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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Medicines that have helped you http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1294200610 Message started by Riverwn on 01/04/11 at 16:10:10

Title: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:10:10 (Archived from deborahw - original forum) deborahw It took me a while to find what meds really did the job with controlling my IA (Idiopathic Anaphylaxis) symptoms, but once I did, my life dramatically improved! Here is what I take: 7:00am 300 mg Zantac 180 mg Allegra 4:00pm 300 mg Zantac 10 mg Zyrtec As needed: 10 mg Singulaire (controls itchiness!) In the morning if I begin triggering heavily, I can take a Zyrtec. In the afternoon/evening, I can take an extra Allegra. I try to avoid taking extra meds if I can, though. For Emergency: 10 mg Hydroxyzine If Hydroxyzine doesn't work, I am probably going into fullblown anaphylaxis. So, at that point I would have to do an epi pen (never had to use one, knock on wood!) __________________ Feel well! Deborah Our forum is moving soon! Visit our new mast cell forum and apply for membership today: mastcelldisorders.wallack.us 13 September 2008 09:40 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:11:18 (Archived from sharon-nc - original forum) sharon-nc My Medications: Every day without fail I take the following: Klonopin .5 X 3 (for Neuro Symptoms, tremors, Restless legs) Toprol 25 mg (I have Marfan's syndrome this one’s for Marfan’s) Clarinex 5 mg Estrodial 1mg (hormone replacement) Zantac 75 mg X 2 (sometimes take up to 4 in a day awesome for hives) Celexa 20 mg (keeps me from going insane from the symptoms) These are medications that I keep on hand at all times, to add on in the event of, well something special, or if I need more antihistamine coverage - unfortunately when I am saying something special here, I am not talking about a formal wear occasion (sorry, needed a moment of silliness). Axert - for migraines Phenergan - treats nausea, great old fashioned antihistamine, a good one for before bed Benedryl - never leave home without it Hydroxizine - better than benedryl, but makes me to sleepy so can't take it if I am going to need to think Zyrtec or Zyzal - pretty much the same - Zyzal is prescription Zyrtec is over the counter - both claim not to make you drowsy - both make me drowsy - I think Zyzal bothers me less, but both are good 24 hour antihistamine coverage and can be taken with Clarinex (Clarinex is same active drug as Claritin) Epi pen - keep one with me at all times Lidocaine gel - over the counter - for burning from peripheral neuropathy Benedryl gel - for itching Advil - for pain Cetaphil cream - good for itching, mix with nasalcrom (over the counter nose spray for an excellent itch cream - seriously) Tums - lots of tums it has calcium something my body needs anyway Albuteral Inhaler – for airway compromise I always carry an albuteral inhaler, epi pen and 2 bendryl with me no matter where I am going. Those items are always in my purse, along with my insurance card, my medications list, a “preferred ER treatment” protocol from my Doctor, and my medic alert card that lists my Doc’s and emergency contacts. I also wear either the medic alert dog tag style necklace or sport bracelet – my style of medic alert wear is purely a fashion choice - didn't make those choices based on any technical or medical reasons. The medications list seems ever changing for me. I suspect that over the next couple of months there will be more changes as I am going through a fairly unstable phase. Sharon in NC __________________ Sharon in NC 24 September 2008 05:07 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:12:25 (Archived from sharon-nc - original forum) sharon-nc Oh, and I guess I could have posted this under medications, but as my blood pressure tends to be quite low, and I can't get off the Toprol due to Marfan's issues - a most unpleasant situation here - Toprol even at the low dose I am taking, can lower blood pressure, but I am requiring it right now due to irregular heart rythyms and tachacardia related to Marfans - I got the two for one in the rare disease world. I eat a high sodium diet, and drink lots of water and gatorade to try to keep my blood pressure at a reasonable level. I'll likely write more about this when I do some writing about foods and triggers, but I thought the high sodium thing might need to be included here. Sharon in NC __________________ Sharon in NC 24 September 2008 05:15 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:13:31 (Archived from bridgetmcgraw - original forum) bridgetmcgraw my (typical) day: wake up: 200ml gastrocrom a few hours later: 200ml gastrocrom (depending on whether I eat or not I wait 4 hours between doses since 4 hours is around how long it takes for contents to move out of the stomach) a few hours later 200ml of, you guessed it, gastrocrom bedtime: 3mg klonopin, 200ml gastrocrom, 1mg ketotifen -------------------------------- So I'm undermedicating, I know. I think I am doing it because I know the risk of tachyphylaxis with my meds, and I don't want to throw everything at the masto at once in fear that it will all start losing efficacy at the same time...this way I have things to fall back on. In addition I take 10,000u of D3 2x a week and am trying to find a good calcium supplement. It looks like I am going to have to add B12 to this too now. When needed I take Zantac (which I really should be taking daily, I know) and am going to start taking Remaron to ween me off of the Klonopin. I'm also going to be starting an asprin trial to see if I can get more energy. 