tgrayston
EiR Newbie
Posts:2
Karma: 1

prednisolone and mcs

#1 2 years, 1 month ago
Hi everyone
My wife (Kylie) has mcs (on top of some serious food intolerances - she's only eating about 10 basic foods at present). Firstly, great website - I've found some great info on here that's really given us some hope!

On to my question: Our GP prescribed prednisolone to see if it took away the mcs symptoms (the usual brain fog etc) as a diagnostic measure, the theory being that if the prednisolone works, the sensitivities must be allery-based.

The prednisolone did just this for my wife, though she gets various side effects (muscle cramps, anxiety etc) which make it not worth taking except in 'emergencies'.

Just wondering if anyone else has tried prednisolone (or any other steroid-based drug used to treat allergies). I haven't been able to find anything on the internet relating prednisolone with mcs.

By the way, we've ordered an icanbreathe mask and looking forward to trying it (much better option than taking drugs!!). Kylie has been stuck in the house for a couple months now and pretty much limited to the bedroom for the last 2-3 weeks.

thanks
-Thomas
Maff
Administrator
Posts:689
Karma: 11

Re:prednisolone and mcs

#2 2 years, 1 month ago
Hi Thomas,

Welcome to the forums, I'm so glad to hear you and your wife have found some of the information on the site helpful.

Thank you for posting here about Kylie's experiences with prednisolone. It does not necessarily surprise me that it helped but your GPs view on the reasons for this are very simplistic and outdated. MCS is thought to be primarily a neurological disorder with immune involvement at some level. A relatively new branch of medicine called psychoneuroimmunology (PNI) has shown and continues to show that the immune, nervous and endocrine systems work as a greater whole with constant intercommunication. Steroids have powerful effects on many physiological functions and these feed back to the areas of the brain (e.g. the hypothalamus) that seem to be most dysfunctional in MCS.

There is one article we have on the site that links MCS to mast cells (that release histamine during allergic reactions) but the author still maintains that the neurological dysfunction is the primary cause of MCS symptoms - The role of the Brain and Mast Cells in MCS

On a personal note I credit a different steroid (DHEA) for \"curing\" my MCS (no reaction in 6 years). DHEA is known to regulate both nervous and immune function - suppressing oversensitivity of both.

I'm glad you have ordered the I Can Breathe mask. They allowed me to go out and about wherever I wanted when I was confined to my living room and bedroom because of MCS. I hope they work as well as that for your wife.

All the best to youu both. Kylie is very lucky to have such an understanding husband. You wouldn't believe the number of partners who don't stand by the person they supposedly love because they can't come to terms with the MCS. So great job - we need more people like you Thomas!<br /><br />Post edited by: Maff, at: 2010/04/18 15:32
If you are going through hell, keep going - Winston Churchill
Airy
EiR Senior
Posts:66
Karma: 4

Re:prednisolone and mcs

#3 2 years, 1 month ago
Hi,

I'd be very cautious about using any steroids, unless there is an emergency (even then, I'd explore other treatments first). I don't think it's a very good diagnostic tool for allergies since it's suppose to take down inflammation, whether or not it's an allergic reaction.

I now have permanent eye damage from steroids (I had perfect vision before this). It was the first medication given to me by the allergist. You are right about only using it in case of emergency.

I have been at the point where I can only eat a few foods, along with other friends who have MCS. There are many reasons for this and it's important to find out the reason why. I thought I had food allergies, but when I took a CDSA test, it showed that I had zero good bacteria in my stomach. It was no wonder that I was having trouble digesting food. This was from a course of antibiotics I had taken from over a year prior to this.

I have two friends that definitely test positive for multiple food allergies. Both are doing LDA shots. One is doing great after the 4th treatment. The other just started. It isn't helping with the chemicals as much, but she's doing better with foods.

My friend who just started and myself did a course of NAET treatments. These were a complete waste of time for us and we spent several thousands of dollars on it. My friend actually lost more foods while doing the treatments, so be cautious about miracle cures.

It's really good that your wife is confining herself to safe places and that she's not alone. I'd work on making your home MCS safe. As your wife's immune system calms down and you get more information through legitimate lab tests, she will begin to heal. She may even be able to venture out for short trips, with planed recovery time afterwards.

Here's a wonderful website about surviving with multiple food allergies (the \&quot;family history\&quot; section has a lot about recovering):

How to Survive with Multiple Food Allergies and Eventually Thrive Again

We are currently doing some work on our house and have been reading a fantastic book. It has case studies and goes over safe materials.

Prescription for a Healthy House

Good luck and hang in there. It does get better!

Airy<br /><br />Post edited by: Airy, at: 2010/04/22 18:38
Airy
EiR Senior
Posts:66
Karma: 4

Re:prednisolone and mcs

#4 2 years, 1 month ago
Also, I don't know what steps you've taken to make your house safe, but make sure to change over to fragrance-free products everywhere if you haven't already. Rewash or throw out anything that's been washed with scented products, especially fabric softener.

The Canary Report is also a helpful place to get information too.

Airy

Post edited by: Airy, at: 2010/04/22 15:03<br /><br />Post edited by: Airy, at: 2010/04/22 18:40
Sarahwineglass
EiR Junior
Posts:30
Karma: 3

Re:prednisolone and mcs

#5 2 years ago
Hi Thomas,


Sorry to hear about your wife. I too have been in your wifes situation my food intolerances followed my MCS symptoms due to chemical over exposure at work. Its such a waste of life and a chronic disease.

Maff has explained how this is not an allergic response condition, and I tend to agree as in so many words does the NHS toxicologist I was referred to(offered no treatment expected me to recover over a number of years!) the term idiopathic chemical intolerance was used.

My progress in 19 month so far is to rectifiy and support as much as possible the detox pathways (ie the recovery time and the chemicals do not remain in my body for hours/days) but am still working hard on food intolerances and food digestion. A recommended nutritionist with an interest in environmental issues would be a helpful if you can afford it.I take variety of supplements but all these are tailored to an individual. The sensitivities ie the neurological damage remains the greatest challenge to correct. All this has been acheived outside of the NHS service.

Finally I wish you both well, my partner has been absolutely priceless, even though we have been unable to live together since my condition deteriorated. . .while he was understanding the children (teenagers need I say more!) weren't. ..and thats understandable. . . its such a surreal situation to be in. You will never understand how important you have been to her with this condition.

Things will improve.

PS When the masks arrive Kylie might not be able to tolerate them.Just wash them in a tiny bit of simple soap or whatever can be tolerated rinse really really well and tie them to a washing line for at least a week or so.

Best Wishes

Sarah
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