Guest guest Posted March 21, 2009 Report Share Posted March 21, 2009 , The best thing you can do is get rid of the processed foods and refined sugars. They do alot to add to the neuropathy issues. Hydrating is an absolute must, all of us have a tendency to run daily low grade fevers just from the inflammation-- so we sit at the edge of dehydration all the time. Sodas, caffeine, alcohol all are dehydraters, so they need to go. Get rid of the high fructose corn syrup, and use honey or sugar to sweeten-- and cut back on how much you use. Dairy products also add to the inflammation-- so cut back. It's the lactic acid that iritates the joints. For years, the Ambien they'd put me on for sleep made my brain even fogger, and really effected my short term memory. I finally weaned off, and have gone to Melatonin 10 mg (2 at bedtime) and that has helped more than all the others. In order to stop the sedating effect, go out and get a few minutes of sunshine in the morning, and it stops that hangover effect. Prednisone is great in the short term basis, but as they wean you off you'll find that your symptoms will come back. They really need to be looking at the steroid sparing meds-- Imuran, Arava, Methotrexate, Plaquenil. If those don't give you relief over a few months, then it's on to the DMARDS--AND OR BRM'S. Dmard is disease modifying antirheumatics drugs, and BRM is Biological Response Modifiers. You need to go up the line of meds from the least offensive to the strongest-- so that you can see what works and what doesn't. It's one drug at a time- so side effects can be monitored. , beating this disease is a process of finding what meds work to give you the best quality of life. We don't know the cause of sarc, or have a cure--- but we can take positive approaches by controlling our diets and doing the little things to increase our lifes. It's all common sense stuff we know we need to do-- even if we were healthy. Sarc is a generally slow progressing disease, and it's the side effects that are issues-- the exhaustion, fatigue, body and joint pain. So getting the toxins out of your body is a good thing. Take care, I apologize for not going into this further, but am sick with the flu myself. Tracie NS Co-owner/moderator Subject: Questions ???To: Neurosarcoidosis Date: Saturday, March 21, 2009, 2:00 PM Does an Ant inflammatory Diet make a difference in battling N.S.?? I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue? The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M.R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2009 Report Share Posted March 22, 2009 Hi , I so feel your frustration, and the foggy brain is no fun either. I was on Methotrexate for about 5 years along with Plaquanil, and I did OK on that, the fogginess cleared up, and I felt better, then it just stop working, so typical of an anti-inflammatory condition. I am now on Remicade and still Plaquanil, off the Metho. The Remicade has been a great drug, again the fogginess cleared up, and I have felt so much better on the Remicade. Other's have other stories of medications that worked for them, too. So maybe a mention of some of these medications when you see your doctor and see what he says. Blessings, Marla Does an Ant inflammatory Diet make a difference in battling N.S.?? I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue? The sarcoid is located in my brain next to the hypothalamus-Original size was 2 1/2 " X 1/2 " , has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M.R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better. I feel so lousy and fussy headed, is this due to the Prednisone, higher dose of Lunesta, N.S. or a combination of all three. I go to he Mayo Clinic in Rochester, Mn.. I am so tired of hearing " We aren't sure, we deal with so few of you with this diagnoses " I kinda feel like I am their guinea pig. Where is the best medical facility in the country to offer me the best chance in beating this disease? What are my chances in beating this deisease??? There must be stats somewhere. Help..I need answers to save my sanity...Thank you, Thank You Desparate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hello, I'm Mona I have sarcoid in the lungs. a couple years ago i found out I had it, but at that time i was not medicated for it the doctor did not want to at the time. Things seemed better so I didn't have to go to the doctor as often and the last time I went last year he said my Sarcoid was gone. Well for a few months now all the breathing problems started back, so now the doctor says it back in full swing stage 2 whatever that means. I'm like you alittle unsure and yes if anyone out there can help me as well please do so. 4 weeks ago I was also put in the hospital with a staff infection mrsa in the lungs, it was pretty bad, scared me really bad. all this is so hard to deal with. I'm now on 50mg on predizone for the next 2 months or who knows how long? does the Predizone Help is a question I ask and what happens when we come off? All I do is shake all the time, I feel wired, cry, depressed, just a total mess all the time now. I sure