25 September 2008 03:40 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:14:28 (Archived from sharon-nc - original forum) sharon-nc Bridget, Who really knows if you are undermedicating or not? I have been down to just Clarinex, Zantac 75mg, Toprol (for Marfan's), and Klonopin .5 mg at my healthiest. That was all I took for a couple of years during a really healthy phase. I'd sure love to get back to that, rid myself of the "old lady" pill box. I am so happy to see you here! Sharon __________________ Sharon in NC 25 September 2008 06:23 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:15:37 (Archived from terry-wi - original forum) terry-wi SHARON, INTERESTING TO KNOW YOUR TAKING TOPROL, I TAKE IT TOO... ARE YOUR DOCTOR CONSTANTLY TRYING TO TELL YOU IT WILL BLUNT THE RESPONCE OF YOUR EPI PEN IF YOU HAVE A REACTION? I HAVE HEARD IT FROM FOUR DIFFRENT DOC'S AND IT IS REALLY STARING TO SCARE ME. I ALSO KNOW WHEN THEY DID HAVE ME OFF OF IT FOR AWHILE I FEEL ABSOLUTLY HORRIBLE. MY TACHYCARDIA AND BP SYMPTOMS FROM THE MASTO AFFECT MY DAILY LIVING SO BAD I FEEL FAINT ALL THE TIME WITHOUT IT. I TAKE 12.5 MG AT BEDTIME.ANYONE ELSE ON TOPROL XL. 01 October 2008 09:34 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:17:11 (Archived from sharon-nc - original forum) sharon-nc Terry, Toprol - and all beta blockers, as I understand this, are not good partners with any of our masto meds. My Doc's tell me that toprol, will lessen the effectiveness of my epi pen. I have been on a beta blocker of some type since I was 16 due to Marfan's Syndrome - most Marfan's patients will be on a beta blocker most of their life - the short version of that story is that beta blockers are the reason that Marfan's patients can now expect to live a normal life span, instead of to around age 30 as was the life span at my original diagnosis. So going off beta blockers for any extended period for me is not an option. I have been masto since I was 33 and have been taking masto meds with some type of beta blocker since that time. Its not the ideal circumstance, but there really isn't another option for me. I am getting good results from Epi, it might be better without the beta blocker, but in my situation, I can't take the chance to find out. I do know that their are times that I can use a children's epi and get the response that I need. So how badly is my epi situation being effected by the beta blocker - honestly we don't know. I have to run out for a Doc appointment, I'll write more later. Welcome aboard, Sharon __________________ Sharon in NC 01 October 2008 11:26 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:18:17 (Archived from terry-wi - original forum) terry-wi Sharon, This is solely my opinon...but I really feel as though the beta blocker keeps me from having full anapholaxis, It seems to keep my blood pressure from falling and my heart from racing when I have an event.It makes my daily living alot more tolorable. I have not had full anapholaxis since 2000. However I do have reactions to foods and meds. the typical reaction I have is flushing of the skin and a feeling of pressure in my head, and feeling very hot,always followed shortly by cramping and diarrhea. After this occurs I am very weak and need to lay down. At times it is followed by a migrane.Any type of ketchup will evoke this responce in 30 seconds or less.Also wine or any alcohol. The last real anapholaxis I had included and grand mall seizure and cardiac arrest.I would have been afraid to administer epi with that reaction because when rescue got to my house I had a heart rate of 180 bpm. Epi raises your heartrate by quite a bit I believe it would of killed me at that point.I was in the ambulance when my heart stopped. epi had not been administered.I was glad this time... that no one had prescribed it for me because I would have done what they said and had someone give me the shot. Im not an expert at any rate but my cardiologist would not argue this with me.He thinks the dose is low enough it won't block the epi.I have been told to tell med staff I am on a beta blocker if I go to the emergency room ...as they can give a drug to get around the epi. Maybe just maybe this beta blocker thing is another thing they can't explaine. Like how Gastrocrom works when it has such a short stay in the body. I can't explaine why it works and I don't know if it is safe I just know it helps me.Like I said my dose is only 12.5 mg once a day at bedtime. Anyone else have something to share on the beta blocker issue? Anything by way of a negative? I really would like to have something substancial to help me make up my mind wheather I should discontinue it. any help is very much appreciated . Hugs, Terry 01 October 2008 01:33 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:19:27 (Archived from sharon-nc - original forum) sharon-nc Terry, Since the beta blocker does lower your heart rate - it does mine - you make an important point. I tried a couple of years ago to go off the beta blocker for just a short few days - I was sicker than my usual sick. My heart rate was totally out of control and my blood pressure was all over the place. The general rule of thumb with Doc's is that beta blockers and Epi doesn't make for a good mix - as beta blockers lessen the effects of the epi. But, like I mentioned above I can often get all the relief I need from a shock