Re: inquiring minds want to know

[Guest guest]

Rose

I just got home from seeing my mom and am bunches of message behind but tonight I'm going to start with latest and work to oldest ha ha

I'm on methotrexate 20 mg a week and Prednisone 30 mg a day and 1200 mg neurontin at bedtime.

I can not say for sure how much the mx is doing for me because everytime I try to go off the Pred I start having lots of joint pain again and lots of fatigue. They want me to change to Remicade but I'm real chicken as I already have infections too often as far as I'm concerned.

I do not at this point have a problem with the mx but when I first started it I did have nausea and felt yucky.

The prednisone is not treating me well as I know have diabetes and of course the beautiful face. This trip on it I have not gained the 60 pounds that I did the first yr and one half that I was on prednisone. Fortunately when I did quit taking the prednisone the first time the weight came off with relative ease.

My husband can hardly stand to look at my face and my mother asked me to day why I just didn't stop taking the prednisone. She thinks I'm on entirely too many meds. I tried to reply nicely that I was not ready to give up yet

Both of them are heavy smokers with bad smokers cough and always smoke in front of me but I still love them. Go figure.

I've not been diagnosed with NS but have increasing symptoms. Had nerve conduction studies yesterday and MRIs of c-spine and l-spine today

Numbness pretty when it comes to needle pricks and sticks to at least mid thigh and sharp shooting nerve pain to top of thighs and now into arms. Feet severe neuropathy headaches and not dizziness but feel like I'm going to fall down or legs are going to go out from under me part of the time when I stand up.

Dr. Balkisson at National Jewish feels that Remicade will help pulmonary but who know it seems that every case of sarc or neurosarc is different. He thought that it would still keep my energy level up. But the stuff lasts in your system for 4 to 6 weeks what do you do if you have something go wrong to get it out.

My neurologist yesterday told me that the literature that she had read said that generally more than 900mg of Neurontin at one time is not absorbed. My internist had bumped me to 1200 at night. The neurologist drew blood for a Neurontin level but I don't have results and probably won't until next week.

How is your son and his fiancée?

Don't know much else right now don't even think I was probably much help.

Have the best day possible

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose

I just got home from seeing my mom and am bunches of message behind but tonight I'm going to start with latest and work to oldest ha ha

I'm on methotrexate 20 mg a week and Prednisone 30 mg a day and 1200 mg neurontin at bedtime.

I can not say for sure how much the mx is doing for me because everytime I try to go off the Pred I start having lots of joint pain again and lots of fatigue. They want me to change to Remicade but I'm real chicken as I already have infections too often as far as I'm concerned.

I do not at this point have a problem with the mx but when I first started it I did have nausea and felt yucky.

The prednisone is not treating me well as I know have diabetes and of course the beautiful face. This trip on it I have not gained the 60 pounds that I did the first yr and one half that I was on prednisone. Fortunately when I did quit taking the prednisone the first time the weight came off with relative ease.

My husband can hardly stand to look at my face and my mother asked me to day why I just didn't stop taking the prednisone. She thinks I'm on entirely too many meds. I tried to reply nicely that I was not ready to give up yet

Both of them are heavy smokers with bad smokers cough and always smoke in front of me but I still love them. Go figure.

I've not been diagnosed with NS but have increasing symptoms. Had nerve conduction studies yesterday and MRIs of c-spine and l-spine today

Numbness pretty when it comes to needle pricks and sticks to at least mid thigh and sharp shooting nerve pain to top of thighs and now into arms. Feet severe neuropathy headaches and not dizziness but feel like I'm going to fall down or legs are going to go out from under me part of the time when I stand up.

Dr. Balkisson at National Jewish feels that Remicade will help pulmonary but who know it seems that every case of sarc or neurosarc is different. He thought that it would still keep my energy level up. But the stuff lasts in your system for 4 to 6 weeks what do you do if you have something go wrong to get it out.

My neurologist yesterday told me that the literature that she had read said that generally more than 900mg of Neurontin at one time is not absorbed. My internist had bumped me to 1200 at night. The neurologist drew blood for a Neurontin level but I don't have results and probably won't until next week.

How is your son and his fiancée?

Don't know much else right now don't even think I was probably much help.

Have the best day possible

Pat

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose, I was on 25mg of Mtx for a year and it didn't do alot for me except make my hair very very thin. and I was taking 1mg of folic acid with it... as prescribed by my doctor, each and everyone of us is different and do better with different medications... The prednisone, I thought nearly killed me, it made my legs so heavy I couldn't walk and with 4+ edema you can't hardly walk... and along with the shortness of breath.. I thought I was gonna have a heart attack... I am currently on Imuran 50mg 3 tabs 1time aday.. and I'm doing better right now than I have... along with some neurotin for some nerve pain in my leg.. anyway.. just listen to your body.. and disscuss you options with your doctor... if what you are on right now isn't working tell him... and that you want another plan...

Love,

-- inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose, I was on 25mg of Mtx for a year and it didn't do alot for me except make my hair very very thin. and I was taking 1mg of folic acid with it... as prescribed by my doctor, each and everyone of us is different and do better with different medications... The prednisone, I thought nearly killed me, it made my legs so heavy I couldn't walk and with 4+ edema you can't hardly walk... and along with the shortness of breath.. I thought I was gonna have a heart attack... I am currently on Imuran 50mg 3 tabs 1time aday.. and I'm doing better right now than I have... along with some neurotin for some nerve pain in my leg.. anyway.. just listen to your body.. and disscuss you options with your doctor... if what you are on right now isn't working tell him... and that you want another plan...

