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Old 04-07-2005, 02:29 AM   #1
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jacintal72 HB User
Meds and Side Effects

I'm STILL waiting for an opening to get an appointment with a rheumatologist. But my general doctor that ran some tests and said I have an autoimmune disorder put me on 1600 mg of ibuprofen daily. I guess it was to see if it helps the pain I am having. It doesn't work. So he said that he wants me to start on prednasone (sp?). I don't really want to do that because it bloats people up and has some side effects. Anyone here on it? He said if prednasone doesn't work that he will have to "get into the other meds that have more serious side effects". I can't remember which ones he rattled off. But I was wondering if any of you could tell me about some of the meds you are on and what side effects you have suffered? I know we are all different so I might not have the same side effects. But I am just worried about starting meds. Especially when my doctor hasn't even told me what I have exactly!
My body feels like it's falling apart and I am so fatigued. Everything wears me out. And I just feel like the docs are just pushing me aside with no help or answers. They just want to prescribe a med and shove people out the door.
It's very upsetting.

Jacinta

 
Old 04-14-2005, 08:13 PM   #2
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vamp36 HB Uservamp36 HB User
Re: Meds and Side Effects

I see it's been a week since you posted this. I hope you check back and read it. I have Autoimmune hepatitis. I was on Prednisone for about a year. Finally off of it about 7 weeks ago. So far so good!! I'm considered to be in remission right now. Although I had to go see my doc today because my liver is hurting again. Waiting for my blood tests to come back. Anyway, I had many side effects from Pred. Especially on the high doses. Once I got down to 20mg and lower on a daily basis, , they werent so bad. I started on 80mg daily in the beginning. I had the mmon face, steroid acne all over my neck and face, I started to grow a moustache (i'm female) ( I always removed it!!) the weight gain, sleep problems, mood swings, deppresion, memory effects, blurred vision, ringing in the ears, and a few more I'm sure. But remember, I was on very high doses. THe really eased off when my dose got to 20mg or lower. I did have to do 7 tpers to get off of them as well. I went through steroid withdrawels pretty bad. I do know some other people that have been on them at high doses like me and they barely had any side effects. It all depends on the person.
The good news- the Prednisone SAVED MY LIFE. I was starting liver failure and on the transplant list. The steroids helped turn my liver around. If you do have an Autoimmune disorder , they will help you. SO the side effects are a temporary issue.
I was also on Cytoxin for a short period of time. It was to help drop my immunity. THe main side effect I had from that was nausea.
I wish you the best. Keep us posted, TIna

 
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Old 04-23-2005, 06:33 AM   #3
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jacintal72 HB User
Re: Meds and Side Effects

Well, I'm on 40 mg of prednisone daily now. Still can't get in to see a rheumatologist. I had to request more blood tests be done instead of my doctor suggesting it. Thanks to this site and a few books, I can at least talk to my doctor more. And he is up to giving me almost 5 minutes of his time a month! Woo hoo!

 
Old 04-24-2005, 03:34 PM   #4
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Re: Meds and Side Effects

If all your doctor will give you is 5 minutes of his time, I'd get a different doctor. Autoimmune problems are complex and time consuming. Appointments should never be rushed. You haven't said what your symptoms are, but if you have lupus or rheumatoid arthritis, you more than likely will be started on Plaquenil. I take 200 mg twice a day and have been on it for a year. The first 3 weeks I was on it, I felt like I had morning sickness 12 hours a day, but once I started sipping peppermint tea, that feeling went away. It doesn't bother me at all now.

 
Old 04-24-2005, 10:13 PM   #5
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jacintal72 HB User
Re: Meds and Side Effects

I live in a small town. There is one rheumy and she's not taking new patients. My doc is a general doc and wants me to go to the rheumy. He has hundreds of patients a day and yep, it's always rushed with him. That is why my first post was titled, "Frustrated". I feel I am just being tossed around until he can get rid of me. I have to request tests that I find online instead of him just giving me tests.

The prednisone seems to be giving me some symptoms. I'm very sore around my neck, shoulders, base of skull and under armpits. These areas feel bruised, even though there is no bruising. It's very painful. And I have horrible headaches from the med. But I can't get ahold of the doc to see if I should still stay on it.

As far as my original symptoms, I think I posted them previously, but here's a quick list:
fatigue..sleep at least 12/13 hours a day
pain in hands, shoulders, back, neck, joints, arms
my muscles feel weak and burn even with minimal use
my right hand gets cold and stays that way even when the rest of me is warm
same with my feet
pain in the legs
horrible headaches even before prednisone
very sensitive to the sun
i have a feeling of a fever. I say feeling because it never seems to register as a fever
I do have very low blood pressure and heart rate
when i am in the sun too long i get physically sick..nausea/vomiting
gastrointestinal problems (don't know if it's related or not)
redness across face..looks like a few blood vessels have broken..stays that way
however it doesn't seem the same as a lupus rash. Not as extreme. Just red.
I used to have a sore throat all the time when my symptoms first started years ago, but that is not as frequent now
I also have hair loss. That has also lessened in the last couple of years. I was losing alot, now just a little.
If I push myself when I am tired or weak (which is almost always) I get a horrible headache and end up vomiting
That's most of my symptoms...
My ana was 1:320 and now is 1:160, so that may be a good sign. It's speckled pattern. That is about all I know.

 
Old 04-24-2005, 10:18 PM   #6
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jacintal72 HB User
Re: Meds and Side Effects

Oh, about the redness and heat that I experience on my face..anyone have any idea what could cause that? I asked the doc, he didn't know. My face really does get so hot it feels that it will burst. And it gets red as can be. I have low blood pressure and heart rate. I thought maybe it had something to do with high blood pressure, but I don't have that. I feel fatigued almost all the time, and usually at night is the time my face is red and so hot. Yet, I take my temp and I range from 96.0 to 98.1. I can't understand it. The doc does feel it has something to do with my autoimmune disorder, but he isn't exactly sure what the cause is. Anyway, it is the worst. My face is permanently red across the cheeks and has these little red/purple broken blood vessels on the cheeks. I guess cuz it gets so hot. Any ideas?

 
Old 10-27-2006, 12:59 PM   #7
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LittleLisaMarie HB User
Re: Meds and Side Effects

Quote:
Originally Posted by teachergirl64
If all your doctor will give you is 5 minutes of his time, I'd get a different doctor. Autoimmune problems are complex and time consuming. Appointments should never be rushed. You haven't said what your symptoms are, but if you have lupus or rheumatoid arthritis, you more than likely will be started on Plaquenil. I take 200 mg twice a day and have been on it for a year. The first 3 weeks I was on it, I felt like I had morning sickness 12 hours a day, but once I started sipping peppermint tea, that feeling went away. It doesn't bother me at all now.

I agree. I have been being treated by a doctor that does just that. I swear he sets a timer before allowing me to speak. I am now in the process of changing rheumatologists after 2 years! Don't wait and let this happen to you. I could have been in a great deal more relief right now.

I do not have the SLE (lupus) diagnosis, but have hair loss, organ involvement, rash on face, chin, neck and scalp, sun sensitivity, etc. I could go on. Remember that you are paying these people to help you, and this is their job. So be the squeaky wheel if you need to. If you don't advocate for yourself, nobody will. Best of luck.

Jacintal, I too live in a town with only one rheumatologist. I am now going to be traveling to see one, but my guess is it will be worth it.
__________________
dx: Rheumatoid Athritis, sjögren's, fibromyalgia,Chronic Fatigue

 
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