Guest guest Posted May 29, 2000 Report Share Posted May 29, 2000 > Hello, > > My surgery is June 8th. I know I can't take my arthritis meds two weeks > before surgery but is there somethig else we can take for joint pain. > I'm hurting from planting flowers and I have to take 32 4 yr. olds to > the zoo on Thursday. I will tough it out if I have to but if you know of > something safe let me know. > > How about post op, what can we take for arthritis then. I know most of > the meds are not good for your stomach. I'm hoping I won't need anything > after I have lost some of this weight! > > Marti in Michigan Hi Marti, I also am having a lot of arthritis pain my surgery date is 6/2/00. I ask Dr. R. and he told me it was ok to take tylenol. I got the arthritis strength and it works well. I'm not sure if you can take it after surgery. He also said I could take celebrax. Good Luck! Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 My husband Rick also has bad arthritus. He was one very sore puppy prior to surgery. He is two weeks post op and has no pain. One of your perscriptions coming out of the hospital is Viox. I don't know if this is the reason or the surgery. Rick says he is feeling twenty years younger already. So hopefully you won't need anything after surgery except what doctor R gives you. Good Luck! Janet Armour MGB 5/29/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2000 Report Share Posted May 31, 2000 In a message dated 5/31/2000 7:58:54 AM Eastern Daylight Time, armr69@... writes: << Rick says he is feeling twenty years younger already. So hopefully you won't need anything after surgery except what doctor R gives you. Good Luck! Janet Armour MGB 5/29/00 >> Janet I'm glad to see you back posting and that you are evidentially doing well!!!!! Wanting to be on the other side, Cathy in Lenoir, NC Patient Info Emailed on 5/2/00 BMI 42 " A Journey Of A Thousand Miles Begins With A Single Step! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 When you receive Remicade for Arthritis is it because the Sarcoid is producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know if anyone is using Human Growth Hormone? What is the best combination of drugs for neurosarcoid that is affecting the peripheral nerves? I am having more and more difficulting wallking. Thanks, Barb, I'm on Remicade because of my pulmonary sarcoidosis. I'm in Stage III pulm sarc-- and am developing pulmonary hypertension. I have only 48% functioning lung--and yeah, my sats are at 95% +-- which is up from 84% without the Remicade. The best part is that it has helped with the Sarcoid Induced Arthritis--which is in the full length of my spine, neck, and extremities. My thumbs had been "frozen" to the palms of my hands, and after the first infusion-- within one hour, I was able to straighten my thumbs out! Fortunately, I'd never stopped massaging the ligaments for my thumbs so that they could still function. Remicade is FDA approved for Rheumatoid Arthritis and for Psoriatic Arthritis--with over 750,000 people on it. It's been around for 7 or 8 yrs now. The sarcoidosis produces granulomas that are like calcium deposits in the joints and ligaments-- so we end up with both degenerative effects along with rheumatic like symptoms. It's like having bone spurs at every nerve point. and many of us have been diagnosed with bone spurs- only to find out that it is sarc granulomas. (My carpal tunnel was not ct- it is sarcoidosis in my wrists.) With ct- my neurologist decided not to do surgery as the granulomas wouldn't have responded and releasing the tendon there in my wrist wasn't going to help. For the neuropathy-- many of us are on Neurontin. It's good to start with a low dose and work up-- as to start off high too many people give up on it before they find out what helps. Plaquenil, Methotrexate, Imuran, Motrin and Flexeril are all good at helping with the inflammation processes. I'm on a combination of Plaquenil for lung inflammation, Methotrexate for immunosuppression and to make sure i don't develop antibodies against the Remicade-- it also helps with the systemic inflammation. The Remicade has helped with my lungs, eyes, and bone and arthritic pains. I use 800mg of Motrin up to 3x day, and Flexeril 10mg at night--so that the hard muscles of my back (which is a sign of NS and for years was dx'd as fibromyalgia) can relax a bit so that I can sleep for a while anyhow. I also take Effexor XR so that both the depression as well as the seratonin levels stay level-- and that helps keep my pain down. As I've said many times-- watching my blood sugar (I am diabetic- thank you prednisone) and watching my water intake--drink more!-- has made a huge difference in my neuropathy. MSM powder (there's a bunch of stuff in the ARCHIVES) will explain this stuff. But it's a natural mineral we should have--and has been engineered out of our foods- and what a difference it makes. Hope this helps, Tracie NS Co-owner//moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2006 Report Share Posted July 5, 2006 When you receive Remicade for Arthritis is it because the Sarcoid is producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know if anyone is using Human Growth Hormone? What is the best combination of drugs for neurosarcoid that is affecting the peripheral nerves? I am having more and more difficulting wallking. Thanks, Barb, I'm on Remicade because of my pulmonary sarcoidosis. I'm in Stage III pulm sarc-- and am developing pulmonary hypertension. I have only 48% functioning lung--and yeah, my sats are at 95% +-- which is up from 84% without the Remicade. The best part is