I lie here feeling really down and fed up. I wad diagnosed in july with Lupus after returning from holidays with a discoid rash... and after many blood tests etc was diagnosed with lupus. Ive had aches and pains in my feet and hands well more my fingers since August. They aren't inflamed but the pain is very real. Went to rheumatologist in Aug. Im on plaquenil since but the tiredness and pains havebt really let up. In fact today has been a really bad day pain wise and probably the worst since starting the meds. On random days I could wake with shoulder or back pain or upper leg pain. My questions are how long does it take for plaquenil to work in terms of pain reduction or does the plaquenil merely suppress the immune system? Is it possible that the muscle /joint pain is there indefinetly? I have given up work indefinetly and up to today have remained positive but thats wearing thin and trying to remain positive is very draining. Thanks in advance for rant ...any info or advice wouldbe greatly appreciated... im back to doc next week to have all bloods done again before next visit in Nov to rheumatologist...
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Hi. Sorry to hear you're in so much pain. I can't advise on the Plaquenil mechanisms, because I wasn't on it long enough to find out. I thought steriods suppressed the immune system, but I'm no expert, but like you, I started off with discoid after numerous tests and was put on Plaquenil, which I couldn't tolerate. If you feel the meds is making you feel worse, maybe it's worth speaking to your consultant (bypass your GP, they won't be very helpful) If you can. Maybe Plaquenil isn't for you too. I think that's the primary drug most people are put on, but can't sustain it.
Thanks for reply. Yes perhaps Plaquenil not for me . I will definetly discuss at next meeting with rheumatologist. Ive no real side effects from it.... so he may decide to persevere with it
You can still access all of our information. The best place to start is probably the publications page on our website where you can read/download all of our leaflets and booklets - lupusuk.org.uk/publications/
Hi so sorry to hear about your pain. I used to have the most awful joint pains all over but I don't now. Hopefully with the right treatment you won't either. Plaquenil is a drug that suppresses rheumatic disease and takes about 1 - 3 months to begin to work which is why by you next see your Dr in November you will have a good idea if it is helping or not. But usually you would take some painkillers also. Have you tried Paracetamol? Try that first and well done for trying to remain positive despite everything.
Its lovely to see that the pains do pass and this keeps me positive kmowing there is light at the end of the tunnel . Yes I was prescribed a pain killer called Vimovo. Dont like to take to too often.!
Vimovo is a NSAID (also known as Naproxin) and good for pain and inflammation. Why don't you like to take it too often? Does it bother your stomach? I am not able to take NSAID orally because of the risk to my kidneys but you can get them in suppository form and taken rectally where they work just as well but protect your stomach/kidneys because it is not going through that system. You can also try Paracetamol with Vimovo.
It's not a rant, never feel like that on this site. We ALL have and are going through what you are newly experiencing...its OK. You being a new LUPUS WARRIOR...the medications take time and it might take a few months. Sometimes it takes additional meds and a combination to get through. The biggest advice I can give you is learn to live who you are now, and take your joy in small doses. Dont hesitate to inform your doctor...let the office know of the pain and even any new pain...be your own advocate. Remember some days are better than others...each case is different for each person...rest..meditate..and pray..
Thanks so much for words of advice. Yes I agree. Ive altered my life to live who I am now. Its the only way forward for now! I do try to rest as much but sometimes it doesnt seem to matter how much I rest im constantly exhausted😁
It's said to take 12 weeks or more before plaquenil works (it's generically known as hydroxychloroquine or HCQ for short). No-one is entirely sure how it works, but it does seem to alter the process that causes people with auto-immune diseases like lupus (and rheumatoid arthritis) to manufacture antibodies against their own tissues. It is this auto-immune response that causes inflammation and, usually ,aches and pains in our joints, muscles and elsewhere. So most people find that after about 12 weeks on HCQ, the pain starts to ease. But for a lot of us, it never quite goes away. In my own case, when diagnosed, I had shooting pains in both hands and generalised soreness that made me constantly rub and stroke my hands together for ease (imagine Fagin in Oliver Twist - like that). After about 3 months, the shooting pains went away and have not returned, but I still have slight soreness and stiffness in my hands.
It might be that you will find HCQ alone enough to get on top of the problem, or it might be that you need additional meds (many/most people seem to be started on prednisolone on first diagnosis, which helps suppress the inflammation very quickly, but no-one really wants to be on that for a long time, whereas HCQ seems to have fewer potential problems in the long term).
Perhaps it would help to read over the LupusUK leaflets before you see your GP? That might help you think about what you most need to clarify in the appointment? Here's the one on diagnosis and treatment - the rest are on the 'home' tab.
Thank you so much for your lengthy informative reply.
Yes I had read that it takes anything from 12 weeks to work,however just felt demoralised this weekend due to pains had gotten worse since I started the meds so decided to join this forum to try and remain as positive as possible. Yes I started on a weeks supply of predisnolone.
Your symptoms re pain in hands in previous mail describe my exact pains. Im constantly having someone massage my wrists and fingers.
Yes ilI plan on getting my value for money at next rheum app and will gave a list of questions for him. Thanks again for taking the time to reply to my message
I took the Plaquenil for Sjogrens and APS for six weeks, the most awful drug it made me so hyper at the end I had to stop as it did not help, I stopped eating or sleeping lost six KG
I lost 12lbs prior to starting meds and prior to being diagnosed. Loss of appetite definetly a side effect of the Plaquenil.. ive maintained same weight since starting meds but thankfully no other side effects... as i say to other half. I feel like I'm just popping sweets as having no impact negative or positive! Have same pains and unlike you im still fatigued and have zilch energy!
The new school of thought it to leave people on plaquenil even of its not doing much and add medications. The reason is that plaquenil modifies the way your immune system works slowly and can add up to long term success in conjunction with other meds. Please dont give up hope. There will be good days again. Advocate for yourself and don't hesitate to reach out to your doctor if you are flaring or feeling bad. If they are worth anything they will jump at the chance to help you through it, be it a dexamethasone shot, a short course of steroids, anything. It's important to remember that there are options and that while some days will be bad, some will be good and can be great if we find the care and support we need. Keep your head up and I hope you feel better soon.
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