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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> No more skin writing http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1295969878 Message started by nelson1600 on 01/25/11 at 03:37:58

Title: No more skin writing
Post by nelson1600 on 01/25/11 at 03:37:58

After receiving some great advice about a week ago I incorporated some over the counter medications into my regiment. I currently take the below meds:

Xyzal - 5mg
Singulair - 10mg
Zyrtec - 10mg
Zantac - 300mg x twice daily

I added the Zyrtec and Zantac about a week ago and they have worked wonders (Thank you Lisa). With the addition of these new meds I noticed my symptoms were getting better / calming down; over the weekend I also noticed that my skin wasn't reacting the same way as it had before in regard to the skin writing so I thought I would try something. I started taking all of my meds twice a day (am & pm) like with the zantac.

Today is the second day in a row that I have not been able to write on my skin :) -- YAY!!! I have had this symptom since all of this started in August! I am so thrilled, my children may be disappointed, they had nicknamed me "Human Etch-A-Sketch"; but I think they will survive in the long run :)....

There's a second side to this though and I may need some advice on it. I woke up this morning and my nose was full of dry crud; I had to blow my nose VERY hard to get the junk to come out. When I did this it started bleeding and I mean it was a heavy steady stream of blood. I took tissue and laid down with my head back and after about 15 - 20 minutes the bleeding was not as heavy, but it last about an hour in total. I am assuming the amount of antihistimines coupled with the cold weather dried me out?

Starting today I'm going to go back to my old regiment and take my Xyzal, Singulair, and Zyrtec only at night; but if my skin writing comes back as a result is there something else I can do to eliminate that symptom?

Title: Re: No more skin writing
Post by DeborahW, Founder on 01/25/11 at 04:03:11

I definitely can answer some questions for you. The histamine blockers can be very drying. I have to put eucerine cream on my face every night to prevent it from being dry and flaky in the morning! Yet I need my meds. Clearly you respond well to the basic meds you tried, which is great. I am like that as well. Here is what I think you should do:

Morning:
Zantac
Zyrtec

If convenient early afternoon/ if not convenient, take in morning
Singulaire

Evening:
Zantac
Zyrtec

If you can get a script for allegra 180mg, you should replace the morning Zyrtec with the allegra. This was advice to me from Dr Akin who found that many patients do better with an allegra and a Zyrtec rather than 2 Zyrtec.

Only take 1 singular/day. Also from Dr. Akin, it has a very slight risk of contributing to vascular disease.

To prevent the nosebleeds: drink lots of water throughout the day, get a humidifier for daytime use, dab a tiny bit of Vaseline just inside the nose. These suggestions come from my daughter's pediatrician, as she has a lot of nosebleeds. Also, don't lie back when you have a nosebleed! Instead, you need to pinch for at least 10 minutes the bridge of your nose. Place a washcloth under very cold water and put that on your nose and pinch through that. The combo of the pinching and the cold will help. Any nosebleed over 20 minutes is too long. These tips should help prevent that. Don't tilt your head back. And if you start swallowing blood, tilt head forward.

Oh by the way, I am unfamiliar with Zytal and thus that is why I didnt mention it either way.

Got to run, hope this helps!

Late afternoon/early evening
Zantac

Title: Re: No more skin writing
Post by Starflower on 01/25/11 at 04:07:27

You're much better off not being the human etch-a-sketch! :D A reaction on your skin can easily lead to other symptoms... and a worsening of your disorder over time.

A few thoughts about the dryness... that's the reason I reduced my H1s for the winter. I just started increasing them again (last night, in fact), because I'm starting to get some breakthrough symptoms like dizziness. Maybe things will settle down once the turmeric gets out of my system (bad experiment!), but I'm not too hopeful since my first big attack was in February 2009. February seems to be a bad month for me. Anyway... it does take a little experimenting to see what makes you most comfortable. Have you ever tried using a humidifier in your bedroom? I also find that if I eat something hot in the morning (oatmeal is perfect) it gets my nose running and then it's a lot easier to blow ;) Gross, but true.

Heather

Title: Re: No more skin writing
Post by nelson1600 on 01/25/11 at 04:42:31

Deborah and Heather, thank you for your input... Deborah, I think I might try your recommendation... I'm going to go back to my normal regiment for a few days, maybe a week and see if the ability to write on my skin comes back; if it does then I'm going to keep experimenting.

I had to modify the message, because I almost forgot -- no I do not have a humidifier, but it sounds like a priceless investment if I continue to feel dried out. That will be on my shopping list for the week ;).

