One month post Hydroxychloroquine withdrawal.....

[Izzy123gym]

Hi folks!

I am one month post Hydroxychloroquine withdrawal( RA/OA); I had to stop this drug as I had severe skin rash and other horrible symptoms.

I have still got this awful, itchy rash which looks more like eczema now.

Currently, I m only on Meloxicam, antihistamines and painkillers. Has anyone had a similar reactive rash for this long and, if so, how did you treat it/ get rid of it?

TIA.

[eekt]

Hi! Hydroxychloroquine has an incredibly long half-life - 60-90 days!!! - so it will stay in your body for months. I had bizarre side effects after only two weeks building up from 200mg/day to 400mg/day, and the rash just kept on developing and spreading for a week after stopping!

If it is the Hydroxy, the rash will start to go when it's ready (uh, sorry, not much help) 😕 xxx

[Izzy123gym in reply to eekt]

Thank you, eekt! I suspected as much but I hoped someone would contradict me.

I've tried different antihistamines and creams but NOTHING seems to deal with the itching.

I'm seeing the GP on Tuesday so maybe she'll come up with something effective!

Can I ask you what meds you tried after Hydroxychloroquine? At present, I'm feeling very fearful of any new meds!

X

[eekt in reply to Izzy123gym]

I had a second attempt with Hydroxychloro at 200mg/day with even more odd side effects, and third attempt at 200mg two/three times a week has been tolerated sinc the beginning of the year. I ramped it up for a couple of days when my immune system went into overdrive due to a cold, with no ill effects.

My Rheumy suggested Azathioprine last year as my dsDNA was increasing, but with no other manifestations, I decided the risks outweighed the benefits. dsDNA back to where it was now, Rheumy thinks due to the Hydroxychloro, I reckon it was the long sunny summer...I'm not only not photosensitive, but I'm like a solar-powered bunny toy!

My lips swelled and peeled with the full dose of Hydroxy and a fabulous pharmacist suggested baby calendula cream by Weleda, which healed them quickly!

I'm very cautious with pharmaceuticals - I've not had many so far, but I do have extreme reactions, so I start low, whether instructed to or not.

Hope you get some itch relief soon, be well! mo xxx 🌻 🌻 🌻

[Izzy123gym in reply to eekt]

Thank you so much for your reply, Mo! I think I'll try Calendula; I've used it before but had forgotten about it.

Blood tests tomorrow so I'm hoping to glean some info from them; I'm in a lot of pain but I suppose I'll just have to wait!

Izzy 🙂

[eekt in reply to Izzy123gym]

🤞🤞🤞 x

[leslieliesel]

My initial rash that lead to my DX lasted MONTHS!! I take Hydroxychloroquine and my skin Rash is gone?...seems to be.....what are the withdrawls like? I had prednisone withdrwl symptoms and was only on them for a few months

[Izzy123gym in reply to leslieliesel]

Leslie, with the benefit of hindsight, I realise I was unwell the whole time I was on Hydroxychloroquine! I burnt up night and day; I know it was a hot summer but I was like a furnace 24/7. Day and night sweats we're awful.

My stomach/ bowel was very upset throughout. I had headaches constantly and I m a migraine sufferer. I had a virus every ten days or so and loads of cold sores.

I've still got the rash but feel better in myself even although the pain has kicked in with a vengeance!

Izzy x

[leslieliesel in reply to Izzy123gym]

Oh dear...the pain is back now that you are off Hydroxy.. It is really a juggling act..nothing is great and always changing one symptom for another...I actually feel that Hydroxy... is helping me....I couldn't even grip things my hands hurt so much before DX and Hydroxychloroquine.....I do hope you find the best treatment for you to feel your best..with Lupus...ugh

[Izzy123gym in reply to leslieliesel]

Thank you, Leslieliesel! 🙂