Hi All! I hope everyone had a great weekend. Ours was kind of rough. Eric, my husband, was diagnosed with Lupus in February. He gets petechia BAAAAD and hives. He went about 3 weeks without it and it was a blessing. It has returned with vengeance. He is miserable. He takes his Prednisone as he is supposed too. It started on his legs and now… he can feel when it's about to happen. He cramps and hurts. Friday night we WATCHED it crawl up his arm to his hands.
Does anyone else experience this?
Is this normal?
Any remedies or meds to help the itch and/or stinging?
I haven't had this happen but since he can feel it coming on, maybe he can use Aveeno oatmeal either a bath or rub it on the affected area, he can also see if icing it helps or if heat works better. I know ice works the best for most people but heat seems to work with me. Encourage him to not scratch the itch because that will make it worse. (immune response). it is such a frustrating disease because it affects all of us differently but we are all in the same boat. I make a joke that at least I don't get bored with my life because every hour of every day can differ. I can feel great , then terrible or visa versa. crazy. I hope he feels better and he is one step ahead because he has an understanding spouse. very important!!
I use antihistamines for my hives. My skin rashes are sun and climate reactions. Wet washcloths in freezer and let thaw on skin. Don’t forget to moisturize. Cortisone is harsh sometimes. Good luck
It's definitely something that should be addressed with his RA as any allergic reaction can become very serious very quickly. He may need something like an Epi-pen or something of that nature.
Petechiae (pah-TEE-kee-eye) are tiny red spots on the skin, especially on the lower legs, that result from low numbers of platelet in the blood, a condition called thrombocytopenia. Although thrombocytopenia is common in lupus, serious bleeding as a result of the low number of platelets usually does not occur.
Hate that word petechia. Makes me think of someone being smothered. Another thing to keep from scratching, zip lock 1 part rubbing alcohol 3parts water. Will get cold but stay very flexible
Feels good on larger areas.
I didn't think about the immune response from the scratching. I know how frustrating it is for me, I canNOT imagine how frustrating it is for those with the actual disease. It's horrible to watch, I know that much. I just wish I could take the pain away. I really appreciate that Flower. I try VERY hard to stay positive so it makes it a bit more bearable for him. I've researched and found some really ugly reality of the disease. The part that sucks... is do I tell him the what if's and what could's?? I prefer not too at this time, since it is so new to us. I don't want him to think that he's worse than what he may be. Thanks for your support. I appreciate you.
Laci
flower said:
I haven't had this happen but since he can feel it coming on, maybe he can use Aveeno oatmeal either a bath or rub it on the affected area, he can also see if icing it helps or if heat works better. I know ice works the best for most people but heat seems to work with me. Encourage him to not scratch the itch because that will make it worse. (immune response). it is such a frustrating disease because it affects all of us differently but we are all in the same boat. I make a joke that at least I don't get bored with my life because every hour of every day can differ. I can feel great , then terrible or visa versa. crazy. I hope he feels better and he is one step ahead because he has an understanding spouse. very important!!
Hi Annie, I hope you are feeling great today!! I will definitely try the washcloths! Great idea! He has some poison ivy cream he uses, but it doesn't work that well.
annie said:
I use antihistamines for my hives. My skin rashes are sun and climate reactions. Wet washcloths in freezer and let thaw on skin. Don't forget to moisturize. Cortisone is harsh sometimes. Good luck
The rash is what had our curiosity peeked to begin with. His Reumo knows and is very aware of the severity of it. She is stumped but is absolutely AMAZING and really is trying to help us. He was given an epipen from the get-go because how bad his throat was swelling. As of right now, the swelling of his throat is because of something with his liver. We go in for a biopsy sometime this month, but not sure of the date just yet. Today, he's having a great day... for now. :-)
whathappensinvegas said:
It's definitely something that should be addressed with his RA as any allergic reaction can become very serious very quickly. He may need something like an Epi-pen or something of that nature.
That was the first thought of the doctors we originally saw was low platelet count. He came in for SO many blood panels. His platelets are just fine! Therefore, the doctors are stumped. We have at least 1 doctors appointment a week and at every single appointment, he has a minimum of 8 vials of blood drawn along with a urine analysis.
Eagle41 said:
Found this on Lupus.org. Maybe it will help:
Petechiae (pah-TEE-kee-eye) are tiny red spots on the skin, especially on the lower legs, that result from low numbers of platelet in the blood, a condition called thrombocytopenia. Although thrombocytopenia is common in lupus, serious bleeding as a result of the low number of platelets usually does not occur.
So very true. He does feel smothered when he has them. It's so sad. His whole body is purple!!! I will make that concoction when I get home. Thank you so much! Anything, is worth trying!!
annie said:
Hate that word petechia. Makes me think of someone being smothered. Another thing to keep from scratching, zip lock 1 part rubbing alcohol 3parts water. Will get cold but stay very flexible Feels good on larger areas.