Anyone with UP had these symptoms?

[Jazzsinger77]

Hi guys,

This may be unrelated to my ultcaria pigmentosa. but wondering if any of you have ever had any of these symptoms or could explain them:

-occasional physical exhaustion at the end of the day (if your body is overreacting to potential infections I wonder if that exhausts the battery sometimes?!) could also be covid fatigue/stress J guess..

- spot like rash on forehead which comes and goes and is probably made worse by alcohol or lots of sugar. These red spots don’t remain like UP spots so I’ve never thought of them as being the same. They just appear from no where and do sometimes get more pronounced if hot/stressed.

-very occasional mini fever type thing staring in evening and gone in the morning. This happens a few times a year max so I’ve never really connected it to UP.

None of these things is life changing or really bothersome but wondering if others have heard of this or had same thing.

Thanks!

[Topnumpty]

I can identify with much of that. Particularly the forehead rash. One nurse practitioner thought it looked like shingles. My rash, fatigue etc tends to be triggered by stress, perfumes and aromas, over-exertion. Thankfully, I can cope with alcohol, and don’t bother with sugar or sweet foods.

[Jazzsinger77 in reply to Topnumpty]

Thanks for the reply Topnumpty! Is the rash and fatigue always there or just occasional? I would be a bit devastated if these symptoms were continuous. I also don't see how the rash is linked to UP? The spots/marks on the forehead sometin=mes look like normal spots/zits and not like the rest of my body which is largely covered.

[Jess-UKMasto Partner in reply to Jazzsinger77]

Hi Jazz, Intolerance of alcohol is quite common in people with all forms of mastocytosis. Fatigue is also common, as some of the chemical mediators released by mast cells can make us feel rubbish. Glad Numpty can relate on the rash. Flushing bright red is more common than a rash-shaped reaction. While the research literature doesn't associate fevers with cutaneous mastocytosis (as far as I've read) some people with mast cell diseases do report them. It's also possible that you're fighting a virus or minor bacterial infection, I guess, as they are uncommon for you.

[Jazzsinger77 in reply to Jess-UKMasto]

Thanks Jess. Very helpful!. Does the fatigue tend to be a constant thing? I'm hoping not

[Jess-UKMasto Partner in reply to Jazzsinger77]

Fatigue does vary a lot. In some people it is more constant, but in most it is associated with having been "triggered" by something. For example, before I realised I was reacting to some foods, I had noticed that at work I sometimes was so tired that I'd get winded walking up stairs. Then I realised it was after lunch that it happened and noticed that it mattered what I ate for lunch. You might identify some things that precede your periods of fatigue if you write down what happens on that day (what you at or drank, any exposures to chemicals such as cleaners, perfumes etc, places you've gone etc.). I hope that it will turn out to be something that's short-lived for you! xx

[Jazzsinger77 in reply to Jess-UKMasto]

Thanks Jess. To be honest when I was diagnosed with UP I presumed that there would be no other symptoms (apart from the occasional itchiness/redness) unless it progressed to other other organs and bacame systemic. I was told to have a yearly check up and let them know if there were any changes (stomach issues, fever etc) Reading some more recent research (a German study following about 30 sufferers I think) it appears that most UP sufferers do have sytemic MC.

I'm glad I have found this group and am becoming more informed but in some ways, I would rather not focus too much on these symptoms and possible links to UP as I think you can get yourself down over it or see this as a life altering condition (the fatigue thing for example worries me a bit!)

What do you think? Should we all be fully accepting that this diagnosis will most likely affect our quality of life significantly or expect that as long we reduce triggers and stay well, we should be able to live completely normally?

I think a lot of people like myself just see this as a skin disorder that is only a significant issue if it spreads and becomes systemic. I am doubting this now!

[Jess-UKMasto Partner in reply to Jazzsinger77]

That's an interesting question about what will work best for you in terms of how you think about the condition. Since most adults do eventually have SM it's reasonable to assume that you could have SM, but lots of people live full lives with SM. It is also possible to have symptoms that affect other parts of your body just from cutaneous mastocytosis, so having fatigue on occasion doesn't necessarily mean you have SM, just that something set off the mast cells in your skin on that day. I think it's important to have an annual check-- full blood count and tryptase taken and spleen and liver poked at to be sure they're normal size-- if you have UP or SM. Those are things that would help you know that there's something that need attention, but you don't need to tiptoe around life unless you're feeling unwell and want to try to figure it out. (I'd also be inclined to carry epipens with any form of mastocytosis, but that's not everyone's view if it is limited to the skin. I'd say absolutely carry them if you're off on an exotic (or less exotic) holiday where you're far from competent healthcare.) I do think it's personal choice about how much you focus on removing triggers and how much you put it aside and get on with things-- and that balance might change over your life! x

[Jazzsinger77 in reply to Jess-UKMasto]

Thanks so much for your insights on this. I’m sure it will be very helpful advice for others in the group too.

[Topnumpty in reply to Jazzsinger77]

My rash, and the fatigue are currently well controlled, so , thankfully, not impacting much on day to day living. I do know that my major triggers are some medications, sunshine, and perfumes and chemicals. Other people!!I think, when first diagnosed, I attributed every little symptom, or niggle, to UP or CM, but we can have other conditions, too.

As Jess has already mentioned, the mastocytosis rash tends to be flushing and bright red, hot and itchy, raised areas on skin. The forehead spotty rash is red itchy blisters. Hence the nurse thinking it was shingles the first time it appeared. It does seem to be triggered by sun exposure. So I have found a sunscreen that doesn’t cause a reaction, and wear a hat, and / or stay in the shade.

Edit: I could put up a photo of my forehead rash if that is allowed. Could Jess confirm?

[Jess-UKMasto Partner in reply to Topnumpty]

If you're comfortable sharing the photo and it's not a part of the body that should be hidden by a bathing suit then it should be fine to share. If you're wanting to protect your own privacy show parts of you that are more generic and not your full face : ).

[Topnumpty in reply to Jess-UKMasto]

Usually only covered by hat.😉

Rash on forehead

[Jazzsinger77 in reply to Topnumpty]

Thanks for sharing that photo. Looks a little like mine but mine aren’t really itchy at all or hurt. More like red marks or normal spots often accompanied with dryness..it’s all very strange ...!

[dobbo2021]

Hi, yes all of the above. Definitely part of my systematic mastosytosis. I cannot tolerate alcohol in my system. I get raised dry skin which come and go in addition to my urticaria. Definitely flushes.