Re: Question about joint pain

[Guest guest]

Bobbie,

As we all know- we do get "sarcoid-induced arthritis." It can hit anywhere in the body.

Since xrays didn't show any fracture or break, then it could be that you do have a nasty sprain. Does it respond to heat and ice.

(Remember that ice takes out inflammation, heat will increase inflammation- yet it helps sore muscles.)

Generally Remicade doesn't cause more joint pain--in fact it has great results and is FDA approved for rheumatoid arthritis. How often do you get your infusions?

I'm sure Dr. Baughman will get it sorted out- and hopefully talk to your Rheumi about the pain. What else are you on? Are you still taking other anti-inflammatories with the Remicade?

Do they have you on Methotrexate and Folic Acid? You need these two with the Remicade so that you don't build anti-bodies against the remicade, and the folic acid keeps your bones from becoming brittle due to the drugs.

I know I haven't been able to give you much information. Let us know what other stuff they have you on-- it could be as simple as the sprain, or it could be a reaction to the combination of meds you're on. (Your pharmacist could put that puzzle piece in place for you.)

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Bobbie,

As we all know- we do get "sarcoid-induced arthritis." It can hit anywhere in the body.

Since xrays didn't show any fracture or break, then it could be that you do have a nasty sprain. Does it respond to heat and ice.

(Remember that ice takes out inflammation, heat will increase inflammation- yet it helps sore muscles.)

Generally Remicade doesn't cause more joint pain--in fact it has great results and is FDA approved for rheumatoid arthritis. How often do you get your infusions?

I'm sure Dr. Baughman will get it sorted out- and hopefully talk to your Rheumi about the pain. What else are you on? Are you still taking other anti-inflammatories with the Remicade?

Do they have you on Methotrexate and Folic Acid? You need these two with the Remicade so that you don't build anti-bodies against the remicade, and the folic acid keeps your bones from becoming brittle due to the drugs.

I know I haven't been able to give you much information. Let us know what other stuff they have you on-- it could be as simple as the sprain, or it could be a reaction to the combination of meds you're on. (Your pharmacist could put that puzzle piece in place for you.)

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Bobbie,

As we all know- we do get "sarcoid-induced arthritis." It can hit anywhere in the body.

Since xrays didn't show any fracture or break, then it could be that you do have a nasty sprain. Does it respond to heat and ice.

(Remember that ice takes out inflammation, heat will increase inflammation- yet it helps sore muscles.)

Generally Remicade doesn't cause more joint pain--in fact it has great results and is FDA approved for rheumatoid arthritis. How often do you get your infusions?

I'm sure Dr. Baughman will get it sorted out- and hopefully talk to your Rheumi about the pain. What else are you on? Are you still taking other anti-inflammatories with the Remicade?

Do they have you on Methotrexate and Folic Acid? You need these two with the Remicade so that you don't build anti-bodies against the remicade, and the folic acid keeps your bones from becoming brittle due to the drugs.

I know I haven't been able to give you much information. Let us know what other stuff they have you on-- it could be as simple as the sprain, or it could be a reaction to the combination of meds you're on. (Your pharmacist could put that puzzle piece in place for you.)

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi Tracie,

Thanks so much for responding. I feel guilty posting anything because

I only participate when I need an answer- not to offer support to

others. That pretty much sums up my life right now. I am doing all I

can do to hang on and don't have alot to spare. I am sorry for that

and I do appreciate all that this group offers and the work that the

moderators put in to it. I also miss Aisha alot and have a hard time

dealing with her not being in this group. I feel like I personally

got dumped. Anyways...

I have tapered down to 10mg of prednisone and 5mg IM of MTX. I was on

25 mg IM of MTX which I think beat the sarc symptoms back into

submission but turned me into a neauseated noodle brain. I get 8

vials of Remicade every 5 weeks. I weigh 160 # so I think it is a

little bit more than the 5mg per kg dose. I started taking provigil

to try to deal with the fatigue and " chemo brain " . I stopped taking

the Folic Acid I forget why but I think it was making me sick.

Ice definately helps my hip. I read one of your old posts about pain

and you said you take MSM powder. I have some - so I'll start that

today.

I did hear back from Dr. Baughman and he said it could be a liesion

that may or may not show up on a bone scan or MRI. He suggested

increasing Remicade as my VIT D level is elevated and may indicate

increased sarc activity.

I have been clean and sober for 20+ years and spent the first 15

years not even taking vitamins and rarely aspirin. I figure now my

pharmaceutical bill is close to 100,000 a year. I marvel at the

amount of fun I could have had with 100k to spend on recreational

drugs. I can't believe the crap I have injected, infused, inhaled,

swallowed and drank in the last 5 years- and not one of them gave me

that warm and fuzzy buzz. All of them make me fat stupid tired and

ill. Party on girl!

