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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> This episode justs goes on and on and on http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1356190157 Message started by cutty sark on 12/22/12 at 03:29:17

Title: This episode justs goes on and on and on
Post by cutty sark on 12/22/12 at 03:29:17

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?

Title: Re: This episode justs goes on and on and on
Post by PamH on 12/22/12 at 08:53:02

Have you got a DX?
I was on ketotifen and my doc added Cromolyn Sodium. The two mast cell stabalizers did the job and really help to stablize me. I am also on allerga and zantac. Do you take any H1 or H2. These will help tremendously when you can feel the degranulation. I also use bendryl when I am triggering.

Good luck!

Title: Re: This episode justs goes on and on and on
Post by DeborahW, Founder on 12/22/12 at 12:46:09

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.

Title: Re: This episode justs goes on and on and on
Post by Joan on 12/22/12 at 19:22:22

I couldn't tell if Ketotifen and singular are the only meds you're taking or not. You might be able to address some of your other symptoms with medicines other than antihistamines, such as NSAIDS (if you can take them) or Tylenol. When I have my worst pain (8 on a 1 to 10 scale), surprisingly, Tylenol and extra antihistamines seem to help. Some people use Tramadol without ill effects.

If the Claritin doesn't help, you might need a stronger or additional H1 and H2antihistamines, as Deb suggested. Hydroxyzine is a good one to try at night, because it's one of the most effective for hives and it is mildly sedating, so it might help with sleep.

I can't remember if you've identified some or all of your mast cell triggers. If not, that could help, too. If you post some more information about where you are regarding diagnosis, doctors, and non-medication measures to feel better, we might be able to help you more.

As for "alternative" medications, Dr. Theo's formula, "NeuroProtek" is giving some people a lot of relief. It is anti-inflammatory as well as help stabilize mast cells. I use turmeric capsules to help with pain and inflammation. They seem to work really well. They do contain salicylates, though.

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/22/12 at 22:06:49

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.

Title: Re: This episode justs goes on and on and on
Post by PamH on 12/23/12 at 08:13:24

Cutty,
I know we are all different, but as far as the Cromolyn, did you give it 3-4 months to start to work. It does take several months for it to kick in. Also, many stop taking it because it makes you so sick. So if you stopped taking it for that reason, that is normal in the beginning until you get up to the 4 doses a day.
I would say Cromolyn was the hardest and best medicine I have taken. I thought I was going to die taking it because I was so sick, but I have anaphylaxis reactions to so many things, I felt I had no choice but to stick it out. However after 3 or 4 months my bone pain deminshed and now after 9 months I have no pain at all!! I was always popping some kind of pain pill, now occationally I take a tylenol for a headach. Like I said we are all different and we all can not take the same meds, but wanted to make those two points incase you stopped for one of those reasons.

Not sure if you have ever heard of epsom salts (magesium sulfate)baths. But I am absolutley amazed at how they cleans my system. I have a salicylate sensitivity, and my body does not process salicylates, they start backing up and I go into anaphylaxis. I read about the epsom salts bath and was amazed! I take one every day to help rid my body of salicylate build up, amazing! If you try it start with less than a cup in the water. The key is to only soak 20 mins. After 20 mins your body starts re-absorbing the toxins, so set a timer. This should help with the pain also. After a week you can add more. I add 2 cups, but not more than that. One time I spilled a bunch in the water and it caused diarreah, because it is also used as a laxative! Happy soaking!

Title: Re: This episode justs goes on and on and on
Post by Lisa on 12/23/12 at 15:22:17

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

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/23/12 at 19:10:04

Thankyou, Ladies!

Pam: I took the Cromolyn for around 9 months but it just didn't deliver for me. Epsom salts are a traditional way of stopping the flow of breatmilk over here, also used for lowering blood pressure. Baths are a no, no for me as I react to changes in temperature. :(

Lisa: I live about an hour north of Dundee small fishing village on the coast. Small world indeed! Thanks for that advice, it may well be that all I need is an upping of the medication. I'll pass on the emails to Dr Dawe. I was reading some of the research by the team in Spain the other night. Spain is only a couple of hours by plane from here and I have friends in Valencia and Madrid so would be no problem for me to visit a clinic there. The codeine I take is crossed with paracetemol [tylenol] and it works to a degree for me, I'll check out dipirona.
Are allegra and raniditine sedating? I work full time and am doing my doctorate at the moment so need to have my wits about me!

