Re: Reducing Prednisone to Tracie

[Guest guest]

Thanx for getting back to me. At this time, the sarc is affecting my skin, joints and lungs. I'm hoping the plaquenil will help. Were you ever on prednisone? (that may be a stupid question) What does the methrotrexate and remicade treat? I'm hoping the plaquenil helps my lungs. I went swimming last night. It was HILARIOUS. I used to be a good swimmer, but in the past few years, my swimming has only consisted of occasional dips during the summer or while on vacation. I couldn't even swim 2 consecutive laps without my lungs feeling like they were going to explode. I suck! I found the whole experience to be funny as heck. Hey, if you can't laugh at yourself... How are you doing? I've been away from the group for a hot minute. Naa Koshietiodaat@... wrote: . Now that I am down to 10 mg he wants to add Plaquenil. I've done some research on Plaquenil, but I'd like to know what others' experience have been on the drug.Naa,Plaquenil has helped my breathing alot. It's part of the triad of meds I'm on --Plaquenil, Methotrexate and Remicade. I wasn't sure how much it was helping, until they took it away--and it does make a big

difference.It's shown in trials to help the lungs, but not the other body systems as much. As far as side effects-- I haven't had any problems with it.Take care,TracieNS Co-owner/moderator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

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[Guest guest]

At this time, the sarc is affecting my skin, joints and lungs. I'm hoping the plaquenil will help. Were you ever on prednisone? (that may be a stupid question) What does the methrotrexate and remicade treat? I'm hoping the plaquenil helps my lungs. I

I spent 2 1/2 yrs on prednisone, starting at 80mg a day, weaning off over the 2 1/2 yrs. Then I was on low dose (20mg) for a couple of yrs--then went off it--was in "remission" for 5 yrs, then the sarc came back with a vengence. My orig pulm had told me that if the sarc came back-- to NOT let them put me on pred-- I was "no longer a steroid candidate" to treat the sarc.

That pulm had moved away, and the new guy in town insisted on Pred. at 60mg every other day-- and it took 15 months to wean off. The sarc had a hayday-- and was totally systemic by then-- and so I went on to Imuran, then Arava, then to Plaquenil, then we added the MTX--and still the neuro stuff was getting worse.

The Plaquenil is good for lungs, the Mtx is good for the systemic inflammation, and the Remicade has been a wonder drug for the mental confusion, my breathing, and the sarcoid induced arthritis. None of them has helped with the neuropathy-- but that for me seems to be related more to the diabetes I've developed due to the years on the prednisone. Also, my neuropathy is definately related to dehydration. If I don't get enough fluids down-- the small nerve fiber neuropathy (my skin feels like it's on fire with just clothing touching it) as well as the peripheral neuropathy (I honestly type these emails twice- once going forward, once backspacing to hit the keys I thought I hit the first time- because my hands are so numb) so needless to say, I'm learning to watch my sweets- instead of eating them, and drink plenty of teas and water.

Naa- go to WWW.ARTHRITIS.ORG and open the drug section-- it goes over all the meds, and what classes they're in-- BRM's, DMARD's--etc-- and it will explain how they work. I have a copy of the magazine that I open daily when I'm answering emails-- it's that good a reference.

As for me-- I'm struggling this year-- I've lost 6 very close friends and "surrogate" mom's-- and it's been hard emotionally. We've had my son's girlfriend living with us-- and she has a major alchohol problem-- that has taken all our energy. (I'm hoping this is the weekend she moves out.)

Physically I'm doing better than I have in a long time-- but it's not what I picture myself being able to do-- but I'm not sure that I know what I do picture myself doing-- so it's been a daily lesson in letting go, and accepting what is.

Some days, I think I'm ok, and then reality hits.

Right now, I'm just checking in off and on with the group, so that I can regroup myself, and find my center again. Once I get myself "regrounded" I'll be back around more.

Thank you for asking,

Love to you,

Tracie

NS Co-owner/moderator

[Guest guest]

At this time, the sarc is affecting my skin, joints and lungs. I'm hoping the plaquenil will help. Were you ever on prednisone? (that may be a stupid question) What does the methrotrexate and remicade treat? I'm hoping the plaquenil helps my lungs. I

I spent 2 1/2 yrs on prednisone, starting at 80mg a day, weaning off over the 2 1/2 yrs. Then I was on low dose (20mg) for a couple of yrs--then went off it--was in "remission" for 5 yrs, then the sarc came back with a vengence. My orig pulm had told me that if the sarc came back-- to NOT let them put me on pred-- I was "no longer a steroid candidate" to treat the sarc.

