Hello folks - greetings from a wet and windy Scotland.

I'm basically on here for a a good old moan [always helps!].  I've been in a critical episode for a couple of months now. I'm in constant, elevated, flight or fight mode. I can literally feel the cells degranulating - like adrenalin pumping round my body which in turn is giving me at best a nagging headache and at worst cluster migraines. Brain fog and fatigue are making it difficult for me to do my work and studies and making me irritable and emotional.

The 'turns' are becoming more frequent - can be sitting relaxed and the heat, floating and nausea appears as if from out of nowhere - making my way to the bathroom, hanging over the sink and drenching with cold water relieves this in around 10 minutes.

Bone pain is intollerable and weakness in arms is increasing - can't open jars without pain some days.

My medication doesn't seem to be even touching the sides at the moment - I'm on ketotifen and have been for around 18 months [was prescribed this when neo-clarytin stopped doing the business] but all that seems to be doing now is making me drowsy to the point that I need to take siesta every day [not helpful when working!]. Singulair is helping me get some sleep but I am now only getting around 5 hours per night instead of my usual 8 -9. Hives are also back at night with a vengeance.

Any suggestions for alternative medications?

I would think that Zantac, Allegra, Zyrtec daily would help and benedryl as an emergency med. The question is do you have a doctor to discuss this with? I used to be as sick as you, possibly worse. Once I started the first 3 that I listed, I never got super ill anymore. For example, I take the following:

Morning
150 mg zantac
180 mg Allegra

Early evening
150 mg Zantac
10 mg Zyrtec

I don't know how they are used in relation to Ketofin, but you could ask your doctor or pharmacist.

Thanks, folks.

Sorry, I should have been a bit clearer in my post yesterday!

I've been diagnosed for around 10 years via skin and BM. I've tried the cromolyn but it doesn't work for me, nor do NSAIDs. I can tolerate opiates so I take codeine for the pain [also have osteoporosis in spine and hips] but have to ration this as I work. I also did some trialing for UVA1 light treatment earlier this year - that helped during treatment but finished in August and things seem to have gone downhill since then - episodes never last as long as this.

By alternative I meant other [things so easily get lost in translation!] so thanks for the info.  The reason I asked is I have an appointment with my consultant on Monday and wanted to have some suggestions for him as to what people in other regions are using. He is excellent, by the way, Dr Dawe who works out of Ninewells Teaching Hospital in Dundee.

Hi Cutty!!!

Sorry you are feeling so bad!!!   Dundee!!! I've been there on my journeys!!!  Small world!!!

As to meds, you may not be on enough.  Dr. Castells has begun shortning the time between meds on some patients going from the 12/12 hour treatment to about every 5 hours.   She put me on 180mg allegra, 300mg ranitidine and 10mg singulair twice a day, but when I was post-op in 2010 my meds were put to a schedule of 6AM, 1PM and 7PM and this worked wonders for me.    You may need to be taking some kind of pain reliever that you are able to tolerate but codeine is questionable, however, I have heard masto doctors say that if you can tolerate it then there is no reason why not to use it.   I can't, but then I can tolerate NSAIDs.   Since you are in the UK, you may want to look into dipirona, which is a NSAID of sorts.  It's used a lot here in Brazil and I've found it to be very effective without creating any kind of issues.  And even though my doctors didn't want me taking things like Ibuprofen and the such, they never blinked at giving me dipirona post-op, which would be a time when you would normally be most reactive.    So, I think that it might be worth seeing if it's available in the UK.  

Now as to other alternatives, the highest authority you have in the UK is Dr. Clive Grattan from Norfok and Norwich University Hospital.  Dr. Grattan is an excellent doctor and knows UP very well.  I believe he is a dermatologist.   Here is his email for your doctor to contact him.  clive.grattan@nnuh.nhs.uk .   You can also ask your doctor to contact Dr. Luis Escribano in Spain.  He is a much higher authority in masto than Dr. Grattan is and here is his email too.  lescribanom@sescam.jccm.es  These doctors could probably give you some more options to deal with the pain and the reacting.  

I hope things get under control soon.  We do tend to go in phases like this.  You need to reduce your stress to a bare minimum and now at the holidays that's tricky but essencial!!   LET OTHERS DO THE COOKING AND CLEANING AND MERRY MAKING while you sit back, relax and ENJOY!!!

I hope you get better quickly!!


Merry Christmas!!

Lisa

Your last sentence is very telling to me. If you read my intro story as well as some of my "tips" in the start here section of the forum, you will see that I advise that the path to getting well is not just medicines, but also changing one's lifestyle. I was nearly done with my doctorate degree when I became the most ill and bedridden for 4 weeks. I had to completely change my whole lifestyle. Although I was not yet diagnosed at that time, I had the foresight to know that I was never going to be able to hold a traditional job as a college professor, which was my goal. Doing anything I was passionate about always triggered me into anaphylaxis. So I halted the Ph.D. and just concentrated on relaxing and getting better. It took a very long time to figure out what doctors I needed, etc. because I didn't have a forum to go to and I certainly had never heard of a mast cell. Now I am thankful that somehow I figured it all out. One of the ways I did that was because my internist (who could not figure out what was wrong with me) told me to ask myself what I wanted to be doing in 10 years and how was I going to make that happen? That prompted some soul searching which made me put aside my career and focus on my health. It worked, and now I am one of the people on this forum who feels as well as we are going to feel. I lead a normal life to an extent (I will never go mountain climbing), and I feel really well (enough) every day. The reason is that I have adjusted my lifestyle to allow lots of relaxing and as little stress as possible. (The stress reduction is the hardest part, even for me).

So, you mention that you are working in your degree an must be at the top of your game. Sadly this might be a big trigger for you and until you focus in avoiding your triggers, you may not see the result you want. It's not what you will want to hear (who would?!), but perhaps pulling back and getting to feeling better will allow you to focus more on your degree and feel well later.

I apologize for any very long paragraphs or typos. I am writing this on my iPhone while on vacation, and it is too difficult to scroll back to fix any errors.

Cutty,

  Before you consider starting something like interferon, think about consulting with the doctors Lisa mentioned and/or Dr. Akin or Dr. Castells or Dr. Jason Gotlib in the U.S.

  It could be worth a try to take a leave of absence from the NGO and see if a few months of rest would help you feel better without chemotherapy.

  There don't seem to be any H2 antihistamine in your meds list.  I don't see enough daytime H1 antihistamines.  Don't know if you have access to other choices, but most of us are able to find a second generation, non-sedating antihistamine to use during the day.

  Have you tried a low histamine diet?  Do you know if you have any food triggers?  There are definitely foods that can cause me to have much worse pain.

Thanks again ladies and a happy Christmas to you all.

I eat healthy Southern European/Middle Eastern style food - never any pre packed or processed food - and have managed to identify the majority of my food triggers so aviod these - although as you will all know one day a food might be fine the next day it is not, so like all I am always vigilant.

I'm taking these sedative types to stop the hives at night. The benadryl is three times a day - just started all these new ones yesterday so will have to give them a while to settle in.

I've tried myriad medications over the years Joan and the end result is always the same so to be honest [and from the papers I have read on the topic] I think the Interferon will give me the respite I need. We shall see.

Marcia,

My doctor told me just recently that our bodies produce less steroids during the night, from about 8pm on to very early morning hours (before we get up).    (He thought that might be why I was having more trouble with swelling during the night.)

Maybe that has something to do with the steroids helping your hives at night?

BlueSkies