Latest Trip to the Rheumatologist.

[uknlv]

Hi everyone,

I havent posted in a while, 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 I'm afraid I will get out of breath and drown! hehe

I'm 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.

[Emma2]

I'm sure you would have some volunteers to test out your finished recipes from this site - purely for research purposes of course :-). You must be disappointed/frustrated after your last review - it really does seem like one thing after another with these various conditions we have. Hopefully the new medication will help a bit. Take care.

[zenabb]

It seems to me that you are well followed by your medical team and they will take care of you.

[uknlv]

I just wanted to add, a week on the steroids and boy has my energy returned! I do not feel the need to sleep after 3 hours now. I can do a lot more and only get tired in the afternoon if I do ALOT of stuff. The breathing is still not good, but they do seem to be helping the rest of my issues! So far...

[Anteater in reply to uknlv]

So pleased the steriods are helping you xxx