That pulm had moved away, and the new guy in town insisted on Pred. at 60mg every other day-- and it took 15 months to wean off. The sarc had a hayday-- and was totally systemic by then-- and so I went on to Imuran, then Arava, then to Plaquenil, then we added the MTX--and still the neuro stuff was getting worse.

The Plaquenil is good for lungs, the Mtx is good for the systemic inflammation, and the Remicade has been a wonder drug for the mental confusion, my breathing, and the sarcoid induced arthritis. None of them has helped with the neuropathy-- but that for me seems to be related more to the diabetes I've developed due to the years on the prednisone. Also, my neuropathy is definately related to dehydration. If I don't get enough fluids down-- the small nerve fiber neuropathy (my skin feels like it's on fire with just clothing touching it) as well as the peripheral neuropathy (I honestly type these emails twice- once going forward, once backspacing to hit the keys I thought I hit the first time- because my hands are so numb) so needless to say, I'm learning to watch my sweets- instead of eating them, and drink plenty of teas and water.

Naa- go to WWW.ARTHRITIS.ORG and open the drug section-- it goes over all the meds, and what classes they're in-- BRM's, DMARD's--etc-- and it will explain how they work. I have a copy of the magazine that I open daily when I'm answering emails-- it's that good a reference.

As for me-- I'm struggling this year-- I've lost 6 very close friends and "surrogate" mom's-- and it's been hard emotionally. We've had my son's girlfriend living with us-- and she has a major alchohol problem-- that has taken all our energy. (I'm hoping this is the weekend she moves out.)

Physically I'm doing better than I have in a long time-- but it's not what I picture myself being able to do-- but I'm not sure that I know what I do picture myself doing-- so it's been a daily lesson in letting go, and accepting what is.

Some days, I think I'm ok, and then reality hits.

Right now, I'm just checking in off and on with the group, so that I can regroup myself, and find my center again. Once I get myself "regrounded" I'll be back around more.

Thank you for asking,

Love to you,

Tracie

NS Co-owner/moderator

[Guest guest]

At this time, the sarc is affecting my skin, joints and lungs. I'm hoping the plaquenil will help. Were you ever on prednisone? (that may be a stupid question) What does the methrotrexate and remicade treat? I'm hoping the plaquenil helps my lungs. I

I spent 2 1/2 yrs on prednisone, starting at 80mg a day, weaning off over the 2 1/2 yrs. Then I was on low dose (20mg) for a couple of yrs--then went off it--was in "remission" for 5 yrs, then the sarc came back with a vengence. My orig pulm had told me that if the sarc came back-- to NOT let them put me on pred-- I was "no longer a steroid candidate" to treat the sarc.

That pulm had moved away, and the new guy in town insisted on Pred. at 60mg every other day-- and it took 15 months to wean off. The sarc had a hayday-- and was totally systemic by then-- and so I went on to Imuran, then Arava, then to Plaquenil, then we added the MTX--and still the neuro stuff was getting worse.

The Plaquenil is good for lungs, the Mtx is good for the systemic inflammation, and the Remicade has been a wonder drug for the mental confusion, my breathing, and the sarcoid induced arthritis. None of them has helped with the neuropathy-- but that for me seems to be related more to the diabetes I've developed due to the years on the prednisone. Also, my neuropathy is definately related to dehydration. If I don't get enough fluids down-- the small nerve fiber neuropathy (my skin feels like it's on fire with just clothing touching it) as well as the peripheral neuropathy (I honestly type these emails twice- once going forward, once backspacing to hit the keys I thought I hit the first time- because my hands are so numb) so needless to say, I'm learning to watch my sweets- instead of eating them, and drink plenty of teas and water.

Naa- go to WWW.ARTHRITIS.ORG and open the drug section-- it goes over all the meds, and what classes they're in-- BRM's, DMARD's--etc-- and it will explain how they work. I have a copy of the magazine that I open daily when I'm answering emails-- it's that good a reference.

As for me-- I'm struggling this year-- I've lost 6 very close friends and "surrogate" mom's-- and it's been hard emotionally. We've had my son's girlfriend living with us-- and she has a major alchohol problem-- that has taken all our energy. (I'm hoping this is the weekend she moves out.)

Physically I'm doing better than I have in a long time-- but it's not what I picture myself being able to do-- but I'm not sure that I know what I do picture myself doing-- so it's been a daily lesson in letting go, and accepting what is.

Some days, I think I'm ok, and then reality hits.

Right now, I'm just checking in off and on with the group, so that I can regroup myself, and find my center again. Once I get myself "regrounded" I'll be back around more.

Thank you for asking,

Love to you,

Tracie

NS Co-owner/moderator