I'll let you all know how things go today with the consultant.

A happy Chrstmas and all the best for 2013, everyone.

Title: Re: This episode justs goes on and on and on
Post by DeborahW, Founder on 12/24/12 at 02:33:53

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.

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/24/12 at 05:39:37

Thanks, Deborah. I head up a Human Rights/Equalities NGO and my Doctorate is based on minorities and the media, both are inextricably linked and crucial given the rise in the far right in Europe at this point in time.

You are, of course, right that I should take a step back. Problem is; if those of us in the NGO sector don't keep chipping away at the authorities no one else will. But all that said, I know my body is telling me that I have to take some sort of respite - even if it is only a short one.

Anyhow, the consultant has taken that decision out of my hands today. He is of the opinion that the mast cell burden is simply too much at the moment - Tryptase dropped to >127 in the spring but was up at >140 late summer, more bloods taken today on the assumption that it has climbed much higher, these results [and other bloods] will be available in 2-3 weeks. He has prescribed the following medication in the interim and after the holidays I will have another Bone Marrow Aspirate and Biopsy [I've only had this once before and it was awful] results of which will determine if I go on to Interferon to reduce the burden.

20mg Singulair at night
20mg Atarax at night
8mg Benadryl 3 times a day
Codeine/paracetemol as and when needed.

Well enough of me. Thanks again for taking time to respond while on your holidays. All the best. :)

Title: Re: This episode justs goes on and on and on
Post by Joan on 12/24/12 at 18:28:59

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.

Title: Re: This episode justs goes on and on and on
Post by MarciaB on 12/25/12 at 01:56:18

Hi cutty,

You've gotten some great advice here. Esp the parts about when and which meds to take. I'm following their advice and finding it makes a huge difference.

I just wanted to add that I didn't see you mention your diet. I'm finding that I really can't eat my known trigger foods and expect mast cell meds to counteract these.
Avoiding gluten, dairy, corn, soy, chemicals and caffeine may help you sleep better. I was a wreck on these.

Also allergy meds that make people sleepy always make me feel more drugged than most people. If you're using these for sleep why not try sleep meds or supplements. I've found 5 htp and melatonin helpful. These are chemicals our bodies should produce but don't always.

Theanine should calm you adrenals without sedating you. Be aware tho that if you use this for too long, your mind may become sluggish.

I appreciate your desire to keep your job. I stayed with mine for two years after getting to sick to stay awake during the day.
Knowing what I know now, I would've changed my diet, found an integrative doctor and tried supplements.

Instead I followed the advice of my traditional doctors, mds, and got sicker.

I know all doctors don't think alike but mine didn't run the tests that showed my hashimoto's, hyperinsulinemia, celiac disease, etc. They didn't even realize that I had ataxia even tho I fell into walls in their offices. Geesh !

Improving my diet has made the biggest change for me but I'm very intolerant of gluten. If you're interested in what gluten can do see theglutenfile..

Tc .. Marcia

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/25/12 at 02:16:19

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. :)

Title: Re: This episode justs goes on and on and on
Post by MarciaB on 12/25/12 at 02:33:18

Merry Christmas to you. And of course best wishes with whatever you decide to do. I'm curious about the success rates of what you're going to try. I might need this too.

Sadly, "healthy diet" doesn't mean much to me anymore. Lol. I'm on the paleo / wahls diet but when it comes to healthy meats, I'm down to grass fed lamb, wild caught seafood (I just started rinsing these thoroughly to eliminate the proteins / bacteria on the surface) and "healthy" pork from whole foods. All poultry is out. Certain veggies are out. Fermented foods are limitted to my homemade coconut kefir but on it's way out because of histamines. I'l stop ... ; )

On the hives, I just figured out last month that I need to avoid chemicals in detergents. I just started changing out my old cleansers. Fwiw, my clothes already feel better.

