Re: To Fran Re Lung Infections

October 7, 2004

Dear Rene,

I feel so bad for you because I've been going through exactly the same

things you mentioned below. It is a horrible situation to be put in, but

stopping the prednisone it really hard to do especially with lung problems.

I never tried Remicade, so I can't comment on it, but I have no plans to try

it either. I tried Enbrel and immediately had a bad reaction after the 5th

injection. My glands were swollen and sore and I developed edema

everywhere. My lungs filled with fluid and I actually went into congestive

heart failure, when I've never had a heart problem before in my life. I was

sure that Enbrel caused the Congestive heart failure, but it could have been

the allergic reaction along with the prednisone. It's so hard to tell. I

stopped that one immediately, saw several heart specialists and was told I

had a mild heart dysfunction that shouldn't be too serious if I continue to

take water pills forever now. That's another pill that isn't the most fun

to take, but not as bad as prednisone.

Next I tried Humira, because my doctor was convinced it wouldn't bother my

heart. Instead after only 2 injections, I went into respiratory failure and

almost ended up in the hospital 3 times. It also seemed to bring back on

the CHF and I had edema again to deal with. That lung infection took forever

to get over. I had to go up to 60mg on prednisone and it still took several

weeks before I was able to walk without wheezing.

About 3 months later, I tried (with much fear) Arava. It's a pill form and

isn't the same type of medication the others are. I was still worried

though because it can cause respiratory infections as well. So far I've

been really lucky. I've been on it now for almost 9 weeks and so far (knock

on wood) I haven't had a problem with my lungs. I saw my lung specialist

just last week and she was really happy with my results. I'm down to 12.5mg

on the prednisone which is a real miracle. Before Arava I was never able to

go lower than 20mg or I simply couldn't walk at all with the PA.

I also saw an endocrinologist and I have developed Cushing's as well. I

will say since I've lowered the prednisone some of the side effects are

going away. What is strange though is when I first lower it, I always have

a big increase in symptoms. If I can hang in there long enough, they

usually go away and I feel better after a week. I recently tried to go to

10mg and had to stop and go back to 15mg for one day. It was real easy to

go back to 12.5 I'm happy to say. Since I've been on prednisone for 3 years

I've gained weight as well and had most of the side effects you mentioned.

Somehow I missed out on the peach fuzz..lol. I did have my skin turn bright

pink though, so I guess that is an even trade.

I hate to tell you not to try Enbrel or Humira or any of the other drugs as

they might be your answer. But I know if you are allergic to them, they can

be extremely serious with the side effects. I have no doubt if I had

ignored my side effects on Enbrel or Humira they could have killed me. Both

are really strong drugs and I guess that's why they have been so successful

for so many people. I looked into trying to see if there were studies done

on people being allergic to these drugs, but didn't find any. As far as I

know there aren't any tests you can take before to check out if you are

allergic. I wish they did have something like this.

I would tell your doctor you aren't comfortable trying either one of these

drugs unless you go into the hospital to be monitored for allergic

reactions. That's the only way I would try another one, if I ever do again.

I just think I'm allergic to them and they aren't for me. Maybe your doctor

will consider Arava, but again it too can damage your lungs. I don't know

what I would do if Arava didn't help me. It' hasn't stopped my pain, but it

has really helped with endurance and energy. I find I can deal with the

pain if I'm not totally exhausted all the time. I think it must be helping

the pain too, or I wouldn't be able to do as much as I can now. My biggest

problems are when I over do it. That was something that never happened

until I went on Arava. There was simply no way to over do it.

I sure wish I had some easy answer for you. Please write me any time and

let me know what you end up deciding. It's a rough spot to be in and I hope

you can find something that will be your " magic pill " . Arava is in pill

form by the way, so you don't have to mess with injections. Take care and

let me know if I can help in any other way. Love, Fran

[ ] To Fran Re Lung Infections

Hello Fran, I have lurking in the group for some time but have now

found an occasion to post. In a recent reply to a post regarding

Prednisone you mentioned that you had had lung infection(s) due to a

medication. I was very interested in this. I was diagnosed with PA in

Dec. 2002. I was immediately prescribed Prednisone and Methotrexate.

In January 2004 I began Remicade in addition to the Prednisone and

Methotrexate.Since January I have been in the hospital 3 times with

lung problems. In August I was in for 5 days with pneumonia. My

rheumy has no discontinued the Remicade and preparations are being

made to try Enbrel. I am fearful that the same thing will occur, more

lung problems. I, like you, would love to get off the Prednisone. I

think I may have developed or am developing Cushings. My face looks

like a full moon and my eyes are always very puffy as are my hands and

feet. I have developed this lovely peach fuzz all over my body

including my face. I have gained weight which was the last thing I

needed to do. I am developing the " buffalo hump " , another attractive

attribute. My questions to you are: (1) Did you try Remicade and have

a problem? (2) Did you try Enbrel and have a problem? (3) What are my

options if I can't take the Enbrel? I didn't think the Remicade was

doing much good until I didn't get it any more. Now I can hardly

function, even with pain medication. It has affected both feet, both

knees, both hips, both hands, neck, jaw and spine. Thanks for any

info you (or anyone else) can give me. Rene

October 8, 2004

Thanks Fran for the very useful information. I'm sure some other

folks will be helped by it as well. After reading your reply I feel

certain what I had was an allergic reaction. I had 4 Remicade

infusions and immediately after each one I developed pretty bad hives

all over and a slight. The infusion nurse even tried giving me

Solumedrol (sp?) during my last infusion to prevent the hives. Sill

got them but not as bad. Haven't decided about Enbrel yet. I have an

appt. with my Rheumy on Monday to talk about it again. I did receive

some medical records from my last hospitalization (pneumonia) and a CT

scan of my lungs showed fluid on one lung, a small amount around my

heart and enlarged lymph nodes in my chest. I intend to follow up

with these before I take anything new. Thanks again for the info.

