Mast Cell Disorders Forum - Medicines that have helped you

Riverwn

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Re: Medicines that have helped you
Reply #15 - 01/04/11 at 16:27:37

(Archived from deborahw - original forum)
deborahw

Hi Carol and welcome!

I am happy to share info with you regarding my experience with Rush Hospital (although I STRONGLY recommend that you head right up to Dr. Akin and not waste time with anyone else who won't have half the knowledge that he does). You are also welcome to email me anytime at deborah@wallack.us

While I was sent on the right path at Rush, I can't say that I had a good experience there. I saw a GI names Dr. Brown (can't recall his first name). I was very nervous to go to the appointment (a trigger to set off my symptoms, although I didn't know it), and the long amount of waiting in the waiting room didn't help. I waited in the waiting room a long time and then was put in an exam room (a HOT exam room -- very dangerous trigger for me) for one hour! Yes, I really said one hour! Of course, by the time he came in I had a deep flush and rash all over because the heat and stress had triggered up all my symptoms. He wasn't compassionate at all, and was pretty dumb (in my opinion) to say that I probably had masto and yet not be concerned that I was having a masto attack right before his eyes. By the time I left and went back to the hotel, I nearly ended up in the Northwestern Hospital ER that night because I had a good ole anaphylactic attack (although I still didn't recognize it as such).

I didn't really get better until I met a support info person for masto who told me to go to Dr. Akin at Univ of Michigan. Once I did that, my life improved 100%! Happy story with a happy result!
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14 October 2008 10:58 PM

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Riverwn

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Re: Medicines that have helped you
Reply #16 - 01/04/11 at 16:28:47

(Archived from blessedbfo - original forum)
blessedbfo

Deborah,
Thanks for the Rush heads up and I have experienced similar with some docs but was hopeful that you had a better time with a better doc..heat is also a number one trigger for me..keep me cold and I can stay functional longer when being hit with multiple triggers...I have emailed Akin as I was told by scheduling that that is the way to do it...waiting to hear back if he will see me...wrote a long email cause not sure what was needed to see him...concerned about the long drive there and back as I don't travel and haven't in 14 years but if there is a chance to get confirmation and direction from an expert it is something I will risk as I do not carry epi...silly me when it was first prescribed with no diagnosis given or attached to it, I figured I would never really be able to tell when I was crossing the line and really needed it vs just having an anaphalaxis to a medication and then would make it to hospital as usual not realizing I was capable of triggering to ambients-think the initial doctor would have elaborated-anyway tossed epi in my med cabinet and went on with my life albeit triggering, didn't know what that meant back then tho...guess that was denial post my last er admit for anaphalactoid to antibiotics...live and learn...I really appreciate the Akin recommendation. Thanks, Carol

16 October 2008 03:21 PM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Medicines that have helped you Reply #17 - 01/04/11 at 16:29:58 (Archived from eener - original forum) eener Is anyone else taking prednizone? __________________ Renee 25 October 2008 09:56 PM
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Riverwn

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Re: Medicines that have helped you
Reply #18 - 01/04/11 at 16:31:10

(Archived from jillg - original forum)
jillg

Hi,

I am UNUSUALLY sensitive to any kind of medication. With me, a very little goes a long way. So, believe it or not, here is what I take every day:

-1 Loratadine (cheap, Cheap, CHEAP at Sam's Club!)

- (2) 100 mg ampules a day of Gastrocrom (WHY oh why can't it be Diet Coke compatable, wouldn't that be Nirvana?)

And my secret weapons:

-2 Omega-3 vitamins, one at breakfast, one at night.
-Yoga
-LOTS of prayers to heaven about all that troubles me.
- Regular doses of fun activities and hobbies. I watercolor paint when I feel really sick, and try not to focus on the STUFF.

That's it!

I am also an asthmatic, but that's pretty good, just bad in spring and fall. I have the Epi-pens if I shock out.

Biggest Trigger: stress, fatigue, and over-exertion.
29 October 2008 08:52 PM

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Riverwn

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Re: Medicines that have helped you
Reply #19 - 01/04/11 at 16:32:29

(Archived from sharon-nc - original forum)
sharon-nc

Jill,
I am very sensitive to medications. We often find that the children's doses of most things are best for me. I have never done well on Gastrocrom, but they always start me out on the adult dose - even though all my "add on" or "extra" meds are children's sized doses. This is curious and is making me interested in one more try at Gastrocrom - in a very low dose. Got to look into that one.
Yoga - yes, I swear by it. It helps my pain, my fatigue, my blues about my pain and fatigue - everything. I also enjoy weight lifting at the gym. I am not using any real heavy weights - not trying to be a champion body builder here, just keeping those muscles stretched out good, well used, and trying to prevent some old lady muscles (I fear arm flab).
I am by nature a creative, so anything that I can do to keep my creative energy going is helpful to my health. I love to paint, listen to music, play music, build stuff. Recently I took up knitting, its something I can do in bed on "those" days.
Also lots of prayer, and if I feel that I have hit God at a particularly busy time, I will write a letter and put it in my desk drawer. The idea there is that what ever it is now belongs to God, I put it in writing to God, I can't worry over it anymore.
My Doc has me on Omega 3 now and on Caltrate D. I have forgotten what the Omega 3 is for, but I am taking it. Renee, if I remember why I am taking the Omega 3 - I'll post. I don't take anything that the Doc doesn't have a good reason for - so I am sure that he had a good argument on that one, just can't recall it now. Something about I don't eat fish - but brain fog is hitting on that one, all I recall is I'm not eating fish and the Doc got that he wasn't going to talk me into eating fish.
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30 October 2008 10:56 AM

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Riverwn

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Re: Medicines that have helped you
Reply #20 - 01/04/11 at 16:33:40

(Archived from jillg - original forum)
jillg

I take the omega three as it is suspected to be an anti-inflammatory. There is no conclusive studies done at this time. However, it is really being looked into by cardiologists as it may reduce the inflammation behind coronary artery disease. Anyway, it can help lower your cholestorol. I would check with your doctor to make sure it is o.k. first. You have to watch out with it though if you are going to have a surgery anytime soon.

