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#1 Bird Lady

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Posted 25 October 2006 - 08:13 AM

Hello My husband and I just found this website, my husband has systemic sclero diffuse. It's nice to find some people to talk with. We live in a small town, and travel to Duke University for he dr. visits. Can we ask what are some of the medications others are taking? My husband is on a ton of different meds.
Thanks
Hugs for All,

Julie (Bird Lady)

#2 Steve

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Posted 25 October 2006 - 08:30 AM

Hi Bird man. Welcome to our group, glad you found us. I, too have diffuse SD and the meds I am on are:
Prednisolone (steroid for the swelling)
Omeprazole (to help with the acid reflux)
Lisinipril (to avoid trouble with my kidneys)
Fluoxetine (to help me stay warm, and give me a lift)
Iron (to control anemia)
senna ( to help with bowel movement)
Ginkgo Biloba (to aid circulation)
Celebrex (for inflammation)


Please feel free to ask as many questions as you like. There are not so many of us male sufferers, so I will always help where I can.
Take Care,

Steve Dickson
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International Scleroderma Network (ISN)

#3 Bird Lady

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Posted 25 October 2006 - 08:45 AM

Steve THANKS for reply
He's on
Celcept
Plaquenil (inflamation)
reglam (helps swallow)
vasotec (high blood pressure)
asprin
nexxum

He always has a bad taste and no appetite, dr said it might be celcept but wants him to stay on it, do you know anyone else who is taking celcept?

Thanks agian
Bird Mans wife!!!!!
Hugs for All,

Julie (Bird Lady)

#4 Steve

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Posted 25 October 2006 - 08:53 AM

Hello again Bird man's wife.
I personally do not know of anyone on Cellcept, but if you wait awhile, somebody will post who is on it, as it is a fairly well known med.
My appetite wasn't so good either, until I started the steroids. Then my appetite came back. Hopefully someone will pipe in with their experiences of Cellcept, and maybe a remedy for the bad taste and appetite too.
Take Care,

Steve Dickson
ISN Assistant News Guide for RSS Newsfeed
International Scleroderma Network (ISN)

#5 janey

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Posted 25 October 2006 - 08:59 AM

Welcome Birdman's wife!
We're glad you found us, but so very sorry to read about your husband diagnosis. I, too have diffuse scleroderma as well as polymyositis. Here's my list:
Methotrexate (immunosuppresant)
IVIg infusions every 6 weeks (imflamation due to the poly)
Prilosec (heartburn)
Propafenone (anti-arrythmia)
Aspirin (blood thinner)
Folic acid
Bosentan (pulmonary hypertension)

There are a few people on cellcept so hopefully they will find this thread. Here is the ISN page on Scleroderma treatments.

Again welcome. Please keep us informed on how the hubby is doing.

Big Hugs,


Janey Willis
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#6 adensmore

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Posted 25 October 2006 - 10:00 AM

Hi Bird Man,

I go to Duke too. I live in Raleigh, NC and see Dr. Shanahan. I LOVE him!! I'm on a ton of meds too and about 3 weeks ago he started me on chemotherapy (Cytoxan). I have my 2nd appointment for chemo this Friday.

Med's I'm on:

Methotrexate(Injectible)
Lisinopril
Cymbalta
Prednisone
Neorontin
Nexium
Evoxac
Reglan

I'm sure there are a few others I've forgotten.

Best of luck. Duke is an amazing hospital, you are in good hands.

April

#7 LisaBulman

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Posted 25 October 2006 - 10:04 AM

Hello!
I am glad you have found us here but I am so sorry it is because of scleroderma! You'll find we are a friendly group with much advice to offer.

Here goes....

Clinoril- antiinflammatory
Protnix- reflux
Ambien as needed to sleep

That's it. I don't like being on meds so I prefer not to take others and I just deal with the daily pain.

Welcome again!

Hugs,
Lisa
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#8 Heidi

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Posted 25 October 2006 - 10:24 AM

Hi!

Welcome to the Forums! I am glad you found us, but sorry it is because of your husband's scleroderma. I am sure you will find everyone here very friendly, warm and supportive....and very willing to provide advice and information when we can.

I have a diagnosis of Undifferentiated Connective Tissue Disease (that is most similar to Limited Scleroderma) and take the following medications:

* Aciphex (for reflux......my appetite gradually increased after beginning this medication last fall)
* Celebrex (joint pain)
* Neurontin (neuropathy)
* Vitamin B Complex (neuropathy)
* Plaquenil (I was told to always take this with food or else it would leave a very bad, bitter taste in my mouth).

I hope this is helpful. Again, welcome!

Warm wishes,
Heidi

#9 paula

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Posted 25 October 2006 - 10:57 AM

i all! im new...but so glad I found you! I live in ohio, have CREST had it for 40+ years. meds...let's see
prednisone
arthrotec
neurontin
plaqunial
plavix
baby asprin

others for other ailments
i was on welbutrin xl until my insurance decided not to pay for it...over 300.00!!!! I didn't have it filled. I hope I can go without it.

anyway....i looke forward to chatting with everyone!!

paula

#10 Sweet

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Posted 25 October 2006 - 11:36 AM

Hello Mr and Mrs Birdman! and Welcome!