Will keep you posted. Rene

>

> Dear Rene,

>

> I feel so bad for you because I've been going through exactly the same

> things you mentioned below. It is a horrible situation to be put

in, but

> stopping the prednisone it really hard to do especially with lung

problems.

> I never tried Remicade, so I can't comment on it, but I have no

plans to try

> it either. I tried Enbrel and immediately had a bad reaction after

the 5th

> injection. My glands were swollen and sore and I developed edema

> everywhere. My lungs filled with fluid and I actually went into

congestive

> heart failure, when I've never had a heart problem before in my

life. I was

> sure that Enbrel caused the Congestive heart failure, but it could

have been

> the allergic reaction along with the prednisone. It's so hard to

tell. I

> stopped that one immediately, saw several heart specialists and was

told I

> had a mild heart dysfunction that shouldn't be too serious if I

continue to

> take water pills forever now. That's another pill that isn't the

most fun

> to take, but not as bad as prednisone.

>

> Next I tried Humira, because my doctor was convinced it wouldn't

bother my

> heart. Instead after only 2 injections, I went into respiratory

failure and

> almost ended up in the hospital 3 times. It also seemed to bring

back on

> the CHF and I had edema again to deal with. That lung infection took

forever

> to get over. I had to go up to 60mg on prednisone and it still took

several

> weeks before I was able to walk without wheezing.

>

> About 3 months later, I tried (with much fear) Arava. It's a pill

form and

> isn't the same type of medication the others are. I was still worried

> though because it can cause respiratory infections as well. So far I've

> been really lucky. I've been on it now for almost 9 weeks and so

far (knock

> on wood) I haven't had a problem with my lungs. I saw my lung

specialist

> just last week and she was really happy with my results. I'm down

to 12.5mg

> on the prednisone which is a real miracle. Before Arava I was never

able to

> go lower than 20mg or I simply couldn't walk at all with the PA.

>

> I also saw an endocrinologist and I have developed Cushing's as well. I

> will say since I've lowered the prednisone some of the side effects are

> going away. What is strange though is when I first lower it, I

always have

> a big increase in symptoms. If I can hang in there long enough, they

> usually go away and I feel better after a week. I recently tried to

go to

> 10mg and had to stop and go back to 15mg for one day. It was real

easy to

> go back to 12.5 I'm happy to say. Since I've been on prednisone for

3 years

> I've gained weight as well and had most of the side effects you

mentioned.

> Somehow I missed out on the peach fuzz..lol. I did have my skin turn

bright

> pink though, so I guess that is an even trade.

>

> I hate to tell you not to try Enbrel or Humira or any of the other

drugs as

> they might be your answer. But I know if you are allergic to them,

they can

> be extremely serious with the side effects. I have no doubt if I had

> ignored my side effects on Enbrel or Humira they could have killed

me. Both

> are really strong drugs and I guess that's why they have been so

successful

> for so many people. I looked into trying to see if there were

studies done

> on people being allergic to these drugs, but didn't find any. As

far as I

> know there aren't any tests you can take before to check out if you are

> allergic. I wish they did have something like this.

>

> I would tell your doctor you aren't comfortable trying either one of

these

> drugs unless you go into the hospital to be monitored for allergic

> reactions. That's the only way I would try another one, if I ever

do again.

> I just think I'm allergic to them and they aren't for me. Maybe

your doctor

> will consider Arava, but again it too can damage your lungs. I

don't know

> what I would do if Arava didn't help me. It' hasn't stopped my

pain, but it

> has really helped with endurance and energy. I find I can deal with the

> pain if I'm not totally exhausted all the time. I think it must be

helping

> the pain too, or I wouldn't be able to do as much as I can now. My

biggest

> problems are when I over do it. That was something that never happened

> until I went on Arava. There was simply no way to over do it.

>

> I sure wish I had some easy answer for you. Please write me any

time and

> let me know what you end up deciding. It's a rough spot to be in

and I hope

> you can find something that will be your " magic pill " . Arava is in pill

> form by the way, so you don't have to mess with injections. Take

care and

> let me know if I can help in any other way. Love, Fran

October 8, 2004

Dear Rene, Good luck and please be careful. You can also call the drug

companies that make your drugs and ask them how many people have allergic

reactions. I didn't get very far, but I did get the complete list of

ingredients in the drugs. I found out that Enbrel is made from the organ of

a small rodent, and since I'm highly allergic to animals could have been my

reason for getting so quick. To me that is just something that everyone

should be informed about before we are given these drugs and told they are

" safe. " Let me know how you get along and I hope and pray one of them is

your answer. Love, Fran

[ ] Re: To Fran Re Lung Infections