs of sarcoidosis or vasculitis inside the eyes themselves, too. > > > > > > > > > > > > I'll start dropping my pred dose from tomorrow (I'm on 60 mg/day) - my neurologist said reduce it by 10 mg every 5 days - so I should be off it entirely by the end of November. > > > > > > > > > > > > I still have numbness down my right arm and on the right lower jaw/side of my mouth, and have developed some dizziness today (has anyone else got that as a NS symptom?). > > > > > > > > > > > > Cheers, > > > > > > > > > > > > > > > > > > > > > > > > ....................................................................................................... > > > > > > http://sutherland-studios.com.au > > > > > > > > > > > > Dummies author : > > > > > > http://tinyurl.com/CodesandCryptograms > > > > > > http://tinyurl.com/WordSearches > > > > > > > > > > > > ....................................................................................................... > > > > > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > The Neurosarcoidosis Community > > > > > > > > > > > > > > > > > > > > > > > > Message Archives:- > > > > > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > > > > > > > > > Members Database:- > > > > > > Listings of locations, phone numbers, and instant messengers. > > > > > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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