I have Lupus, Sclero and just recently diagnosed with Sjogrens.

I take:
Plaquenil (slow progession of disease)
Prilosec (for reflux)
Pain Medications
Fish Oil
Amino Acids
Mag Citrate for bowels

I think that's about it lol Hard to remember everything!

Love Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 Lauriejill

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Posted 25 October 2006 - 12:17 PM

Hello to the Bird People!!!!

I have diffuse scleroderma and I am on:
Prevacid (Proton Pump Inhibitor)
Fluoxetine (anti-depressant)
Nifedipine (Calcium channel blocker for Raynauds)
Methotrexate - injections (Immunosuppressant)

I tried to take Reglan but it made me CRAZY......
I have also been on Plaquenil from time to time

Welcome to our group......we will all be glad to help you with whatever we can!
Laurie Jill

#12 GocartMoz

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Posted 25 October 2006 - 01:04 PM

Hello,

I have also been diagnosed with diffuse scleroderma. I am on two pain medications, as well as Prednisone, Nexium, Xanax, Amitryptaline, Lisinopril and Lunesta to help me sleep. I have also been prescribed D-Penicillamine, though I was just recently prescribed and havn't started taking it yet. Though I live in Florida, I am going to Duke at the end of November to visit with Dr. Shanahan and others to be screened for the Scot Study. Good luck to you and your husband. If your husband ever wants to talk to discuss this disease from a man's point of view, feel free to have him e-mail me.

Dave in Florida

#13 WestCoast1

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Posted 25 October 2006 - 01:35 PM

Hello Bird Man and Wife,
I am so glad that you found this forum for support and reffrence.
As far as meds go I take:

Plaquenil- to decrease side effects of disease
Aciphex- to help with reflux
Topomax- to help with migrains
Acidopholus- to add good bacteria to stomach

Welcome!
*WestCoast*

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#14 Lori-Scleroderma Spouse

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Posted 25 October 2006 - 01:54 PM

Hi birdman and wife,
I was amazed to see your post. My husband also has systemic diffuse scleroderma. He also goes to Dr. S at Duke. He is on
Cellcept 4 in the am and 4 in the pm
Plaqunil
Reglan
Nexxium twice a day
Aspirin
Folic Acid
Remeron (sp?)
My husband had the same problem with the bad taste and lack of appetite. He had that before the cellecpt. We were told that is was the plaqunil. It has gotten better. Dr. S just switch his antidepressent to Remeron. He decided on that one to help with appetite. He weighed 200 pound in February, was dianosed in April and now weighs about 150 pounds. Has your husband lost weight? How long has he been diagnosed? Don't you just love Dr. S? He has been great. He always e-mails me back quickly and has even called us at night. I hope things go well. I know that it is hard on your husband but I also know that it is hard on you. I will listen if you need to talk or vent. Email me if you want to talk.

#15 GocartMoz

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Posted 25 October 2006 - 02:16 PM

Lori,

I also lost close to 50 pounds as a result of a loss of appetite. Since being on Prednisone, however, since July, I have put about 10 pounds back on. I was oringinally on 40 mg of Prednisone but have been weaned down to 10. Hopefully, I will be off the stuff soon.

Good luck to you and your husband.

Dave

#16 Tara

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Posted 25 October 2006 - 02:44 PM

Hello! I am 25 and have diffuse scleroderma, but thankfully no organ involvement yet. I was diagnosed Jan. 26 2006. Here are my meds (I take 10 pills a day):

Cell Cept 2g per day
Nexium (heartburn)--2 a day
Baby Aspirin (circulation)
Capoten (circulation)
Procardia (circulation)
Lipitor (circulation and anti-inflammatory)

I started the Cell Cept in March and haven't had any problems with it. I was on Plaquenil from Jan. 6-March and had horrible side effects. I was so sick, I missed a few days of work and I never miss work. I had every side effect listed on the pharmacy brochure except for 1.

I haven't been on Reglan for the sclero, but when I had my baby in July 2005, my lactation consultant suggested I take it to help increase my milk supply to breastfeed. My OB/GYN refused to give me more than a 2 week Rx because of the horrible side effects. I think I only took it for 4-5 days because in addition to having a newborn and having to feed my baby every 2 hours around the clock (ie-absolutely NO sleep for 8-9 days), I couldn't deal with how it made me feel.

Good luck!
Tara

#17 Bird Lady

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Posted 26 October 2006 - 03:30 AM

Adensmore
I'm still trying to figure out this website and how to use it !!! Bird Man wants to know how Dr S decided to start you on the Cytoxin, He wants to start it but Dr. S says he's not ready yet. Bird man is impatient !! He has always had a lot of energy and now he has none. I think he is frustrated. We go back to Duke Dec. 4th
Thanks for the reply
Bird Mans wife
Hugs for All,

Julie (Bird Lady)