that it has helped with the Sarcoid Induced Arthritis--which is in the full length of my spine, neck, and extremities. My thumbs had been "frozen" to the palms of my hands, and after the first infusion-- within one hour, I was able to straighten my thumbs out! Fortunately, I'd never stopped massaging the ligaments for my thumbs so that they could still function. Remicade is FDA approved for Rheumatoid Arthritis and for Psoriatic Arthritis--with over 750,000 people on it. It's been around for 7 or 8 yrs now. The sarcoidosis produces granulomas that are like calcium deposits in the joints and ligaments-- so we end up with both degenerative effects along with rheumatic like symptoms. It's like having bone spurs at every nerve point. and many of us have been diagnosed with bone spurs- only to find out that it is sarc granulomas. (My carpal tunnel was not ct- it is sarcoidosis in my wrists.) With ct- my neurologist decided not to do surgery as the granulomas wouldn't have responded and releasing the tendon there in my wrist wasn't going to help. For the neuropathy-- many of us are on Neurontin. It's good to start with a low dose and work up-- as to start off high too many people give up on it before they find out what helps. Plaquenil, Methotrexate, Imuran, Motrin and Flexeril are all good at helping with the inflammation processes. I'm on a combination of Plaquenil for lung inflammation, Methotrexate for immunosuppression and to make sure i don't develop antibodies against the Remicade-- it also helps with the systemic inflammation. The Remicade has helped with my lungs, eyes, and bone and arthritic pains. I use 800mg of Motrin up to 3x day, and Flexeril 10mg at night--so that the hard muscles of my back (which is a sign of NS and for years was dx'd as fibromyalgia) can relax a bit so that I can sleep for a while anyhow. I also take Effexor XR so that both the depression as well as the seratonin levels stay level-- and that helps keep my pain down. As I've said many times-- watching my blood sugar (I am diabetic- thank you prednisone) and watching my water intake--drink more!-- has made a huge difference in my neuropathy. MSM powder (there's a bunch of stuff in the ARCHIVES) will explain this stuff. But it's a natural mineral we should have--and has been engineered out of our foods- and what a difference it makes. Hope this helps, Tracie NS Co-owner//moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Hi Barb, Back when they first started using Remicade for sarc , but insurance wasn't covering it for sarcoidosis, my doctor put my diagnosis as Rheumotoid arthritis as the cause. SO that's what he thought the symptoms were closes to . Unfortunately, it didn't work out for me. After two transfusions, my blood didn't cope well and my white blood cell count went so low the drs. refused to adminster any type of immunosuppressant at all. Even with the methotrexate before that I was having issues with a low white blood cell count, so they had to keep a good eye on it. I was very disappointed because of all the good things I had heard about Remicade and how much it had helped so many people. To this day I wish I could take it. But the drs still disagree. Tracie or Rose could probably tell you the best combonation of drugs for periferephenal nerves. I think they both have issues with that . Good luck to you. I hope you find medications that will help you, Hugs, Debbie"barb J." wrote: A question for all, When you receive Remicade for Arthritis is it because the Sarcoid is producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know if anyone is using Human Growth Hormone? What is the best combination of drugs for neurosarcoid that is affecting the peripheral nerves? I am having more and more difficulting wallking. Thanks, Barb __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Hi Barb, Back when they first started using Remicade for sarc , but insurance wasn't covering it for sarcoidosis, my doctor put my diagnosis as Rheumotoid arthritis as the cause. SO that's what he thought the symptoms were closes to . Unfortunately, it didn't work out for me. After two transfusions, my blood didn't cope well and my white blood cell count went so low the drs. refused to adminster any type of immunosuppressant at all. Even with the methotrexate before that I was having issues with a low white blood cell count, so they had to keep a good eye on it. I was very disappointed because of all the good things I had heard about Remicade and how much it had helped so many people. To this day I wish I could take it. But the drs still disagree. Tracie or Rose could probably tell you the best combonation of drugs for periferephenal nerves. I think they both have issues with that . Good luck to you. I hope you find medications that will help you, Hugs, Debbie"barb J." wrote: A question for all, When you receive Remicade for Arthritis is it because the Sarcoid is producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know if anyone is using Human Growth Hormone? What is the best combination of drugs for neurosarcoid that is affecting the peripheral nerves? I am having more and more difficulting wallking. Thanks, Barb __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 Hi Barb, Back when they first started using Remicade for sarc , but insurance wasn't covering it for sarcoidosis, my doctor put my diagnosis as Rheumotoid arthritis as the cause. SO that's what he thought the symptoms were closes to . Unfortunately, it didn't work out for me. After two transfusions, my blood didn't cope well and my white blood cell count went so low the drs. refused to adminster