Hellllppp!!!!!!

[Sandie1964]

Hi all have just got back from the rheumatologist with my daughter and she has been prescribed hydroxy chloroquine to take 2 a day but didn't say if this was taken in 1 go or 1 in morning 1 at night (leaflet with medication say this) . Still not sure if she has an official diagnosis cos rheumy briefly mention the word lupus then went off on a tangent. Although rheumy did advice daughter to be careful with regards to the sun on our upcoming holiday with regards to the sun because this may cause a flare up. So now we waiting for her letter to come through because that often tells us more than the actual appointment.

[PMRpro]

If in doubt ask your local pharmacist - they know more than doctors about medications!

If he mentioned sun it sounds as if lupus may be on the list. There is a very good thread about where to go on holiday and the sun you might find helpful:

healthunlocked.com/lupusuk/...

[EOLHPC]

Hello sandie

I'm glad your daughter's rheumatologist is starting her on prescription treatment. PMRpro is right: a pharmacist (&/or your GP) is the one to ask when you have any questions about taking meds....so I hope that's what you will do now

But i'll just mention that 2 hydroxychloroquine tablets per day is a treatment that rheumatology starts many of us on at the very beginning.

I hope the rheumatology report arrives before long.

I'm glad you're here...and am wishing you both every best wish

Take care & please keep us posted

🍀🍀🍀🍀 coco

[Sara_A]

Hi, I take one morning and one at night as I started taking 2 at night but it seemed to upset my tummy. So I now take one with breakfast and one before bed, just make sure I've eaten and it seems to be ok.

[Sandie1964]

Thank you all for your response. I know we are at the start of a long road and is so useful to have somewhere to turn to get help.and advice. I just want to be able to help my daughter as much as possible as I know she struggling at the moment.

[Sara_A in reply to Sandie1964]

That's really good she has got u to help and support her and that u are learning about the condition with her, that will be a big help just having someone who understands what she's going thru.

I never really told my parents much as I didn't want them to worry about me and I think my dad first felt guilty like it was his fault that I'd got this somehow.

[Sandie1964]

She is only 20 and has had difficulties since her early teens. We struggled to understand at first not realising her pains were real and she wasn't making it up. We feel so guilty now. The first time we really started to get an idea was when she started to come out in rash in the sun. From there they found that the ana bloods were high the first time 1:160 then 1:640 the next blood test so she was then referred to rheumy

[EOLHPC in reply to Sandie1964]

I think you are really special sandie🌟🌟🌟🌟...please try not to feel guilty...perhaps my story can help you understand why...and encourage you:

my lupus was diagnosed when I was an infant but my mother never told me. Doctors treated me during my flares, but ma kept the cause secret. I just thought I was mysteriously more sickly than all the other youngsters. So when I left the USA & moved to the uk at 21, the NHS took me on unaware lupus was underlying most all my health issues. Had my mother told me about my diagnosis, it's possible daily meds could've minimised the degree of cumulative multisystem damage that had occurred by the time a brilliant NHS rheumatologist lupus expert rediagnosed me in my 50s a few years ago. Now I'm 5+ years into her daily combined therapy treatment plan, and am feeling less pain & more stamina + resilience than i've had since my 20s. My mother is still alive...we've talked over what she did...she's explained she thought I just had some sort of extra bad flu over & over...we're closer now...and she is glad I'm finally being helped so much, which means a lot to me.

So, I'm very glad you & your daughter are so close with each other and with her doctors as well...my feeling is that this is a big plus for you all (that includes her doctors)

🍀🍀🍀🍀 coco

[Sandie1964]

Oh thank you so much I am just a mum who wants to do the best for my daughter we were going to cancell our holiday but my daughter is adamant she wants to travel so we will just take it at her pace making sure she is smothered in suncream and make sure she takes plenty of rest this website was the best thing I have found. I'm looking at finding a local help/support group as well so she finds other people who understand what she is going through. I can try to understand but if she could talk to others in the same situation as she is in I'm sure it would help her

[EOLHPC in reply to Sandie1964]

I think you've got a wonderful attitude & a good plan...am so glad to meet you. Have a wonderful holiday...take care...ENJOY👌👍👋👋👋👋🍀🍀🍀🍀

[PMRpro in reply to Sandie1964]

Where are you off to? Somewhere nice and not cold I hope! A couple of days ago we were sunbathing on Lake Garda, now there is snow in view and a bit further away there has been a foot of the white stuff! It's October for goodness sake!!!!

[Sandie1964 in reply to PMRpro]

We off to majorca for a week so looking forward to it spending some chill time as a family

[Cas70]

Oh the smattering of information and the lack of naming a diagnosis is so common! It isn't you. Morning and evening with food for the Hydroxy or she could get a tummy upset. This site is marvellous for info - read their reports and posts for tips and info. Hydroxychloroquine is slow release so will take a few weeks. Drink lots of water! Good luck.

[Sandie1964 in reply to Cas70]

Thank you

[milkwoman]

I take mine on the morning with breakfast (typically 8 or 9 am) and at 5 pm in the afternoon with a snack (usually a rice cake or crackers). No issues.

[Sandie1964 in reply to milkwoman]

Thank you

[Dan30cr]

I had the same. I was put on hydroxy before getting a firm diagnosis. I presume this is because how you react to the medication gives them a good idea of what it could be. It was my miraculous improvement on pred then slow decline and then recovery on hydroxy that seemed to convince my rheumy that I had lupus. This is of course long with all the tell-tale symptoms.

Hope she sees a vast improvement as I did.

[Sandie1964 in reply to Dan30cr]

Thank you she started them 3 days ago and now doesn't see the rheumy until February however they have noted that the lupus anticoagulant was positive as well so they doing more blood tests for that as well

[Hidden]

Hello,

I am sorry to hear that you have been left with a lot of uncertainty after your daughter’s appointment with a consultant. It might be a good idea to see your GP again to discuss the consultant’s recommendations and ask any questions your might have about the medications prescribed.

You might find having more information about lupus useful and you can request an information pack here lupusuk.org.uk/request-info... on our website as well as have a look at various other leaflets we provide about the condition lupusuk.org.uk/publications/