Newly Diagnosed - help!

[Becalming]

Hello I was actually diagnosed with Lupus a year ago but have been in denial. I now find the pain, fatigue, temp fluctuations and rashes too much and am considering dropping my hours at work. I have been in extremely anxious about taking HCQ and have not taken it believing I can control the RA with pain killers. I guess I am worried about the side effects and don’t want too add to the meds I put in my body - I already take levothyroxine for an underactive thyroid. I would love some reassurance that HCQ will make me feel better - details of side effects I might get - and info on any other combinations of meds that people may take and dosage. Thank you!

[Spanielmadlady]

Hi.many of us take hydroxy its one of the least potent drugs and has been widely used as a treatment for malaria for many years.Lupus medication may seem frightening but try and get your head around the fact that lupus damages organs with connective tissue so heart,lungs kidneys and brain .medication is also about protecting those organs for the future and ultimately your quality of life.ive been on 400 mgs of hydroxy for nearly 4 years and I also take the much stronger immunosuppressant mycophenolate. I have lung,heart and kidney issues after my lupus went unchecked for 5 years.eye tests are a must before you start taking it and every year as there is the possibility of retinal toxicity but it is rare.side effects obviously differ for everyone for me i had bad headaches for about a month .lupus meds take months to start to work and it's a case of trying to find the drugs combo that works for you so there will be no quick fix .

P s I currently take between 25 and 40 tablets a day depending on my current steroid dose . I also have hashimotos which is autoimmune thyroid disease but can't take levothyroxine so need thyroid extract. Best wishes x

[reddogger]

I take Hydroxy. So there are some things to consider here and perhaps you can understand where Im coming from. First, you may or may not have side effects - everyone is different. I do have side effects but that is how I react to almost every med I take. My brother is the opposite - never has a side effect.

Hydroxychloroquine isn't an immune supressant, its an immune regulator. You may have some changes in your immune system but you won't know that until you take the meds.

Finally, taking pain meds for RA is fine . If the pain killer is one that helps with inflammation - even better - but your not addressing the root of the issue. with just pain killers

[svfarmer]

SpanielMadlady has given you great advice - HCQ is like she said a less potent drug - I’m taking a much stronger drug Methotrexate which I’ve been taking for 5 years and I don’t get any side effects at all on it - I also take a combination of other tablets so take about 12 tablets a day as do most people with lupus - please don’t be afraid to take them as they will help you - sending hugs 🤗🤗😘

[StriatedCaracara]

Re: Hydroxychloroquine, on YouTube there is a wonderful 'Lupus Europe presentation' by Dr Kaul, St George's Hospital .

I'm unable to link directly to YouTube clips but include below the presentation title to Google.

How Key Lupus Drugs Work - Lupus Europe Convention ... - YouTube

Look how outcomes change once people take HCQ - see the ten year graphs.

Onset of organ damage moves...

If you are worried talk to rheumy about it too.

[Krazykat26]

Hi Becalming 🤗Welcome to the group!! 💐It's hard coming to terms with lupus for sure but I'm glad you're beginning to accept that it's there and are deciding to battle it.

The meds that we are on do eventually give us some quality of life back. Like you I didn't ever take medication but unfortunately now, like the others, I'm on loads!!

Hydroxy I started in 2017 n I've been on it ever since with other meds prescribed along the way.

The only side effect I had when I started it was heartburn..you'll notice on the packet that it says u can't take heartburn medication with hydroxy so I started to take mine with a small glass of goats milk which solved the problem.

I will warn you that if u get the Bristol Quinoric brand it tastes foul n I tend to swallow it as quick as possible!! Zentiva brand doesn't have any aftertaste.

I hope u decide to give it a go n that it helps you 🌈😽😽xx

[MusicalFurbaby]

Hi Becalming, getting a diagnosis is big news! I understand that feeling of not wanting to look at medications, just tolerating the symptoms as best as possible, but many of us reach a point of not being able to bear it anymore.

I’m on hydroxy and it has helped with my rashes in a big way. My specialist prescribed it because ‘It’s very well tolerated by most people’, meaning the side effects are minimal and uncommon. I have not experienced any side effects myself. I am on a cocktail of meds at the moment, including metformin, an oral contraceptive and vitamin supplements, but the hydroxy does not interact with any of these.

I hope you find more information about your other meds from this forum. Good luck! We understand how you feel, and we’re here for you 🌻

[MrsMarigold]

Hello Becalming. Hydroxy has made a huge difference for me. I take 400 mg in divided doses a day since 2016. It is very effective With rashes, joint pain and fatigue. I think it made me tired at first. Now it has no side effect but heartburn. (Not every day). I also take 5 mg prednisone that helps treat another condition and is effective for lupus as well. Pain meds help your denial of the disease because they squash some symptoms. Only meds qualified for inflammation control of lupus will help quiet your immune system. None of us likes taking all these meds. We just must. Best, Titters