TMEPgirl looking for management advice

[Medmonds]

First time posting on this site.

I was diagnosed with TMEP in 2012. Main symptoms are the rash on my legs and torso. I was prescribed antihistamines and hydrocortisone cream, and advised to avoid high histamine / histamine liberating substances where possible. I'm not sure either have made much difference, in fact if anything the rash has gradually worsened over the years. I have found it really difficult to identify consistent patterns in impact of food / drink on the rash outbreaks. Unfortunately exercise and extremes in temperature seem to cause flare ups which are more difficult to avoid.

I was reviewed towards the end of last year. They have doubled my antihistamine dose and advised I cut down on caffeine. I was also referred for blood tests and ultrasound which all came back normal. Again I'm not sure the change in dose / reduction in caffiene has made much difference. I was due to be reviewed this month but cancelled due to lockdown.

I just wondered if anyone had any advice re other interventions that might help with the rash.

Thanks

TMEPgirl

[Jess-UKMasto Partner]

HI Medmonds, I'm sorry to hear that your TMEP rash is continuing to bother you and the antihistamines aren't much of a help. Just as a brief summary about TMEP, which you may already know but maybe the next reader doesn't: TMEP is a form of cutaneous (skin) mastocytosis. TMEP describes the pattern of the skin involvement. In all forms of cutaneous mastocytosis, there are too many mast cells in areas of the skin and those mast cells are usually a bit funny shaped when seen under the microscope. Nearly all (but probably not all) adults who have cutaneous mastocytosis will find at some point that they have systemic mastocytosis, in which there are too many mast cells not only in the skin but also in other body tissues such as the stomach and intestines, the airways, and the bones. That's the reason why it is recommended for all adults with any form of mastocytosis to have an annual check where a full blood count is performed and tryptase levels are measured. This can give a hint as to whether you should have a more thorough assessment to see if you have systemic mastocytosis (SM). Since adults with mastocytosis are more likely to experience big allergic-type reactions called anaphylaxis, we take the view that all should be prescribed epipens (adrenaline self-injectors) in case of such a reaction and should also take care when planning for surgery since some folks with mastocytosis have reactions to anaesthetics and other agents used in surgery. (See our website ukmasto.org for an anaesthetic protocol.) So that's the part you didn't ask for : ).

Now for the itching question! First, there isn't a treatment that would be considered in your situation (so far cutaneous only mastocytosis) that makes the spots go away. (There are trials going on for some forms of systemic mastocytosis with lots of full body symptoms where the spots do seem to fade in some patients, but that is not approved and wouldn't likely ever be used just for skin involvement.) There is a light treatment (think a weird tanning bed kind of situation) called PUVA that is sometimes used but its effects are short-lived and it can increase the risk of skin cancer so is rarely worth the effort for most adults. (Some kids with very, very extensive lesions get some real improvement that improves quality of life, but I don't know adults who have persisted with this treatment.)

So what else? First, making sure that your antihistamines are doing the best they can. Since there are a number of choices for antihistamines you may find that another one works better than what you're taking now. Some patients report that hydroxyzine at night (it makes people sleepy) is a really good one for them. Cetirizine, which is a close relative is less sedating and can also be a good choice. Others swear by fexofenadine. So some slow and careful trials with your GP's help would be good. Some mastocytosis patients do take an increased dose of antihistamines with their doctor's permission, so you could discuss whether your dose could be assessed. Some parents say that their children have less itching with the addition of an H2 blocker as well. Those medications are normally used for acid stomach type symptoms, but since we have H2 receptors for histamine in other body tissue they can help elsewhere as well.

Also keeping the skin well moisturised can help cut down on itching. You may want to experiment carefully to find a product that you tolerate. Just try a tiny patch first in case you don't get on with anything new! Also worth discussing with your dermatologist if you can so you have some ideas of ones that are best tolerated by sensitive skin.

I hope you get some improvement so you can be more comfortable!

I hope others will pop in with their strategies if they have more ideas!

Best wishes,

Jess

[Medmonds in reply to Jess-UKMasto]

Thanks Jess.

I will look into trialling other antihistamines.

Not interested in PUVA.

I do moisturise with Aveeno.

Didn't realise the high risk of developing systemic mastocytosis or the recommendation to carry an epi pen so thanks for enlightening me. Is there anything you can do to prevent / reduce / delay the risk of developing SM?

Any other suggestions are welcome.

[Jess-UKMasto Partner in reply to Medmonds]

Hi Medmonds, at this stage we don't know of anything that we can do (or not do) to change the course of mastocytosis. We can manage our symptoms to maximise our quality of life. We can take calcium and vitamin D (assuming they are tolerated) because of the increased risk of osteoporosis in mastocytosis. We can carry our epipens to maximise the chance that we'll have them if we need them, and make sure we prepare for surgery. I wish there was something we could do that would change the course of the disease in a positive way but so far, we don't know. Glad you have new information that will keep you safer. xx

[specksmum]

Hello! I too suffer episodes of rashes on the legs. They are only from ankle to knee, but they itch horribly! I have found that aloe vera cream helps a lot. Even better when I have enough on my plant is the gel straight from the plant itself.

[Medmonds in reply to specksmum]

I have tried aloe vera straight from the plant - a friend gave me some - it did really help to sooth my skin - must get some more. Thanks for prompt Specksmum!