Feel like im moaning: Since my last visit to... - LUPUS UK

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Feel like im moaning

leighlfc profile image
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Since my last visit to scleroderma clinic I as a female have been taken off viagra 3td to a 38 hr sustained release tidilafil (viagra) but lost a lot of weight achy but due to covid I’ve not been able to question it also I’m ana positive uctd servere raynauds ichemic finger but feel my disease is invisible not that I want sympathy it’s just I’ve not had a letter of government to say I need to sheild

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leighlfc
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Jmiller623 profile image
Jmiller623

I’m so sorry you are feeling so unwell and unable to get the care you need. Tadalafil shouldn’t cause weight loss. You need to tell your doctor that you are losing weight esp if significant - as a doc we always worried if you lost more than 5% in under a month and 10% in less than 3 months.

Please let your doctor know. It needs to be worked up. Sending hugs your way! ❤️

leighlfc profile image
leighlfc in reply toJmiller623

Thanks love I’m 47 5ft1 average weight 8 stone but can’t get to 6 and a half on nutrition drinks 3 times a day eat well I’ve got 3kids a partner of 23years I work but if I go shopping or out off my area people think I’m a drug addict or shop lifter it very disheartening x

Spanielmadlady profile image
Spanielmadlady in reply toleighlfc

That is so wrong and it makes me angry people are so judgemental bet not one of them would last 5 mins in our shoes.

With regards to shielding it pauses for all of us even the extremely clinically vunerable like me on 31st july.when we are let loose on 1st aug the advice is to stick to strict social distancing and stay home as much as possible.as measures are easing its maybe too late for a shielding letter but you can still follow shielding advice .I wont be running up the street shouting I'm free on the 1st aug I'm going to continue to shield.

I hope you will contact your gp regarding your weight.im the opposite I keep putting it on but that's the steroids and maybe ask for a rheumatology appointment or referral.

Keep in touch and let us support you.keep smiling my lovely.sending a big squishy hug and a sloppy kiss 🙂

Jmiller623 profile image
Jmiller623 in reply toleighlfc

I’m so sorry. I know exactly what you mean. People can be so judgmental. They have no idea what our lives are like and the struggles we go through every friggin day. Your doctor should look into why you are losing so much weight if not much has changed in your diet. It might also be a good idea to see if you could get a referral to a nutritionist. They can help you balance calories in the right way so you don’t lose.

leighlfc profile image
leighlfc in reply toJmiller623

I’m under nutritionist she prescribed me 3 altraplen a day compact milkshake only seen her twice I put a pound on but due to covid had no follow up but still getting drinks so hopefully should gain soon thanks for your reply keep safe xx

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