Terrified!

[DaftCat]

My rheumatologist has recently told me that my blood test has come back as positive for Lupus but that it is currently dormant. I have started taking Hydroxychloroquine 200mg and it is not agreeing with me at all. Ive been taking it after my evening meal but I am having indigestion and other side effects almost immediately. Tonight, I was sick as I slept which was terrifying.I am absolutely worried and scared.

[Oshgosh]

Perhaps you need to leave a message with the consultants secretary,stating the problems you are having with the medication.

Have you tried taking it at different times of the day? .it might work better for you.

[DaftCat in reply to Oshgosh]

Thank you for replying. I had been on it before and remembered it wasn’t a great experience but was willing to try again. Especially since the new diagnosis of lupus. Ive tried ringing the rheum helpline but it’s not in use as not enough staff, so I guess I have to ring tomorrow but what would they offer me as an alternative?

[Oshgosh in reply to DaftCat]

I don’t know what they can offer.

I think lupus is a very sneaky disease,it manifests itself in so many ways.

I also have to ring docs secretary tomorrow.

Good Luck

[DaftCat in reply to Oshgosh]

Thank you x

[suzannah16]

I find I have to take it on alternate days. I get very dizzy migraines if I take it everyday.

[DaftCat in reply to suzannah16]

I wonder if they’ll tell me to take alternate days?

[misty14]

Hi daft cat

Sorry to read your having problems taking Hydroxy . I too am having similar problems and are now trying every other day which is better!. Another possibility is trying another brand of the medicine as lupus sufferers can react to the different fillers they put in. You might like to try Zentiva or Black rock as they seem to be kinder than the quinoric!. I've found black rock to be better and want to try Zentiva as I might be able to go back to daily dose!. You can ask your GP to state on the prescription which brand you need!. Hope that's helpful and you can take them better. Xx

[DaftCat in reply to misty14]

Hi Misty14. Ive checked my tablets and they are the black rock ones.

[misty14 in reply to DaftCat]

I'm going to try Zentiva to see if I could take it everyday. Condition isn't too great now!. It's a hard juggle we have!. Xx

[DaftCat in reply to misty14]

It certainly is!

[Krazykat26]

Hi DaftCat

U could try taking hydroxy in the morning instead. I had awful problems with nausea n indigestion when I first started taking it..what helps me is taking my meds with a glass of goats milk..it sorted it out for me. Xx

[DaftCat]

I’ll ring tomorrow and see what they suggest. X

[DaftCat]

Well...I couldn’t get hold of anyone due to staff shortages and I’ve been in such a pickle that we decided I would go see someone privately. I went tonight and it was the same consultant!!

The Hydroxychloroquine has been changed to steroids. He explained a bit more but I don’t feel reassured really. I’m having a shed load of bloods taken tomorrow and will have to wait four weeks for the results. He kept referring to ‘preventing organ hit’ which is a horrible phrase. If it’s active now then I will be put on heavy duty meds.

I hate this!

[DaftCat]

Update! I couldn’t get hold of anyone from rheumatology so in desperation I paid for a private appointment. It was the rheumatologist I’d just seen! 😂😂 . So I’ve had more blood tests done and just need to wait for the results from that.

I just couldn’t get on with the hydroxy and so am on steroids. My GP texted me to say they’d noticed my Vitamin D was low so I’m on supplements too. Why didn’t rheumy spot that?

I think I’m slowly getting my head around everything. I’d be lying if I wasn’t still scared about it all though!

Thank you to those who replied to my post x

[Lisalou19 in reply to DaftCat]

Oh I shouldn’t laugh but the same rheumatologist 🤦‍♀️😂😂

What are the chances of that

X

[DaftCat in reply to Lisalou19]

Oh I know!