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Sticky Blood-Hughes Syndrome Support
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Random itching

Hi everybody

Just joined community having been diagnosed last week with Aps I've read about pins and needles in face which I also get but does anybody get intense itching throughout there body which comes and goes within minutes but can also last for some hours

Many thanks

Lee

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Hi some people on here do get severe itching, getting to the bottom of what it is, is sometimes tricky, for my daughter who had this, she literally had hives on and off for nearly 18 months, after a drug reaction. However if you are adding in antihistamines or anything you must do this under the supervision of your consultant to be aware of INR and and drug contraindications. MaryF

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Thanks Mary

A lot of symptoms on sites don't seem to be covered and sometimes i go around in circles and totally confuse myself 😂 so it's nice to have a bit of support from the likes of your good self Mary

Many thanks 👍

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What's the best way to stop a bad nosebleed

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Perhaps cheque if your INR is too high. Depends on why you have it. Talk to a Doctor and ask him.

Kerstin

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I've never had a bad nosebleed – but my understanding is: pinch your nose closed while rotating your face so that you're looking straight at the ceiling. If it doesn't stop soon, go to the ER.

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I was told that my itching was due to too much fat in the blood by my liver doc.

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Thanks holly I'll look into that xx

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Hi there.

I sufferered itching for a while, but through illiminating certain foods finally found that I was reacting to foods containing tomato. At one point it would be so bad it would wake me in the night as I would scratch so bad till I bled. After I stopped eating certain things the itching became less intense.

I also itch when I'm hot though, especially when I've been to the gym or in the summer when I have to apply suncream.

Maybe an idea to speak to your GP about getting an allergy test done as if it's something in food causing it, it should show up in the tests.

Hope you find some relief soon, as I know how frustrating it can be.

Sally

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Thanks so much for reply Sal will get to docs and ask for test x

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Hi Leefow,

I also experience a pins and needles sensation on my face (mostly cheeks and forehead) usually while I am exposed to extreme heat or cold. I also develop small pimples-like bumps on the affected area after experiencing this sensation. I spoke to my family doctor about this and he seemed to think that it is likely Roscea.

Hope this helps,

Firefly

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Hi fire-fly

just looked it up on nhs and the pic of the bloke with red cheeks looks like what I get but thought it was the Hughes syndrome causing it maybe I'll have to re assess and ask doctors more questions on this matter when I next see them

Thanks very much for reply x

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I had problems with numbness in different parts of my face after my first CT scan when I had ptosis of my eye and a pale optic disc, my eyes also got dry. Then it stopped and 4 years later my back went numb and they gave me a prednisolone infusion, and I had swallowing problems. Now that has gone, will never know the cause, but it is a really awful feeling

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Hope you have got a Doctor specialized in autoimmun illnesses like APS and that he has put you on an INR-level that is high enough for your symtoms to disappear,

Why I ask, is that before I was properly anticoagulated, I had numbness in my face as a symptom. They were micro-embolies or TIAs. We need an INR between 3.5 - 4.0 most of us when we have this illness. Have you read what Prof Hughes says about it?

Best wishes from kerstin in Stockholm

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Hi kerstin

Actually seeing anticoagulation Doc tomorrow for first time ( warfarin ) so will pose these questions to them

Thanks so much for reply great help

Lovely to hear from you Kerstin x

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Thank you Leefow!

I wish you luck tomorrow!

Show him what prof Hughes says about INR. Response to "November question of the month" or/and "December Blog"

Kerstin

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Interesting Kerstin, I get pins & needles, tingling, numbness in my face, under eye, along right jaw line and slightly under, a few times a week. Recently it happened at aps office visit so they had a doctor come in (while I was waiting for hema/onc aps specialist to make his rounds to my room) and he asked many questions and checked me out. I advised him it happens all the time, no worries, no slurring, etc. I've been on Fragmin injections about 3.5 years now.

Looking back I remember at least back to 1998 when facial numbness began, at least where I noticed it.

Since aps dx I've wondered if these might still be "mini-mini" tia's.

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Hi,

I am on Warfarin as you probably know so I take a Fragmin-shot when my INR is too low.

What I can think of, it is if your Fragmin-shot is not "strong" enough, not enough for your weight perhaps.

Always the same side? Does it happen when almost 24 hours is gone for the shot?

Kerstin

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I'm on the proper dose, 18,000iu of Fragmin.

Almost 24 hours after shot=No. Even hurts 1-24 hours after shot.

Worst pain is after sitting down for maybe 10 minutes to an hour and standing up. The other worst pain is in bed. I have a 5-6' long body pillow I use for sleeping on sides and even just the pressure of knee on knee with 8" pillow in-between is painful. So inactivity makes it worse. I wake up every night with both knees hurting even with es vicodin.

If I get up and move a little bit it helps reduce pain. I don't think my knees are swollen all the time, but I haven't looked either (part of my way of dealing with pain is to not give it any attention if possible).

Pain: Both knees, sometimes just left knee, sometimes just right knee, then back to both hurting at the same time,

Thx!

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