Horrid side effects from my Reclast infusion on Thursday.

[Guest guest]

Hello every one, After what I thought was

a pretty good day on Thursday (

I had my first once Yearly infusion off Reclast, had a manicure and

pedicure, and even got to chat with some of you)

I was feeling fine when I went to bed but boy what a mess the overnight

became. I was awakened at about 2 am

with such violent shaking and shivers that my teeth were rattling and

M ike said the bed was shaking too. I had a fever, chills, nausea.

I had Mike find the hand out from the Reclast and there they were all

the side effects I had! I called the Dr. and she eventually

got back to me. I never felt so bad after being just fine! She said

to take 2 tylenol every 4 hours and lots of fluids and rest.

At my next appointment in October we'll have to decide if Reclast is

for me or if I should stay with the Boniva infusions that are every 3

months .

I had no side effects from them at all and they had done their job of

building bone. My last Dexa scan showed better bone density

in three of the four areas studied and no change in the 4th. I'm sort

of OK now, haven't slept except for cat naps on the recliner.

the Prednisone caused the osteoporosis so the less of that the better.

I'm down to 10 mg and really want to get to 0mg but the Dr.

feels that I should stay at 10 to prevent any inflammation.

--

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

[Guest guest]

,

That sounds awful!! I hope you're feeling better today. If it were me I'd be wanting to go back to the Boniva infusions also.

It's funny isn't it that we have the same diagnosis and your doctor wants to keep you on prednisone and I've been off of it completely now for 18 months and have stayed stable.

It always fascinates me how treatment varies from doctor to doctor. But in the end what matters is staying STABLE!!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Horrid side effects from my Reclast infusion on Thursday.

Hello every one, After what I thought was a pretty good day on Thursday (I had my first once Yearly infusion off Reclast, had a manicure and pedicure, and even got to chat with some of you)I was feeling fine when I went to bed but boy what a mess the overnight became. I was awakened at about 2 am with such violent shaking and shivers that my teeth were rattling and M ike said the bed was shaking too. I had a fever, chills, nausea.I had Mike find the hand out from the Reclast and there they were all the side effects I had! I called the Dr. and she eventuallygot back to me. I never felt so bad after being just fine! She said to take 2 tylenol every 4 hours and lots of fluids and rest.At my next appointment in October we'll have to decide if Reclast is for me or if I should stay with the Boniva infusions that are every 3 months .I had no side effects from them

at all and they had done their job of building bone. My last Dexa scan showed better bone densityin three of the four areas studied and no change in the 4th. I'm sort of OK now, haven't slept except for cat naps on the recliner. the Prednisone caused the osteoporosis so the less of that the better. I'm down to 10 mg and really want to get to 0mg but the Dr.feels that I should stay at 10 to prevent any inflammation.

--

Z 64, fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

Vinca Minor-periwinkle is my flower

[Guest guest]

... I'm so sorry to read about your nighttime reactions. (I hate it when I feel really bad during the night...guess I feel more vulnerable).

I don't know much about Reclast. I'm presuming the Tylenol/fluids helped and I'm hoping too you are sleeping better.

I always feel a deflation in my spirit when one of us has to deal with more, more, more...

God Bless you .

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Horrid side effects from my Reclast infusion on Thursday.

Hello every one, After what I thought was a pretty good day on Thursday (I had my first once Yearly infusion off Reclast, had a manicure and pedicure, and even got to chat with some of you)I was feeling fine when I went to bed but boy what a mess the overnight became. I was awakened at about 2 am with such violent shaking and shivers that my teeth were rattling and M ike said the bed was shaking too. I had a fever, chills, nausea.I had Mike find the hand out from the Reclast and there they were all the side effects I had! I called the Dr. and she eventuallygot back to me. I never felt so bad after being just fine! She said to take 2 tylenol every 4 hours and lots of fluids and rest.At my next appointment in October we'll have to decide if Reclast is for me or if I should stay with the Boniva infusions that are every 3 months .I had no side effects from them at all and they had done their job of building bone. My last Dexa scan showed better bone densityin three of the four areas studied and no change in the 4th. I'm sort of OK now, haven't slept except for cat naps on the recliner. the Prednisone caused the osteoporosis so the less of that the better. I'm down to 10 mg and really want to get to 0mg but the Dr.feels that I should stay at 10 to prevent any inflammation.

--

Z 64, fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

Vinca Minor-periwinkle is my flower

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[Guest guest]

Hi Z

I know nothing about Reclast infusion or Boniva infusions, but I have had those terrible chills and shivers (which in my case was a reaction to azathioprine (Imuran). I was so sore afterwards from my whole body shaking-ugh. If I get them again, I'll try the Tylenol and lots of liquid recommended by your pulmonologist-thanks for passing that on.

Regarding the prednisone, my IPF guru said it's ok to take ativan ( a mild tranquilizer) to offset the jitters and a sleep medication to sleep (I take temazepam (Restoril). You may want to ask your doc about these, especially regarding your difficulty sleeping. It's bad enough among every thing else we have to contend with, but getting a good night's sleep is really special and perhaps possible. I hoe the above helps for you.

, age 63. IPF, 5/2008, NJ

[Guest guest]

, Thanks for you response. I already

take sleep meds and an occasional Valium before bed as a normal thing.

Restoral did nothing for me. I take Lunesta.

The sleeplessness ands shkes have been much improved with the lowering

of the Prednisone over time.

This most recent mess was all due to the infusion .

I also take Imuran and have not be bothered by it at all.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Gordon wrote:

Hi Z

I know nothing about Reclast infusion or Boniva infusions, but I

have had those terrible chills and shivers (which in my case was a

reaction to azathioprine (Imuran). I was so sore

afterwards from my whole body shaking-ugh. If I get them again, I'll

try the Tylenol and lots of liquid recommended by your pulmonologist-thanks

for passing that on.

Regarding the prednisone, my IPF

guru said it's ok to take ativan ( a mild tranquilizer) to offset the

jitters and a sleep medication to sleep (I take temazepam

(Restoril). You may want to ask your doc about these, especially

regarding your difficulty sleeping. It's bad enough among every thing

else we have to contend with, but getting a good night's sleep is

really special and perhaps possible. I hoe the above helps for you.

, age 63. IPF, 5/2008, NJ

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