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Re: Helping my son live with the disease!

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He is on high dose

Prednisone and has gained a lot of weight. The side effect that has

been the most difficult to treat is back pain and pain in his legs and

constant cramps in his toes. He describes the leg pain as feeling as

though there was a tourniquet around his calf. His Neurologist is

stymied. Have any of you experienced this problem? Any suggestions on

this problem would be appreciated.

I am "living" with this disease too!

Hi Shirley, I am so sorry that you had to find this group, even for your son-- this is a medical challenge that no one should have to go thru.

With NS the muscles can become easily fatigued, and because of the systemic inflammation-- they become easily dehydrated. The prednisone will help take some of the inflammation down, but as you state- the side effect is the weight gain.

My MD's were all amazed that I still had the extreme back and spine pain- they "knew" that the pred would knock that out. Wrong..

Prednisone leaches the minerals out of body, specifically the calcium and magnesium. If your son does not have the hypercalcemia or hypercaluria (high blood or urine calcium) then he may find it very helpful to take a calcium supplement. It must have magnesium with it-- as we can't assimilate calcium without magnesium.

Calcium is the body's natural muscle relaxant, as is magnesium. I have also found that with the lymph pain (that may be the "strangulation" effect he's getting in his legs) responds well to MSM Powder. This is a natural mineral that should be in our food and soil--- but we engineered it out-- so we are all deficient in this important nutrient.

Dehydration, as I said, also plays a huge part in our pain levels. Decaf teas, water and 100% juices seem to help. Stay away from those that have the high fructose corn syrup-- he doesn't need the added sugar from that.

I have also found that if my blood sugar is high (even high normal) that my peripheral neuropathy as well as the small nerve fibre neuropathy goes nuts. But if I cut out the additives, the perservatives, and the sweets that I can get my blood sugar in the low normal, and my pain levels go do significantly.

In our ARCHIVES and LINKS (scroll down, the site address is at the bottom of each email) we have a tremendous amount of information on all these subjects.

I always recommend that our members check out FSR--FOUNDATION FOR SARCOIDOSIS RESEARCH at www.stopsarcoidosis.org and order the brochure-- Sarcoidosis and the body. It is wonderful, and if you order several copies, you can take it to the MD's with you.

Another excellant site is www.arthritis.org/arthritistoday and you will be able to read up on the different meds and such that can really help control inflammatory auto-immune diseases.

The challenge with sarc is that all the MD's want to do is to treat it with prednisone, and then when you've finally been weaned off the pred, the sarc comes back multi-system and you need to be on some other form of immunosupressant.

Other choices include Plaquenil, Methotrexate, Imuran, Arava, Humira, Enbrel, Remicade or Cell-cept.

Your son may need an anti-depressant to get his seratonin and norephineprine levels in check so that he doesn't have the pain and can get some rest.

The fatigue is one of the greatest issues with this disease, and learning to pace yourself as you go thru each day is a huge lesson that no one teaches anyone. We are all trying to get thru each day, with work, relationships and life-- so having to slow down and listen to your body is a hard one.

I'd recommend the book, BEYOND CHAOS, ONE MANS JOURNEY ALONGSIDE HIS CHRONICALLY ILL WIFE- for you-- and then share it with him.

Shirley, we all understand how hard it is for our "care-givers". I know we have a link to a care-givers support group- and you are totally welcome here- asking questions, venting, and sharing the journey from your perspective. I'll try to find it and send it out in another post.

Thank you- truly for being there for your son. It's not easy on anyone,

Tracie

NS Co-owner/moderator

************************************** See what's free at http://www.aol.com.

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Shirley,

Ask the neurologist about steriod myeopathy(sp?) I have that in my

thigh muscles on prednisone and it causes me a lot of pain. I am on

only 10 mg a day right now (we are changing to Imuran) and I still have

pain.

Hope this helps.

Terri G.

>

> My son was diagnosed with Neurosarcoidosis June 06.He is on high dose

> Prednisone and has gained a lot of weight. The side effect that has

> been the most difficult to treat is back pain and pain in his legs and

> constant cramps in his toes. He describes the leg pain as feeling as

> though there was a tourniquet around his calf. His Neurologist is

> stymied. Have any of you experienced this problem? Any suggestions on

> this problem would be appreciated.

> I am " living " with this disease too!

