Re: Anyone with experience with Remicade??

[Guest guest]

I have been on the prednisone treatments since January of this year. I have gained over 30 lbs in that time. My initial IVs were 3 days in a row in January and now I have had the monthly. We tried to go 5 weeks this time between IVs and it did not work so I am back to every 4 weeks. I had extreme exhaustion this past week and sarcoid nodules were starting to pop out in my knees. They always do when I am under extreme stress. My job is off the charts now and doing the work of 5 people is constant multtasking and changing that task every few seconds. I know he was talking about taking me down to 6 hrs but he is afraid I will try to do 8 in 6 as he is afraid of a relapse. I am just going to have to get 9 hrs of sleep and give up some projects here around the house I guess which is hard to do for those of you who are type As. I have also had an initial appointment with a spiritual and emotional healer who knows all about prednisone, vasculitis, toxic environments and she is going to guide me through a lot of issues to help me overcome this hump. She has been through the prednisone route. She even told me I might have to go on mono meals where you just eat one thing if your system is fighting everything or eat only certain things together. We just had carpeting installed in segments over weeks and the fumes between that and paint are awful so she suggested a desktop purifier and to let my manager know why just to protect myself physically as well as if something happens to me as I work in HR.

I have been doing a lot of projects with new carpeting, painting, acrylic sealers, wood floors in my house in fall when this episode hit and she suggested if I have more new projects in the house to create a room in my house where I can go while this is being done ie., bedroom with room purifiers and low toxicity so I have a safe haven to go where it is not toxic which was a good suggestion.

So my first real appointment with her is Tuesday for guided imagery. We had our first appointment as an intake session. So this shall be interesting.

KatGet a sneak peek of the all-new AOL.com.

[Guest guest]

, there are sooooo many of us here with the same

problem as you concerning the weight and the hair loss.

I have been trying to lose my weight for over ten years

now --- since the first dose of prednisone and it is just

not possible as far as I can see. I was always really

skinny up until I started the prednisone, but gained 60

lbs in two months on it and have not been able to lose

it. Always before, I could miss a meal and lose anywhere

from 3 to 5 pounds.......and that is the truth! I am 5'6"

and normally weighed 115 to 120 lbs and now I way

174. I sometimes go down to 168 but then it is right

back up to 174! Very frustrating........ I have been off

the prednisone for about 6 months now.......... good luck

with your weight. By the way, my hair is beginning to

grow back now........:-)

Hugs,

Darlene

NS Co-Owner/Moderator

Anyone with experience with Remicade??

Hello,I have had neursarcoidosis sinced 1999 but was not diagnosed unitl 2003. Any way on with my question. I have been getting IV remicade since may. It seems to hold the symptoms at bay, but i can't seem to get off of the steroids completely. I have a couple of questions about the side effects of remicade. I am starting to lose my hair and i can't seem to lose any weight. Does any one know if either one of those might be a side effect of the remicade? I was on methotrexate but, now i am not and i was just beging to grow some hair back on my head. But then this morning i had that dredful hand full of hair fall out as i was washing my hair. I need to get some of this steroid weight off but it just wont go. I watch what i eat and i go to water arobics twice a week. I know i will feel better if i can get some of the weight off but it just wont budge. I am down to 15mg's of predisone and that's a cake walk compared to the higher doeses. Any coments or advise will be greatly appreciated.Huggs and best wishes to all of youkaren

[Guest guest]

, there are sooooo many of us here with the same

problem as you concerning the weight and the hair loss.

I have been trying to lose my weight for over ten years

now --- since the first dose of prednisone and it is just

not possible as far as I can see. I was always really

skinny up until I started the prednisone, but gained 60

lbs in two months on it and have not been able to lose

it. Always before, I could miss a meal and lose anywhere

from 3 to 5 pounds.......and that is the truth! I am 5'6"

and normally weighed 115 to 120 lbs and now I way

174. I sometimes go down to 168 but then it is right

back up to 174! Very frustrating........ I have been off

the prednisone for about 6 months now.......... good luck

with your weight. By the way, my hair is beginning to

grow back now........:-)

Hugs,

Darlene

NS Co-Owner/Moderator

Anyone with experience with Remicade??

Hello,I have had neursarcoidosis sinced 1999 but was not diagnosed unitl 2003. Any way on with my question. I have been getting IV remicade since may. It seems to hold the symptoms at bay, but i can't seem to get off of the steroids completely. I have a couple of questions about the side effects of remicade. I am starting to lose my hair and i can't seem to lose any weight. Does any one know if either one of those might be a side effect of the remicade? I was on methotrexate but, now i am not and i was just beging to grow some hair back on my head. But then this morning i had that dredful hand full of hair fall out as i was washing my hair. I need to get some of this steroid weight off but it just wont go. I watch what i eat and i go to water arobics twice a week. I know i will feel better if i can get some of the weight off but it just wont budge. I am down to 15mg's of predisone and that's a cake walk compared to the higher doeses. Any coments or advise will be greatly appreciated.Huggs and best wishes to all of youkaren

[Guest guest]

I have a question.If you don't have insurance, how much does a months supply of remicade, prednisone, etc. cost?