This could be a sprain. But I don't remember hurting it. It also

started out as a mild bother 4 weeks ago and has just gotten worse

and worse- other sprains I have had - I knew exactly how I did it and

they hurt like heck in the begining and then get better with time.

Also if I get up to go the bathroom - if I can stand the pain and

keep moving for a few minutes it gets better and I can walk with only

mild discomfort for a half hour or so and then I 'm back to the couch

with ice. The pain when I stand up is almost unbearable and it is

only fear of bedpans that gets me going. I have never had a sprain

that feels better once you get moving. - On the other hand even

though my Vit D levels are up and I feel like the sarcoid is taking

over my brain again most of my initial sarc symptoms have not

returned. It seems odd to me that it would come back as pain in a

joint I have never had problems with before.

Oh well- I guess I'll just keep icing and talk to my local Doctor

about Baughmans advice. Thanks for letting me vent a bit! Bobbie

>

> Bobbie,

>

> As we all know- we do get " sarcoid-induced arthritis. " It can hit

anywhere

> in the body.

> Since xrays didn't show any fracture or break, then it could be

that you do

> have a nasty sprain. Does it respond to heat and ice.

>

> (Remember that ice takes out inflammation, heat will increase

inflammation-

> yet it helps sore muscles.)

>

> Generally Remicade doesn't cause more joint pain--in fact it has

great

> results and is FDA approved for rheumatoid arthritis. How often do

you get your

> infusions?

>

> I'm sure Dr. Baughman will get it sorted out- and hopefully talk to

your

> Rheumi about the pain. What else are you on? Are you still taking

other

> anti-inflammatories with the Remicade?

>

> Do they have you on Methotrexate and Folic Acid? You need these

two with the

> Remicade so that you don't build anti-bodies against the remicade,

and the

> folic acid keeps your bones from becoming brittle due to the

drugs.

>

> I know I haven't been able to give you much information. Let us

know what

> other stuff they have you on-- it could be as simple as the sprain,

or it could

> be a reaction to the combination of meds you're on. (Your

pharmacist could put

> that puzzle piece in place for you.)

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Hi Tracie,

Thanks so much for responding. I feel guilty posting anything because

I only participate when I need an answer- not to offer support to

others. That pretty much sums up my life right now. I am doing all I

can do to hang on and don't have alot to spare. I am sorry for that

and I do appreciate all that this group offers and the work that the

moderators put in to it. I also miss Aisha alot and have a hard time

dealing with her not being in this group. I feel like I personally

got dumped. Anyways...

I have tapered down to 10mg of prednisone and 5mg IM of MTX. I was on

25 mg IM of MTX which I think beat the sarc symptoms back into

submission but turned me into a neauseated noodle brain. I get 8

vials of Remicade every 5 weeks. I weigh 160 # so I think it is a

little bit more than the 5mg per kg dose. I started taking provigil

to try to deal with the fatigue and " chemo brain " . I stopped taking

the Folic Acid I forget why but I think it was making me sick.

Ice definately helps my hip. I read one of your old posts about pain

and you said you take MSM powder. I have some - so I'll start that

today.

I did hear back from Dr. Baughman and he said it could be a liesion

that may or may not show up on a bone scan or MRI. He suggested

increasing Remicade as my VIT D level is elevated and may indicate

increased sarc activity.

I have been clean and sober for 20+ years and spent the first 15

years not even taking vitamins and rarely aspirin. I figure now my

pharmaceutical bill is close to 100,000 a year. I marvel at the

amount of fun I could have had with 100k to spend on recreational

drugs. I can't believe the crap I have injected, infused, inhaled,

swallowed and drank in the last 5 years- and not one of them gave me

that warm and fuzzy buzz. All of them make me fat stupid tired and

ill. Party on girl!

This could be a sprain. But I don't remember hurting it. It also

started out as a mild bother 4 weeks ago and has just gotten worse

and worse- other sprains I have had - I knew exactly how I did it and

they hurt like heck in the begining and then get better with time.

Also if I get up to go the bathroom - if I can stand the pain and

keep moving for a few minutes it gets better and I can walk with only

mild discomfort for a half hour or so and then I 'm back to the couch

with ice. The pain when I stand up is almost unbearable and it is

only fear of bedpans that gets me going. I have never had a sprain

that feels better once you get moving. - On the other hand even

though my Vit D levels are up and I feel like the sarcoid is taking

over my brain again most of my initial sarc symptoms have not

returned. It seems odd to me that it would come back as pain in a

joint I have never had problems with before.