>

> Thank you,

> Shirley

>

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Shirley, I have back pain that feels like a tourniquet as well as pain in my legs. I've been on Prednisone for weeks, and it's helped. Ask your Dr. about Methotraxate & Neutontin, there is also Remicade. I lost 30lbs, most people gain with Prednisone. You have to have your son diet, it's all to easy to gain weight, and loosing the weight will lessen or remove his pain. It's not easy, but you have to fight this disease every way you can, I'm sure you know that already. my best to both of you, Rick "palmer.shirley" wrote: My son was diagnosed with Neurosarcoidosis June 06.He is on high dose Prednisone and has gained a lot of weight. The side effect that has been the most difficult to treat is back pain and pain in his legs and constant cramps in his toes. He describes the leg pain as feeling as though there was a tourniquet around his calf. His Neurologist is stymied. Have any of you experienced this problem? Any suggestions on this problem would be appreciated. I am "living" with this disease too!Thank you,Shirley

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Rick Don't let that weight loss at the beginning fool you. I lost weight at first also & then the sugar cravings & brown sugar binges began and I packed on 50 lbs. I quit the extra steroids they gave me after the Cytoxan treatment because they were only for nausea. I gained 50 lbs does that look like I have nausea? LOL I have lost 32 lbs of it since I quit the pills & started leaving the bags of sugar at my daughters. I didn't bake oatmeal raisin cookies last year like I did the winter before. The part D plan I chose didn't cover one of the prescriptions and they want $700 for 3 pills that had me jumping pants sizes in 4-6 weeks. Too rich for my blood even shopping at thrift stores! grannylunatic@...

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Hi , Thanks for the advise. I'm diabetic and watching my numbers closely as well as carb intake. I have 2 pies, a crumb cake and brownies sitting infront of me and I won't touch them. It's very hard because the family brings in all the things I can't eat. As long as my will power holds up (which it better because of my diabetes) I think my weight will stay down. I feel a lot better with this weight off besides my cloths fitting better. My worst pains are in my back and my knees hurt some time. I'm going to beat this damm thing, it's all about a positive frame of mind. Thanks again for your post. Have a great weekend! Rick wrote: Rick Don't let that weight loss at the beginning fool you. I lost weight at first also & then the sugar cravings & brown sugar binges began and I packed on 50 lbs. I quit the extra steroids they gave me after the Cytoxan treatment because they were only for nausea. I gained 50 lbs does that look like I have nausea? LOL I have lost 32 lbs of it since I quit the pills & started leaving the bags of sugar at my daughters. I didn't bake oatmeal raisin cookies last year like I did the winter before. The part D plan I chose didn't cover one of the

prescriptions and they want $700 for 3 pills that had me jumping pants sizes in 4-6 weeks. Too rich for my blood even shopping at thrift stores! grannylunatic (AT) yahoo (DOT) com Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

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OOPS! Rick I didn't know you were diabetic. I can't have more than one Lil Debbie in the house but I'm not diabetic YET. I've been on Pred for about 3 years or so and so far it's only messing with my bones. You must have some terrific will power. My ex was diabetic & he drank 4 Mountain Dews a day plus beer. He didn't have any will power!grannylunatic@...

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Hi , It's very hard having will power when my wife brings home Yankee Doodles or Twizzlers. I have little choice...either get the will power or face the consequences. When the first symptoms of my neurosarcoidosis appeared it diagnosed as related to my diabetes, they sent me home from the hospital and told me to watch my sugar and take laxatives. My double vision was not from diabetes, finally the second hospital got it right. I could go for a cold Beer...but with the meds I'm on...it's no way. Hope you and your family have a nice 4th. regards, Rick wrote: OOPS! Rick I didn't know you were diabetic. I can't have more than one Lil Debbie in the house but I'm not diabetic YET. I've been on Pred for about 3 years or so and so far it's only messing with my bones. You must have some terrific will power. My ex was diabetic & he drank 4 Mountain Dews a day plus beer. He didn't have any will power!grannylunatic (AT) yahoo (DOT) com Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us.

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Take laxatives? I think they were the ones full of ____ ! That's right up there with "It's Ugly" when they were telling me my spinal MRI results! Where is Ben Casey or Dr Kildare when you need them? Or Marcus Welby to make a house call? Now it's all Mercedes & golf courses to them.grannylunatic@...

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, you are so funny. I'm so glad when you post cuz you always make me smile. hugs S. wrote: Take laxatives? I think they were the ones full of ____ ! That's right up there with "It's Ugly" when they were telling me my spinal MRI results! Where is Ben Casey or Dr Kildare when you need them? Or Marcus Welby to make a house call? Now it's all

Mercedes & golf courses to them.grannylunatic (AT) yahoo (DOT) com Get the Yahoo! toolbar and be alerted to new email wherever you're surfing.

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