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Re: Just diagnosed withSarcoidosis...(from Joan)

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HI to All, 51 year old female,..7 weeks ago, I couldnt get in or outof bed, low grade fever, aches, pains, swollen feet, painful noduleson my shins and joints, fatique, shortness of breath, blurry painfuleyes..went to the Er, (no insurance)..took a chest x-ray, which wasabnormal. I am on prednisone and a anti-biotic for 6 months....in twelve hours my feet returned to normal, nodules have calmeddown... I am still fatiqued, short of breath, and just feel generallyunwell. Is this typical, or does one start to feel better later on??

Hi and welcome to our group, but very sorry you had to join!

You are very symptomatic for Pulmonary and Cutaneous (skin) Sarcoidosis, but fortunately, not Neurosarcoidosis. There is a huge difference. I know this is going to sound very strange, and even insensitive which I am absolutely not trying to be!, but thus far, you are one of the "lucky" ones. I will pray you never to neuro!!!

Fortunately, most with "Sarcoid" do not turn neuro, but we, in the neuro group, believe there are more un- and misdiagnosed people with neurosarc. Unfortunately, since most people who are stricken with sarcoid are stricken with pulmonary sarcoid ... which is how I first started when dx'ed in 2000. Your dr. probably told you that you will probably go into a complete remission within 18-36 months? and most likely and hopefully, you will.

Please know that you need to become very aware of this disease and those who are treating you. I believe all in our neuro group, except me, have been on prednisone most of their disease. The predisone has created additional problems for them. Buuutttt, without the Predisone, most would be worse off since it stops the disease in its tracks ... until other immunosuppressants can slow down the disease. It's a catch 22.

When I was dx'ed in 2000 with pulmonary and cutaneous sarc, my pulmonary dr. told me I would most likely go into a complete remission within 2-3 years but would always have sarcoid, just inactive sarcoid. He informed me of the pro's and con's of prednison. I opted to be sick for the next few years vs. taking long-term steroids. I will never know if the decision was good or not ... perhaps if I had taken it, I would have not turned neuro. However, I survived the repeated bouts of bronchitis, cellulitis on my legs from the open lesions, pneumonia, pleurisy, etc., etc., etc. My pulmonary sarcoid is inactive, but am left with a lot of scarring ... I had many, many tumors/lesions in my lungs.

I have had and have learned to accept that I will have cutaneous sarcoid forever ... I've had skin lesions on my shins and feet and breasts since 1989. Fortunately, for the first time since back then, my nodules are under my skin now, vs. open lesions which are much more susceptible to infections and cellulitis. Actually, now that I am thinking about it, prior to my dx., I was sent to an allergist for my lesions (my lungs were clear on x-ray back then so sarcoid was not suspect to the dr.s ... even upon biopsy, the impressio was "vasculitis due to foreign or unknown substance" ... that should have told the doc's to suspect sarcoid at that point. Anyway, the allergist put me on allergy shots every week for over a year ... didn't help. Prior to allergy shots, he did put me on prednisone for a short period ... yes, the lesions went right away. However, he took me off prednisone once they were gone and boom! ... they were back tri-fold! Be careful with the prednisone ... how many mgs have they started you on? this is important to know especially when they start weining you off them.

I hurt my back while washing my car in 2002, my immune system kicked in to "help" me heal ... but, as with all forms of sarcoid, any time our immune systems try to help us, they end up hurting us by "overkilling" the bad cells or injuries that need healing; instead of recognizing the healing is done and the immune system can relax again, it just keeps on going killing off our good cells ... yes, similar to cancer. I read on this group somewhere that sarcoid may soon be "reclassified" to a "benign" cancer.

Anyway, please!!! be very careful not to hurt ourself, but don't panic if you do ... I believe it is stress that kicks our immune system into overdrive to begin with. As you read more and more about sarcoid, you will probably read that stress is a major factor for us. Have you been under a great deal of stress lately? How long have you had your skin lesions? Were they ever biopsied? I am assuming you have not had much dr. treatment since you sadly have no insurance?

There is another group which you may prefer to join ... I believe if you do a search on NRSC or NSRC (National Sarcoidoisis Research Center), you might find that group more comfortable. Again, although you are certainly welcome to stay with this group as you will learn more about sarcoidosis, treatments, meds, etc., this group may scare you more than you need right now. We are all very sick ... yes, I know you are very sick as well ... I remember how sick I was with pulmonary sarcoid ... it was horrible.

Neurosarcoidosis comes with a different set of symptoms, issues, and meds .... most of us are on immunosuppressants which include some chemotherapys. I remember when I first joined, I was terrified of going on the meds ... however, although we in the neuro group will most likely always be on at least one or more immunosuppressants and stronger and stronger ones as our illness progresses, I am happy to be on them!

If I do not take my immunosuppressants on the 7th day (we take various meds at various time periods of the week) ... Methotrexate (MTX) is taken once a week, anyway, if I miss my dose on day 7, by day 8 or 9, my body is screaming with pain. Within an hour or so of taking it, my pain has subsided a great deal. Most of us are also on about 10 or more different meds. We have pain specialists ... which is something you may need to control your joint pain if you have it now or develop it. We are on drugs like morphine, methadone, duragesic patches, etc.

I apologize for rambling on and on about myself and the neuro group ... I just want to make sure you join the group you feel most comfortable with. We are a SUPER GREAT GROUP OF PEOPLE. You can cry, rant, rave at any time; and provide support if you are up to it. We talk about finances, doctors, where to get free or cheaper meds. Anything can be discussed almost. there is a link to what cannot be discussed on the NS yahoo site. We do our best not to offend anyone ... and if one does, one is told about it. You will probably be sent an e-mail from a group informing you about a new "cure". Please, just throw it away ... if it were a cure, we wouldn't need this group. To date, there is no cure. Because most of us are too sick to try to get science to help us and recognize there actually are many of us, funding is not sent our way for research.

I believe others will respond to your message within a few days. If you send a post, there are usually several of us on line. However, for some reason, we all seem to get really sick at the same time and are not on line. Just be patient, at least one or more of us will answer your questions or listen to your fears and dry your tears. We send virtual hugs, too ... I am sending one to you right now!!!

Love, hugs, prayers, and quick healing and remission to you dear friend,

Joan

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