Not sure !: This week was first week back after the... - LUPUS UK

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Not sure !

LouLamb profile image
12 Replies

This week was first week back after the week off for half term. I haven't taken my hydroxy once this week . I just keep forgetting . Today I am so tired my legs and feet are killing . I'm not sure if it's because I haven't taken the tablet or because it's first week back .

Today I have taken the tablet and am going to try and remember to take it everyday this week coming and see if by this time next week I am tried or not .

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LouLamb profile image
LouLamb
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12 Replies
maggielee profile image
maggielee

When I was suppose to reduce my hydroxy (due to winter months) I didn't realise at first that I was getting achy legs and flu like symptoms and was told by doc to increased it again after realising it after few weeks it was the decrease of meds making me unwell. Good to be observant and see if you are having a reaction to not having your hydroxy .... Did motivate me to remember to take my meds. Feel better soon. ML

Lupiknits profile image
Lupiknits in reply tomaggielee

Yes, try to find a way of remembering. Set an alarm, anything that helps! It needs time to build up. It works for many of us, so please find a way x

debbiemoll profile image
debbiemoll in reply toLupiknits

I did come off it for a month or so- (i had come off steroids for a few months too) then all symptoms returned, sore joints etc being really fatigued, scabs in hair .. and it was fairly nasty. So I went back on hydroxy and it took weeks to get back to being anywhere near better. I stayed off steroids thwn for 2 years but then had to go back on these with a partially collapsed lung.

Probably best to try and keep on hydroxy or talk it through with gp

😍

Lupiknits profile image
Lupiknits

LK calling .....don't forget today's hydroxy Lou x

Kevin53 profile image
Kevin53

Have you taken it? Best wishes Kevin

LouLamb profile image
LouLamb in reply toKevin53

I take in with dinner because it makes me feel sick in the morning ! I try to take it about 5

Bebe76 profile image
Bebe76

Hi Loulamb. When I first started on my lupus meds I kept forgetting my meds as well, or I would take them then later I could t remember if I took them! I now use a pill box which I refill with weekly my meds and vitimins and I use an app on my phone to keep track of the meds, dosage, appointments, refills, and other information and it reminds me when to take them. It's one of the apps that someone m entioned on this forum called Med Helper.

LouLamb profile image
LouLamb in reply toBebe76

I'll have to give the app a try .

Bebe76 profile image
Bebe76 in reply toLouLamb

Here is the website. I use the free version medhelperapp.com

which has ads but they aren't intrusive. If this one doesn't suit you there are several different ones out there. Good luck!

Lupiknits profile image
Lupiknits

Have you taken your med? It's past 5pm. I can keep the nagging .... erm ....reminding up for a long time x i want to get you better !

LouLamb profile image
LouLamb in reply toLupiknits

I haven't actually taken it yet . Now you have just commented about it I'm going to go downstairs at take it !

Lupiknits profile image
Lupiknits in reply toLouLamb

Great stuff 💐

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