Lupus neutropenic & lupus

[englishrose67]

I have SLE which I have monthly infusions of bilimimab as steroids and hydroxychloroquine doesn't keep my lupus under control. My neutrophil count is always low around 1.3 .My dad passed away 2 weeks ago and would like a memorial tattoo but not sure if it would be safe.I also have antiphospholipid syndrome but never had a clot .

Should I get in touch with rheumy consultant before I go ahead ?

Thanks

X

[Penguintaz]

Definitely check,

I know it can be unsafe for us due to risk of infection from the process or the tattoo causing inflamation.

I stay away as I worry I could also be allergic to the ink but if your rheumy says not much to worry about go ahead!

[SLEEPINGDOG]

Hi, my friend,

I have been on Hydroxychloroquine

for about 5 years now. It's rife with side effects! I'm sure you know that it uses Quinine which was found to combat malaria, but one of its many side effects is that the quinine part of it has been found to help us by holding back the onslaught of Lupus.

Originally, when Lupus struck, I had found the skin peeling off my back, inability to get my limbs to obey the brain instructions - like my left foot seemed to be glued to the floor and I couldn't move it - my left hand got stuck to the bannister and wouldn't obey my brain's instructions to open and let go until my wife peeled the fingers off the woodwork one by one, but Hydroxychloroquine

sorted all that out. At first I got the runs a lot, but taking the meds with a meal seemed to help with that. They say it can cause hair loss, but my age and metabolism has beat Lupus to it, so that one is of no concern to me! Fortunately I don't seem to suffer from nausea, which many people seem to.

Weight loss, and appetite loss both seem to be common side effects and why, oh why, has that effect by-passed ME? when I first developed Lupus I lost two stone in two weeks and was put on a drip until I found myself able to eat solids. However, It seems to have increased my tinnitus and exacerbated the hereditary family curse of skin problems giving me the odd rash which I've never suffered from before. It also appears to have taken away my self control substantially, and my eyes seem to leak at the silliest things, like sad bits in The Simpsons! Are there any? - my eyes think so . . . . (see what I mean?) but give me a story like 'Call the Midwife' and I'm a total wreck! and I also lose my temper very badly (which I never used to do). Fortunately, I'm also very laid back, so I quickly regain control again, before I whack anybody.

My joints all ache and my balance has almost vanished, so no more cycling or driving and walking [my ex-hobby] is not for me!

Apart from that, I'm fine and in the pink of health !!!

All the best. And Yes! speak to your Rheumy ASAP.

John