Love,

-- inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose,

I just started Remicade and will have my second infusion tomorrow.

I chose Remicade over steroids and a couple of other treatments

because it had the least amount of side effects. So far, so good.

I had a few flue-like symptoms for a couple of day after my first

treatment. I'll keep you updated on my experience with Remicade.

Good Luck.

Cheryl

[Guest guest]

Rose,

I just started Remicade and will have my second infusion tomorrow.

I chose Remicade over steroids and a couple of other treatments

because it had the least amount of side effects. So far, so good.

I had a few flue-like symptoms for a couple of day after my first

treatment. I'll keep you updated on my experience with Remicade.

Good Luck.

Cheryl

[Guest guest]

Hi Rose. First of all I have systemic sarc, skin and joints and it also is affecting my neuro system, but they haven't confirmed that as of yet. I don't have pulmonary sarc. I started on MTX & folic acid last Sept. I take it on Sunday nights because it would make me sick for a day maybe two, usually weakness, body aches, nausea(dr. can give you something for that), headaches - just like the flu. It took a few months to actually notice any change. It did help a little with the arthralgias and fatigue and weakness and the night sweats and neuralgia pain ,but not enough. So in December when I couldn't stand it anymore and then the Rheumy talked about Remicade as being the next step. YOu still take the MTX with it, though. Anyway I do. It took me 3 mos. for the insurance co. to approve it, but they finally did and I got my first infusion in March. I had the same symptoms the day after the

Remicade as the day after MTX. But I was willing to go on and got the 2nd infusion 2 weeks later. I still hadn't felt any worth while effects, but they told me it takes anywhere from the first to the third even the fourth or fifth to feel the effects. The next infusion was supposed to be last week. But 4 days before I went in for my reg. followup with my rheumy and he did some bloodwork (they do it every 2 mos on a reg. basis). Two days later he calls me and says he has to stop all treatment for me cause my white blood cell count dropped to 2.4 and my immune system was TOO low. I have to stop the MTX and Remicade for 3 wks, then take another blood test . If the white blood cell count is up again, then I can resume treatment. But now a week and a half later I am feeling the old symptoms coming back. I didn't realize how much the MTX was helping, but Im afraid Im gonna slide back to how bad I felt last summer. I am starting to get

very anxious. Hopefully, I have to stick it out and my next blood test will be okay and I can resume the Remicade & MTX. (I asked if he thought it was the Remicade that affected the white blood cells and he says it was the MTX . He has seen it before in other people . All of a sudden it will drop.)

As for the Prednisone I had been off and on it since I was a kid for my asthma, that's what they used a lot back then. So I knew the side effects and such. I refused to go on it. ANd since I didn't have pulm. sarc the drs agreed. It would just be like a band aid if anything. Help for awhile, but as soon as I got off it would come right back. AIsha has told me that too.

As for your Neurontin, I am on it for the sarc headaches and the pains around my joints.

The neuro started me on 100 mg 3x day then slowly increased it to 400 mg 3x day until it was working. But he told me it could go up to 1200 mg a day if needed (usually that amt is for epeleptics).

So I don't know if this LONG post helps, I hope you talk to your dr and try something more effective. The least you can do is try, what have you got to lose? That was my attitude...... Good luck Rose. I hope this helps. Luv, Debbie T.Rose wrote:

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose, I am on 20mg of Methotrexate, 75mg of Imuran and back on Plaquenil 200mg twice a day.

Since I started the Methotrexate I had problems because of no Folic Acid now when I wash my hair, it falls into the drain.

I am now wearing a wig the same color it use to be about when I was 45 years old. At least I can get up, brush my hair lightly put my wig on and go.

I do not play around with color.

Sharon

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Thanks, Pat. That was helpful. I'm just on 10mg of Pred a day, because I looked & felt terrible at the higher dose. I was so swollen that my son didn't recognize me, it felt like my skin would pop, my heart rate was up. I don't know for sure it was the Pred, because at the same time I started tapering the Pred, I started taking a diuretic. Over the next couple of weeks I began to look & feel better. Brad & Kim are fine. They were addressing invitations yesterday. Brad, I'm proud to say, is not one of those guys who thinks it's all the bride's responsibility. Well, I have 184 more messages to go through. I haven't felt well for a couple of days and didn't get on the computer. Rose

inquiring minds want to know

Hi, guys. I read a lot of posts reporting the effects of different drugs on symptoms, but often there is nothing specific. Like, someone will say that MTX is helping their symptoms, but I don't know what those are. I'm considering trying Methotrexate or Remicade, but I'm not even sure what they're supposed to help. I think I read somewhere that Remicade wasn't much good for pulmonary sarc, but better for skin & neurosarc. I don't think I've seen anything about systemic symptoms, like fatigue & muscle weakness.

I'm still on Pred 10mg daily & Imuran 50mg 3 times a day. I don't feel a lot worse, but no better. Seem to have "slumps" every 2-3 weeks, with worse fatigue, then back to the usual fatigue. The neuropathic pain in my feet is getting worse; I don't know if I should ask for an increase in Neurontin for that. I'm on 600mg 3 times a day. I don't know what the highest safe dose is and I'd hate to top out too soon. Does that make sense to anyone?

Can some of you describe the symptoms that have responded to various drugs? I know everyone responds to drugs differently, but that would give me something to go on. Thanks for any input. Ramblin' Rose~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://health.groups.yahoo.com/group/Neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database