Re: Remicade and the moderators

[Guest guest]

Glad you are doing well, really. Nutrients very interesting. I am an RN, I did give chemo,so I know what does happen. I am saying research, and be very careful with children. And most doctors cannot even recognize it. The problem is you can't take it back so CAUTION.

From: <bbwtabbie (AT) yahoo (DOT) com>Subject: Re: How do we get sarc??...to TracieTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, September 22, 2008, 12:55 AM

Tracie,

I truly believe this is in the gene pool. I was adopted at birth, but met my birth mother and birth father in 2002. My birth grandmother on my mother's side had Lupus for many years and then died of ALS (is ALS an AI disease?). My birth father has adult-onset diabetes. But I truly think this comes to me from the genes in my birth mother's family. I never worked in any medical field, but I was always sick with respiratory & sinus infections, and I was a smoker up until 4 yrs ago. I worked in many different office buildings in the accounting field. It will really be interesting to find out how we contracted this nasty disease if they are ever able to figure it out.

I was dx'd with NS in Dec., 2006. I have now started Remicade infusions and we are slowly reducing the Pred...now down to 20mg per day. I have had 3 Remicade infusions, and have mostly noticed an improvement with the banding pain I had been having daily. Other than that, I think the Remicade is compensating for the drop in the Pred, because I haven't really noticed many other improvements.

Have the owners and moderators of this site ever thought of having each of us fill out a survey to compare our symptoms and backgrounds and ages contracted, etc.? I know it would be a big job. I have often read messages from different people and wondered what they were dx'd with, the age of dx, their symptoms, their current age, treatments tried and what worked and what didn't. Whenever I tell my mom about something I've read on the website, she asks how old the person is and where they have NS, where they live, etc. I guess I'm just as curious as she is.

Well, as always, thanks for the info.

Hugs,

in UT

> > From: tracie feldhaus <tiodaat2001@ yahoo.com>> Subject: Re: pain question> To: Neurosarcoidosis@ yahoogroups. com> Date: Thursday, September 18, 2008, 4:25 PM> > > Hi ,> It is so sad that a 10yo child has sarcoidosis- - and yes, this sounds like the neuropathy that goes along with it. > What kind of meds do his doctors have him on? Are you here in the States? Do you have a pediatrician that knows about sarcoidosis taking care of him? > My heart goes out to the both of you, I can't imagine the challenges that as a mom you are going through. I do hope that he has a good Rheumatologist and Neurologist to help with this. I know they treat kids with the BRM's-- Biological Response Modifiers - Enbrel, Humira and Remicade. > I think one of the biggest

challenges is

that even though this is an autoimmune disease, the immune system attacking itself- even the healthy tissues are seen as something to attack, that we have to keep in mind that since our immune systems are overactive, the immunosuppressants are bringing them back i! nto a "n ormal" stasis-- and not adopt the mindset that the immune system is going to be blown out entirely. > I do hope that you will contact Om Sharma, M.D. at USC- LA-- and get his opinion. He is great about answering emails, and can be reached at www.sarcoidosisshar ma.com. He may have you get your son's doctors to email him with their questions, but you will get a response.> Most sincerely,> Tracie> NS Co-owner/moderator> > > > pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin > pain. Thanks for any answers,>

>

[Guest guest]

Thank you -- you are right-- advising anyone, especially parents with kids with sarc is serious business-- and we don't advocate any specific treatments-- it's up to each person to research, and take what they've discovered to their Doctor and get the input from them!

Pediatric Rheumatologists would be the way to go-- along with Pediatric Immunologists. To have to live with the constant pain of arthritis, neuropathy, diabetes, starting as children-- we see how well we handle these issues as adults-- pray for the kids....

Tracie

pain question> > > My son (10 in a few weeks) may have sarcoid... still waiting on definitive dx. He has > recently developed a new type of pain. On his arm (inside part) from elbow to wrist, he > feels real pain. He thinks he has burnt himslef (he hasn't) and needed pain meds last > night just for that.> > He says, "when did I burn my arm?" There is no discoloration. Does this sound like > sarcoid pain to anyone. I hate when he develops a new symptom. Most of the sarcoid > stuff has been neurological -- dizziness, loss of balance, loss of arm strength... he does > have pains but a lot are associated with his arthritis. (or headaches) This is definitely skin > pain. Thanks for any answers,>

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