hope maybe someone can help us both on these Questions take care Mona Subject: Questions ???To: Neurosarcoidosis Date: Saturday, March 21, 2009, 9:00 PM Does an Ant inflammatory Diet make a difference in battling N.S.?? I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue? The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M.R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Thank you so much for the info. My doctor has not talked to me at all about any other medication that might can be used. prednisone is his first step and then he is hoping it will go away. Over the past few weeks I have been doing alots of reading on sarcoid and it seems rarely that it would all go away, I sure hope to GOD overtime it does. I take it that most of the one's on here have had it for sometime. another thing I have noticed since the pred. i get confused also, is that a problem for anyone. Night seems to be my bad time all the way around. Sometime's I just sit and cry, depressed bad. After almost a year I thought it was gone and then bam a slap in the face and now in second stage it was all such a shock I guess. Also does anyone understand the second stage thing. I do understand there are different one's but not they really mean, so that info. would be helpful also. thanks so much again There is alots more I would love to ask and will in time, it's just nice to have people like you out there that will share these hard times with each other Mona From: mary bauer <marybauerb (AT) yahoo (DOT) com>Subject: Questions ???To: Neurosarcoidosis@ yahoogroups. comDate: Saturday, March 21, 2009, 9:00 PM Does an Ant inflammatory Diet make a difference in battling N.S.?? I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue? The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M.R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 I would like to know about the different stages also. I have had this for 4 years and still don't understand. Tracie, can you or anyone help? Jackie Questions ???To: Neurosarcoidosis@ yahoogroups. comDate: Saturday, March 21, 2009, 9:00 PM Does an Ant inflammatory Diet make a difference in battling N.S.?? I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue? The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2" X 1/2", has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M.R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 Hi Mona….. I’m living proof that Sarc can go away….or I should say “in remission”. In 1970 I was diagnosed with lymphatic and pulmonary sarc. I had almost all my lymph nodes removed and the right lung biopsy I had some pretty severe symptoms for about 2 years. Was off and on Prednisone. One of my worst symptoms was the joint pains….there were days I could hardly walk. After about 2 years, most symptoms disappeared and they ruled me in remission. However, about 12 years ago I had a granuloma show up in my right lung, with only some minor symptoms. The doctor just kept a close watch to make sure more didn’t show up. Everytime I had a chest x-ray the technician would panic until I explained it was sarc. Recently I had a current chest x-ray and I asked the technician if the granuloma was still there…..NO! It is gone. I joined this group last September to gain more information because my son (Greg – Krumdawg) now has NeuroSarc. This is a great place for information. Hang in there….take it one day at a time….keep a positive attitude and by all means, come here to share your thoughts. These are GREAT people! BTW…..I’m also a 23 year survivor of breast cancer. Anything is possible! Hugs, Questions ??? To: Neurosarcoidosis@ yahoogroups. com Date: Saturday, March 21, 2009, 9:00 PM Does an Ant inflammatory Diet make a difference in battling N.S.?? I have been taking Prednisone 60mg dly since Oct, 2008. Sleeping through the night continues to be an issue. Am now trying Lunesta 4 mg. with some but not complete relief-What has helped other people with this issue? The sarcoid is located in my brain next to the hypothalamus- Original size was 2 1/2 " X 1/2 " , has shrunk to almost nonexistent, between Oct and Nov,2008. Between Nov.,2008 and Jan. 2009, no change. The other area affected is in my spine from C6 thru T2. Again 1st follow-up M.R.I. showed signed shrinkage, 2nd follow-up showed no change. I am returning April 13th for M.R.I and Lumbar Puncture. Should I be concerned due no change between the 1st and 2nd M.R.I.?? I don't feel any better. I feel so lousy and fussy headed, is this due to the Prednisone, higher dose of Lunesta, N.S. or a combination of all three. I go to he Mayo Clinic in Rochester, Mn.. I am so tired of hearing " We aren't sure, we deal with so few of you with this diagnoses " I kinda feel like I am their guinea pig. Where is the best medical facility in the country to offer me the best chance in beating this disease? What are my chances in beating this deisease??? There must be stats somewhere. Help.I need answers to save my sanity...Thank you, Thank You Desparate Quote Link to comment Share on other sites More sharing options...
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