Joints very bad this past two weeks

[bestbuddy]

Hi all. I happened to go out in the sun two weeks ago for 10 mins without SPF and my arms were uncovered and my neck. That night I came out in a prominent sun sensitive red rash on my chest which has only just subsided. Then my joints stiffened up and so began gnawing pain (migrating up and down my leg) and stiffness in my left knee, hip, toes and both wrists - absolutely excruciating!

I doubled up on the plaquenil as suggested my the rheumatologist for 7 days but I still needed paracetamol and ibuprofen. I have hardly had any sleep and felt totally debilitated - I couldn't make a fist / grip / wring anything out and found it hard to get in and out of the shower etc.

Is this what is known as a flare? I am new to all this and how it behaves- I have had joint pain since childhood but it is now far worse than ever and I am becoming more aware of how the sun can bring on an attack. Thankfully I am on the tail end of it and have managed to get out with family and friends for my birthday lunch today. What else should I be doing? I am only diagnosed with UCTD - does it behave like this?

BB

[MargaretGail]

When this happens to me I always expect the effects to last 7 - 10 days and I always need steroids to clear it up. I don't consider it a flare as I know the cause, cure and duration. How long have you been taking the Plaquenil? it took 10 months before I saw any sun related benefit.

[misty14]

Hi Bestbuddy

Sorry to read of your sun exposure giving you horrible joint pain!. It is like a flare if you suddenly get a re-occurrence of symptoms that were previously controlled!. Don't also say you've only got UCTD, I have too and it's been written on here that we can have a series of different symptoms from different auto- immune illnesses making it harder to deal with.! You might find steroids are better for your symptoms , they work quicker. Hope you feel better soon and keep out of the sun!X

[bestbuddy in reply to misty14]

Hi...I have been on plaquenil for23 months and I am still getting used to how this condition morphs and presents itself in many guises. My rheumatologist is slow to respond. As I have said on here before, I think he us waiting until I have a definitive diagnosis before I am offered the next level of treatment. Meanwhile I struggle on with my joints and my thyroid and coeliac conditions too.

[misty14 in reply to bestbuddy]

Hi Bestbuddy

It sounds like you have a Rheumy like mine who would be more confident treating it if the blood tests revealed more!. It makes it very tough! In the past I've had Consultants treating me with immuno- suppressives without problems, it's down to their individual personalities!. Sorry you've also got caeliac and thyroid problems, you 've got enough with UCTD!. Hope your joints improve now it's gone cooler?. Take Care X

[grannyjogger]

Hi, I also have suffered with skin flares, usually my face (cheeks, nose and chin). These flares usually last for about a week and they clear up without any additional meds. They have been a lot less frequent since I started taking Plaquenil 2 years ago.

My rheumy can be a bit dismissive because she "can't see any rash" and she felt my condition was "more likely to be rheumatoid arthritis" although my original rheumy diagnosed undifferentiated autoimmune disease and this is what is on my hospital notes. She focuses on the joint pain and conveniently ignores the poor lung function, rashes, chronic fatigue, brain fog and recurring bouts of uveitis (developing cataracts now because of the long term use of steroid eye drops!!) etc etc etc.

Last time I had a skin flare was months ago and I took pics on my phone and showed them to my rheumy. I got a referral to a dermatologist who wants to do a skin punch biopsy because apparently that will give a much clearer picture of what is going on. Before the appointment I had to stop my meds for a couple of weeks, stop using sun protection and 'introduce my face to the sun for a few days'I was dreading it......I ended up with a vague red patch on each cheek. The dermatologist felt is wasn't worth carrying out the procedure as I would be left with a scar and they probably wouldn't get the quality of sample they needed.

So, no clearer after years of symptoms but I don't feel bad about that any more. I have reached a stage of acceptance. I've got this disease/condition/set of symptoms that are unpredictable, ever changing and the more I read on this site the more I think we're all in the same boat.

Hang on in there bestbuddy and I hope you keep on finding ways to manage your particular symptoms.

[sheenas121]

H