Frequency of flare ups

[Samx]

Hi,

I was just wondering how often other people get flare ups? Not particularly severe ones involving internal organs (which i have had a few of!) but flares causing bad swelling and pain, joints looking deformed, fatigue etc. I just read somewhere that the average lupus patient gets 3-6 flares a year. I'd be really interested to hear how often other people get these types of flare ups as i probably get that many a month! (i obviously know everbody's different!)

Thanks,

Sam

[Hidden]

hi sam,

i probably have a flare every 7 weeks or so if your having that many a month then you should probably have you medication reviewed as it sounds like its not managed well. speak to you specialist nurse or consultants sec to get yourself an appointment for a review

[loopy-lou]

Hi Sam

What you have said is interesting as I too get why I describe as mini flares all the time...fatigue...aching heavy joints that feel like lead (particularly when I am tired)...red hot cheeks. Suggest you see consultant again...I am going to see a new consultant soon. Good Luck!

[Jude65]

Hi Sam, I echo what tatty has said. The only thing that I would add to that is that in my case I get flare-ups when I have a combination of not being able to sleep properly and when I'm stressed or not pacing my activities. I feel my joints starting to burn and muscles becoming stiff and painful so have to have some quiet restful days.

[EOLHPC]

my version of these sort of flare ups seems to be like jude's, tatty's (a flare of some sort every 7 weeks or so) & loopy-lou's. and if i get one of my typical recurring infections (say a UTI, or a bad bug bite, sinusitis, tracheitis, or whatever) i also get a flare up usually with flu-like symptoms, which calms down once i'm on antibiotics. but seems, so far, that like you my internal organs are relatively unaffected (my lungs seem to be most vulnerable).

and maybe it;s worth adding that that, although i'm told i've had sle all my life, i was only diagnosed a year ago, but even so all these years lifestyle management has seemed to kinda help me cope with flares (generally going slow with plenty of rest/sleep/meditation, antiinflammation diet & supplements, core stability exercises like alexander technique & pilates etc). but since june being on plaqeunil 400mg daily has really really helped take the edge of most flares when they happen

maybe the healthuk community blog could be on this topic one month?

interesting question, thanks

[Samx]

Hi guys, thanks for your comments, it had never occurred to me before how often other people get flare ups, until i read about it yesterday. I know my lupus is very active, it has been for about a year and a half but i just presumed other people with lupus like mine had flare ups just as often, i don't know anyone else with lupus to ask so just thought it was normal.(if you can call it that!) I get horrible swollen joints and fatigue and the longest i've gone without a flare up is about 3 weeks in january after i received 3 days of pulse steroids in hospital for a pericardial effusion caused by lupus, its back to every couple of days now. My joints get that swollen they look terribly deformed!

I have recently moved rheumatologists to the manchester royal infirmary where they are brilliant but haven't really told them about the frequency of my flares as my old rheumatologist didn't seem that interested! Again i just thought they were normal and i hate to moan as i know other people have it a lot worse. I had a kidney biopsy 2 weeks ago because its started affecting my kidneys now, my specialsts are just waiting for the results to decide what action to take in terms of more treatment. I currently take 150mg of azathioprine, chloroquine and had a steroid injection 3 weeks ago.

I'm in my final year doing a biomedical science degree so have my big exams next month, would be lovely if lupus would dissappear for a while!!

Anyway thanks for your comments and would still be really interested to hear anyone elses comments.

Take care,

Sam

[Jaxqueline]

Hi I am fortunate that my organs have not been affected but my flares are hormone led (I've kept a diary as has my partner!). I seem to shut down before a period and have a flare but then I am hyper. Consultants answer was to put me on the pill constantly to stop my menstrual cycle. did it work? Noooo, opposite. I had at least two periods a month ergo two flare ups which means the knock on effect is that I am dreading going in to work tomorrow as I think I will be in trouble. I am already on a formal warning..... I hate the fact that four professionals have suggested that I stop work. Have they not seen the kids and the supermarket bills?

Sorry for the rant, it is a sunny Monday, things WILL be good this week.

xx

[Corrosion]

Hi Samx,

I was diagnosed with lupus last year November after having lupus symptoms from August of the same year. Ever since then I have got better but have been suffering flares ever since. I say it is simmering in the background as I have only started treatment of hydroxychloroquine yesterday. I have glaucoma and they were worried that the medication will have an effect on my sight.

I am too at the MRI and they have been great. My rheumatologist recommended taking Omega 3 fish oils (1000mg) 3 times a day and when he first said it I looked at him as if he were mad but I did start because I was quite low from being in pain and feeling tired all the time and I just needed something to help me along.

Anyway, I am surprised to say they have really helped. My right wrist was a big problem spot along with my back. The pain in my wrist has virtually gone away and my back is better too although I still have some pain there. The tiredness is not so extreme now and I have been staying up later and the weekend just passed I got up early and went to the gym without thinking. I have not been in the gym since my big flare up last summer.

I hope the hydroxychloriquine will help wipe out the flares and so that I can get back to my normal self but I just thought i'd recommend the fish oils because they have helped me no end and I wish someone had told me about them earlier. Hope this helps.

xx

[Corrosion in reply to Corrosion]

Hi Jaxqueline,

My flare was triggered by a combination of stress, sunlight and starting the pill. I was taking Marvelon which should not be taken by people with lupus so even when I was flaring I was making it worse by taking this pill. When I had my appointment with my rheumatologist he took me off Marvelon straight away which helped. As I am a very heavy bleeder, I still needed something so instead of going on the coil (Mirena), my Doc recommended Cerazetta which has been fine. It's ok for people with lupus to take because it is a progesterone only pill.

I hope this helps and please rant away.

xx

[Maya23]

Hi

I also flare quite regularly, although I haven't had organ involvement, it effects my joints, muscles and nerves. I've noticed that my 3 triggers are; if I catch the sun by accident; hormones (the week before my period and first 3 days of period); and stress. Sometime I seem to be coming out of one flare only to be dipping straight into another one. I'm nearly due my next appointment with my rheumatologist so I wonder if he might day I need to take more drugs. It sounds to me like you might need to review your meds too. I'm sorry to hear that it makes your joints look deformed, that must be hard to live with. I hope you find something that works for you as it sounds like the disease is very active. Take care.