Recent appt with Rheumatology

3 posts in this topic

Hi everyone,


I havent posted in awhile, been trying to keep busy and not let myself get to down lately. I had my appointment with the Rheumatologists last week for my 3 month follow up, and the news was not good. Apparently things have kicked off so to speak. My breathing is getting pretty bad and my Raynaud's is worse even though it is warmer. I have developed strange painful patches on my legs that I thought were rashes or places where I bumped my legs. But per my doctor they are where my immune system has started to attack the skin there. They are worried now that I have heart involvement and have ordered me another Echo and also a PFT for the lungs.


I have been put on steroids for the first time, Prednisolone is the name of it. They are starting me on oral ones for now and will see how it goes for 6 weeks. So far the only issue I have had with the steroids is that if I take them before eating anything in the morning, I end up with stomach spasms and I throw up a clear mucus like liquid. It is pretty weird as I do not feel sick before of after and once I get it all out then I am fine. So needless to say I eat something before taking them! And I seem to be hungry all the time, not helping with my dieting at all lol. But I have bought lots of fruit and veg to snack on so hopefully I will not get the weight gain issues so badly. It does seem to be helping with energy though, I am not as tired all the time now that I have been taking the steroids for a bit. And it does seem to be helping with the pain in my legs and joints as well, but my breathing is still pretty bad. I wanted to go to the gym and start swimming a couple of times a week, but Im afraid I will get out of breath and drown! hehe


Im now on a double dose of my acid reflux medicine for a month to see if it helps me with that issue as well, if it doesn't I am going to ask them about that procedure I see lots of you have had, Nissen Fundilplication? and see if I can get that, it would be wonderful to not wake up with acid in my mouth most mornings.


Well that is pretty much my update for now, I am off to bake some new bread recipes and make a new cheesecake recipe. I know not diet but I am in the baking mood lately hehe. Hope everyone else is doing well.




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Hi Jean,

It's good to hear from you again, although I'm really sorry that you're not feeling so well.

It does sound as if your rheumatologist has realised the gravity of the situation though and is keeping a close eye on you for further developments. I've included a link on Skin rashes which I hope you will find helpful.

Like you, I also take Prednisolone and I would agree that it does tend to increase the appetite! sad.gif I try to ignore that as much as possible!! wink.gif When I first started taking it I was told to take it with or after food and also to take it in the morning as it can cause disrupted sleep patterns and weird dreams. I've never found that but it did cause me to be bouncing off the walls for a while with unrestrained jollity (I have rather an extrovert personality anyway, so it became rather wearing for my nearest and dearest!! wink.giflaugh.gif )

I've never had the Nissen Fundoplication Surgery but I know quite a few of our members have had it successfully.

Enjoy your baking and do keep us up to date on your lung function tests and ECHO.

Jo Frowde

ISN Assistant Webmaster

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ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hello Jean

Having an ECHO and lung functions tests is never a bad thing, the results...well that can be asomething else! laugh.gif I'm still waiting for the full results from my specialised ECHO in particular how high is high for the pressures in the right side of the heart. :angry:

Steroids can increase the appetite, have a look at weight gain with prednisone(prednisolone). Having healthy snacks within reach is a good strategy. Maybe the steroids are behind the need to bake because after you bake you eat! :great:

Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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International Scleroderma Network (ISN)

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