Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Sallie, I am so glad that your condition was diagnosed. If you indeed have temporal arteritis, you will need to take a lot more Prednisone than the initial shock therapy of 30 mg twice a day. Temporal arteritis can lead to blindness, so follow your rheumatologists recommendations to the letter. If the treatment for temporal arteritis is as for polymyalgia rheumatica (which I have), the treatment will consist of relatively high Prednisone dosages initially, decreasing at two-week intervals, until the Prednisone and disease are both gone, perhaps in a year. Let's both pray that this is so. If you are ever hooked on a high level of Prednisone (such as 60 mg per day), you will need to taper off gradually under a doctor's guidance. Stopping cold turkey can lead to terrible flares, even death. The problem is that Prednisone displaces the body's own hormone cortisol. The normal average daily production of cortisol is 30-40 mg. This is the strength equivalent of 6 to 8 mg of Prednisone. See for instance http://www.valleysportsphysicians.com/services/hormone/cortisol.asp I am currently on 4 mg of Prednisone per day. Starting in August, I will experiment by reducing this dosage in 1/2 mg steps every two weeks. If I fall out of remission, I will go back up in 1 mg intervals. Please keep us informed. Sincerely, Harald At 07:50 PM 6/27/2006, you wrote: >Hi Harold > >Thank you for your email the other day, you were dead right about my >having temporal arteritis!! > I went to the Dr this morning and she thought I might have that, > as my pain levels had increased and my sight in one eye had become > very blurred, she sent me for a blood test to see how high my > inflammation levels were, the results showed they are very high, so > she is putting me on prednisone for 3 days at 30mg twice a day. I > always thought that you had to taper prednisone off gradually? But > maybe because it is only 3 days I do not have to worry about that? >Many thanks >Sallie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Hi Harold Thank you for sending me the site address about coritsol and DHEA. My husband went and collected the prescription from my GP and it says on the container Prednisone 20mg(APO) I am to take them twice a day for 5 days, which is a lower dose from what she said on the phone this afternoon. She said I should wait 2 days after taking them then ring her to tell her how I feel. She is not 100% sure that I have temporal arteritis but from my symptoms, it seems the most likely thing. I have Ankylosing Spondylitis and as far as I know I do not have polymyalgia rheumatica. I feel really nervous about taking the Prednisone and I must admit to not having 100% faith in my GP! Thank you for your help. Sallie " Harald Weiss, Technical Marketing Group " <hweiss@...> wrote: Sallie, I am so glad that your condition was diagnosed. If you indeed have temporal arteritis, you will need to take a lot more Prednisone than the initial shock therapy of 30 mg twice a day. Temporal arteritis can lead to blindness, so follow your rheumatologists recommendations to the letter. If the treatment for temporal arteritis is as for polymyalgia rheumatica (which I have), the treatment will consist of relatively high Prednisone dosages initially, decreasing at two-week intervals, until the Prednisone and disease are both gone, perhaps in a year. Let's both pray that this is so. If you are ever hooked on a high level of Prednisone (such as 60 mg per day), you will need to taper off gradually under a doctor's guidance. Stopping cold turkey can lead to terrible flares, even death. The problem is that Prednisone displaces the body's own hormone cortisol. The normal average daily production of cortisol is 30-40 mg. This is the strength equivalent of 6 to 8 mg of Prednisone. See for instance http://www.valleysportsphysicians.com/services/hormone/cortisol.asp I am currently on 4 mg of Prednisone per day. Starting in August, I will experiment by reducing this dosage in 1/2 mg steps every two weeks. If I fall out of remission, I will go back up in 1 mg intervals. Please keep us informed. Sincerely, Harald --------------------------------- On 7 360 & #176; new features: Blog polls, visitor stats custom themes and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Sallie, One of the key diagnostics for polymyalgia rheumatica is that it responds dramatically within a day to modest dosages of Prednisone, such as 20 mg. I was symptom free with 10 mg. Temporal arteritis may respond in the same way, but I have not researched this issue. It appears that your doctor is running a diagnostic, which is why you have to report back in two days. Sincerely, Harald At 10:57 PM 6/27/2006, you wrote: >Hi Harold > >Thank you for sending me the site address about coritsol and DHEA. > >My husband went and collected the prescription from my GP and it >says on the container Prednisone 20mg (APO) I am to take them twice >a day for 5 days, which is a lower dose from what she said on the >phone this afternoon. She said I should wait 2 days after taking >them then ring her to tell her how I feel. She is not 100% sure that >I have temporal arteritis but from my symptoms, it seems the most >likely thing. I have Ankylosing Spondylitis and as far as I know I >do not have polymyalgia rheumatica. I feel really nervous about >taking the Prednisone and I must admit to not having 100% faith in my GP! >Thank you for your help. > >Sallie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Sallie.... My mom had temporal artheritis and the only way to really diagnose it was to do a biopsy on one of the vessels. Mom was positively diagnosed and then put on prednisone for over a year. Fortunately she had no problems with the prednisone and it has been several years since this came about. Do not fear the prednisone...in this case it is definitely needed and is just the thing to keep your sight from deteriorating. Untreated can lead to blindness so follow your docs advise and go to a rheumatologist or neurologist if you feel you need a second opinion. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2006 Report Share Posted June 28, 2006 Hey ya'll again. This is from someone who has been on prednisone for the better part of 18 years. Prednisone does have it's bad points. And I'm one who has been subject to many of its ill effects. BUT!!! I have to say, when it was needed the most, it was the biggest help. I would recomend its use any time it is truly needed. It will take care of swelling and inflamation, and do it well. Yes it has side effects but it is well worth them, in my OPINION... BUT!!! Use it only as long as you need it. If you have the opportunity to get off of it, and it will not hinder or worsen your condition, seek out a way to taper the stuff, under the direction of your doc. And pay close attention to the taper part of this. If you taper too fast, you may flare all of a sudden... Again, just another opinion, but like I said, I've been on it for a good part of 18 years... michael > > Sallie.... My mom had temporal artheritis and the only way to really > diagnose it was to do a biopsy on one of the vessels. Mom was positively diagnosed > and then put on prednisone for over a year. Fortunately she had no problems > with the prednisone and it has been several years since this came about. Do > not fear the prednisone...in this case it is definitely needed and is just the > thing to keep your sight from deteriorating. Untreated can lead to > blindness so follow your docs advise and go to a rheumatologist or neurologist if you > feel you need a second opinion. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Hi Micael Thanks for the email, I have only been given 5 days of 20mg twice a day with no mention of tapering this off? Maybe becasue it is such a short course it does not matter??? Sallie michaelr_321 <michaelr_321@...> wrote: Hey ya'll again. This is from someone who has been on prednisone for the better part of 18 years. Prednisone does have it's bad points. And I'm one who has been subject to many of its ill effects. BUT!!! I have to say, when it was needed the most, it was the biggest help. I would recomend its use any time it is truly needed. It will take care of swelling and inflamation, and do it well. Yes it has side effects but it is well worth them, in my OPINION... BUT!!! Use it only as long as you need it. If you have the opportunity to get off of it, and it will not hinder or worsen your condition, seek out a way to taper the stuff, under the direction of your doc. And pay close attention to the taper part of this. If you taper too fast, you may flare all of a sudden... Again, just another opinion, but like I said, I've been on it for a good part of 18 years... michael --------------------------------- On 7 360 & #176; new features: Blog polls, visitor stats custom themes and more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 to be honest, I don't really know what your doc is thinking. When you take prednisone, your bodies natural ability to produce cortisol (I think that's the chemical) is interrupted. If you suddenly stop taking the pred, your body takes a bit to kick back in, if it kicks in at all. (in some extreme cases) I've always been told that the best way is no matter what, taper, taper, taper... Occasionally when I have a flare my doc will put me on 30mg for two days, 25 for two, 20 for two, 15 for two, etc... That's a rather hasty taper schedule, but it's something my doc and I have found works over the years. I can't garantee you will have a flare or won't have a flare because of it. I've always looked at it as why take the chance, since I already know the risks... And maybe this