Not sure what should be happening :(

Hello, I received my diagnosis of lupus about a month and a half ago and I was told they found it as I was having a flare-up. I've been started on quinoric but I still have a lot of symptoms which are not controlled and getting worse.

These include:

Chest pains and difficulty breathing

Joint pains

Swelling and water retension (about 7lbs worth)

Problems with bladder

Fatigue

Dizziness when i stand up

Stomach cramps

What should they be doing? They just keep prescribing painkillers and that's it. It really isn't helping and I'm starting to feel like I can't cope :-(

Any help would be so appreciated.

7 Replies

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  • Hi you shpuld be on hydroxycholorquin short name plaquinil. Qunico is the cheaper make and has a lot more side effect ,you dr has to erite hydrox on ur perscruction hope ive helped give plaquinel about 8 weeks and ull feel the benefit I did and ive bren on it 4 years now and only take 200 a day hope this hrlpedx

  • Hi cocororo

    Sorry to read the problems your having. You could see if you could go to your Consultant earlier either via your GP or a n appointment cancellation as he needs to know your health is worse. Good luck. X

  • Sometimes, hydrocychloriquine doesnt do the job if you think of lupus like going up the ladder, they start you on the first rung of the ladder of medication....i am affraid to say its a long slow climb.....1) planqinell as kitty said quinoric is a cheap brand and doesnt really agree with alot of people i had my rheumy tell my pharmacy direct i am intollerant to quinoric and needed planquinel.

    2) you will have your bloods done before you start, once on the meds, they will review u see if its makes a diff really can take up to 6 months....if its not working to what it shouls be then step 3). They move you up the drug table, i went onto steriods at this point.....and moving up to amran. As my condition is internal organ inflamation with daily flares of serositis..so step four for me is sent blood for tox screen againt imuran, if i can tolorate it i will be going onto this.....in all as your app will be 3/4months apart and lupus drugs are normally slow realease ( apart from steriods)...you just have to wait and see and its hard....good luck hope this has helped when you first diagnosed its like walking through a mine field with a blind fold on. You never know if your body just has enough...top tip try and learn about your condition that is tailored to you lupus is diff with everyone its lije our own finger prints...you will need to learn to safe guard yourself when visiting other medical proffesionals, who do t have a clue.. Sending a lupie sunny smile x

    Welcome to the world living with lupus, sometimes just being able to name ypur condition is such a relief x

  • Hello. Sorry to hear you are suffering. You have had some good replies, so I'll keep it brief. I was diagnosed in November 2013. I am on hydroxychloroquine 200mg twice a day. I have subacute cutaneous lupus and had virtually every symptom by then, but I have no internal organ involvement so am very lucky. I had depression, headaches, skin problems galore including malar rash, chest pains, extreme fatigue nausea, dizziness, etc etc. I was told the meds would take between 3-6 months to get into my system. I am on my 7th month of meds now and I can see a vast improvement. I am not 100% but I have read on here of people taking 12 months to get a level on the meds. Don't give up - stay strong. Best wishes, Wendy.

  • Hello cocororo

    Feeling as if I can really feel for you. I'm 3 years into my treatment for systemic lupus...started on quinoric & vvvv quickly made every effort to switched to plaquenil.....successfully.

    I think you've got some great replies...willowwag's words are especially full of truly sound advice! She is describing pretty much the route i've been on since my diagnosis. I wish I'd had willowwag's sort of explaination of this route to me at the outset, cause I might have felt less anxious along the way...especially less scared to go through the trial & error of adding more types of prescriptions meds to my treatment plan & my daily intake. But, with the help of my rheumatology clinic, my gp and good friends made on the forum & at my local lupus uk support group, I have survived ok & am now feeling better than I have in years && years...actually, in decades! Yes, I still have to conscientiously comply with daily treatment regimes overseen by a series of clinics (eyes, dermatology, gyn etc) but it's all helping me have a better life than I can ever remember having (am 60 this year).

    So, take heart: as your drs follow your response to treatments, they will be able to refine your treatment plan, making it increasingly effective....and in time it's entirely likely you will feel significant relief from many of your symptoms. I like to focus on this diagnosis & treatment process as a collaboration: I do my bit (keep logs of my symptoms & their response to meds + lifestyle management, + take photos of visual symptoms to show at clinics) and my drs at my various clinics do their bit (kinda like medical detectives, they gradually figure your version of lupus out & how best to deal with it)

    Wishing you all the best of good luck and peace as you get into this journey

    XO

  • Hi

    Plaquenil not Quinoric. Quinoric made me so ill, after taking Plaquenil for years I was given Quinoric because it was cheaper. Most of your symptoms are like the ones I had on Quinoric.

    I was also given a steroid injection when I was diagnosed to stop me flaring while the Plaquenil started to work ( it can take 3 months) I hope this helps. Good luck, your GP might suggest steroids if you are not making progress..

  • I'm starting to think I've been on every medication they've made over the last 25 years for my RA and Lupus and now the Rheumy has added fibro to my list of ailments :( But, believe it or not, the Enbrel injections I am on for the RA seems to be working for both the Lupus and RA :) I'm down to 10 mg Prednisone daily as my maintenance dosage along with pain meds as needed. The only other medication that ever really helped was the Imuran. This is the lowest dosage of Prednisone I've been on in many years :)

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