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Arghhhhhhhh Prednisone Again!


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#1 Patty

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Posted 30 November 2006 - 03:21 PM

I had my three montha check up today and I got the news I expected but not the news I wanted to hear. She didn't say much about the sclero but was very concerned about my dermatomyositis. She put me back on prednisone even though I about begged her to give me something else. she said this is the only thing that is going to help my muscle weakness. I am soooooo upset. I said that I would never go back on it and no here I go again and just after I lost 9 pounds!!

She said that I didn't even need the liver biopsy and was upset that I was taken off the prednisone in the first place. I took myself off it and refused to go back on it but now I have to. I wish there was another med I could go on instead of the prednisone. I could cry right now I am so upset about this evil drug! The only good thing is I am only on 5 mg of it so I hope that it helps and I dont eat the pain off my walls! LOL The dr the was doing a fellowship when I first got my diagnosis in June said that once off the pred. and you go back on, it maynot work again so I have my fingers crossed that I will get some help.


She wanted to see me in 2 weeks but it didn't work so I go back in a month. I think then we will go over the sclero sxs more. She really just looked so sad to see me take such a backslide with the DM. I also have to have a EMG and I go in the morning for about 20 different blood tests.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#2 Sweet

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Posted 30 November 2006 - 03:36 PM

Oh Patty,

I can certainly feel your frustration and disappointment. I'm so sorry!!! I'm glad however that you dont have to have the liver biopsy. Try to take the next couple of days to absorb this new information, have a calming cup of tea, sleep on it, and I hope you feel a bit more at peace tomorrow.

Seems right when we think we have the feelings etc under control with this disease, we get thrown for another loop!

Big ole hugs for you!!

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 scleroguy

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Posted 30 November 2006 - 04:04 PM

Hi Patty,

Sorry that you have to go back on prednisone. I resisted prednisone at first because I don't like taking meds, and I read about the possible side effects. However, the side effects of a lot of pain medicines is also bad. I also believe that uncontrolled inflammation wears on us and causes damage over time.

I have been on prednisone for the last four years. I have gone as high as 30mg and as low as 4mg. It is adjusted based on my CPK levels and my symptoms, which usually get worse when my CPK is high(especially the pain and fatigue). This seems to be common among people with myositis. The good news is that the doctors have something to show them that it is not all in my mind.

I have blood tests every month to check for side effects (so far so good). I drink a lot of water because I believe that it helps to protect against kidney/liver damage. My doctor believes that the risks of side effects is low at 5-10mgs. I hope that 5mg is enough to help your symptoms.

Best wishes,
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#4 Patty

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Posted 01 December 2006 - 03:44 AM

hey Ron,

Thanks for the post. I am still upset that I had to go back on but I am hopeful that the low dose of 5 will help. I know that I should not complain about 5 mg because so many are on such a higher ammount but I didn't want to be on even 1 mg ever again.

Do you have the rash on the arms and hands and chest, back shoulders etc etc? Right now my back is so bad I can't stand it. I am back sleeping with a back scratcher.

Heres to a healthy December for us all!

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#5 Dee

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Posted 01 December 2006 - 04:23 AM

Hi, Patty. I'm so sorry you have the horrible pain and fatigue again. It is very frustrating when all the options have negative effects. I have generally found there are no "perfect" solutions. Oh, how I wish there were!!! We sometimes have to evaluate the trade-offs. I've been on prednisone several times--the short term packets and also a low dose for a year. It helped tremendously. I've been off for a year with no side effects.



Many times we just have to weigh the benefits and take the road that seems least negative to us and our doctors. Do you have confidence in your doctor? I would be inclined to follow your doctor's treatment. She sees the whole picture. The inflammation is not good for the body's organs either. Sounds like your doctor is monitoring you well. Hope you are able to enjoy the Holidays pain free (or almost)!



Best wishes,



Dee

#6 scleroguy

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Posted 01 December 2006 - 12:22 PM

Hi Patty,

I do get the rash on my arms, chest, back and shoulders, but it doesn't itch (thank goodness).

