pruritus with flare ups?

[SarahLuna]

A quick question to see if anyone else has come across this?!

For the past 10 weeks I have been stuck in a cycle of flaring, it first starts with all over itching! This has never happened before and has come on totally out of the blue. At first I thought nothing of it, it is this strange all over prickling sensation that over a few days gets worse and worse until it is a maddening all over fire itch! All over my whole skin, but there is absolutely nothing to see at all!

After about 3 days it breaks into a low grade fever with flu feeling and extreme fatigue, night sweats, migraines which leaves me completely on the floor. It starts a prickly hot malar rash which comes and goes. The fever lasts for about a week then slowly settles down and then a few days later the itching starts again and it cycles around.... it’s been doing this since mid November

After about a month of this I started with really sharp stabbing chest pains and shortness of breath and a rapid heart rate. I went to the drs who sent me straight to hospital because my heart rate was so fast. The said probably pericarditis and put me on colchicine.

I started prednisolone 2 weeks ago but so far it hasn’t stopped it. I feel like the itching is something to do with an immune response and it is causing lupus flares, or is part of a new symptom?? I have no idea!!

Does anyone else experience this? It’s a total nightmare! I feel like if the itching would stop it would all settle itself back down again!! Is this a normal autoimmune thing?? This manic itching!?

[svfarmer]

Hi sorry to hear you haven’t been so well lately , I too get lots of itching I saw my consultant recently and he said it’s all part of having lupus - lucky us ☹️

I find the only thing that takes the itching away is Piriton tablets the ones you can take every 4 hours - the itching can drive you insane 🤪 hope things get better for you xx

[nanleighh]

I’m assuming they tested your liver enzymes and glucose levels in the hospital. There are liver issues that cause itching all over as well as undiagnosed diabetes. I hope you get to the bottom of it. That’s miserable. Have you tried Aveno bath?

[Aballard]

Hi - I wish I had some sound advice for you but all I can really say is that I share your pain. It's interesting because your particular progression - and the loop - sounds almost exactly like mine. I, too, have the pericarditis 'bonus' as part of my flare. It's miserable but I do find, after a few months of intensity, it will abate for many months again.

Sometimes, I find a topical spray will ease the worst of the itching (sufficiently to allow sleep...). I sure hope you find something that eases this distressing - and under-rated - symptom.

I empathize!!

[SarahLuna]

Thank you everyone for the replies. They did do bloods at the hospital and I saw a rhumotologist (can’t spell it?) in the cat clinic and I would have assumed they would have checked my liver and I do remember them saying kidneys were ok.

I have been popping antihistamines like sweets but I don’t know if they are making a lot of difference. It’s hard to tell because it goes away for a few days and then starts again.

I haven’t tried Aveno bath yet, I’ve been using aromatherapy but only the really gentle oils.

It’s good to know others have had similar experiences and that I’m not going crazy! I have this fear that because there isn’t an actual rash to see doctors will think I am imagining it!

It’s reassuring to see that it does settle down for others too.

[Paul_Howard Partner LUPUS UK]

Hi SarahLuna ,

We have an article on our website about coping with itching which includes quite a few tips you may find helpful. If you haven't seen it already it may be worth a read - lupusuk.org.uk/coping-with-...