What should DR'S do with a Lupus flare-up?

[cocororo]

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

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.

[Nanuuk]

It takes upto 12 weeks to see the benefit of hydroxychloroquin unfortunately.

[Hidden]

Talk to your doctor about the pros and cons of a course of steroids. The rheumatologist suggested this when I was first diagnosed but I declined. In hindsight it might have been better to get me through the period of time whilst waiting for the hydroxychloroquine to start to work.

[Barnclown in reply to Hidden]

I agree with nanuuk & madlottie!

and i'll add that my flares continued even after over a year on plaquenil (although daily 400mg plaquenil had taken the edge off some of my symptoms within 3 months)

eventually, like 2 years later, my rheumatologist & gp got me to try a 4 week low dose steroid taper:

10mg oral prednisolone taper (every week I went down 2.5 mg per day, until all my tabs were finished.)

This was vvv effective in damping down both my flares & all the remaining symptoms that plaquenil couldn't help much.....and convinced my rheumy & gp to try me on adding daily mycophenolate cellcept to my daily plaquenil. As a result of settling onto a therapeutic dose of 1000mg daily myco, I've had THE BEST 6 months since I was in my 30s.

as flares can continue to happen anytime with lupus, rheumatology still allows me 3 x 4 week 10mg pred tapers per year, even while i'm taking daily plaquenil & myco.

Take care & good luck

[kimc]

Hi Coco! You're bringing me back to when I diagnosed lupus a year ago. I was panicked, worrying and sure, felt very hard to cope. After I requested for a blood and skin test, dermatologist referred to allergy & rheumatologist and otold me he doesn't want me to freaking out, so he won't tell me about a thing about lupus. I went home search on Internet every day, the more I know the worrier I get. Later I'm thinking, it was there, I just didn't know it until now, it likes a child requires your extensions. So, I have to deal with it which, a few changes to make symptoms not getting worse and control it. Great! Can't get rid of it...yes, because the cells inside body aren't function right and sign affects of medications aren't good either

I came up with the idea, accept it likes a child we love to pay extension to and believed that I can change couple things to cope and help to make it easier. Rest more, deep breathing, diet, drinking water are your end, other end will work closely to doctors and time would help you to cope with it.

Main things, you're not alone I found this support website is very helpful. Hope this would help you a little.

[Whathappned]

Hi

As mentioned above it takes a few months for the hydroxy to kick in but they often give steroids to cover this period. I had them I.M. I am have mild symptoms that are gradually worsening and the steroids kick in quickly whilst you wait for the meds to work.

They do improve how you feel, I noticed a difference in my stamina and a lack of aches and pains. Even the achne form rash over my face went but it takes time.

You need to keep the docs informed about how you feel though if your getting low. you are probably aware that Lupus can start you off with depression, either as a symptom or as a reaction to the thing. So let the docs know how you feel. X

I found hydroxy wonderful once it worked and managed to increase my hours at work. Unfortunately with Christmas, flu season and work targets to hit, it was our busiest time and I found over Christmas that I was struggling again. I didn't get chance to pace myself and ended up in bed after work each night.

Initially you need to rest, learn to pace what you do. I'm afraid I have had to stop certain things, such as, I've reduced a day at work so I can have a life again, although I didn't go to the beer festival with the gang last night because my ankles and legs wouldn't take the standing and I'd be too tired today( and I couldn't be bothered with trying to explain to them all that its possibly Lupus and myositis and all the looks, because I look well).

Don't lose heart but let them know how your feeling we re all different and they will try to help if they can. Start as said with looking in to the steroid, maybe you need a course to tide you over until the hydroxy works xxx

[kittykat68]

hi i was alot like you i was diagnoised feb 2010 it does feel like no one cares... this website is a god send but you do have to remember ur not alone, sadly the fatigue is what is it , its took me 4 years to realise that i have to pace myself (spoon theroy ull find it on you tube) annnnd i still struggle , i too suffer with chest pains and feels like palpatations so mine was investigated ie xrays/scans and a year after being diagnoised with lupus was then diagnoised with emphazema and copd at the time i was 42 i was like omg so please get chest xrays im not saying its the same as some of my online lupy sistas get chest pains and have no lung involvment , every lupy is different,also quinoric is a cheaper version of plaquinel and i personally find there are too many side effects if your gp put on your perscription plaquinel then the chemist has to supply that but you will need to ask them , also dont forget lupus is a copy cat disease so you may also suffer from symptons but you havent got the illness (does that make sense ) for example i suffer with MS symptons but i dont have MS hope ive helped and not confused or frightened you as i found its all a lot to take in ... life changing i fact .. best wishes karen