I personally feel a lot better when I take it. I take one in the morning and one at night with my meals.
03 November 2008 11:28 AM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Medicines that have helped you Reply #21 - 01/04/11 at 16:35:00 (Archived from jillg - original forum) jillg Debbie, I think it might be helpful if you post a list of what should be included on an emergency medication card. I also had "treat as anaphylaxis" put on my medical alert bracelet. Jill 03 November 2008 11:30 AM
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Re: Medicines that have helped you
Reply #22 - 01/04/11 at 16:36:10

(Archived from juliegee - original forum)
juliegee
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It's so helpful seeing everyone's med regimen. Here's mine:

AM(with food): 150mg ranitidine, 10mg zyrtec, 10mg singulair, 50mg doxycycline (for rosecea related to MCAS), culturelle (probiotic to fight effects of the antibiotic), 250mcg B-12, 400mcg folic acid (Dr. Castells says I'm deficientin both)

Afternoon: 2 tums/2-3 doses miralax

PM: 150mg ranitidine, 25mg hydroxizine, 81mg aspirin, 12.5mg phenergan

Epi-pen and atrovent via nebulizer as needed
05 November 2008 04:07 PM

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Re: Medicines that have helped you
Reply #23 - 01/04/11 at 16:37:45

(Archived from deborahw - original forum)
deborahw

Julie,

DO you mind sharing info regarding your rosacea related to MCAS. I have rosacea too (and MCAS/MCAD/IA/all the same thing)! It is so distressing to me, because until my late 20s, I had the most perfect facial skin -- like out of a magazine. I am typically very pale and never even had to wear makeup, although I wore eye makeup and lipstick for fun. Then my skin on my face started to change. I got what I refer to as "itchy bumps", textured skin sometimes and sometimes not, and postules. The itchy bumps always return in the same spot, and they can look like hives. Now, they will appear under my chin and down my neck sometimes. The dermatologist claims that they are rosacea and I take oracea (doxycyline without the antibiotic) for it. I have always felt certain that these are somehow related to my mast cell disease due to the spots being so similar to hives and being so itchy. No one seems to agree with me, though. Have you been able to get more info on this and a form of treatment?
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05 November 2008 10:56 PM

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Riverwn

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Re: Medicines that have helped you
Reply #24 - 01/04/11 at 16:38:50

(Archived from juliegee - original forum)
juliegee

Hi Deborah,

I was going to copy and paste some studies here, but instead just google rosecea and mast cells yourself. Tons of stuff out there. I've never discussed the rosecea with Dr. Castells and my dermatologist is so unfamiliar with mast cell issues that no doctor has made the connection for me.

Think about rosecea: flushing, talengectias (sp?), itchy bumps. How can it not be related????

I just take 50mg of doxycycline daily and metro gel and wash with cetaphil. With this combo, I'm pretty well controlled. My issues are also on my chin, jaw, and neck. I also get hives there too- often hard to tell the difference.

Is your rosecea responding well to the oracea? I used that for a while with great results, but UHC didn't like the oracea, hence the doxy.

Tell me what you think after you look at some of the studies. Quite a few say rosecea manifests with the presence of too many mast cells. Hello????

Julie

06 November 2008 01:47 PM

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Riverwn

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Re: Medicines that have helped you
Reply #25 - 01/04/11 at 16:40:01

(Archived from deborahw - original forum)
deborahw

I will take a look! What does UHC stand for? Is it a hospital? Is these something I should know about Oracea that would indicate it could have negative effects on me in the future? I actually tried the Doxy first, but reacted to it, so no Doxy for me.

Thanks!
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06 November 2008 02:28 PM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Medicines that have helped you Reply #26 - 01/04/11 at 16:41:07 (Archived from juliegee - original forum) juliegee United Health Care, my medical insurer. I actually think oracea would be the preferred med. It's just more expensive. Take Care- Julie 06 November 2008 06:25 PM
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Medicines that have helped you Reply #27 - 01/04/11 at 16:42:09 (Archived from deborahw - original forum) deborahw guru - founder Got it! Thanks! __________________ Feel well! Deborah Our forum is moving soon! Visit our new mast cell forum and apply for membership today: mastcelldisorders.wallack.us 06 November 2008 09:23 PM
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Medicines that have helped you Reply #28 - 01/04/11 at 16:43:21 (Archived from bufam70 - original forum) bufam70 How much omega 3 do you take? I know this may sound silly but could it say "fish oil" on the lable? I would like to try it and see what it does. I figure it can't hurt and it may do something for my high cholesterol. 09 December 2008 09:47 PM
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Riverwn

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Re: Medicines that have helped you
Reply #29 - 01/04/11 at 16:44:28

(Archived from jillg - original forum)
jillg

Hi Bufam70,

Yes, that's it, fish oil! I take the Nature Made kind (you can get them at CVS). Really, any of the main brands are fine. Just be sure that it says that they have been purified. Some fish oils contain traces of mercury, so get the purified kind, most are already.

I take one 1200 mg in the morning with breakfast, and one at night for dinner. My brother just had a stint put in his heart for cholesterol, and his cardiologist put him on it too.

Let me know how it works for you, o.k.? It seems to help me. Really curious as to if it helps other masto people.
11 December 2008 11:29 PM

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