Just diagnosed

[Siouxsi]

New to LUPUS

After 2 years of being unwell have finally been given a diagnosis of lupus and been put on meds Hydro. Just wanted to know how people have got on with this drug? Any major side effects, has it helped your symptoms etc

[Lupiknits]

Yes, I was prescribed hydroxy 200mg straight away. It’s important to get your eyes checked regularly as it can cause problems there.

The effects build up slowly and I was told 3 months. In my case, it was more like six. It hasn’t been a wonder drug for me, but I wouldn’t stop it either: I have benefitted.

In the first couple of weeks of taking it, it upset my stomach a bit and made my skin very, very itchy, but both of those problems went.

I hope this helps.

[Siouxsi in reply to Lupiknits]

Thank you

[loopy4me]

I exactly mimic lupiknits response. It’s helped my aches and pains. But no upset stomach. However, I have just figured out it is giving me cottonmouth at night, like midnight till six. I reduced my dose from 400mg to 200 mg. This has subsided my cottonmouth such that it is not overwhelming. I plan to stay at 200 mg. Note: I have not read anywhere that dry mouth is a side affect. But it sure appears to be.

[Lupiknits in reply to loopy4me]

Could the cottonmouth effect, which I’m assuming is dryness, because I haven’t heard the phrase before, be something overlapping? Are your eyes dry too?

I’m asking because I was in a research study that demonstrated I have mild Sjögren’s.

At nighttime I use xylimelts that stick to the inside of my mouth and gently melt through the night. A bit gooey when I wake up, but if I ever forget them I wake up in the night so dry that everything in my mouth seems to be stuck to my teeth!

Of course, many meds can cause a dry mouth, and I take a number of them with that side effect.

[loopy4me in reply to Lupiknits]

Yes, cottonmouth is a term for dryness. I thought it was Sjögrens but it started about two weeks after starting hydro. Recently, I changed my med from 400 mg to 200 mg and the mouth dryness subsided quite abit. I’ve not experienced eye dryness at anytime. No problems at all with eyes. Sure seems like the hydro pills are the cause

[F1zz]

I have got on really well, I would say it took 4 months to really kick in though. Also make sure you have eaten before you take it x good luck x

[TM1970]

I was amazed how much this drug helped me, but as the disease progresses so too will the treatment to avoid organ involvement. X

[Hamptons]

Was incredible the impact it had. Been on it 9 years. Can feel nauseous when I first take it but wears off. Have the regular eye checks done at local optician. Friend just started it and has found impact incredible.

[Habsblue]

After being diagnose ws put on hydroxychloroquine. Was ok with it for 3 months..then had a skin flare up/ reaction. So am off it and now on steroids until the docs have decided what med to put me on next. Since being diagnosed in September..started with joints swelling crucial joint pain. Then went away and now skin and onto to my kidneys now..in the space of 4 months. Hope this helps. Goodluck

[Cas70]

I have Lupus and Sjogren’s - Hydroxychloroquine really helped with aches and pains and energy. Must be taken with food. It is a slow release so you have to be patient. You just realise you are feeling better day by day. Don’t worry about side effects, unless one pops up and it’s not good. Good luck

[svfarmer]

Hi and welcome to the group I too have Lupus I was put on hydro and methotrexate which took a good few months to kick in and get me stable , unfortunately I had vision problems after being on it for about 6 months, I was getting loads of blurred vision, I was referred to eye hospital and confirmed that the hydro was causing my eye problems so had to come off it, I am now very tired all the time so it really did help with fatigue- but everyone is different and hope to works for you x

[Hoofprints in reply to svfarmer]

Hi there. I am very sorry to hear you had problems with taking hydroxychloroquine. I am fairly new to this site having recently been diagnosed with urticarial vasculitis syndrome, which my rheumatologist explained is a lupus-like syndrome. I have not tested positive for lupus itself on blood tests, although I certainly have a lot of problems that fit the lupus picture, including rashes, painful joints, muscle weakness and extreme general fatigue.

I have just been prescribed hydroxychloroquine, but have been nervous about starting it because I am not sure whether the eye problems it can cause to some patients are reversible if the drug is stopped in time. Have your eye issues completely resolved now that you have stopped the drug? No one I have spoken to at the hospital has been able to tell me what the percentage risk of developing eye problems on this drug is, or whether I will be more susceptible given I have naevi (moles) on my retinas. These naevi are benign at present, but I have them monitored at the opticians to check there is no growth yearly. Any tips or information you could share about this drug would be greatly appreciated. Thank you.

[svfarmer in reply to Hoofprints]

Hi yes when I came off of the hydro the eyes returned to normal so maybe you should try it and see if you get any problems you can always stop it if you develop any eye problems- best wishes xx

[Hoofprints in reply to svfarmer]

Thank you so much for letting me know that, and for replying so quickly. I really appreciate it. Hearing the experience of other people who actually take the drugs and have autoimmune conditions is so valuable, even though it is so often dismissed as 'only anecdotal'. Take care and the best of health (within disease limitations!) to you xx

[svfarmer in reply to Hoofprints]

Xxx

[jetjetjet]

I have benn on Hydroxy for 8 years or maybe 9. it is a slow acting drug so you have to give it time - it took the full six months to get me to full 400 ml a day . i use to have to have my eye's checked 2 times a year but now it 1 time a year .Hydroxy toxicity for glaucoma and cataracts .

[Chanpreet_Walia LUPUS UK]

Hi Siouxsi,

Hydroxychloroquine is a very common, and useful drug to treat lupus.

Below is information taken fromThe Lupus Encyclopedia about possible side-effects that can occur from taking hydroxychloroquine:

Common: stomach upset, nausea

Common after many years: blue-black or grey pigments changes of skin and gums

Uncommon: insomnia, nervousness, light sensitivity due to corneal crystals, rash

Rare: weight loss, anaemia, low white blood count, loss of appetite

It is important to note that hydroxychloroquine takes a while to become effective; it may take 3-6 months for it to reach its full effect. Learn more about the drug in our medication factsheet - lupusuk.org.uk/wp-content/u...