How to deal with flare up?: Since last thursday my... - LUPUS UK


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How to deal with flare up?

seanto profile image

Since last thursday my immune system has been attacking my muslces which claused a lot of pain. I started on codeine(30mg) and paracetamol(500mg) which my body treated like candy so by the sunday had to ask for stronger stuff. Got given tramadol (50mg) which started well but by third does it made throw up at awkward moment out of the blue. By this point it stoped treating the pain. My body since then has clung onto the side effects leaving me nausea. Today i havent been able to eat properly as some foods make it worse. Then today my period also decided to come and my immune system is know making the pain there twice as bad as what i normally get. 111 advised i see a doctor who told me until i see a doctor in bath next month they can only offer me pain meds. This is because im yet to have an official dignoes but have sugested lupus. I can understand why they cant help but since coming home i have gotten worse. I know have a butterfly rash/ swollen feeling in face and a tempture of 36.8(under toung), i normaly read low.

I have no idea what to do and wasn't offered much by a gp. So i was wondering how do you peeps deal with a flare up? Any hints or tips that might help me? Thanks in advance for any responses.also sorry for any spelling mistakes.

16 Replies

The first thing to do is to get an appt with doctor. You need to find out what you are dealing with. In the meantime, rest, sleep and take pain meds when you need to.

As you are undiagnosed still the GP could take a full blood count and add inflammatory markers. This would help them to know if you have some sort of infection which your body is fighting and whether you have inflammation. They should also check your immunology panel at the same time. This will help the rheumatologist in Bath with diagnosis. Otherwise they will have to test for all this in a month and you will have to wait even longer to get your diagnosis while they wait for the results.

So I would go and see your GP and tell them you would like this done please and why. The more the GP can get tested now the more it will help you and the team at Bath. Take print outs of these blood test results along with you. Also ask the GP to check that nothing acute is going and ask them to check your thyroid panel, B12, Feritin and Folate for good measure if you can. Try to be firm! X

Ps and take photos of your butterfly rash and other visible oddities such as swollen joints and rashes in case it's all gone in a month.

seanto profile image
seanto in reply to

thanks for replying. The reason im going to bath is for a second oppion. I have enough symptoms to meet a diagnoses but my local hospital refused to treat me because in the three blood test they did nothing showed up. also I already have low thyroid, vit d and on and off iron. i then cant have a b12 deficiency as my blood cells are smaller paler than normal. Though i will re ring the gp to let them know whats going on.

in reply to seanto

Okay thanks for explaining. Have they tried you on steroids yet? Sometimes this can demonstrate whether or not you problem is inflammatory or not.

seanto profile image
seanto in reply to

My local only offered me ndas which put me in hospital as consultant told me it was fine for long term use. I had to draw the line and ask to see a specialist when consultant said going back on ndsa was all they where going to do to help me. Gp yesterday said it was pain meds or nothing. Currently waiting for a different gp to ring me back.

seanto profile image
seanto in reply to seanto

Spoke to gp and back to square one. He belives its unlikely that i dont have lupus as its not in my blood. Asked if i could try stariods and he said no due to blood test results. However has given something for the stomach pain. Also said i was due for a blood test soon but didnt say to book one. However i Will ring up for one.

You will probably need steroids to bring down the underlying inflammation. Pain killers are OK, but won't solve just mask the problem.

I have emergency steroids to use in major flare. 20mg prednisolone for 3 days, 15 mg for 3 days....etc reducing 5 mg each day until down to zero. This long tail is important to prevent a re-flare on stopping treatment. You will also need something like omeprezole yo help settle tummy. If tummy is very upset, might be an idea to take omeprezole first and leave it about 1 hr before taking steroids.

See a Dr, either at surgery, walk-in centre or urgent care centre, what ever is in your area. Point out that you are in a great deal of pain, and that nothing done has made any difference.

I am also waiting a final diagnosis, but this shouldn't be a barrier to receiving appropriate symptomatic medical care.

Sarah x

seanto profile image
seanto in reply to sarahsch

Thanks for the reply. Just spoken to a gp who wont do much and belives its unlikely for me to have lupus even with all my current symptoms. I asked him to exspline why i had a butterfly rash and he said that could be a number of things. Also asked why pain killers aren't working but didn't get an answer. I suggested steroids to him but he said no as my problems aren't in my blood. Offered me something for the pain in my stomach and then said he couldn't do anything till im seen by bath.

So sorry to hear about your experience at the moment. Can I just ask do you find that your periods have become worse since your symptoms of your auto immune condition? Xxx

seanto profile image
seanto in reply to KELC

its hard to say since my periods have always been irregular and I started mine later than most as I was 16 when I got my first. Plus the symptoms i get because of my period have changed over time. This time as im flaring my period has been a lot worse but i feel it was completely coincidental that they happened to go hand in hand.

KELC profile image
KELC in reply to seanto

Same here late starter and irregular then become more regular in my late twentys early thirtys. Since my illness my monthlys have becone horrific. Hope things inprove for you honey xxx

Patricia2015 profile image
Patricia2015 in reply to KELC

Same here. After a year of great suffering I finally got to a good gyno (second one I consulted) who diagnosed me with large fibroids and adenomyosis. My uterus was swollen twice it size. I was prescribed a new medicin Esmya and my periods are normal since then. I don't have to cry from the terrible pains in my uterus and surrounding organs for days in bed when I just wanted to turn to another side and no painkiller helped. Finally when I got this diagnosis I was prescribed morphine and that helped to take away 80% of the pain. Of course by then I was bedridden every month for a week and bleeding for a year (every day).

I am 41 btw, got my first period very early, I was just 11.

I had to take three Esmya courses for my fibroids and adenomyosis.

Good luck with your menses and please remember the maximum normal pain should be alleviated by aleve feminax. If it is worse visit a gyno.

I've noticed no one here has talked about constipation. Do you know constipation is one of the worst things you can let happen to yourself with autoimmune disorders? Keep your bowels moving as much as possible by eating fresh fruit. It's okay occasionally to use a laxative, but my MD said sparingly.

miccika1 profile image
miccika1 in reply to MsGelfling1

I take miralax daily and works ok

lufibabe profile image
lufibabe in reply to MsGelfling1

Last month I had a really bad attack of constipation..4-5 the extent I was feeling sick..then had to take laxatives which helped but now my whole digestive system is messed up..with severe reflux etc..tomorrow I am going for endoscopy..scared like anything :(

Ask for at least ANA test while waiting if that's s up and inflammation markers such as crp are high any doctor could prescribe a round of steroids like Prednisone. This will get you out of flare but they need some test to confirm inflammation.

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