Temporal arteritis acts completely differently. That's another unknown factor... again, just my opinion and experience... others may be different michael > > Hi Micael > > Thanks for the email, I have only been given 5 days of 20mg twice a day with no mention of tapering this off? Maybe becasue it is such a short course it does not matter??? > Sallie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2006 Report Share Posted June 29, 2006 Micheal, I have not done specific research on the topic, but I believe that once you are dependent on Prednisone, the tapering off rate should be 15% of the latest dosage dosage every two weeks. Does anyone have different numbers? Taking 30 mg of Prednisone for 3 days, or receiving a cortisone injection, will not make you dependent on the stuff. Apparently, it takes a while for the body to stop manufacturing the hormone cortisol. Sincerely, Harald At 01:33 PM 6/29/2006, you wrote: >to be honest, I don't really know what your doc is thinking. When you >take prednisone, your bodies natural ability to produce cortisol (I >think that's the chemical) is interrupted. If you suddenly stop taking >the pred, your body takes a bit to kick back in, if it kicks in at all. >(in some extreme cases) I've always been told that the best way is no >matter what, taper, taper, taper... Occasionally when I have a flare my >doc will put me on 30mg for two days, 25 for two, 20 for two, 15 for >two, etc... That's a rather hasty taper schedule, but it's something my >doc and I have found works over the years. >I can't garantee you will have a flare or won't have a flare because of >it. I've always looked at it as why take the chance, since I already >know the risks... And maybe this Temporal arteritis acts completely >differently. That's another unknown factor... >again, just my opinion and experience... others may be different > >michael Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 I am taking LDN because I have an unknown autoimmune disorder that has not been yet diagnosed. One of my symptoms is constant cheekbone and eye discomfort. I have done some research and have turned up an ailment called Temporal Arteritis. Does anyone know anything about this ailment? This does not seem to be helped by LDN but it is supposedly an autoimmune disorder. If anyone knows anything about this, please let me know They are querying this with me and I just had a blood test so far, ESR I think it was called.... Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hi Marla, Your symptoms also sound similar to thyroid eye disease, which is related to Graves' disease but sometimes can accompany normal thyroid levels. Another term for this is Graves' opthalmopathy. An experienced eye doctor should be able to tell. Also, a test for thytrophin binding inhibitory immunoglobulin (TBII) antibodies would tell. This is definitely an autoimmune problem, and LDN seems to help. If it is thyroid eye disease, things that will make it worse include cigarette smoke, dietary iodine (which is very high in the US), aspartame artificial sweetener, and stress. I also found that the DLPA that we take to make the LDN more effective worsened my thyroid eye disease symptoms, perhaps because it's similar in composition to aspartame. Best wishes, B. ________________________________ From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of marlaprendergast Sent: Friday, February 08, 2008 9:01 PM low dose naltrexone Subject: [low dose naltrexone] Temporal Arteritis I am taking LDN because I have an unknown autoimmune disorder that has not been yet diagnosed. One of my symptoms is constant cheekbone and eye discomfort. I have done some research and have turned up an ailment called Temporal Arteritis. Does anyone know anything about this ailment? This does not seem to be helped by LDN but it is supposedly an autoimmune disorder. If anyone knows anything about this, please let me know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Celia, Please use the medicine your doctor gave you for Temporal Artertis! It can affect your eyesite! Parmajak1@... Re: [low dose naltrexone] Temporal Arteritis I am taking LDN because I have an unknown autoimmune disorder that has not been yet diagnosed. One of my symptoms is constant cheekbone and eye discomfort. I have done some research and have turned up an ailment called Temporal Arteritis. Does anyone know anything about this ailment? This does not seem to be helped by LDN but it is supposedly an autoimmune disorder. If anyone knows anything about this, please let me know They are querying this with me and I just had a blood test so far, ESR I think it was called.... Celia No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.0/1268 - Release Date: 2/9/2008 11:54 AM Quote Link to comment Share on other sites More sharing options...
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