In your experience how long do you need to take hydroxycloroquine to know if it works , or know for sure that it is not working?
I have seen some posts recently where an almost instant effect was seen. I was told to it could take 12 weeks when I started to take it. It’s now been nearly 6 months with no respite.
My rheumatologist wants me to continue. I feel worse now than I did when I started it. Time to call it quits or persevere?
Sasha Mine was not instant by any means. and it took me 6 months to get to my full dosage of 400 a day - i have always told people - we all are different and some it may not work for BUT i was a late bloomer with it .
Mine took about 3 months to start having an affect but def agree that some people takes less and some takes more time. Are u on 200mgs twice daily?
Definitely took several months for me and up to a year of changing dose and adding in NSAIs to find a good combination that worked for me. Keep with the hydroxychloroquine but keep reporting your continuing symptoms so adjustmement to your dose / drug regime can be made. Wishing you well
Current dose is 400g 3 x week and 200g 4 x week. Started off at 200g daily changed after 3 months. No suggestion to change dose further. Am told next stop is methox.. or azathiop.... But that change is unlikely to happen any time soon as they will not start me on those in current climate.
Do some of you guys routinely take NSAIDs alongside? I was told only to take for a max of 14 days and again not in current climate.
Feel like I’m stuck in a loop of feeling awful with no way out because of this virus!
It took about 3-4 months for me but find my symptoms have greatly improved re hand, back and foot pain. Not had so many blood vessels pop in my hands either...could just be a coincidence. I tend to get flares in warm weather so will see how it goes this year. Iam on 400 mg daily and been taking it for 18 months. Hope you get some relief from your symptoms soon.
When I first started I was told 6 months.
No idea,sorry. I have been taking hydroxy 200 for about 5years March to October only . There is no difference taking it or not but I would not risk a flare up by omission
It has some sun protective effect so if you are at all sun sensitive then worth sticking with it until at least August I would think. I take a higher dose from mid March through to September (400mg - 300mg rest of year).My consultant had dropped my dose just before the hot summer of 2018 as she was worried I’d been on it so long (19 years) and it was awful - hence my summer dose, negotiated after an ophthalmology review gave my eyes the all clear. Also helps the fatigue.
I would say persevere- we are all so different. I just started on 200mg per day and it does help. It is a tough time for you - do you take Vit D and B12 - I took those at the same time. After a while I realised I was having a good day - I just got stronger. I have since had to go on Prednisolone but it is such a weird illness. Good luck 😉
Thanks everyone. I managed to speak with rheumatologist nurse today. Plan is to continue for now - they are giving me a prescription for prednisolone as well. Hopefully this will help me feel better. Seems that if hydroxycloroquine
Really does not work they will add in methoxocate as well but that involves fortnightly blood tests. I’d rather not have to deal with that too so fingers crossed the pred gives me a boost and the hydroxycloroquine kicks in 🤞
Hi Sasha, 8 months for me. I started on 500 mg a day but now the maximum dose is 400 mg per day. It took 8 months to get the full effect, but this medicine is a Godsend. I had severe muscle pain and weakness, joint pain, face and neck rash, pretty severe fatigue. It has helped every symptom except rash on my neck and I still struggle with fatigue. My Rheumatologist has suggested Azythroprine or methotrexate but I am steering clear of those after researching them. I wish you the best of luck with this medicine and in your journey! X Nan
Nope. No Way.Never again!
shortage of Zentiva brand hydroxycloroquine
Hospital again.....
Dismissed by Rheumatology department yet again, Erythromelalgia - lupus? hydroxchloroquine
Headaches, again. Steroids?
