New kid on the block: Hi all, I am new here, but I... - LUPUS UK

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New kid on the block

Papilon73 profile image
5 Replies

Hi all,

I am new here, but I am veteran with SLE. It's been exactly 20 years since I was diagnosed with it. I hav been doing pretty good for all this time. I was on prednison, very low dosage till 5 years, when I moved to Canada, where my new Canadian Rheumathologist changed it to Plaquenil. I have been doing pretty well till a month ago, when I first had cold which ended up with sinus infection and pink eye, so I was on antibiotics (nasal spray, tablets and eye drops). I finished with them two weeks ago. I had my regular six month lupus check up 10 days ago, which showed, I was ok. Then seven days ago I felt tingling and numbness in rib cage area and some pain. Then I felt painful lower back and left leg. I thought it's my chronic lower back pain issue, that needs some exercising. Eventually three days ago I came back home and noticed red rash in my lower back zone and back of my left tigh. Then, I left to GP next day and found out that I have shingles. Pretty bad one as dr said. All that wouldn't be so frustrating for me if I wouldn't have fibroid surgery in 8 days. So, I was prescribed antiviral drug for shingles for seven days. I will finish medication three days before surgery. I asked GP if I should cancel surgery. He said, yes. Then I called gynaecologist who will operate me and she says no, no need to cancel. I am stressed and don't know what to do. I called my Rheumathologist and left her message, but she is not calling back. Does anyone have similar experience or advice? Please help me. Thanks.

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Papilon73
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Kelly2000 profile image
Kelly2000

Friend, I just stumbled upon this site. I have SLE and Sjogrens. 0nly 46 and detiorating fast. Severe female issues now. Just trying to connect with sle friends.

Hi I'm in similar situation myself at the moment. Two weeks ago had a about of D and V from my grandson, within 48hrs it turned into shingles. Three days later I was due to go into hospital for an op to remove fibroids and polyps. I phoned and they cancelled it, obviously as it was so closed plus the D and V. I have another date for the 26th. At the moment I still have skin lesions and nerve pain after nearly two weeks. GP said that he didn't want to give me anti virals as it was better to let it "play out". I still feel unwell. Very fatigued and feel the op would knock me out, even though before I felt well enough to have it. However, if all concerned feel you are ready and no your past history I suppose you have to trust them. If you feel your body isn't strong enough let them know. I think I will wait until Monday, If I don't pick up I may cancel. All the best.

nanleighh profile image
nanleighh

I hope they also put you on a burst of prednisone, which will make the case milder. I had shingles last October and was given a medrol dose pack and antivirals and I never had any pain with it. I hope you feel better very soon as I know that is miserable.

Papilon73 profile image
Papilon73 in reply to nanleighh

Pain is not bad. GP gave me Tylenol #3 which considers narcotic, to use it when I need it, but instead of four times daily 1-2 tablets, I am taking 1 tablet twice. The problem with Prednison is that is immunosuressive. I had it for a long time and I know a lot about it. I am fine now. I just wish my Rheumathologist called me, so I know what to do about the coming surgery. She follows me five years. Neither GP nor Gynecologist now me and my health hystory. Here in Canada is hard to get family dr, so every time when I go to walkin clinic I have another GP seeing me. ANd Gynecologist saw me twice.

All the best.

Wendy39 profile image
Wendy39

Hello! I can't help with advice re surgery and shingles I'm afraid but I wanted to say hello and welcome. Hope you get some helpful replies from some of our wonderful members.

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