Oh well- I guess I'll just keep icing and talk to my local Doctor

about Baughmans advice. Thanks for letting me vent a bit! Bobbie

>

> Bobbie,

>

> As we all know- we do get " sarcoid-induced arthritis. " It can hit

anywhere

> in the body.

> Since xrays didn't show any fracture or break, then it could be

that you do

> have a nasty sprain. Does it respond to heat and ice.

>

> (Remember that ice takes out inflammation, heat will increase

inflammation-

> yet it helps sore muscles.)

>

> Generally Remicade doesn't cause more joint pain--in fact it has

great

> results and is FDA approved for rheumatoid arthritis. How often do

you get your

> infusions?

>

> I'm sure Dr. Baughman will get it sorted out- and hopefully talk to

your

> Rheumi about the pain. What else are you on? Are you still taking

other

> anti-inflammatories with the Remicade?

>

> Do they have you on Methotrexate and Folic Acid? You need these

two with the

> Remicade so that you don't build anti-bodies against the remicade,

and the

> folic acid keeps your bones from becoming brittle due to the

drugs.

>

> I know I haven't been able to give you much information. Let us

know what

> other stuff they have you on-- it could be as simple as the sprain,

or it could

> be a reaction to the combination of meds you're on. (Your

pharmacist could put

> that puzzle piece in place for you.)

>

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

I feel guilty posting anything because

I only participate when I need an answer- not to offer support to

others. That pretty much sums up my life right now.

Bobbie, it sums up what alot of us feel from time to time. As far as missing Aisha-- all of us do. She (I hope is in a better place for her emotionally-) and that is a good thing.

Her leaving was not a personal assault on anyone, and it wasn't meant as abandonment. She needed to move on to get healthier.

At times, owning and moderating a group like this can drain you-- totally if you let it. It can also feed us-- if we choose.

As far as your meds, you NEED the folic acid! take it with food if it bothers your stomach and guts. All these meds deplete the B vitamins from our bones and body-- and these not only help regulate mood, but have a tremendous amount to do with pain control.

I'm surprised they still have you on MTX and the prednisone. I know you said that the MTX bothered your stomach-- again, can you take it with food- so that you have something to absorb it with.

They've found that 15mg a week does as much as it's going to do-- higher doses aren't a good thing. It's too hard on the liver (shots bypass the liver, so that is a good way to take it).

Remember that the prednisone sucks the calcium out of your body, and if your Vit D levels are high- it could be that your body is afraid that it's not going to get enough calcium, so it is hording what little bit you get in your diet.

Do you have problems with gall or kidney stones?

You might want to try to take a tablet or two of calcium/magnesium even tho the Vit D is high. (Calcium can't be properly absorbed without some D and Magnesium). Even a Tums or 2 may help with some of that pain. (It works for me. .)

The MSM powder is awesome also. Do start taking it, it's water soluble- so what your body doesn't need, you'll pee out.

Even tho you don't have the energy to give to others, don't feel like you can't reach out and get the help you need. It never fails that if you reach out, even if not giving- then you've opened the door for others to speak up, or start a dialogue that others need as well.

That is often the most important "gift of support" that you can do.

We're still here for you- Rose and Darlene, Debbie and I, and Ron are doing chats-- so there's still a huge amount of support. We're not abandoning anyone-- so stick your head out!

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

I feel guilty posting anything because

I only participate when I need an answer- not to offer support to

others. That pretty much sums up my life right now.

Bobbie, it sums up what alot of us feel from time to time. As far as missing Aisha-- all of us do. She (I hope is in a better place for her emotionally-) and that is a good thing.

Her leaving was not a personal assault on anyone, and it wasn't meant as abandonment. She needed to move on to get healthier.

At times, owning and moderating a group like this can drain you-- totally if you let it. It can also feed us-- if we choose.

As far as your meds, you NEED the folic acid! take it with food if it bothers your stomach and guts. All these meds deplete the B vitamins from our bones and body-- and these not only help regulate mood, but have a tremendous amount to do with pain control.

I'm surprised they still have you on MTX and the prednisone. I know you said that the MTX bothered your stomach-- again, can you take it with food- so that you have something to absorb it with.

They've found that 15mg a week does as much as it's going to do-- higher doses aren't a good thing. It's too hard on the liver (shots bypass the liver, so that is a good way to take it).

Remember that the prednisone sucks the calcium out of your body, and if your Vit D levels are high- it could be that your body is afraid that it's not going to get enough calcium, so it is hording what little bit you get in your diet.

