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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Aspirin therapy! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1368032968 Message started by bobkeenan on 05/08/13 at 06:09:28

Title: Aspirin therapy!
Post by bobkeenan on 05/08/13 at 06:09:28

I am in the docs office now and just took half a baby aspirin. Every 40 minutes they double the dose. I know that ibuprofen is a trigger but not sure about aspirin. Evidently it has a definite effect of lowering prostaglandins..... Which I guess is good?

I will let you know what happens

Title: Re: Aspirin therapy!
Post by bobkeenan on 05/08/13 at 12:45:03

Everything went ok. Started with 1/2 baby aspirin and then doubled every 40min till I got yo 650mg. So I will now be on 650mg twice a day. She said that she thinks it will really improve my symptoms. I read an NIH abstract that it significantly lowered prostaglandin levels in 20 out of 20 patient (even though 2 of the twenty flared). But there was no mention if that then reduced symptoms. So I will repost on this in a few weeks.

Title: Re: Aspirin therapy!
Post by KatFromMD on 05/09/13 at 06:43:25

I was doubling every 3-4 days, not every 40 minutes, and I thought maybe I did it too fast and that was why I reacted!! Wow. I had very severe bruising on just two baby aspirin. Once I got up to five a day I started having trouble breathing and started tapering off. When my breathing didn't get better my doc had me stop cold turkey and put me on a steroid inhaler. It'll be interesting to see how you do on it. I think it's cool that they had you do it in the office and really pushed the stuff to see how you'd react.

It seemed to me that my symptoms did improve when I was on the higher dosage, but I wasn't there long enough to be sure. I'll definitely be keeping my fingers crossed for you!

Title: Re: Aspirin therapy!
Post by bobkeenan on 05/14/13 at 06:18:26

OK... about a week later. I am tolerating the aspirin. The first day or so I thought I notices a little heartburn. So I made sure I take the aspirin during a meal and then I do a couple of tums after the meal. Heartburn has not been an issue since. And now I am gettting a regular calcium supplement!

My symptoms do seem better. No flushing for a week which is a little rare. I also did a light workout yesterday and usually I get a little light headed but not this time. I also have dropped one ketotifin and one zyrtec from my daily regime. No bad effect....

I do have a little dry cough and slight shortness of breath which is interesting and not that normal for me.... except in the spring..... and it is spring and I did have a bad cough coming out of the hospital a few weeks ago.....

So its only a week, and I am trying to control my hope, and I am knocking on wood whenever I say this...... but there is a significant
improvement. I will report more in another week or two.

Other info: Dr. Price said that the Aspirin and Accolade work together to improve things. Also the reason for the 40min increasing dose cycle in the Dr's office, was to both check my reaction and create an insensitivity to the Aspirin.

I gotta go and knock on some wood now.

Title: Re: Aspirin therapy!
Post by KatFromMD on 05/15/13 at 05:49:02

Bob - did you drop the Ketotifen and Zyrtec all in the same week that you added the aspirin? In general, its best to try to limit yourself to one medication change at a time until you're sure you're at a steady-state with it. This way, you can be certain that whatever happens, whether it be an improvement or a reaction, it was caused by the medication that you changed. Just a tip for future reference! Glad you're still doing well. What is Accolade? I haven't heard of that before.

Title: Re: Aspirin therapy!
Post by bobkeenan on 05/15/13 at 15:57:42

wrote on 05/15/13 at 05:49:02:

I did not drop all of the dose just went from 4 to 3 pills a day for each. But you are probably right about the change one thing at a time. The accolade is Accolate (Zafirlukast). Sorry I mis-spelled it. It's a peptide leukotriene receptor antagonist.

Still doing well. Bike ride yesterday and was good!

Title: Re: Aspirin therapy!
Post by jbean on 05/16/13 at 16:09:55

I tried aspirin therapy and it didn't work for me. Made me worse so I got off it.

Title: Re: Aspirin therapy!
Post by bobkeenan on 05/22/13 at 05:14:10

Two weeks now on the aspirin. No side affects. And, knock on wood, my symptoms have improved. We went on a long train trip to see friends and attend a memorial service. Lots of opportunities to flare. There was a couple times when my ears started to feel warm like a beginning flare but nothing happened. I do have a slight dry cough and slight shortness of breath but that slowly seems to be getting better. Most of the day I do not notice it. Maybe next week I will drop one of my 4 zantac a day and see what happens. But so far aspirin seems like a good thing for me.

Title: Re: Aspirin therapy!
Post by bobkeenan on 06/08/13 at 14:07:25

About a month on the aspirin now. The cough and lack of breath issues are much less and becoming almost unnoticeable.