Thank you again and I hope that you both are doing well.

Title: Re: No more skin writing
Post by Riverwn on 01/28/11 at 08:14:48

@ more suggestions. Do NOT blow your nose that hard, lol.. do it gently. The other suggestions is to buy some Nasalcrom nose spray at walmart 14$ a bottle. works well for me, less dry.
Hugs,
Ramona

Title: Re: No more skin writing
Post by ruth on 01/28/11 at 13:19:58

Nelson I love the 'human etch-a-sketch' tag, must tell my son that one. When a doctor noticed his dermographism I asked him if he knew abou it already, he said 'yeah, I do it all the time when I'm bored in class'. Joking aside, glad to hear you are finding some relief witht he medications Nelson.

I'm interested in Heather's comment about it being not a good idea to live with it - what are the negative effects to be concerned about? The dermatologist who my son was seeing didn't really deal with it like it was something to worry about, just interesting. We are seeing a new dermatologist on Monday and I'm hoping to get somewhere with a diagnosis, but forewarned is the best way to go, so if there are reasons to be treating this symtpom at least then I will be pushing for it. All of his symptoms seem to have improved lately with a low-histamine, low additive diet, but still a new hive appears every day or two.

Ruth

Title: Re: No more skin writing
Post by Starflower on 01/28/11 at 13:36:05

Hi Ruth,

Degranulation causes a cascade of things to be released... histamine, leukotrienes, VEGF, and most important for this discussion... cytokines. Cytokines (also known as interkeukins) go out into your blood stream and tell other blood cells what to do. For example, if you get a cut you need the cells in that area to recruit others in order to form a clot and start the healing process. Very important! With us, the problem is that we have tons of cytokines being released all the time. For some people, this doesn't seem to be a major problem. For others, it IS a problem. A reaction in your skin can spread to other parts of your body.

It the short-term, it might not be a problem if your son does his "etch-a-sketch" thing ;) The reaction might not go beyond his skin. (I would urge him to stop though if it brings on other symptoms like headaches, nausea, dizziness, etc...). In the long-run, by releasing all of those cytokines he might be recruiting more mast cells to his skin... slowly making his mast cell disorder worse. It depends on what kind he has. Until you know for sure if it's MCAD or a neoplastic mast cell disorder (SM/UP), I don't think it's a great idea to be degranulating more than necessary. Make sense?

Heather

Title: Re: No more skin writing
Post by ruth on 01/28/11 at 18:14:27

Thanks Heather, that does make sense. What doesn't make sense is why the doctors who have seen him so far have not addressed things like this, but then I know I'm not alone with that frustration. He does suffer a lot from headaches, including migraine, at times with nausea and GI symptoms, along with all the skin problems, so if there is the likelihood that one thing like the dermographism could be causing the other things to be worse then it should be addressed. But so far the approach has been to treat things in isolation, and as the skin writing isn't an immediate problem for him, and apparently the elevated IgE also, the doctors dismiss it. I am frustrated by the 'can't explain it so I will conclude that it isn't relevant and not doing any harm' approach of his previous doctors. I am just hanging out for Monday, very impatiently I must say, but hoping we make some progress with this new doctor.

Ruth

Title: Re: No more skin writing
Post by Starflower on 01/29/11 at 01:32:16

Hi Ruth,

I totally understand your frustration. Most doctors think about symptoms in a short-term, compartmentalized fashion... and they don't really know anything about mast cells, so they're not thinking about cytokines (or heparin, or VEGF... things that won't kill you in the short-term). The mindset of most doctors is, "As long as it doesn't kill you, it's not a big deal." Well... we as patients have a different perspective... 1) What doesn't kill me could still make my life hell, and 2) What else can I do besides taking medication to help myself feel better? These are simply not the kinds of concerns that doctors have. Western medicine is GREAT for treating crises... it's TERRIBLE at preventing them. And really... why is a doctor going to spend a lot of time talking about "lifestyle changes" with a patient who may or may not change anything? (I imagine this is one of the most frustrating parts of being a doctor who works with patients that have chronic illnesses affected by diet like diabetes or celiac disease).

