I finally got an immunology appointment for Frimley park in September. I'm quite nervous because having fought so hard for it I now don't know what to say or to expect.
The last couple of days though I have developed a strange problem, I have no idea if it's APS related but I can't come up with another cause so I thought I'd ask you wonderful supportive people if anyone else has experienced it. The problem is my skin is itching. It started with my wrists and stomach then my back and legs joined the party. There's no rash - although I'm starting to look like I've been fighting with a bramble bush from the scratching, I haven't changed detergents or medications or eaten new foods, I'm not under unusual stress (quite the opposite really, I'm on holiday from work and working on a new life plan). Antihistamine doesn't really help and I have no idea what else to try.
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I'vehad itchy skin at times too, sometimes with or without rash. They've put it down to the lupus I also have and just general autoimmune activity. Sometimes took weeks to settle. Aloe vera gel which is cold and soothing helps.
KerryA - what brought them to the conclusion you have lupus? What symptoms did you have that were not APS related? I am having some odd things happening and I am wondering if I should bring up Lupus to my team.Thanks.
I had a multitude of symptoms was diagnosed with both at the same time from deranged blood tests and bone marrow biopsy. Apart from obvious ones, don't know what was due to SLE or APS. It's worth asking them to test for SLE too.
Hi good luck with the appointment, regarding itching, I get sore and itchy due to Psoriasis and get through tube after tube of aloe vera, which soothes, stops the itch and also mends, I always have one in the fridge! MaryF
OMG my legs itched so bad for a time I scratched till they bled. I get itches all over as well. I bought every anti - itch cream under the sun. It will stop eventually but comes and goes - at least for me. Good luck xx
Do make a bullet list of symptoms and topics to present to your doctor. If possible, see if a close friend or relative can go with you. If you start working on your bullet list now you will have ample time to add this or that symptom you forgot about at first. Also time to arrange your list into categories that may help more quickly point your doctor in the right diagnostic or treatment direction.
As for the itching? There could be so many different causes that I can not provide you with any helpful suggestions. other then – it might be time to cut your fingernails very short so that your unconscious scratching will not produce a lot of red streaks on your arms or legs. Here in the States we have to deal with poison ivy which can produce itching and rash just by walking close to the plant in hot and humid weather. We also have mosquitoes. One of my purposes in life, apparently, is to provide nourishment and sustenance to those pesky buzzing varmints! So while Brits have the reputation of being very reserved in emotional situations, we Yanks have to cultivate a refusal to scratch when we get an itch. Scratch a poison ivy rash and the rash will spread. Scratch a mosquito bite and you will attract more mosquitoes.
I don't believe this...I was just going to post that I have been itching my skin raw for four days now.....!!!!!!!
Its nothing to do with APS - I have not changed meds or bath/wash products
that's so uncanny - back of knees - wrists - scalp - top of feet and even my neck & face. Same as you - no rash BUT was desperately trying to see if there was evidence of a bite and can't see one. I have had to keep my body brush by the bed as nails are making horrid scratches...the thing is though - scratching isn't stopping the itch. Its driving me nuts - I wonder if its something in the air???? I dont suffer with hayfever at all....mine kicked off Thursday
I have for many decades taken cetirizine. It was prescribed for dermographism (from the Greek skin writing I think) I was put on it for life by an Oxford prof of dermatology after he ran a finger down my back and a welt appeared. I did try to stop taking cetirizine (Zirtek) once and within days was itching all over. I had put it down to a seperate condition to Hughes- now I wonder!
I'm in Bracknell in Berkshire so we're a few hundred miles apart by my calculations. I'm going to make a GP appointment today because it's driving me up the wall and I wont have any skin left at this rate. I have found that scratching makes it worse Eurax cream is helping a bit and bio oil seems to soothe it for a while.
Gina - thanks for the advice about making a list, I will start one today. My husband is taking me to the appointment and will go in with me. I'm nervous about what is going to be done or said at the appointment but I guess all I can do is prepare the list and wait and see.
Zamalek - I'm in Bracknell so not far from you at all. Are you happy with Dr Karim? I haven't had a blood clot for many years, I had a DVT in my leg at 16 due to the pill but my APS wasn't diagnosed until I lost my daughter in the 20th week of my pregnancy aged 27.I've been really lucky, I just have the more minor symptoms, joint pain, fatigue, brain fog etc but no more clots so far. Doesn't stop me worrying though. I know it might never happen if my luck holds out but not having a specialist to turn to has made me feel like I'm mountaineering without a safety harness.
APsnotFab, I haven't had my thyroid tested for a goodly while now, it's always been ok or borderline according to my GP, my last glucose tolerance test was borderline too. I am sensitive to gluten, although not coeliac (that was a definite negative test last time), but I know it sets off my IBS. I'm hoping Dr Karim's team will check thyroid when I go to Aldershot for my first appointment late September but I really don't know what to expect from the appointment.
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