And..... My masto symptoms are much less. I am doing hikes and workouts that I could not do before and I am still cutting back on some of my antihistamines. So it looks like aspirin is going to be a keeper in my fight against masto. I will report again Ina month or two. ;D

Title: Re: Aspirin therapy! - 2 months
Post by bobkeenan on 07/01/13 at 10:15:31

Still no side affects from aspirin and still feeling great. I am getting close to being aerobic in work outs with no problem. I am walking around, in the sun, at 80F without getting tired.... Although not too long yet. I have cut several of my meds back. I saw an action packed movie at the theater yesterday. I used to have to take extra antihistamines to get through the loud exciting parts. No problem now. I am much more active. I have not flown in 5 years... The altitude change triggered me. So I am confident enough now that we are going to drive to the mountains above 7000 ft. That use to trigger me. If I pass that I will try an airline trip. That would be amazing if I could get that back. I will report more in about another month. BTW while I highly recommend you try this I would suggest that you do it at the docs office in a desensitizing regime starting with 1/2 baby aspirin.

Title: Re: Aspirin therapy!
Post by KatFromMD on 07/02/13 at 07:07:11

I am so unbelievably jealous of you, and at the same time so happy to hear about the success you've had!!! I hope things just keep getting better for you. :)

Title: Re: Aspirin therapy!
Post by bobkeenan on 07/05/13 at 12:47:47

Its not been a month.... only a week since my last post but I had a another milestone. I have not flown since about 5 years ago where after several flights I flushed pretty good. So its train, boat and car. I think it was the altitude change as I have alway had a problem getting enough oxygen when we drive to the high mountains. In fact a year ago we went to Mount Hood @ 6000 ft above SL. Not only did I have a problem breathing but I flushed pretty good till we got down to about 1000 ft. We went today and now I am on the aspirin and accolade (leukotriene inhibitor) and wow. Almost no breathing issues and NO Flushing. I even took a short walk on a trail that went uphill.... no breathing problems! So now I am thinking my next step is to try flying. I will let you know when I do and how that works out.

Title: Re: Aspirin therapy!
Post by bobkeenan on 07/11/13 at 07:39:16

Another update.

I tried to push it a bit. I just finish a 2.5 mile fast walk, up and down some hills, in the sun. It was nice and cool 65F. Hotter would have been a better test but I want to approach this a little at a time.

But I was breathing a little hard and sweating. In other words for about 30 min I was on the low end of being aerobic. And NO MASTO affects. A year ago I would not have even tried it as I would first get really really tired, second, have trouble getting a full breath, and third probably would have flushed and went home to pump myself full of more antihistamines.

This is like a miracle for me. I kinda hope its not a remission because I have heard that this can happen for periods of time but then the symptoms come back. If its solely due to the aspirin then I can just continue this.

So I hope some of you will or have asked about an aspirin and a luekotrine inhibitor regime. They can call Dr. Kristen Price in Portland and I know she also gets consults from Dr. Maria Kastells.

Keep in mind that my last tryptase was >200 and both the doctors were suggesting I think about some of the chemo programs...... Don't need that now! I wonder what my tryptase is today??

Note also that I think the aspirin should only be tried in a doctors office using their desensitizing procedure.

Title: Re: Aspirin therapy!
Post by bobkeenan on 07/31/13 at 15:46:47

Another update. Close to 3 months since i started this. I am getting even more active.... Which has now resulted in some hip and shoulder pain that i have to deal with. The problem is that i am overdoing stuff and at 63, after sitting around for 6 years i need to start slow with lots of stretching. I am taking half the meds that i was 3 months ago. And i have dropped the ketotefin and no longer need hydroxyzine. And not one flare up!

I have noticed two side effects that i believe are caused by the aspirin. I bleed more easily and it lasts longer before it clots but not really a problem. Also it makes my stool dense???? If i dont take some stool softener like psyllium husks i get impacted.

I am temped to have a glass of wine and see if i can tolerate that..... One step at a time.

Title: Aspirin triggered me
Post by Spartako on 08/02/13 at 00:54:30

Since I react to food high in salicylates I had the hypothesis that I may have Salicylate Sensitivity. So I tried a Aspirin Desensitization. I started with 30mg and increased by 50mg every 40 minutes until I reached a total of 500mg. I got triggered pretty fast and got itchy skin, headaches, muscle pain, fatigue, wheezing and diarrhea. Next day I started with 500mg in the morning and 500mg in the noon. After three days diarrhea improved, also headache was better. But after three weeks I couldn't take it anymore. Obvioulsy Aspirin and Salicylates trigger my Mast Cells directly and not by the anomaly in the arachidonic acid cascade which would be typical for Salicylate Sensitivity. So Desensitization did not work and leaves me no choice than exclude food high in Salicylates from my diet. I stopped Aspirin two days ago and returned to a very strict diet. I hope the symptoms lessen in the next days.

