Nasty rashes

[Jilly6060]

Hi I have had sle for about 8yrs now and for the last 3yrs not taken any prescribed medication I tend to use natural medication but the last few weeks I keep getting this nasty very itchy rash all over my body it just starts anywhere anytime for no reason it starts with a tingling prickly sensation in my mouth and lips and a strange pain in my chest area then the uncontrollable itching starts anywhere and everywhere goes on for about an hr then just goes away but leaves me feeling pretty off I was wondering if anyone else sufferers anything like this and what it is pics below and thanku x

[lupus-support1 Administrator]

It is your right to decide how to treat or not treat your body. However, just because something is presented as "natural" does not mean it is safe or cannot harm. One example is digitalis.

I would recommend two things. First, stop using anything that has not been prescribed for you. It is possible, you have developed a sensitivity. Second, see a dermatologist.

With good wishes,

Ros

[Freckle1000 Volunteer]

Sorry - I'm going to be a little bit more brutal.

You have SLE Lupus - this illness does naturally come and go. You might have been lucky enough to be in a natural remission - but the devastating, disabling and possibly fatal flare will eventually come unless you take prescribed medication.

Its pretty common for SLE suffers to be ok for a while, but then suddenly become so unwell - there's absolutely no turning back. Non compliance with medication is a common cause of death.

Please don't let the vested interests of very greedy and profitable health product spruikers delude you into thinking you can control this illness without prescribed medication. It may seem like the healthy and wholesome thing to do - but its an illusion.

Please get to a specialist and get some treatment. Its a terminal illness without it.

[Jmiller623]

I used to get rashes like that real bad on my legs particularly the backs of my thighs. Huge red welts. It itched horribly. I’m not sure it was in response to any items I was using at the time but was more prevalent when I lived in another state and was out in the sun more. It always came on around October/November.

I agree with Freckles though. You should probably go back on treatment especially with the chest pain. Are you still actively followed by a rheumatologist? If so, I’d send them a message or I think even this picture would be enough to gain you an appt in a month or two but I’m not completely sure how UK system works.

[lupus-support1 Administrator in reply to Jmiller623]

Unless you are lucky to have a private rheumatologists, the procedure is to see the GP who will refer. If you are lucky, the waiting time, at least it was, is within x weeks, purely for the hospital to be within NHS guidelines. At St Thomas, a follow up appointment was 18 months & unless you insist loudly, you only see a Registrar, who knows little as they are on a rotation. Consultants don’t give their email or phone numbers.

[lupus-support1 Administrator]

I have to agree that I was not as pointed as I should have been: see your rheumatologist!

[hihannula]

Yes, I have had this exact rash happen to me 3 times in the last 6 months. Out of the blue comes on fast and gone within 12-24 hours. I’ll send photos if I know how to.

[hihannula]

And for the record I take prednisone, plaquinal, and warfarin for lupus and APS and I’ve had the same rash/hives as yours. I have never felt unwell with the rashes/hives, just burning and itching. The third time it happened we had eaten deli salads (which I rarely eat that junk)and so my husband and I tried hard to remember what we had eaten the other two times and it was deli food. I think, but not sure but there is something in deli food. I’m not going to eat deli again because I might not be so lucky next time as it may close up my throat.

I’ll send another photo of them on my neck. Maybe journal what you eat for awhile. I’m sure it’s the poison in all our food.