Little update

[mj47]

Hi all…
Just thought I'd give a little update on hubby.
He's off of the prednisone.  Yes, he experienced an increase in pain, but not intolerable.  It was mainly in his back, ankles, foot & fingers.
But, I'm happy to report that his fingers have been feeling ok and as of the last few nights, he is able to tell me that his ankles and foot are feeling ok.  So….YAY for progress!! :roll-laugh:

The one unfortunate thing about weaning off the pred is that I think it has caused a flare up of his psoriasis.  We were hoping that that wouldn't happen, but he's having more show up and it's pretty bad on his elbows.  :X 
So, he has started putting coconut oil on it & it soothes it very nicely, moisturizes his skin & smells nice to boot.  Just started about 3 nights ago.  He's also started eating it as it has been touted to have anti-fungal, anti-viral, anti-bacterial properties and to be a great immune enhancer among numerous other benefits when taken orally.  I've read accounts of people online who've had their psoriasis clear up by using coconut oil both externally & internally.   We had a jar on the shelf, so figured, why not?  Even I've taken to using it as a hand moisturizer. 
If anyone else has experience w/ coconut oil, would love to hear about it.

Yet again, thanks to all.  You're a super group of people.  I love knowing that I have my very own personal arsenal of knowledge, kindness, encouragement & sympathy literally at my fingertips. 😉 

MJ

[Parisa]

MJ,

As you said, one foot in front of the other.  Getting off of prednisone is huge!  Good to hear of the progress.

[Kim]

Wonderful progress, MJ!  If he can gut out discontinuing the Pred, the rest should be smooth sailing. 😉

Take care…..kim

[mschmidt]

MJ,

I was SO happy to read that your husband is off the prednisone!! That's just fantastic:D:D!!  I think with the absence of prednisone, which is an immune system suppressor, his body will really have a greater chance of healing.  I'm sorry he's experiencing a flare with the psoriasis.  Although I don't have psoriasis, I have read about different ways to naturally help it.  I found a link that talks about natural remedies for psoriasis:  http://www.psoriasisrx.com/Natural_Psoriasis_Treatment.asp

 I use coconut oil for a lot of things-moisturizer, cooking, as well as coconut aminos in place of soy sauce, coconut vinegar on salads, coconut milk, coconut water, and coconut butter on food or in shakes I make for breakfast every morning.  The MCFA's (medium chain fatty acids–“good fats”) are readily absorbed, digested and utilized as energy by the body, unlike long chain fatty acids which the body tends to store as fat.  I've done A LOT of reading about the benefits of coconut, and decided to use it more daily.  What's great is 2 of the primary MCFA's found in coconut milk, lauric and capric acid, are known for supporting the immune system.  It's a good source of calcium, Vitamin A, magnesium and high in Vitamin D and B12.  It is an excellent source of potassium as well, and has more than a banana. 

I'm extremely fortunate to have a mother from a 3rd World country (Nicaragua), who raised us on whole, natural foods.  I remember she would bring fresh coconuts home when we were kids, take a hammer and crack it open, and have us drink the coconut juice straight from the coconut.  She said that her Grandmother used to make her drink it daily because of all the vitamins in it, and used to make her and her siblings drink it when they felt they were getting sick.  Now, I'm by NO means advocating that it's a cure all for anything.  I just find it interesting that generations of people in other countries have used it as a staple in their diet for decades, and my mother's family, who is still in Central America, is probably the most healthy group of people I know.  My great-grandmother and great-grandfather lived to be in their late 90's, my grandparents, who just passed last year, were 96 and 94, without any major health issues, and my aunts, cousins, and relatives over there are active and healthy.  It can't be the water because it's so contaminated, that they have to boil it before they drink it!!   

OK, I'll get off my soapbox about coconut.  :roll-laugh:  I will keep your husband in my prayers, and the best of luck to him!

Maria

[lmartin]

Hi MJ,

I'm very glad to hear of your husband's progress!  🙂

Linda

[judy cash]

Maria,

What brand of coconut oil do you use? Can you use it in all cooking? I have wanted to try it but wasn't sure weither to get the oil or the kind a jar???? Any suggestions and any recipes would be great. Thanks

Judy

[judy cash]

MJ,

I am so glad that your husband is improving. How are you doing these days? I will be so glad when Spring gets here. This has been a hard Winter…… I hope you are doing good.

Love,

Judy

[mschmidt]

Hi Judy!

I've used various brands, and cook with one that is for medium heat (up to 280 degrees).  I've used Whole Foods 365 brand of organic, unrefined expeller pressed virgin coconut oil, as well as NOW Organic Coconut Oil (from the Figi islands), which is obtained from the first cold pressing of organic coconut kernels. Tropical Traditions also makes a good Coconut Oil, and I've put a link to their website because they have some GREAT recipes on there.  SO many good brands to choose from, and you can purchase at a health food store, online or grocery stores–I tend to stay away from brands that are highly commercialized, since most of them are made from copra–which is basically the dried kernel (meat) of the coconut, and is processed more.  Here's the link to the recipes: http://www.freecoconutrecipes.com/

I haven't done a lot of baking (because I've never been good at it, thank God) but, my mom is playing around with her awesome chocolate chip cookie recipe, to make it gluten free, soy free, low sugar, and made with coconut flour and gluten free flour combined.  She hasn't perfected it yet but, when she does, I certainly will pass it along.  I'm going to start experimenting more with using coconut in place of other flour, etc in baking because I'm in charge of Gluten free booths at some festivals and events in Chicago this summer for an organization. 

