Hcl

[Gemllo]

Recently diagnosed with dle have a consultants appt in 3 weeks to hopefully start hcl. I'm assuming I'll just be given a prescription or do I get a choice of which hcl I'd prefer??

I've had the eye test plus blood /urine tests

Thanks in advance for any advise I'm feeling like a little fish in a big ocean at the moment

[Krazykat26]

You're not alone Gemllo 💐

Yes you're right..the usual process following diagnosis is to start on hydroxy...that's what happened with me anyway..I have a diagnosis of SCLE affecting my skin.

Many people find the zentiva brand of hydroxy the most comfortable to take..some types cause gastrointestinal problems..but zentiva seems to be tolerated by more lupies..u could ask for zentiva to be on your prescription.

The usual dose for hydroxy depends on your body weight..I'm on 400mgs per day which is the maximum I believe..I'm a big old bird though (tall)!!

It does take a while to build up in your system so u may not feel any benefit for a couple of months..it might seem like it's not working but it is very effective in helping with symptoms.

Another thing I will mention is that it caused me to have heartburn when I first started taking it..n it says on the box that u can't take indigestion remedies whilst taking hydroxy..the way I found that made it easier is to take it with milk (I use goats milk).

Hope this helps. Good luck for your upcoming appointment xx

[Gemllo in reply to Krazykat26]

Hiya thanks so much for your reply it's just all a bit daunting but great that you've taken time out to answer my question I really appreciate it x

[Krazykat26 in reply to Gemllo]

You're most welcome 💐

I totally understand about it being daunting n worrying at first. I was diagnosed with SCLE in early part of 2017 n I wasn't on the internet..I didn't get internet until last year n oh my...it's made such a big difference chatting with others who understand!!

Keep posting... we're all muddling through this together!! 🤗🤗Xx