[Guest guest]

I have a question.If you don't have insurance, how much does a months supply of remicade, prednisone, etc. cost?

[Guest guest]

My prednisone IV (1000 Mg of solumedrol) once a month costs are under $400 for the drug and nurse who administers and then I see my doctor which is $212. My fee with insurance coverage then is about $55 with insurance payments.

KatGet a sneak peek of the all-new AOL.com.

[Guest guest]

Hi ,It is so hard to take prednisone wt off. I've also been hypothyroid for 17 yrs so that doesn't help I'm sure. I have gained over a 100lbs in the 3 yrs I've been on the pred. It's hard to believe I ever weighed 135! Blessings,Beckykap2569 wrote: Hello, I have had neursarcoidosis sinced 1999 but was not diagnosed unitl 2003. Any way on with my question. I have been getting IV remicade since may. It seems to hold the symptoms at bay, but i can't seem to get off of the steroids

completely. I have a couple of questions about the side effects of remicade. I am starting to lose my hair and i can't seem to lose any weight. Does any one know if either one of those might be a side effect of the remicade? I was on methotrexate but, now i am not and i was just beging to grow some hair back on my head. But then this morning i had that dredful hand full of hair fall out as i was washing my hair. I need to get some of this steroid weight off but it just wont go. I watch what i eat and i go to water arobics twice a week. I know i will feel better if i can get some of the weight off but it just wont budge. I am down to 15mg's of predisone and that's a cake walk compared to the higher doeses. Any coments or advise will be greatly appreciated. Huggs and best wishes to all of you karen

Luggage? GPS? Comic books?

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[Guest guest]

My prednisone 1000 mg is an IV but I also take a pill of prednisone every day as well too. I was on 60 mg for 2 months and then started reducing in March and now I am finally down to 12 mg.

KatGet a sneak peek of the all-new AOL.com.

[Guest guest]

Thanks for the information but I have always kept my windows closed and the central AC on as my allergist told me to keep the windows closed. When they work on a floor they do open up the windows in that room and put fans on. But essentially I never open up my windows for anything.Get a sneak peek of the all-new AOL.com.

[Guest guest]

Are these drugs IVs? My God, that is really expensive. Are any of them non-IVs? I have been trying to figure out what doctor to go to but if I am going to have to get IV anything that is really going to make the logistics difficult because the best doctors are not where I live, they are in the big city.. And I bet they are very expensive.. But my primary care doctor, although means well, is SOOO slow about everything and totally clueless about sarc. I mean really clueless..

My prednisone IV (1000 Mg of solumedrol) once a month costs are under $400 for the drug and nurse who administers and then I see my doctor which is $212. My fee with insurance coverage then is about $55 with insurance payments.

KatKat, I also wanted to add that all those solvents will end up giving you MCS if you don't watch out which is something many of we mold victims end up with.. You become sick from chemicals and you cant go into a lot of situations because they make you ill.. Its just common sense to do the best you can to minimize yor exposure to solvents and these plastics duing their venting, etc.. Read the labels.. they often tell you to do that, DONT THEY?

[Guest guest]

Kat, its a very good suggestion, BUT 'room purifiers' (I'm assuming you mean a big HEPA air filter? NOT one of those toxic ozone generators or ionizers which are BAD for you) are designed to remove particulate gunk from the air. Even activated charcoal filters can only remove a very limited amount of VOCs like the fumes from plastics, paints, solvents, etc. Many of those fumes can give you cancer, damage your kidneys, liver, etc. At the very least they will send your inflammatory biomarkers through the roof which will make it very hard for your body to fight off your sarcoidosis..

What you should do with this room is make it a completely separate air system in there and keep it positively pressurized relative to the rest of the building (the part that is being worked on)The wsy to do that is to put a fan in the window blowing fresh air from outside in and don't turn it off, at all.. and keep the door to the rest of the building shut except for maybe a crack to let the air that is coming in the window out (and keep it fresh by keeping airflow..)

If there isn't a door you can shut, get some plastic sheeting and create a barrier using duct tape to seal around the walls.. then make a door by having two sheets hang down with weights on the bottom of them, at the floor.. use a fan with a high enough volume to ensure that the air in that room is fresh and stay in there... Those fumes will ruin your health.. seriously..

>I have been doing a lot of projects with new carpeting, painting, acrylic sealers, wood floors in my house in fall when this episode hit and she suggested if I have more new projects in the house to create a room in my house where I can go while this is being done ie., bedroom with room purifiers and low toxicity so I have a safe haven to go where it is not toxic which was a good suggestion.

[Guest guest]

Actualy, maybe I didn't make this clear.. HEPA filters can remove dust

and pollen particles and even the larger mold particles.. (the bigger

mold particles, like spores, but unfortunately, the smallest and most

toxic mold particles - the ones that go the deepest into your lungs-

even HEPA filters cant remove - recent research by Dr. Straus at

Texas Tech shows that..)

but they will do absolutely nothing to remove FUMES from air.. nothing, zilch...

so you need fresh air.. air from the upwind side of your building,

preferably.. not air that is filled with the fumes..