with a children's epi. Beta blockers don't block the epi, the only lessen its effects, but still most of the time I am using a children's epi - so for me I'm not sure how much less of an effect I'm getting and I am taking twice the amount as you are - still a very low dose. You could consider a calcium channel blocker, they do most of the things that a beta blocker will do with out interfering with the effects of our other meds. I'd be reluctant to try that though, if you are getting good results from the beta blocker. Another thing to consider is this, in masto land, if it is working for you, it may be just the thing to keep doing. Most often, I think I'd rather wrestle wild beasts of any sort than to try a new medication. All the best to you, Sharon __________________ Sharon in NC 01 October 2008 04:06 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:20:32 (Archived from deborahw - original forum) deborahw Something that I would like to add is that it would be very helpful for you to always carry in your wallet an ER protocol instruction letter (from your doctor on his/her letterhead) that instructs the ER what your medical conditions are and what they should consider when treating you. I carry one from my doc, Dr. Cem Akin, and it is prominently displayed in a window in my wallet with "medical alert" written on it in bold letters so that someone would know to read it. Also, the medic alert bracelets are really a good safeguard as well. I wear one 24/7. __________________ Feel well! Deborah Our forum is moving soon! Visit our new mast cell forum and apply for membership today: mastcelldisorders.wallack.us 01 October 2008 05:56 PM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:21:48 (Archived from terry-wi - original forum) terry-wi Thanks for your support Sharon,and your right on the money about new meds. I have a panic attack everytime it crosses my mind. That is something doctors will never understand. Once you swallow that pill and lose consciousness you can't take it back. Once again thank you for your kind words and understanding. Terry 02 October 2008 08:46 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:22:51 (Archived from terry-wi - original forum) terry-wi Thanks Deborah, I have one also but I used the one I found on line.( I believe on the masto society page) Including all my Doc's phone and fax numbers. If I am taken to the ER awake they are not treating me unless they contact Dr. Butterfield first.If I'm not awake my family and friends all know the rules. After working in ER for 4 years I have a good understanding how they operate and most of them are very accomidating to an informed pt. Your suggestion is very very helpful and very important to everyone with Masto. It has been my experience, that none of the doctors with the excepion of one,in my area have ever even heard the word mastocytosis much less treated it. They really a need a game plan for them to follow, they will beg you for one.It can be the diffrence between life and death. Thanks for the good info. Terry 02 October 2008 09:26 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:24:03 (Archived from deborahw - original forum) deborahw My pleasure Terry. I have found that sometimes the ER docs (and paramedics) actually don't want to believe that the patient knows what he is talking about. One year I went into anaphylaxis in Disney World. We ha dto call an ambulance, and the paramedics were telling me that I was fine and just needed to go to sleep! Uugh! I don't have breathing issues usually when I am in anaphylaxis, and the paramedics didn't believe what was wrong with me. Of course, this was before I knew I had a mast cell disease, but I knew that something very dangerous was happening to me. Luckily for me, my brother's girlfriend (who was a brillian internal medicine doc from Rush Hospital in Chicago) was with me and she told the paramedics that they were wrong, that I was in serious trouble and needed to go to the hospital. It was actually due to her that I discovered I had a mast cell disease! After I was all better, she told me that what she observed made her think of a few rare diseases and she set me up with a doctor at Rush Hospital, which got the ball rolling on me figuring out what I had. I was quite lucky she was there, otherwise I might still be one of the misdiagnosed! __________________ Feel well! Deborah Our forum is moving soon! Visit our new mast cell forum and apply for membership today: mastcelldisorders.wallack.us 02 October 2008 09:58 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:25:19 (Archived from terry-wi - original forum) terry-wi Great to be traveling with med staff hay? My brother in law is studing at Rush. He is in the Nurse Anestesia program Its a grate school. I travel with him and my sister who is an RN. Sure helps if there is excitement along the way. 06 October 2008 10:04 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:26:24 (Archived from blessedbfo - original forum) blessedbfo Hi, New here and not sure how to email directly and this is a location specific question for Deborah.  Could you share your Rush doc contacts.  I was dx'd recently by a Rush immunologist and am pending surgery and not sure which hospital in our area is best or what docs are best to line up in case of and I am strongly considering a trip to Dr. Akin as well so if you can tell me best way to communicate about Chicago area with you I would be so much appreciative--understatement ;-)  TIA, Carol 13 October 2008 12:28 AM

