[Ali3]

Hi all,
Does anyone have pre flare warning signs that show up physically or do flares generally just start on any given day ?
Also how long do flares generally last ?
Ive been in flare mode for the last two weeks and was very poorly over the weekend...really scared me actually as i have never felt so rough with a flare before !
Today i feel much brighter although lacking any energy. I was able to do bits and bobs this morning but this afternoon very headachy and feel knackered !!
Ali xx

 

[Katharine]

Hello Ali

Sorry to hear you had such a rough weekend

I think that the answer to your question is quite different for each person. I suppose that I do have some very slight pre-flare symptoms in that I can feel that I need to go to bed even if that's not rational or I'll have a headache and that often happens when I know I've pushed it just a tiny bit too hard. Ignoring those signs inevitably worsens the flare to come for me. Maintaining the balance of what I can/can't do is sometimes quite tricky. Before a flare gets bad I will also get very "hot" on doing the slightest physical activity (even an easy walk with the dog tells me this) and also often get night sweats.

The length of flares too can vary. For some people they might last a few days, for others they can last weeks or even months. I think the trick is to "recognise" that you are flaring quickly and act quickly. For some that may simply mean immediate "rest mode" and taking things ever so easy, for others it may mean phoning your GP/rheumy and getting the right meds quickly (depending on the severity of the flares you usually have).

Some people may also have periods where they know that their disease is pretty active and they are indeed flaring but it is not "acute". I have had long periods of my disease being active/flaring and yet remaining relatively stable (if very unpleasant). Thankfully the "acute" passages are short even if more frightening and/or dangerous.

I hope that gives you some insight. I have to say that it really is very individual and different for everyone.

Katharine

 

[onetay]

Ali,
Sometimes I get a heads up that I am going to have a flare. Other times there is no warning at all. Flares can last a few hours or months sometimes. There is no quick answer for that question, and for that I am sorry. I hope you feel better soon.

 

[lazylegs]

Hi Ali,

In my case the fatigue level increases dramatically, my entire body becomes weak the rash becomes more prominent, and my skin is tender. Sometimes I can get things to calm down if I rest for 2 or 3 days, other times not.

Even when I am not flaring there are always symptoms, but they are tolerable. A flare to me is when everything spirals out of control and a few days rest makes very little difference. Like the others have said each flare varies in time.

Once you do begin to feel better I caution you not to do too much. If you do you will be right back where you started.

Take care,
Lazylegs

 

[Ali3]

Thankyou for all your advice....it's very useful to me right now as im trying to cope with this flare as best as i can !!
Any recommendations for a skin cream for my face...the rash is awful at the mo and im presently using a light moisturiser but thats it !
The state of my skin makes me feel very self conscious when out so im trying to cover up with make up but sometimes i think it makes me look even worse !!
Luckily my husband reassures me that he still loves me !!
Ali xx:blush:

 

[cmfinnis]

Hi Ali,

I am sorry to hear you're in a flare up at the moment.

I find my cardinal symptom of an impending flare is unbelievable fatigue. I suffer from the normal lupus fatigue most of the time, but just before a flare, I literally cannot get off the sofa, as i feel so faint. However, it's taken me a few years to get to 'know the signs' and even then they're not 100%. I thought I had it sussed, only to find myself, last August feeling relatively 'ok' and on holiday (first day there . .) only to go into a shop and come out with such severe stomach pain that I thought I had done something really really awful, my sight was dimming the pain was so awfu. Anyway, I somehow, got myself to tommies where I spent 2 weeks with a flare up. That was the quickest from normal to crisis for me - must have been about 5 seconds with no warning - scary! But usually I get a gradually increasing illness feeling and an inner sort of 'warning' . .. .

As for how long do they last - it can last any length. I have heard this phrase tho' when it comes to lupus flare - the history is the future, in other words the sorts of flare, and duration etc, tend to be the sorts of flares you have on going. This is generally the case for me, but obviously lupus being what it is, there is not fathomable pattern! I personally tho' have not had a flare last longer in the worse acute phrases for longer than about 3 weeks, and then about 6 weeks to 'recover'.

I hope you feel much better soon,

Cathy x

 

[Ali3]

Thankyou cathy for your reply to my queries.
Although i was abit concerned about the potential 6 week recovery rate !! On saying that i felt so dam awful at the weekend with the flare up, i could easily understand that statement.
Ali x
Hope you are as well as possible at this time too.

 

[Lily]

Hi Ali,

Sorry you are doing it tough right now :hug: This may have something to do with coming off Pred, your body might be taking a little while to adjust.

I usually have some tell tale signs of an impending flare, mouth ulcers, bone dragging fatigue, sometimes a more noticeable rash, and feeling more hot than usual or having night sweats. But sometimes I am caught unawares even after all these years! Flares last as long as they want to I've had them last for a day or two up to several months. It's so individual.

Are you still taking Plaquenil? That seemed to help my facial rash settle down a lot. Occassionally I have to use cortisone cream for a couple of days to calm it down though. A couple of days max though because it can cause your skin to thin so I am very sparing with it.

Hope you feel better soon.

love
Lily

 

[Ali3]

:hehe:Hi lily
Thankyou for your advice and info.
It helps so much to hear how we are all coping with our Lupiness !!
Feel brighter today, thankgoodness....
Yes...im still on Plaquenil but have been completely off Prednisolone for 18 days. Not sure if this flare was due to me stopping completely.
Im just hoping things will calm down and improve over the next few days !!
My stomach is still enflamed which i was told by the doctor last week due to steroid withdrawal. Any ideas on that one.....or just all part of the flare ?
This has definitely been the worse ive had yet....
But got to keep positive and try to keep smiling !!
Ali x

 

[Lily]

Hi Ali

No clues on the stomach issues being attibuted to going off Pred I'm afraid

Pred and I don't get along very well, I'm ok with localised injections and even with high pulse doses in a drip in hospital as long as it's only a couple of days. Other than that I get too many side effects...........diabetes onset, even with small doses orally and also the big one - psychosis Let's just say I try and avoid the stuff if at all possible :wink2:

I hope those tummy issues go away soon for you :hug:

love
Lily