Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Steroids anyone? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1391576106 Message started by Aggie48 on 02/04/14 at 16:55:06

Title: Steroids anyone?
Post by Aggie48 on 02/04/14 at 16:55:06

Hello everyone -
I need some opinions. I am in a huge flare right now, which for the first time in my life includes horrific hives - my body is covered with them and my lips and face are constantly swelling up. I thought I was getting better, but may have had a touch of the stomach bug last night and today I'm all hived up again, both top and bottom lip are swollen and bottom jaw is killing me, which means face will be swollen in the morning. My internist wants me to take prednisone, but I've been reluctant up to this point, but after today, I am really considering it. I know steroids are bad for you, but if it would help me get out of this flare, I'd take them.
So - what is your opinion of steroids - friend or foe? :o

Title: Re: Steroids anyone?
Post by Joan on 02/04/14 at 19:03:45

If I were you, I'd take the steroids. A short course of them shouldn't
Have a long term effect. The swelling and hives are likely a lot more dangerous .

Title: Re: Steroids anyone?
Post by kesasur on 02/05/14 at 00:46:37

I second Joan's suggestion:
take the steroids. This is the time for such a medication!

Kelley

Title: Re: Steroids anyone?
Post by sarahkay1111 on 02/05/14 at 04:36:51

Aggie--I agree too. I just took prednisone for 4 days to decrease a flare. I can take even 20mg, and it will help settle things down. Good luck! Sarah

Title: Re: Steroids anyone?
Post by KatFromMD on 02/05/14 at 05:41:31

I'll add my agreement to the chorus...in your condition, a short course of steroids is definitely appropriate and isn't likely to do any harm.

Title: Re: Steroids anyone?
Post by Anaphylaxing on 02/05/14 at 21:50:22

So sorry about this!

Have you maxed out your antihistamines and are you taking them regularly?

Title: Re: Steroids anyone?
Post by Aggie48 on 02/07/14 at 10:54:09

What is the maximum amount a person can take? I take the following:
1- 10 mg Zyrtec in the morning
1 - 25 mg Vistaril at 4:30 p.m.
1 - 150 mg Zantac - at noon

I started the Prednisone 4 days ago and my hives have gotten much worse. I'm not going to take any more Prednisone. I am so frustrated, I really thought the Pred. would help. I am beyond frustrated. I've never experienced anything like this and the quickest I can get in to see my Mast cell guy is February 20th. This has been going on since November. I've decided to try the elimination diet. Today I've eaten oatmeal, white rice with hamburger, saltine crackers and rice crispies. I normally put Rice Dream in my oatmeal and cereal, but today I used Lactose free milk. It tastes awful - I am going to use only rice dream from now on - even though it contains sunflower oil - do you think it's okay? Thank you all so much for responding. This board is a blessing from heaven! :)

Title: Re: Steroids anyone?
Post by Anaphylaxing on 02/07/14 at 18:44:17

Many of us are or were on higher doses of H1 and H2 blocking antihistamines than that. You need to consult your doctor though, but even your GP might be willing to give that a try. There are also mast cell stabilizers which some people add.

An elimination diet is a good idea. A strict diet and cutting all chemical products from my life drastically reduced my symptoms and made me able to sort out triggers.

If you're not doing well sometimes multiple meds get started at once, but it can get confusing telling whether the meds or med additives or part of the problem. If you're feeling well then you can change one thing at a time.

It takes awhile they say you need to get ahead of the histamine (and other mediator) cascade and histamine triggers more histamines and on and on. So it takes awhile to get stable. Try to limit additional sources of stress, sleep well, eat simply and get fresh air to try to help your body settle.

let us know what happens. Good luck

Title: Re: Steroids anyone?
Post by KatFromMD on 02/08/14 at 04:16:47

Wow, so sorry the prednisone isn't helping. I wonder if you're reacting to a filler in the pill?

An elimination diet is an essential part of getting your symptoms under control. I've had problems with Rice Dream, I think because of the sunflower oil. Don't know what to tell you on milk-type drinks. I haven't found any that I could tolerate...Lactase least of all.

I get a good portion of my protein from egg whites (I buy the pasteurized cartons of them). I also find I tolerate frozen green peas. Another thing to try if gluten isn't a problem is fresh pasta. It has more protein because it is made with eggs, and it has little else in it. You can find it in the refrigerated section of the grocery store. I also recommend baking yourself some plain cookies/blondies (no spices, just sugar/butter/flower/eggs/maybe vanilla). I amazingly can tolerate chocolate, so I keep brownies on hand at all times, but I can't eat store bought ones due to all of the odd things, particularly oils, the put in them.

Good luck, and just be patient. It takes a LONG time to figure out what will work.

Title: Re: Steroids anyone?
Post by brigitte on 02/08/14 at 09:52:11

Just reading this thread and was interested in Kats post about having issues with oils in foods. I have finally narrowed down ALL oils to be a trigger for me, both topically and in foods. Is this common trigger for people?

Title: Re: Steroids anyone?
Post by Aggie48 on 02/08/14 at 14:53:15

Thank you all for your help! I am going to try to make the blondies - that sounds like something that I might be able to eat. I ate turkey tonight and my scalp is itching like crazy. Turkey used to be one of my "go to" foods - I hope it's not going to be another one I have to add to the naughty list.

I'm going to try to take a Zyrtec and Zantac at bedtime to see if that helps. Weird thing about Zantac is it gives me a sour stomach, but if it helps with the hives, I will manage! ::)

Title: Re: Steroids anyone?
Post by larken on 03/12/14 at 07:23:37

Hi,
So sorry to hear that you haven't had any relief. I had a similar reaction and I eventually discovered that salicylates, gluten and dairy were causing it. The way I found out was by starting the Failsafe Diet, plus gluten and dairy free. It is the strictest elimination diet you can try. I felt soooo much better just a day after going on it.

Information here:
http://fedup.com.au/factsheets/support-factsheets/how-to-start-failsafe-eating

Wishing you best of luck in finding the culprit!
Larken