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Short Update

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Hi everyone,


its been a while since I posting and I have been lurking every now and then, mostly busy looking after my husband and little ones.


I went for my rheumatologist appointment on Monday and got the results of my latest round of bloods, which unfortunately didn't show him much more than last time, but in a sense that is good news right..........whatever I have is not progressing very fast, I hope. I am still anemic and my ANA is positive.

I am still on Plaquenil and Prednisone, and I thought he would take me off the Prednisone (7.5mgs) since my joints have been pretty good, but he wants to extend it until January and then wean.

However my general practitioner wants me to taper to 5mgs until January as I have cushingoid features and she feels that the drop would help those problems.


I had a GI flare after some antibiotics I took for sinusitis, which wasn't nice, lots of acid and food getting stuck and SOB, so extra losec and otc antacids helped a little, and I get to see the Gastro doctor soon for my gastritis.


My rheumatologist is sending me for some electro-current (sp?) testing of my hands at the hosptial as my carpal tunnel is getting quite bad, so hopefully that will lead us in the right direction for treatment of that.

He is keeping my diagnosis as UCTD right now.


I am still waiting for the Neuro doctor to give me an appointment for my tinnitus and headaches and dizzy spells, but it is through the public system so I may be waiting for while.

And in the meantime I am going for a rib x-ray and my bottom rib on the righthand side is very painful and I sometimes can't even lie on my right side in bed it hurts so much. My general practitioner thinks it may be inflammation of some sore, but being on Prednisone I worry that my bones are thinning perhaps??



Life has been very busy and tiring, my little boys have all been sick this winter and my husband who has a mental illness has had medication changes which affects his mood and sleeping patterns, so it is all a fine balance in our house of making sure everyone is happy and getting enough sleep!!!


okay this turned out to be a 'longish' update after all!


Love to you all, it is nice to come here and 'spill' all my thoughts out.


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Hi, Irene. Good to hear from you with such a thorough update. I think it's good to put it all out there in one place every now in then, if only to get an overall perspective for yourself. You make a valid point about the fine balance of keeping the whole family on an even keel. Anyway, it's always good to hear from you, so do keep us updated when you can. Hugs to you and your family.

Warm wishes,



Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Irene,


I was just thinking about you yesterday realizing we hadn't heard from you in awhile. One of the reasons I was thinking about you is my son's house looks like it will be selling soon and then they will be off to NZ.


I'm glad to hear that it appears your symptoms are not progressing to quickly, but sorry that you continue to battle these symptoms. You sound like a "wonder mom" and wife. Make sure that you are taking care of yourself a little bit in there too.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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