I join you in wishing for a healthy December for us all!
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#7 Sammie

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Posted 01 December 2006 - 02:10 PM

Hey Patty,

I have taken prednison for years. First for Lupus and now SD. One time a couple years ago, I didn't want to take it anymore so I weaned myself off of it. Then, a couple months later I ended up with pericarditis. I have been staying on it ever since. Right now I am on a maintenance does of 5mg. Sometimes I have to take more, but so far am al;ways to back down to 5.

Just remeber it does help with the inflammation.

Sammie

#8 peanut

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Posted 01 December 2006 - 07:27 PM

Does Prednisone make you gain weight? I've gained 9 pounds and it doesn't sound like much but my weight doesn't fluxuate, so to gain 9 pounds is unusal for me.
peanut

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my HMO makes me wear a helmet...

#9 Heidi

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Posted 02 December 2006 - 03:57 AM

Hi Peanut,

Yes! One of the side effects of Prednisone is weight gain. I would guess that your 9 pounds is likely due to the prednisone.

Warm wishes,
Heidi

#10 R'egene

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Posted 02 December 2006 - 03:38 PM

Patty,

Prednisone seems to have a lot of effects on me also. I hope u get better, and dont give up hope. Better things are in the future. I have been on 10mg for 12 years so I know it's frustrating. Keep in touch and stay strong. Rest and don't stess out so much.


R'egene :)
Birmingham, AL

#11 Patty

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Posted 03 December 2006 - 06:07 AM

HI sammie,
Thanks for the reply.
I am feeling better baout going back on it, even if I was wronga nd its not 5 mg a day its 5 mg 2x a day so its back to 10m a day for me. I know its not a lot but its more then I wanted. I know its for the better good I gess even if I dont want to admit it.

I was not sure what the pericarditis was so I had to look it up. Sounds painful. I sure hope that I dont end up adding that one to kmy list. I have enough!!


Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#12 Patty

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Posted 03 December 2006 - 06:13 AM

hello Dee,

Thanks for the reply. I Sure hope that I can go one this and get better and then go off like you have. I think the part of this med I hate the is over eating and the fact that I have no control over it!. Its so sad that a med that is supposed ot help you feel better really makes a mess of things on it way to the help. I gaind so much weight last time I was on it and was only on it for about 4 months. Oh well I guess things could be worse!

Have a wonderful day.

Hugs,
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#13 Patty

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Posted 03 December 2006 - 06:15 AM

R1gene,
Thanks for the reply. You said you have been on tihs for 12 years. Have you had any side effects from it and how do you control the overeating if you get that part?

I hope that because I am on 5 mg 2x a day I won't have such a want to eat like I did taking the 10 at once.
Hugs
Patty
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#14 ShawMJ

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Posted 03 December 2006 - 02:14 PM

Hi ,I too know what yu mean about not wanting to be on the prednisone,I was on it for years.Like you the last time this past year I was only on 5 mgs but my internist told me to tell my rheumatologist that if it wasn't takign care of the inflammation I should be taken off.He didn't want to hear of it so for a number of reasons I quit seeing him anyway and weaned myself off of it.I was very careful and suffered no side effects.I'm so glad I;m no longer on it.I had been on it since 1998! Have gained a LOT of weight on it but other meds have that side effect as well although I can't think right now what they are.I still have them in case of a bad flare I know they help.The best of luck to you with everything else you're having problems with.Take care and smile.Mary

#15 Grandma Judy

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Posted 07 December 2006 - 08:26 AM

I have been trying to get off of prednisone as well. Everytime I try to lower my dose my flareups get really bad and the itching comes back and the redness around the face, chest, arms. I cannot go lower than 20 mg. You gain weight because of the body retentions and the distribution of fat cells. I have the so-called "moon face" but at least it doesn't show wrinkles. My husband said he doesn't notice but I don't think he is telling me the truth. I feel alot better being on the prednisone. I lose 10 lbs when I try to lower my dose and then gain it back when I up the dose. That is with exercising an hour every night to strenghten my muscles also, or I would weight more. I have tried the other approaches, different diets, getting rid of toxics and bad bacteria in my body, and prednisone is the only thing that is working for me at this time. I refused prenidsone at first but I couldn't stand the symptoms so now I'm glad something is working. Hang in there....... I've spent alot of money researching different treatments.