Do you have problems with gall or kidney stones?

You might want to try to take a tablet or two of calcium/magnesium even tho the Vit D is high. (Calcium can't be properly absorbed without some D and Magnesium). Even a Tums or 2 may help with some of that pain. (It works for me. .)

The MSM powder is awesome also. Do start taking it, it's water soluble- so what your body doesn't need, you'll pee out.

Even tho you don't have the energy to give to others, don't feel like you can't reach out and get the help you need. It never fails that if you reach out, even if not giving- then you've opened the door for others to speak up, or start a dialogue that others need as well.

That is often the most important "gift of support" that you can do.

We're still here for you- Rose and Darlene, Debbie and I, and Ron are doing chats-- so there's still a huge amount of support. We're not abandoning anyone-- so stick your head out!

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Hello,

I wanted to tell you that I went through much the same thing you are

going through with your hip last September. I too was told it was

a sprain..and had no idea how it happened. I just woke up one

morning and couldn't put any weight on my right leg for the pain. I

was x rayed and it showed calcium build up on my hip joint. A Ortho

gave me an injection in my hip and that with ice,rest and crutches

helped a lot. I have had to have one more injection in January, but

since then it has been doing ok. Since I started on Remicade in May

it has gotten even better. Hope this helps

Ruth

>

> Hi All,

>

> I have been having odd aches and pains a week before each remicade

> infusion which I found suspicious but didn't worry about it. This

time

> though I am freaked. A week after my Remicade I started having hip

pain

> that has been getting progressively worse. Now four weeks into it

it is

> excrutiating. I had xrays yesterday and there was no fracture. My

> Chiropractor is treating it as a sprain. I find that hard to

believe.

> As always I suspect this life sucking illness. My Rheumatologist

is out

> until Monday and I haven't heard back from Dr. Baughman yet. So I

lie

> on the couch wondering if this is the next manifestation of

Sarcoid in

> my body and life as I know it is about to change yet again. Or

maybe it

> is unrelated and I need to be grateful and not worry so much. I

turn to

> the true experts my fellow Neurosarcodians....Bobbie

>

[Guest guest]

Hello,

I wanted to tell you that I went through much the same thing you are

going through with your hip last September. I too was told it was

a sprain..and had no idea how it happened. I just woke up one

morning and couldn't put any weight on my right leg for the pain. I

was x rayed and it showed calcium build up on my hip joint. A Ortho

gave me an injection in my hip and that with ice,rest and crutches

helped a lot. I have had to have one more injection in January, but

since then it has been doing ok. Since I started on Remicade in May

it has gotten even better. Hope this helps

Ruth

>

> Hi All,

>

> I have been having odd aches and pains a week before each remicade

> infusion which I found suspicious but didn't worry about it. This

time

> though I am freaked. A week after my Remicade I started having hip

pain

> that has been getting progressively worse. Now four weeks into it

it is

> excrutiating. I had xrays yesterday and there was no fracture. My

> Chiropractor is treating it as a sprain. I find that hard to

believe.

> As always I suspect this life sucking illness. My Rheumatologist

is out

> until Monday and I haven't heard back from Dr. Baughman yet. So I

lie

> on the couch wondering if this is the next manifestation of

Sarcoid in

> my body and life as I know it is about to change yet again. Or

maybe it

> is unrelated and I need to be grateful and not worry so much. I

turn to

> the true experts my fellow Neurosarcodians....Bobbie

>

[Guest guest]

Thank you Ruth and Tracie,

Hopefully I will get to talk to my local Dr. today.

I have started with the Folic Acid and the MSM. Ice is a real comfort

also. So is this group. Thank you. Bobbie

> >

> > Hi All,

> >

> > I have been having odd aches and pains a week before each

remicade

> > infusion which I found suspicious but didn't worry about it. This

> time

> > though I am freaked. A week after my Remicade I started having

hip

> pain

> > that has been getting progressively worse. Now four weeks into it

> it is

> > excrutiating. I had xrays yesterday and there was no fracture. My

> > Chiropractor is treating it as a sprain. I find that hard to

> believe.

> > As always I suspect this life sucking illness. My Rheumatologist

> is out

> > until Monday and I haven't heard back from Dr. Baughman yet. So I

> lie

> > on the couch wondering if this is the next manifestation of

> Sarcoid in

> > my body and life as I know it is about to change yet again. Or

> maybe it

> > is unrelated and I need to be grateful and not worry so much. I

> turn to

> > the true experts my fellow Neurosarcodians....Bobbie

> >

>