See http://www.salicylatesensitivity.com for more Infos like food lists. I also will give http://failsafediet.wordpress.com/ a try.

Title: Re: Aspirin triggered me
Post by bobkeenan on 08/09/13 at 12:45:22

Spartako wrote on 08/02/13 at 00:54:30:

Yikes.... I guess we are all a bit different on this disease.

Title: Re: Aspirin therapy!
Post by bobkeenan on 08/09/13 at 12:52:47

Another update. I was feeling so good and on 1/2 the meds..... So now i am also really active and some old problems like arthritis in neck, shoulder, and hip started acting up. Maybe was tendons or muscles. Anyhow it was limiting what i could do. So i decided to get some good physical therapy. I think i have a good PT and i am finding that now i can get aerobic. BUT.... They are having me do stretches that hurt like hell. I am fine at the PT office but a couple hours later, after the full pain of the session wears off.... And I am flaring a bit. So.... I think i can still do the PT but i better get on full meds on the days that I do it because pain trumps whatever benefit the asperin is doing.

Title: Re: Aspirin therapy!
Post by bobkeenan on 09/10/13 at 05:48:14

I am now at 4 1/2 months since I started the aspirin. I have dropped my meds in half. I was taking 4 Zyrtec, 4 Zantac, 2-4 Ketotifen, 2 Accolade, and hydroxyzine as needed (a few a week) and prednisone when needed. Now I am on 2 zyrtec, 2 zantac, 2 Accolade, 4 aspirin.... and nothing else. I have only flared once a tiny bit in 1 ear after suffering some extreme pain (another issue). I am now regularly getting aerobic (sweating and breathing hard). I am biking and hiking. I can see scary movies without flushing! Hot sunny days still bother me (make me tired) but I can take more of that than I used to. The only side affects is that I bleed more easily and clotting takes a bit longer. Also my stool gets dense and have had to take regular stool softners and eat more fruit. The next big test is an airline flight next months. If I pass that....

Its almost like the disease has mostly gone away.

I know that many of you cannot tolerate aspirin. I know I react to ibuprofen. But again.... unless you know you have a problem with aspirin... you should ask your doc about this treatment. And again I did this in the docs office starting with 1/2 a baby aspirin and doubling every 40min till I got to 365mg.

I will update this again after my flight in October.

Title: Re: Aspirin therapy!
Post by DeborahW, Founder on 09/11/13 at 14:10:19

This is so helpful to know. Thanks for sharing this info, as it is a great guide for others thinking about trying aspirin. By the way, CONGRATS!!!!

Title: Re: Aspirin therapy!
Post by bobkeenan on 11/16/13 at 10:03:08

Another update. Now 6 months into the aspirin therapy. I was able to fly without flushing. Have not been able to do that for years. So.... I can take big trips again. I have noticed some slight flushing on some afternoons and early evening. It mostly started when our rainy and colder season started. If I take a ketotifen at lunch that seems to take care of that. So i have accomplished a couple of my goals with getting active and aerobic again, going up to higher altitudes, and being able to fly. Not to mention less flushing. I am still sensitive to warm environments especially if the sun is shining on me. But i think that i am at a tad less sensitive. :)

Title: Re: Aspirin therapy!
Post by bobkeenan on 01/02/14 at 11:48:46

Feeling better like when I started the Aspiring therapy.. I have a theory that will will post in trigger section.

Title: Re: Aspirin therapy!
Post by SnowBird on 02/08/14 at 04:34:03

No one should attempt to desensitize themselves to aspirin on their own. It can cause a life threatening reaction, even if the previous reaction was mild. Most allergists will refer their patients to regional specialty center that has trained personnel that do this all the time. They monitor FEV after every dose and intervene with medications if they detect a problem. It takes about two days to do this.

Title: Re: Aspirin therapy! -14 months
Post by bobkeenan on 08/06/14 at 06:25:23

Just an update. It is 14 months since I started the Aspirin after the doctors office desensitization visit. All of the positives are still there. I can work out till I am mildly aerobic, I can watch action theater movies (used to flair), Pain is not so much a trigger, I can eat more gluten (not a lot more but some), I can fly on planes, I can go to high altitudes, I can get minor colds. All of these things would be a potential flair for me and all of that is gone. I am still sensitive to heat and sun on a hot day. Maybe I can take a bit more heat in the shade. So this is a big success for me. I bruise more easily but not much. And my cuts or scrapes take a minute or two longer to clot.

Title: Re: Aspirin therapy!
Post by Joan on 08/11/14 at 16:32:31

Wow, Bob, that's great to hear! I've had some clotting issues from taking turmeric which also has salicylates, like aspirin. If I eat greens regularly, like kale or swiss chard, I don't have the clotting problem. Maybe that would help you, too.