I am having a flare up of hypersensitivity vasculitis at present, following a reduction in hydroxychloriquine sulphate (I also have SLE, Sjogren's, coeliac and migraine). I've increased my dosage back up and the rheumatologists have said it may take up to 6 weeks to take effect, and until then I need to sit tight. If it doesn't clear after that then I'm back on Prednisilone.
They're checking my bloods to ensure I'm not also having a lupus flare.
What I find odd is that when my skin is flaring like this, I get really quite large lumps on my scalp and around my hairline. They are painful, sometimes mildly itchy. They're perhaps the size of grapes, and I can have maybe a dozen or so at a time, worse at night. Does anyone else experience this, and do you have any tips for reducing the discomfort? Putting my head on my pillow, brushing my hair etc isn't pleasant!
I'd really love to hear everyone else's experience and coping mechanisms.
Other symptoms in addition to the typical skin rash I get are;
Fatigue
Painful swollen areas, especially in my hands and fingers and feet
Pain in areas where I've used my muscles or a bruising feeling
Dizzy spells
Double vision (intermittent, bilateral vertical - this may be lupus - GP considering a neurology referral)
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Lupylass
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I have MPA and can report experiencing painful scalp lumps when my disease is not sufficiently controlled. Especially if I am under stress. Only once did they grow to the size you describe, though, and they are usually not grape like but flatter, like a domed 2p piece. I was able to put my head on the pillow as they were always on the top of the head, not around the hairline. That sounds very difficult to cope with.
I don't have any coping strategies to offer, sorry. I just found they improved as my treatment therapy started to work and I rarely get them now. I hope you soon feel better.
We seem to get a lot of the same problems and I know we have exchanged messages before. I have had these lumps before mainly behind one ear and when I had them the whole of the side of my face down my jaw line looked swollen as if I had been punched in the face and felt the same too, They have always gone of their own accord but have been quite painful, and I have just taken pain relief to help. At the same time I have had them in the past I have also had mouth ulcers.
I am having a bad phase at the moment too and am too having dizzy spells and blurred vision, I was sent to an eye specialist who told me my bad vision was caused by a cateract which was a result of taking steroids but it is always worse when I am feeling bad. I find if I am anywhere where there is artificial lighting, especially in shops I feel so dizzy I feel like I could fall over and my vision is awful, I find the same on overcast but bright days. I was told by an optician that that was a sjogrens symptom. I have seen a neurologist who has found inflammation in my CNS, apparently this isn't uncommon in lupus/sjogrens, but isn't too serious and is caused by the immunoglobins (not sure of that spelling) from the blood getting into the spinal fluid. I am seeing my neurologist again next month and will ask if this is causing my dizziness as I feel I have so many questions I would like an answer to.
I take hydroxichloroquine too and stopped for a while last year (due to my blurred vision until it was investigated as a precaution as the drug can cause retina damage) and really went downhill, I felt so much better once I had been back on it for a while. I hope it starts to take effect for you again soon.
My scalp lumps aren't like swollen glands as they are all over my head - I suspect they must be Vasculitis type lesions but they're weird!!
The double vision isn't a blurring either - its complete double vision, so I see 2 of everything, one on top of the other. If I close either eye I can see normally again, but as soon as both eyes are open the double vision returns. It lasts seconds to a matter of minutes. I think the medical description is intermittent transient binocular vertical diplopia. I'm back at the GP tomorrow so will let him know it's been happening again.
Oh the trials and tribulations of these weird and wonderful conditions!
Just been referred to the Dermatology department at my local hospital with these problems. I hope they do better this time as the diagnosed my WG as 'an allegy to the cat' We'll see! I'll give them anothe chance.
Oh gosh. Good luck with your latest referral - I hope they don't come up with a cat allergy! My GP initially said I had ringworm and despite my protests that I didn't I had to wait until I was covered in lesions before I'd be taken seriously.
Now I make sure I make myself heard if I feel strongly enough about something!!
Forgot to add that I also get mouth ulcers, and painful, surprisingly large, swellings on the back of my hands, though never both hands at once, thank goodness. Suspect there are swollen lumps on my feet too, at these times, as they are painful to walk on.
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