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Back From Dr.... Prednisone Update...


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#1 Patty

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Posted 17 May 2007 - 09:48 AM

ok me again!!! I went to the Dr she told me that she was going to have a Intern come see me first then she would be in. I am so glad that's how it went. I was able to tell him all my sxs and all my complaints. When I told him that last time I told her I wanted off the prednisone she told me I would have to find a new Dr.. he got wide eyed! He did a exam and was concerned that my left leg was rather swollen. I told him my whole body is swollen and when he looked at my chart and saw my weight when I first when to this Dr and what my weight is now he seemed hmmmmmm whats the word.... well he didn't like the weight I gained and said he would talk to the other Dr for me. He looked at the rash that's back on my arms, legs, chest , and back. He didn't care too much for that either. he left the room saying he would be back with the other Dr.

They come back in and I get that look from my reg Dr of pity. Now I know somethings really up because last time I saw that look was the first time I went to her and she and the Dr doing a fellowship got to tell me I have Scleroderma and Dermatomyositis. Well today they went over that again and my thyroid and something I missed due to the deer caught in the headlights feeling I had. You all know it... the dread in the Pitt of your stomach when you know your about to get news. Seems I have 3 maybe 4 autoimmune diseases. The Intern said that all scleroderma cases are complicated, but mine is VERY complicated. OH lucky me!!

My reg Dr asked me if I wanted to go off the Prednisone and I told her yes so she put me on 7.5 untill I go see her in a month. I also got a RX for my pain. About time is all I can say about that. I don't need them every day but when I need them I need them and I nor should anyone have to figure out what 4 hours a day they need help with! I asked them if I had the right to sit down because I was not feeling well and they both said oh yes I have that right. I wish Tom had been in the Dr's with me but the baby feel asleep in the car on the way so he stayed in the car with her. Oh well I think the fact I walked out with new Rx's tells him something.

While I was there we talked about my liver and my last tests results from it and how they were high so she called my GI and talked to her right then and there. I was very impressed with that.

She thought that she was going to need to do a biopsy on my rash but I told her I had one last year prior to seeing her for the first time so she looked that up in my chart and decided that she didn't need to do one!! Phew one less scar on my body LOL. She checked my skin to see where I am getting tighter and where I am ok. She also seems a bit taken aback by how swollen I am.

So all in all this was a good visit so to speak. I got my prednisone lowered, got something for pain and got her attention that I am sicker that we had all thought to start with. Shes going to lower my prednisone again next month so that's when I am going to ask for a new line of treatment.. Any Ideas anyone of what I might need? I ask because we all live this 24/7 so if we don't know what works then no one does!

Sorry this is so long.

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 WestCoast1

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Posted 17 May 2007 - 10:04 AM

Hello Patty,
Whewwww, it sounds like you saw just the right Dr. at just the right time. It IS truley a bummer that you have to deal with so many illnesses all at once. I guess that knowing is half the battle...right? :)

So about treatment, now that you are stepping down with the Prednisone, it sounds like you might need something else to treat the other autoimmune stuff that you have. Did the Dr. make any suggestions as to what he was thinking for you?
*WestCoast*

********

#3 nan

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Posted 17 May 2007 - 10:09 AM

Patty,
I am so sorry you are having to deal with all of this. I don't have any suggestions. I think you finally have convinced the doctor that you are really sick. Maybe she will take care of you now.
Take Care!
Nan

#4 Sweet

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Posted 17 May 2007 - 10:50 AM

Wow!! Patty I am so glad that your appt went as well as it did. Sometime it helps to have fresh eyes on a situation and a 'new' student sometimes is best. They are so eager to learn, to impress the doctor they are working with etc. I've seen it happen so many times over the past 26 years that I've been in the medical field.

As far as treatment goes, I would talk with him about Plaquenil. I can't remember if you've been on it in the past and went off of it for some reason, but it's normally the first line of defense. Helps with fatigue, pain and can slow the progression of the disease down and with some people stop it in its tracks.

Do let us know how you feel after lowering your prednisone.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 peanut

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Posted 17 May 2007 - 10:51 AM

Patty,
I too wish there was something to take besides prednisone. I've gained 25 pounds. It doesn't sound like much but it's all in my belly so I really look fat. Every time I lower it my cough gets terrible.

I look forward to seeing others responses.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 Heidi

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Posted 17 May 2007 - 02:29 PM

HI Patty,

Overall, it does sound like it was a good appointment. I am glad you got to see the intern first and he was able to help your regular doctor realize that you needed some changes to your treatment! I am so glad she has agreed to lower your prednisone. I certainly hope that helps you to feel better and you can lose some of that weight. So, what did the doctors decide about your elevated enzymes? And what about the rash...is that just part and parcel of the dermatomyositis? Please keep us posted on how you are doing?

Warm wishes,
Heidi

#7 whirlway

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Posted 17 May 2007 - 07:12 PM

Patty, there are lots of different meds out there besides prednisone. How long have you been taking it in the first place? I have taken it so long that I will never be able to get completely off of the stuff.
However, when I insisted that I wanted off, the first drug I tried was plaquenil, as Sweet suggested. It didn't work very well for me, so the next drug of choice was methotrexate. WOW! I got so sick I thought I was going to die. Back to square one. Next drug, immuran. It worked really well for a couple of years and then started not working. I am now taking cellcept, which seems to be doing the trick. I still take 5 mg of pred a day, I can live withthat.
My dr says not to worry if the cellcept stops working, as there are new meds out there. So, I take 2000mg of cellcept and hope for the best each day!
Good luck.
~whirlway


#8 LisaBulman

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Posted 18 May 2007 - 12:29 AM

Hi Patty,
That sounds much better than your last visit! What a relief. At least your dr is listening now. Hopefully your swelling will go down as you taper off the prednisone. Let us know what is decided for treatment.

Hugs,
Lisa
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#9 relicmom1

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Posted 18 May 2007 - 01:00 AM

Hey Patty,
I can truly relate on the having fresh eyes look at you. I had gotten to the point with my rheumatologist that I was truly going to try to find another, then I saw the Nurse Practioner in his office. And just like your intern, I could tell she didn't like what she was seeing. She has truly listened to me and I feel like she keeps a closer eye on things. Unfortunately I don't get to see her every visit. I am so glad you got to see the intern first and he got you the help you needed and DESERVED!!!! Sometimes and I don't know why, they don't seem to understand the level of pain we can be in and it does fluctuate in severity. My general practitioner gives me a pain medication. Please let us know how you do off the prednisone. Remember my motto "this too shall pass" :P and immediately be replaced with another problem.
XOXOXO
Barbara
Peace :)
Barbara aka relicmom1

#10 Patty

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Posted 18 May 2007 - 01:12 AM

Hi everyone,

Thanks for all the replies. To answer some questions, I have been on the Prednisone for most of the last year. I did go off for a small amount of time but had to go back on it due to the dermatomyositis.

The liver emzymes are being watched right now and we are waiting on the last tests to come back to see what's going on. As of right now it stands I have fatty liver. This is good news because after the liver biopsy I had I really thought I was told I had autoimmune hep so I am very happy that this can be fixed with diet! I had so many things thrown at me that I really got lost in it all. Oh well just another oldtimer's moment for me.

Thanks again for all the support.

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.