I feel so dumb. :-[ I started getting sores on my scalp and it took me months to figure out it was a new shampoo. Lol .. Sores on my scalp was a huge clue .. Haha

Also, I don't know what to make of it yet but when I was on steroids a couple of weeks ago I stopped getting my nightly hives.
I'm going to ask my doc about using a low dose of daily steroids, cortef to see if it helps.

Title: Re: This episode justs goes on and on and on
Post by BlueSkies on 12/25/12 at 10:11:27

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

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/25/12 at 20:49:32

Hello, Marcia. I had to google paleo / wahls diet, I had never heard of it! It makes sense that returning to what our bodies are 'designed to eat' would make us [any one not just people will Mastocytosis] healthier.

I am fortunate in that living in a rural area I can access locally grown food. I can eat all root vegetables - which are also great fillers when you are restricted. Locally caught seafood is also good for me. In terms of meat I don't eat pork or lamb but can tolerate beef [local Aberdeen Angus] and free range, local, chicken. Have you tried game meat? Pheasant, venison, wild duck and so on, I have no reaction at all to these. I don't tolerate beans or pulses but can still enjoy soups by using root vegetables such as leek and potato or carrot and corriander. I can't eat the flesh of fruit but can drink fruit juice so berries [which grow everywhere here] can be taken that way. I think preservatives and 'bulkers' such as corn syrup and palm oil are to blame for a lot of ill health in the West - difficult to avoid though as they are in everything that doesn't grow in the ground, fly in the air or roam the hills. :)

I was on a short course of steriods last year for a swelling on the left side of my face which came up as a side affect of a bite which became infected. They worked a treat and also gave me a lot of energy - I think long term they can have a negative impact but that might depend on the dose. We are all different, as you know, what works for you might not work for me - so this condition goes :(

I am interested in trying Interferon because it has been proven to reduce the mast cell burden. I accept that the treatment itself can be debilitating to say the least but I feel the gains, in terms of being able to do the things I want to do in my life, far outweigh the pains. :)

For cleaning stuffs I use a brand called Ecover - not sure if it's sold outside the UK - all natural ingredients and does as good a job as the chemical based ones.

Anyway, here's to a happy and healthy new year. I won't be starting the Interferon for a couple of months but I'll keep you updated.

Title: Re: This episode justs goes on and on and on
Post by DeborahW, Founder on 12/26/12 at 02:23:29

I feel as if over the years here on the forum we have had reports of chemo being used for Masto and making the patient severely and permanently worse. Can anyone chime in on this? I could be wrong, which is why I am asking....it would be good here to have both the negative and positive stories of interferon experience. Also, is interferon chemo?

Title: Re: This episode justs goes on and on and on
Post by redbird on 12/26/12 at 04:47:06

yes yes Ms. Deb...my understanding is this med is for a treatment such as chemo
and I also have read thru my many many years that it has not helped..it is something that should be very thought out before starting..should be interesting to see replies on this one
redbird

Title: Re: This episode justs goes on and on and on
Post by Joan on 12/26/12 at 20:18:51

There is no chemo that can be considered a cure for systemic mastocytosis. Although a small percentage of people get some measure of relief from chemotherapy drugs, those drugs can have potentially life-threatening side effects and long term after effects. While some chemo drugs, like interferon, reduce the mast cell burden in some patients, not everyone responds to it, and the results have been generally temporary. I've heard of only one case in which a long term remission was achieved. Taking these drugs can result in higher risk for other cancers later, so they are usually given only for aggressive cases.

I believe it was Dr. Castells who prescribed hydroxyurea for a patient on this forum in the last year, but I believe that had to be discontinued due to side effects.

Midostaurin is still in clinical trials for aggressive SM, but the results have been very good thus far. It may be available through a clinical trial in France, Italy, or Spain, but I don't know for sure. I also don't know if they're finding long term side effects. It's a drug that works while being taken and must be taken for life.

High dose chemo or radiation in conjunction with marrow transplants are not effective for SM.

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/26/12 at 20:50:36

Thanks Joan and Redbird.