Maria

[Lynne G.SD]

Hi All;
     If you want really nice skin take a couple of teaspoons of coconut oil a day.After a few months you won't even recognise yourself.I am 64 and pass for 50 or so.At first I gagged on it when I ate it but you get over it in time.I do a lot of Thai and Indian cooking so the stuff is always on hand.I also use it instead of hand/face cream,just rub it in and blot off the excess.VOILA! no chemicals!

[judy cash]

 Marie and Lynne,

Thanks , I am going to give coconut oil a try. for my skin and well being. It is so strange since I got sick with RA, well even before I knew what was wrong with me, my looks have changed so much, its not easy to except sometimes, but there isn't much I can do about it. I have really aged, since I became sick. 

 Has anyone else gained weight since starting AP? I put on about 10 pounds in 5-6 months, this seemed to happen overnight. I don't like it one bit…LOL…….

Love you all,

Judy

[mschmidt]

Judy,

I thought the same thing about when I was really sick–man did it age me!  In my case though, with SD, I was ecstatic about wrinkles coming back so, I did the reverse vanity thing.  Now, I get told all the time by people who haven't seen me in years that I haven't changed or aged one bit since my 20's. Of course they're being overly kind but, I feel younger and more vibrant than ever.  A good dose of hope, sprinkled with a positive attitude will help take years off your face and body.  Laugh often and keep smiling because that helps you feel youthful, which makes you glow from the inside out. 

Yes–I gained weight since AP but, it was SO much needed for me, as I was down to a little over 100 lbs, and had severe muscle wastage.  I really don't think the AP was the only reason I gained weight, although it did seem to coincide with the start of my clindy iv's…my thyroid decided to crash, which slapped a whopping 20 lbs on my body within 8-10 weeks.:shock:  I'll take a few extra pounds ANY day, because at least I look healthier than I did before. 

And, from your picture, you look great to me!

Maria

[Lynne G.SD]

Well girls,if only you could pass a few kilos this way I would be very happy.Due to running like an idiot all day and diet restrictions I can't eat as much as I burn.I made it up to 100lb by stuffing my face with avocadoes,porc,salad swimming in olive oil and sweet potatoes but just can't get any higher.Any brilliant ideas???

[mschmidt]

Lynne,

Hmmm…I eat restrictive as well, and still put it on.  Maybe wish for hypothyroidism?

I'd gladly give you a few pounds, although they're starting to come off now that I've ramped up my workout schedule to include more running.

Maria

[mj47]

Thanks for the well wishes Linda, Judy & Maria. 
Of course as soon as I wrote the words down, his ankle started hurting again.  It's been feeling fine, then hurting, then feeling fine, etc.  I guess this is just the way it goes w/ AP.  Last night he told me that his back hurt less than it has (only the 2nd time in months that he's mentioned his back feeling better!)
So it goes.

Unfortunately, the psoriasis is coming back with a vengeance.  We are trying to control it w/ the coconut oil with the oil from some vitamins a & d added in.  It seems to keep the scaling down, but the spots are popping up all over the place.

He wanted me to tell everyone here that he thinks that being on the prednisone for several months (instead of the 3-4 weeks that his rheumy wanted) is what caused this major skin flare.  He wanted me to warn others who have PsA to be aware that staying on pred for too long can cause serious psoriasis problems once discontinued.

We're hoping things calm down so that he can begin enjoying the arthritis relief that he's having.  What do you guys think about this theory:  that the pred was suppressing his immune system while the mino was at work.  Once the pred is out of his system, his immune system is really getting to work trying to deal with the die off from the mino & it's presenting in a really bad skin flare.  Just a thought.  If that's the case (i guess even if it's not) I think some detoxing & immune enhancement are in order.

Anywho…Maria…I can't get enough of the coconut oil!  I'm using it now (eating & moisturizing with it!)  It is an amazingly good massage oil too!!!  The stuff is pretty awesome.

MJ

[mschmidt]

mj47,

I was just about to respond to you that I thought it might be a reaction to his immune system actually NOT being supressed by prednisone…you beat me to it.  It certainly is logical that coming off the prednisone would cause a flare.  I had all sorts of weird things happen when the mino and clindy started doing their job.  My bacterial load was off the charts (albeit, manifested in a different way than your husband's), and I didn't think I'd ever stop herxing.  Then, my immune system kicked in (this sounds crazy but, I could actually FEEL it working), and the herxing has subsided. 

Tell your husband we're all wishing him well, and to hang in there! 

Maria

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