Still experiencing a bad flare: Hey guys. On my... - LUPUS UK


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Still experiencing a bad flare


Hey guys. On my last post i had said i was having the worst flare up ever. My GP actually sent me to hospital where i was kept in on a drip and monitored after my heart was beating nearly twice as fast! Im finally getting steroids and couldnt believe the difference after taking them. Only thing is they wear off at night and i still cant get a good sleep as im in so much pain. Is anyone else taking steroids? Do you take all of them at once or should i split them up so i can get a good sleep too? I finally managed to shower and walk the dog today which felt amazing, but i am extremely depressed going to bed knowing i have endure a night of pain and wake up to do it all again. Im really finding it hard to cope. Its week 3, how long do flare ups usually last? :(

12 Replies

I’ve been in a flare since July and have been taking steroids before the flare started and during. Think it just depends on the person and the symptoms.

That is such a long time, you must be so fed up :( i hope you get better soon x

Hi jodziebear

So sorry to read your still suffering pain at night because of nasty flare. I take steroids and it's best to take them first thing in morning as less likely to affect your sleep then!. It's awful your still getting a lot of pain. What steroid dose are you on?. Do you take Amitriptyline?. This can help sleep, best taken at night and can help pain. Your GP can prescribe it. Hope your better soon. X

Jodziebear in reply to misty14

I take 30mg steroids, 150mg diclofenac, 400mg hydroxichloriquine, antibiotics for swollen glands and im taking paracetamol every few hours because its just not enough :( thanks I can ask the hospital about that as im seeing a specialist on the 18th. I really want to go back to work and be in a better place for Christmas x

misty14 in reply to Jodziebear

Hi jodziebear , that's a high dose of steroids your on . How long have you been taking them.? Usually a dose like that is for a short time and then you reduce gradually. You certainly need pain help as your also taking another anti inflammatory !. I'm glad you have an appt on the 18 th to see your Rheumy. Hope it goes well. They can also suggest better pain relief. Keep us posted. X

PMRpro in reply to Jodziebear

Mixing steroids, especially at a high dose, and NSAIDs (diclofenac) is not recommended as they can both irritate the lining of the stomach and taking them together increases the risk of bleeding. Are all those drugs prescribed by the same doctor? And have the swollen glands been shown to be due to a bacterial infection?

Jodziebear in reply to PMRpro

Im taking Omeprazole as well to help my stomach. All prescribed by the same doctor, and yes i think so, i think it was the viral infection that started this flare up altogether.

PMRpro in reply to Jodziebear

Antibiotics do nothing for viral infections - that is why I asked if a bacterial infection had been proven.

I'm really glad you are seeing your rheumy soon too.

Treetop33 in reply to Jodziebear

I got a flare from a viral infection too (and it turned bacterial!). Total pain.

You can get coated pred, which means you don't have to take omeprazole. Docs don't like to prescribe it because it costs pennies more (I know!), but PIPs came with so many side effects for me I have to have all medication coated.

I agree with Misty too. I was on 30mg but only for a week, and that was to hit it hard too. I then tapered down from 25mg. Not to second guess your doc, but it might be worth double checking why they have this strategy.

I've been on steroids since June. I take a daily oral dose of either 5mg or 7.5mg which seems to just about hold me (I started on 30mg daily). I don't want to take more than this because it causes rabid insomnia and jitteryness. They do make an immediate impact and it is a relief. Like others have said it's advisable to take them in the morning. So long as you are on the right dose once a day seems fine.

The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. If you are nearer the 12 hour end you won't have relief all day until the next dose. Many people on my home forum split their dose to achieve 24 hour freedom from pain - about 2/3 in the morning, the rest later usually although that too depends on the person. The second dose needs to be taken about an hour or so before you would expect the pain to resurface.

The main reason for being told to take pred in a single dose in the morning is to reduce the suppressive effect on the adrenal glands and is also felt to improve sleeping which obviously is immaterial if you are awake because of pain! That is also something that depends on the person - some people can take pred shortly before bedtime, sleep like a log and get up raring to go. Others can take it early morning asn STILL can't sleep. The adrenal suppression aspect depends on dose and how long you are likely to be taking it. If it is a highish dose (above 15mg) and longer than just a few weeks there will be adrenal suppression anyway.

It is worth asking your doctors if you can try it. It is the only way to find out what works best for you for symptom relief.

When I flare my steroids are wracked up to 20mg. Big dose but it's all about hitting the flare head on. In the past I have tried 15mg but it's now enough. Then is is a fast track back down again.

My Rheumatologist has said that I am highly sensitive to steroids as 48hrs later the pain and fatigue have gone.

I don't have problems sleeping. Perhaps it is just me or the dosage??

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