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It's been a long while since I was here...

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#21 Tawanda70


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Posted 07 January 2011 - 12:26 AM

Happy New Year to all!

My fundoplication has been rescheduled for February 23, and this time I will not cancel (hubby would choke me if I did :lol: ).

I am in the process of scheduling an appointment with a rheumatologist who was referred by a wonderful lady who works in the lab at my general practitioner's office. She has Scleroderma too... what a small world. When I was in there for a routine check of my thyroid levels, I told her my diagnosis, as she had asked what brought me in that day. She looked at me with such surprise and said she had it too. We got all teary eyed and we hugged like we were sisters. In a weird way, it is such a comfort to actually MEET someone who has this disease and KNOWS what it is like. She is about 11 years older than I and more advanced in her symptoms. I shared what is going on with me and she was very forthcoming about how I seem like she was 10 years ago. We joked about GERD and white hands and feet, how winter time is our worst, and sore joints.

Surely, someone had a hand in this and also had a hand in me getting back on board here. I am out of my pity party and feel such love from you all. Since the closest thing to a support group for me is 3 hours away, this forum is the best I could hope for!

Many thanks to all my 'family' here!

#22 Tawanda70


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Posted 07 January 2011 - 12:31 AM

I forgot... one more question. Prednisone... how has steroid treatment worked for any of you? The Omeprezole I take (at highest dosage and been on for quite a while) 'melts bones' over time and I know steroids do the same. My grandfather-in-law had Lupus and took steroids and was fine on them, other than some swelling.

I am concerned about osteoporosis later in life as well as bloating up and being crazy from side effects from steroid treatment, not to mention the bone loss. Any insight would be greatly appreciated :)

#23 Joelf


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Posted 07 January 2011 - 03:16 AM

Hi Tawanda

I'm so pleased to hear that you're feeling happier and more positive now. That's very good news about having the date fixed for your fundoplication; from what you've said I'm sure you won't dare to cancel this time! ;) What an amazing coincidence it was to have met someone else with this unusual disease in those circumstances.......and what a comfort, too. :emoticons-yes:

I have been taking Prednisolone since July 2009 and to start with I was very impressed with it's anti-inflammatory properties. My lung function improved, my swollen, painful joints and fingers were 100% better and I felt on top of the world. But having been on this medication for the last 18 months I'm not quite so enthusiastic about it as I was! Unfortunately I have definately put on weight (particularly on my stomach) and I notice a few spots and hairs which I didn't have before on my face. :( I don't do mood swings but I found in the beginning that I was bouncing off the walls on the steroids (I've seen it described as "inappropriate happiness" :wacko: :lol: ) I tend to have a rather extrovert in-your-face personality anyway, so under the influence of steroids I realise that I was probably becoming rather wearing to my nearest and dearest!! :rolleyes: Thankfully for my long suffering husband the effect of the steroids have worn off a little over time!

Like most medication there are worrying side effects; I tend to think that with Prednisolone the benefits do out weigh the problems. However, it is very important to have your medication monitored on a regular basis. High doses of steroids are not recommended for Scleroderma as it can precipitate a renal crisis so it's as well to be aware of that.

Regarding the osteoporosis, I take Alendronic acid and a calcium and vitamin D supplement as I have osteopenia in my hips. Certainly steroids do leech calcium and potassium from the body; my consultants took this into account when prescribing my medication.

In spite of the drawbacks, I do hope that the steroids will improve your quality of life as undoubtedly they have mine. :)
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#24 debonair susie

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Posted 07 January 2011 - 05:44 AM

Hi Tawanda,

I'm glad your husband will make sure you follow through on your surgery!

How great that you met someone with Scleroderma. I had known someone since I was 15, but didn't find out until WAAAY after I had found out I had it. So great to have someone (on a personal basis to relate with). I would imagine I would do the same...HUGS galore!

Yes, Prednisone can be so helpful, but it's very good for it to be monitored, for the very reasons named. My hubby also uses Prednisone, but only at intervals (to help with lung infections). He also noticed how wonderful it was (during each use), how much it helped him with HIS bursitis/arthritis, also.

Once you have this surgery, you'll no doubt ask yourself, why you cancelled the FIRST time ^_^ !

Thank you for posting your update with us and enjoy your weekend!
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#25 Shelley Ensz

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Posted 07 January 2011 - 09:43 AM

Hi Tawanda,

Congrats on rescheduling and resolving to keep the appointment for your Nissen surgery. My husband (who does not have scleroderma) had a Nissen in order to help him qualify for a lung transplant (which he had a year ago today). He hasn't had a whit of heartburn since his Nissen (nor a whit of oxygen since his lung transplant).

Regarding prednisone, although many people have been on it, and certainly the majority of them would have felt better for a spell, it is strongly recommended to avoid prednisone in people with systemic scleroderma, because it can hasten death, cause sudden kidney failure, etc. so we have a section that is a Warning for Prednisone and Scleroderma.

Prednisone certainly has side effects in everyone, but for some reason prednisone exacerbates scleroderma, in particular. It is well known for making people feel better though, although that 'feeling better' comes at a huge price. I remember decades ago my mother was put on steroids for Addison's disease (it is imperative with Addison's disease) and told that she would no longer die of Addison's, that she would die of the side effects of steroids, instead. And the doctor merrily added that she would "dance her way to the grave!" What a lovely thought, eh?

This is a reason why it is helpful to consult a scleroderma expert, because they (should) know the nuances in treatment regimens and not apply a one-size-fits-all approach to rheumatic/arthritis diseases.
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#26 Amanda Thorpe

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Posted 07 January 2011 - 10:26 AM

Hello Tawanda

When first diagnosed all I wanted to do was clap eyes on another person with scleroderma. I am pleased to say I do so regularly because I host a local group for the UK Scleroderma Society and have made friends with many of those who come.

Take care and keep posting.
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#27 alice1


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Posted 08 January 2011 - 07:24 AM

For what it's worth, my Scleroderma specialist in Baltimore and my gastro intestinal doctor in Virginia, without contact, have both said no to surgery for me.

They thought it would make things worse....


#28 Tawanda70


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Posted 08 January 2011 - 09:37 AM

Alice, does your esophageal manometry results prevent your surgery? I still have enough function to allow for the surgery. Now, if that goes one day for me, it will be dealt with then :huh: