First Flare: Am into the third week of a flare... - LUPUS UK

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First Flare

provence2022 profile image
6 Replies

Am into the third week of a flare…..nausea, no appetite lethargy +++ pain behind sternum ……have Raynauds….

Was diagnosed beg of April….on Mycolophenate 200 daily, Dioxychloroqune 50 mg daily

First flare have experienced and feel as I’ve been run over by a bus!

Have had to get a carer, temporarily …..any advice out there on how long this will last!

Thanks

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provence2022 profile image
provence2022
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6 Replies
GottaAsk profile image
GottaAsk

I lost 12 kilo this last flare it was horrible. Also all the other symptoms you listed alongside huge amounts of ulcers and rashes. I am impressed you’re already diagnosed and medicated when you’re having your first flare (unless I misunderstood the original post) which is better than what usually happens! I’m just on the final appointment here for treatment and have been flaring off and on for 6 years! I hope you get better soon and do you not think any medicine or treatment is working then by the sounds of it?

provence2022 profile image
provence2022 in reply to GottaAsk

Too early to say I think as drug regime changes after blood results….how long can I expect this flare to last as now into third week and no respite! Seein the Lupus nurse this week and hoping for some answers!!

PositiveT profile image
PositiveT in reply to provence2022

Hi. I am Sorry you are going through a bad flare. Have you contacted your rheumatologist to let them know how ill you are? They may wish to change your medication or give you something to help with the nausea?

Flares are very individual. Some last an intense short fee days, others longer. No one can really say. So very important to let your rheumatologist know.

Personally I have found forcing myself to move or go for a short walk really helps the flare. It might seem impossible but exercise really does help. My rheumatologist tells me to keep moving no matter what.

Not sure if this has helped or not. I do hope you feel better soon. Keep on going brave lady.

Djlr profile image
Djlr

If you haven’t called to see your Rheummatologist yet -

Get Appt

“If just a FLARE” a SHORT 30 day supply of Prednisone could get you through the FLARE.

I have to do occasionally-

It should Be a pack of steroids that start at either 30 mg or 20 mg and every three days you go down by 5 mg and at the end of 30 days you are at 0 mg.

This is the best way I have seen many rheumatologist treat flares that you just can’t get over and wait for by yourself.

But it may be that the doctor would would like to do a chest x-ray just to make sure there is nothing going on different that needs to Be looked into by a pulmonologist or a cardiologist because of the pain behind your sternum.

I do get pain behind the sternum, and a lot of times if I lay on my right side- some people say they’re left side - it makes the pain easier.

But if I lay down on my back it definitely hurts.

It may be that you need an anti-acid because with the Lupus flares we also get stomach upset. A lot of times they don’t do the gastric issues as a major lupus symptoms, but with many Lupus people I know, it is a place where the Lupus players will start and will continue throughout a flare. Also, I stay off of Lactose during flares- It seems to help, and I treat my stomach very gently with the foods that I eat.

Feeling like you’ve been “run over by a bus”, is the most “common way of expressing” a flare – other people might say it feels like I’ve got a horrible case of the flu, but not the chest congestion.

It may be that you’ve been under a lot of stress, it may be that you got too much sun just standing around talking to someone in a parking lot, it may be that you had a virus and it kicked on a flare, but there are several reasons for flare to be this bad in these three are some of the top reasons.

I hope you feel better, but do talk to your rheumatologist and make sure there’s nothing else going on and get a pack of prednisone to take for about 30 days and work your way down from 20 to 30 mg to 0 mg.

provence2022 profile image
provence2022

Many thanks to all that responded to my moaning,,,,,,some helpful tips, particularity upping the Steroids which I almost did…..seeing Cons this week so will clarify….don’t want a repeat of the past fortnight ……

MusicalFurbaby profile image
MusicalFurbaby

Hi Provence, sorry to hear how uncomfortable you have been! I would get that checked out, any pain related to the chest area is worth investigating.

The short answer to your question about length of flares is: how long is a piece of string? Flares are incredibly variable, lasting anywhere from hours to months or even years. I have just recovered from a 6-month flare (the worst I’ve ever had) and I’m still recovering from lingering symptoms. Hopefully yours will be a lot shorter! But this is why we recommend you see a doctor ASAP—if your symptoms don’t dissipate, they should further investigate and assist you. All the best 🌻

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