Title: Re: Medicines that have helped you Post by Riverwn on 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! __________________ Feel well! Deborah Our forum is moving soon! Visit our new mast cell forum and apply for membership today: mastcelldisorders.wallack.us 14 October 2008 10:58 PM

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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. __________________ Sharon in NC 30 October 2008 10:56 AM

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:36:10 (Archived from juliegee - original forum) juliegee tutor - member 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

Title: Re: Medicines that have helped you Post by Riverwn on 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? __________________ Feel well! Deborah Our forum is moving soon! Visit our new mast cell forum and apply for membership today: mastcelldisorders.wallack.us 05 November 2008 10:56 PM

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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! __________________ 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 02:28 PM

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 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

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:45:41 (Archived from sandralee- original forum) sandralee Until I see the masto specialist, I am taking: Xyzall 5 mg, 1x day Zantac 150 mg, 2x day The Xyzall works great for me, not so much itching. I don't notice any side effects whatsoever. The Zantac is helping too. In the end, I realized that I wasn't reacting to the Zantac. It works just fine for me and I no longer feel full all the time. I still have some burning, but I'm not sure if it's in the stomach or intestines or in the connective tissue. It seems to be getting better. I tried half of the lowest dose of an Atarax and it didn't work well for me. My head felt very strange. The next day I woke up with a red face. It's really dehydrating for me. I've read that you have to get use to it, but I'm so dehydrated already. I don't think any dehydrating medication will ever work for me. Sandra Lee 27 December 2008 09:02 AM

Title: Re: Medicines that have helped you Post by Riverwn on 01/04/11 at 16:47:34 (Archived from nznancy - original forum) nznancy guiding light - member Fish oil changes the composition of a substance stored in mast cells, an oily chemical called arachodonic acid. Mast cells make prostaglandin D2 out of the arachidonic acid they store. With fish oil as one of the sources for oil in the diet, the arachidonic acid is changed so that less prostaglandin D2 can be produced. That is one explanation for the anti-inflammatory effect of fish oil, or Omega 3 oil. I've taken it for years, and am sure it has relieved joint inflammation (I also for the last 5 years am taking glucosamine for joint health.) Incidentally, be sure to inform your doctor of your dose of fish oil. At higher doses, in some people, fish oil prolongs bleeding. Keep taking it unless you have noticed unusual bleeding or bruising, in which case cut back down to one 1200mg cap a day. Xyzall is levoceterizine, a 2nd generation form of Zyrec. It should be very effective and I'm glad to know it is helpful to you. Of interest, levocetirizine is a metabolite of Atarax. When you swallow Atarax, you get the parent drug which is an excellent H1 antihistamine, then 8 or so hours later you get what the body turns it into, which is an even better H1 antihistamine. So give up on the Atarax and enjoy the benefit of the levocetirizine. Nancy 27 December 2008 05:10 PM

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