Yes I know there is no 'cure' for SM. :) Interesting comment re marrow transplants - has this been attempted, are there any papers on it?

Essentially, I am looking for 'respite' i.e. a reduction in the mast cell burden as my current levels are unmanagable at this point in time. Interferon is used widely in the UK for Hep C and so on and has good results with 'minimal' side effects for many. I have thought this through, Redbird and realise that it may or may not deliver the results I am looking for. I have complete trust in my consultant, he is well respected in his field and teaches across the country.

Title: Re: This episode justs goes on and on and on
Post by Joan on 12/27/12 at 19:47:16

My hematologist is who first told me about the BM transplants not working on masto patients. I've heard it from others, too, but haven't looked for articles online. I would imagine there are some.

I came out of an almost 3- year flare. It was rough. Changes in diet made a big difference. Then, increased amounts of and additional meds helped a lot, as well as probiotics, l-glutamine, turmeric, and other supplements. Lowering stress was the single most important change. I hope you find relief from whatever treatment you decide to try.

Title: Re: This episode justs goes on and on and on
Post by mikev on 12/28/12 at 02:15:42

Cutty:
First I have heard of almost none if any good results from cancer drugs such as Gleevec. There is a new drug on the horizon in phase 3 test called Mastinib. It being tested all over the world. My doc who is an asthma specialist has used it with good results in phase 2 testing for asthma. I brought it to his attention going 2 years ago when Dr V @ MD Anderson in Houston was involved in it's testing & had emailed DR V about the test group. But distance was too much of an issue. I tried unsuccesfully to get in my doc's testing group, but was refused because my asthma is not chronic & I would taint the results, never mind that I was a willing participant & it may have helped me. I have SM with constant skin pain & sensitivity. He now promises me that if my insurance goes along with it & he'll try his best to help, that as soon as the FDA here is the US approves it, he''ll prescribe it for me.
It's supposed to be approved by agencies around the world at about the same time. Here is the link.
http://www.ab-science.com/
Look under human medicines tab
MikeV

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 12/28/12 at 08:32:09

Thanks for this, Mike. I've had a look at the site and will search for more info as I don't see any timeline for approval in the UK.

Title: Re: This episode justs goes on and on and on
Post by mikev on 03/06/13 at 06:28:41

had my doc appt yesterday. bad news on the mastinib front. my doc who was testing it for asthma rejected it as medicine was tainted, how he found that out i don't know, so they stopped his test & AB Sciences had to remove from market. I assume they are going to rework how they are making it but this could be years. also anybody heard of a blood test that would show whether you had ckit mutation. he ordered one up for me. said bone marrow test was no longer required to find out with this new blood test
mikev

Title: Re: This episode justs goes on and on and on
Post by cutty sark on 03/07/13 at 05:16:20

Hi Mike

Oh well back to the drawing board. I've not heard of the test but I'm seeing my consultant tomorrow so I'll ask him. Comes at a good time as my daughter is just starting the diagnosis trail and is terrified about having a BMB after hearing how painful it was for me.

Title: Re: This episode justs goes on and on and on
Post by Joan on 03/07/13 at 20:01:01

The BMB may not be needed to test for mutations, but it is usually requested when tryptase levels are high and SM is suspected in order to look for clusters of mast cells and abnormally shaped mast cells.

Title: Re: This episode justs goes on and on and on
Post by brigitte on 06/07/13 at 15:45:37

Hi cutty! I'm not sure how often you visit the site, but I thought I'd take a stab at it. I've been browsing the forum today and came across this thread. The way you describe the fight or flight adrenaline feeling is exactly how I feel when I'm acting up (from who knows what). It's miserable, dibilitating and disturbing, like I'm always on the brink of explosion. Just wondering if you got your meds figured out and if anything has helped? As you tilted the thread, this episode just goes on and on. That's where I am right now. Blah!
Sorry everyone for my constant pity party on here lately. I truly don't mean it to come off that way. It's just that this is the only place I feel I can talk ( and people get me) and maybe get so advice and encouragement. For the most part I do my best to keep my qualms to myself. My family just doesn't get it, so I kinda gave up.