Hi again, today marks 5 days being on Plaq. Is it far too early to be expecting any improvement yet?
I was told it would take 6 months but I'm still in hope that it might be sooner. If it doesn't work, what would be the next one that the Dr might try?
Thank you
Hi Razoo, - it took 4 months before I noticed any improvement but it was definitely worth the wait!! I'm much less tired and achey , joint pain and rashes have also improved. Its frustrating to wait but try and hang it there!
Take care
xxx
In my case, multisystem symptoms were chronic & widespread by the time I started plaquenil. So, responses to plaquenil were likely to be widespread & varied. I noticed certain improvements begin in my first week: e.g. the awful smell of burning electrical wires from the palms of my hands & the soles of my feet disappeared. Within the first month: my chronic fatigue was slightly damped down...enough to mean I felt only 80% zombie-like, instead of 90%. Then, as I got closer to 3 months, my chronic joint & muscle pain was damped down from 9/10 to 7/10. It all felt like a miracle. Meanwhile, I did have to intensively manage my chronic upper GI conditions, cause they flared even though I took the tabs with food...but by the 4th month these began settle back to their usual level of discomfort etc. hope you'll let us know how you get on, razoo🍀🌻
Yes Barnclown I will definately let you know how I go. Thanku for your reply and I hope you are feeling great. X
That sounds very encouraging. What does upper GI mean? My neck and shoulders have started to really ache since I started it about a week ago. Good luck Razoo, I hope you get on well with it! X
Upper GI i = upper gastrointestinal tract: as I understand it, this part of your GI included your mouth, oesophagus/ gullet, stomach, and the stomach outlet at the duodenum (which I feeds off into your upper colon), basically.
My chronic upper GI conditions have been diagnosed & treated as: lichen planus + angina bullosa haemorrhagica (Ehlers Danlos paroxysmal haematomas) + sjogrens + pre-barretts oesophagitis with metaplasia of the gastric type but only normal GORD + gastritis
Mine took effect after 6 weeks on the dot - by magic my fatigue lifted and I felt human again. It kept on helping bug that first day of clear headedness was precious.
Hello Razoo,
I have been on it for 6mths and also felt i have improved. Still having flares with the rash but not as bad as before my whole body was red more red than skin color now its just in certain area's, it does take a few months to kick in and every one is different on seeing improvement.
Best wishes
I've been on Hydroxy for a couple of years now. I felt some improvement in the joint pain within about six weeks. Gradually I noticed the skin problems had improved as well. As Barnclown says the symptoms don't go away but they are reduced. I've developed loads more issues as time goes on such as sjogrens but I think that's the nature of autoimmune conditions - they don't go away but we can manage to live with them.
Give the meds time and try not to worry about 'what next'. If this disease has taught me anything it's to take one step at a time. Good luck 😀
Hi Razoo,
All I can say is that I was much better within 3 weeks. My consultant couldnt get over that I said I didnt have any side effects. He told me everyone does. I think I felt so bad that what ever I had I never realised.
Anyway, hope that you feel an improvement soon. I think that they say upto 6 months because sometimes people take longer than others, Hopefully you wont take much longer. Regards Diane
Hi,for me it took the 6 months to finally kick in.I had started out on 20 mgs of predisone, and was tapered off due to my bad back and worries the predisone will weaken my bones,and onto the Plaq.!
My achey joints,red inflamed and itchy hands are now better and more under control.
I kept thinking when will this Plaq. kick in? I do know one thing after reading,blogs,etc. the disease is dif in everyone,and so is the meds as far as reacting to our body.I've read in some it takes much less time,but the docs say 6 months because it may take this long like with myself!
Hang in there...it will kick in!
As far as what if it doesn't work...the next step,I don't know.I was diagnosed 1 year and 2 months ago..so I am a newbie .I have adjusted my diet,gluten free,milk etc.
At first testing my GP told me I have it.I then went to a Lupus specialist, few and far between here and was told no I don't have it.Went to a Rheumatologist and the blood he drew says I do.So it's been a crazy time.Let's hope you are one of the many the Plaq kicks in early for.Me,I am the unusual. so my MD told me and by reading other posts .Hang in there,and my best to you!
I tried Plaquenil for a few months and didn't feel a difference. So I've stopped taking it. I'm looking for a better alternative that will help me with my stiffness and pain. I'd like to try a biologic.
Hi adeangelo,
What dose of Plaquenil were you taking? It can take anywhere up to six months before you may notice the full benefit of this treatment. In most cases biologic treatments are only offered when other treatment options have been proven to be ineffective first. Have you discussed stopping your treatment and possible alternatives with your consultant?
I stopped taking Plaquenil because I was having strange symptoms of visual disturbance and was worried that Plaquenil was causing it. I have also moved to a different state and am starting over with a new rheumatologist- soonest available appointment is in November. I will tell them that I didn't really see any improvement with Plaquenil. You will probably say that I didn't give it enough time for it to work, but I was afraid that it was causing my vision problems. I'm hoping that a biologic would be safer for me to take and would work faster at providing relief
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