any type of immunosuppressant at all. Even with the methotrexate before that I was having issues with a low white blood cell count, so they had to keep a good eye on it. I was very disappointed because of all the good things I had heard about Remicade and how much it had helped so many people. To this day I wish I could take it. But the drs still disagree. Tracie or Rose could probably tell you the best combonation of drugs for periferephenal nerves. I think they both have issues with that . Good luck to you. I hope you find medications that will help you, Hugs, Debbie"barb J." wrote: A question for all, When you receive Remicade for Arthritis is it because the Sarcoid is producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know if anyone is using Human Growth Hormone? What is the best combination of drugs for neurosarcoid that is affecting the peripheral nerves? I am having more and more difficulting wallking. Thanks, Barb __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hello Tracie...I am way behind on reading my messages and trying to catch up when I am across this one. What do you mean by " hard muscles " in your back? I have been struggling for a while with morning back pain in the large muscles between my shoulder blades and my lower back...and have been told it is Fibro. Are these the same muscle you are talking about? I too have CT, but I never realize that it could be from the Sarc nor has anyone mentioned it. I now am dealing with Platar Fasciitis...is this more granduloma too? I am thankful that I am on the remicade...this last treatment left me very tired for about a week, but my left eye is showing no inflamation and the right is very little. So the iritis is settling down a lot. I am still having the swelling in my upper inner eye lid. Have wondered about seeing an ENT about it..what do you think? My neuro systems are greatly inproved. I see the Neurologist on Thursday for a check up and an wondering what he will say. He has talked about NS and Multi system Sarcoidis but has never wanted to give me that dx. Since the Remicade has shown such great improvement I hope he will see the light now...but doubt it Thanks again for posting all the great information you do. I copy and paste it into my files and refer back to it often. TTFN Ruth > > In a message dated 7/5/06 7:05:03 PM Pacific Daylight Time, statpdq@... > writes: > > > > When you receive Remicade for Arthritis is it because the Sarcoid is > > producing symptoms of Rheumatoid Arthritis or Degenerative Arthritis? Do you know > > if anyone is using Human Growth Hormone? What is the best combination of drugs > > for neurosarcoid that is affecting the peripheral nerves? I am having more > > and more difficulting wallking. > > Thanks, > > > > Barb, > I'm on Remicade because of my pulmonary sarcoidosis. I'm in Stage III pulm > sarc-- and am developing pulmonary hypertension. I have only 48% functioning > lung--and yeah, my sats are at 95% +-- which is up from 84% without the > Remicade. > The best part is that it has helped with the Sarcoid Induced Arthritis--which > is in the full length of my spine, neck, and extremities. My thumbs had been > " frozen " to the palms of my hands, and after the first infusion-- within one > hour, I was able to straighten my thumbs out! Fortunately, I'd never stopped > massaging the ligaments for my thumbs so that they could still function. > Remicade is FDA approved for Rheumatoid Arthritis and for Psoriatic > Arthritis--with over 750,000 people on it. It's been around for 7 or 8 yrs now. > The sarcoidosis produces granulomas that are like calcium deposits in the > joints and ligaments-- so we end up with both degenerative effects along with > rheumatic like symptoms. It's like having bone spurs at every nerve point. and > many of us have been diagnosed with bone spurs- only to find out that it is > sarc granulomas. (My carpal tunnel was not ct- it is sarcoidosis in my wrists.) > With ct- my neurologist decided not to do surgery as the granulomas wouldn't > have responded and releasing the tendon there in my wrist wasn't going to > help. > For the neuropathy-- many of us are on Neurontin. It's good to start with a > low dose and work up-- as to start off high too many people give up on it > before they find out what helps. > Plaquenil, Methotrexate, Imuran, Motrin and Flexeril are all good at helping > with the inflammation processes. > I'm on a combination of Plaquenil for lung inflammation, Methotrexate for > immunosuppression and to make sure i don't develop antibodies against the > Remicade-- it also helps with the systemic inflammation. The Remicade has helped > with my lungs, eyes, and bone and arthritic pains. > I use 800mg of Motrin up to 3x day, and Flexeril 10mg at night--so that the > hard muscles of my back (which is a sign of NS and for years was dx'd as > fibromyalgia) can relax a bit so that I can sleep for a while anyhow. I also take > Effexor XR so that both the depression as well as the seratonin levels stay > level-- and that helps keep my pain down. > As I've said many times-- watching my blood sugar (I am diabetic- thank you > prednisone) and watching my water intake--drink more!-- has made a huge > difference in my neuropathy. > MSM powder (there's a bunch of stuff in the ARCHIVES) will explain this > stuff. But it's a natural mineral we should have--and has been engineered out of > our foods- and what a difference it makes. > > Hope this helps, > Tracie > NS Co-owner//moderator > Quote Link to comment Share on other sites More sharing options...
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