Anyway... now you know that this "no big deal" symptom might be a problem in the long run. It's like eating bacon and eggs every day until suddenly, whoops... I have high cholesterol. It's not easy to make changes that don't affect you in the short-term (especially as a teenager!), but hopefully your son will understand and see that what he's doing is a not a great idea... even if it kind of fun ;)

Heather

Title: Re: No more skin writing
Post by ruth on 01/29/11 at 02:45:52

Hi again Heather. I will see what this new dermatologist has to say about it. Cameron is actually pretty good, at least for a teenager, if it is exlained to him why he should or shouldn't do something, and especially if it seems to make sense and is credible to him. He is starting to take on board some of the dietary changes I have been making and choosing for himself to avoid things, even though I haven't enforced it strictly at all up until now. There are things he is still not so good about, like trying to pay attention to his symptoms and record them, but he will get on board with making changes once we have a clear picture of what is really necessary. So far we've been skirting around the edges not quite sure what we should be focussing on, with no clear direction from doctors at all. It didn't help that before we moved here we were living in Belgium and couldn't always communicate as well with doctors there, specialists can be hard to communicate with at the best of times, but add a language factor and we had very little from him. Fingers crossed for Monday :-/

Title: Re: No more skin writing
Post by Joan on 01/29/11 at 16:21:41

There is a "kit" called SinusRinse that can be bought at Walgreens and other pharmacies/discount stores. It comes with packets of saline (with buffer) to mix in the squeeze bottle with warm water. I find it's really helpful, especially since the antihistamines combined with the dryness in the air are so harsh this time of year. The allergist told me that regular saline rinses help to normalize the mucosa in the nasal passages and that normalizes the secretions. Hope that helps.

Xyzal is a newer version of Zyrtec. A 5 mg. tab of Xyzal is equivalent to a 10 mg. tab of Zyrtec. I believe it has fewer side effects and works better than Zyrtec, but some people can't tell the difference. Zyrtec's patent ran out, so the company put out an "improved" version that is changed enough to warrant a new patent. You can try them both and see what you think.

Title: Re: No more skin writing
Post by Lisa on 01/29/11 at 20:54:55

Ruth,

working with doctors is frustrating at best and infuriating at it's worst. You have to remember, when you are working with doctors, the majority of them are doing their best within the depth of what they know.

Remember, it's a rare disease and few doctors really understand mast cells and mast cell disorder even if they've manage to hear about it and have seen a patient or two. This is a disease of "geeks", meaning that only those doctors who think the mast cell is cool really get it! Freak patients need Geek doctors! 8-)This is one of my sayings and I've seen it to be true! The more freak your case is, the bigger the Geek you need because these are the ones who delve into the disease out of the sheer passion for it and they are who begin to understand it and find answers for you.

Ruth, if your son is really going through a lot, then you need to consider taking him to an authority in masto. There are several across the country and we can help you find one who can help you.

Lisa

Title: Re: No more skin writing
Post by ruth on 01/29/11 at 23:13:39

Thanks Lisa, we're working on it. Sometimes I think it's in my head, especially when docotrs treat you like that's the case. then I read more about it, and think more about his patterns and just my gut instincts bout his health and I'm determined to keep looking for answers. We live in Singapore at the moment, so tracking down the specialists is not simple, Ramona poointed me in the direction of a couple, then I spoke again to my family doctor and had a really encouraging response from her. She has identified a professor of dermatology, and we will finally get to see him tomorrow, but I'm not sure how much expereience he really has with this. So I'm excited to get to see him, but quite prepared to need to keep looknig for another specialist. I ama waiting a reply from a contact given to me by a board member from tmsforacure. She has a specialist here, so if I hear back from her that will give me another option if I need it. I am hoping this dermatologist will work out, but after all I've read lately if he doesn't think this is worth looking into, I won't see that as a negative diagnosis, just need to keep looking for the geeky doctor who gets it. In the meantime I think we have learnt enough that I can go back to my family doctor and at least look into trying out some medication regimes and see what that does, she is quite supportive and now thinking along the mastocytosis line, so I think I can work with her in the short term while I find the right specialist. Even if that means waiting until july when we are back in Australia where I have the recommendations there to follow up. I would just like to pursue local options for now if I can. I will let you know how we get on tomorrow, thanks for the encouragement.

Ruth

Title: Re: No more skin writing
Post by Jaxx on 02/17/11 at 01:49:43

I use that saline kit twice a day. Two things happened with the result of regular use of the kit. Less dry nose, less bleeding from my nose, and less cracked skin around my nose. And second, I have fewer sinus infections. I think this might be because I'm able to get the mucus out of my sinus passages, and so it doesn't linger getting infected. I have to be so careful with infections. I seem to have no immunity.

Title: Re: No more skin writing
Post by mikev on 02/17/11 at 04:03:43

Jaxx:
When I was having sinus trouble. I tried regular salt and watered it down but was still to strong because of my skin sensitivity, but had great luck doing it with epsom salt. A lot cheaper than kit.
Mike V