Cuteanous mastyeoytosis

[Dazz27]

Hi everyone. I have cuteanous mastyeoytosis and Im currently taking citirizine and hydroxyzine and montulcast medication but finding symptoms getting worse especially at night. I'm asking if anyone can advise me on different medication as my doctor doesn't seem to know to much about mastyeoytosis.

[Jess-UKMasto Partner]

Hi Dazz,

If you are an adult with mastocytosis there is a reasonable chance that you have systemic rather than just cutaneous (skin) mastocytosis, so a longer term goal would be to see if you can be referred to a more experienced doctor who can assess you for systemic mastocytosis (if that hasn't been done recently) and who can look at the specific symptoms you're having and try to figure out the right medications (and doses) that will help you get the best control you can. If you'd like to talk about how to find someone with that experience you could email me at [e-mail].

The combination of medications that is typical for mastocytosis patients are the H1 blockers you're taking (cetirizine and hydroxyzine), the leukotriene inhibitor (montelukast), but also a mast cell stabiliser (Nalcrom-- which you may see from another recent post here is temporarily in short supply). Some people also have issues with too much acid in the stomach, and that is usually treated with an H2 blocker such as famotidine, cimetidine or nizatidine (all also a bit hard to get right now, but possible) or a proton pump inhibitor (omeprazole, lansoprazole etc). In addition, there is an H1 blocker that also maybe has some mast cell stabilising effect called ketotifen that could perhaps be traded for one of your H1 blockers. (It would be unusual to have someone be taking 3 different H1 blockers, and it would likely make you quite sleepy!).

If you'd like to share what specific symptoms you're struggling with maybe some others would also share how they have gotten some relief.

Very best wishes!

[Dazz27 in reply to Jess-UKMasto]

Hi Jess and thank you so much. You just told more in one message than anyone has in years and years god bless you .I had feeling about systemic after reading stuff on mast site. It's hard to get to see my doctor's right now because of covid and recently being in hospital for 3 months after bad accident and breaking my back. My main issue is the red spots speeding and the itching at night is getting worse. I really need to speak to my doctor. I moved to Dorset just before lock down and asked to be referred to a dermatologist here but not herd back yet probably because of covid.

I can only thank you from my heart for your excellent advice. Thank you

[Jess-UKMasto Partner in reply to Dazz27]

I've sent you a pm on the question of where to be referred to. I'll respond here about itching as a symptom. Hydroxyzine can be a helpful medication for itching, so that was well chosen. It may be that you could be taking a higher dose of it to manage it, but you'd of course need to discuss that with your doctor and there are some side effects that you'd need to consider as well on that. Some of our kids with cutaneous mastocytosis actually find some help with itching from H2 blockers (famotidine, cimetidine or nizatidine) which is not what's expected, but it seems to help. Another thing that can help is making sure that you're not getting too hot at night. Cotton pyjamas, light bedclothes. Baths can also set off mastocytosis spots, so considering showering or taking a cooler bath can be good. And cool down after a bath or shower before dressing so as to avoid trapping heat in the clothing and keeping the spots too warm. Another approach that helps some patients is special light therapy with UVA or UVB light. It can be quite time consuming as you need to go in for regular sessions, but some do find it is a good help. Others don't find it's a help, or only have a short period where it works, so a bit hit or miss. Also, keeping your skin well moisturised with a product that doesn't make you spots angry can help decrease itching.

I'm so sorry about your accident and the long recovery! The stress of that experience could also be making your spots unhappy, as stress is a common trigger. In addition, if you're taking any pain medication ongoing that could be something that it making your mast cells more unhappy.

I hope you're able to make some progress on getting a good night's sleep!

[Dazz27 in reply to Jess-UKMasto]

Thank you so much. You have gave more information than iv ever had and it's very helpful thank you so much.

[Jess-UKMasto Partner in reply to Dazz27]

It may take some experimenting to see what helps. Maybe others will chime in if they have other ideas, too. xx