New Sarcoidosis Diagnosis

Thank you for your response. This is a brand new diagnosis (3 days) I am not currently on any meds except for T3 for pain. I am waiting to see my new doctor who is apparently a specialist in sarcoidosis. I am hoping she will get my symptoms under control.

Thanks,

Charlene

Hi Charlene,

That's awesome that she's a specialist in sarcoidosis. You should be in good hands then. 🙂

Best of luck,

Deb

Hi S,

I'm so sorry to hear about your struggles with this disease and appreciate the information you have shared.

I have been sick for quite a long time but thought I was just working to much.

If you ever need a ear to listen please let me know. I will let you know how things go once I meet the new doctor

Cheers,

Thank you for your reply. I wouldnt wish this on anyone but it eases my mind to know there is other people out there living with this terrible disease.

Are you saying that you have been on the steroids since last June? I understand they have terrible side affects?

I hope you go into remission soon....or is that just a wishful thought with the symptoms we have?

Hi Irene

I suffer from extreme fatigue. Is this normal? It's difficult for me to bring under control as I work shifts and can never get into a proper night time routine. That's in addition to the coughing, hoarseness, never feeling rested and constantly feeling flu like symptoms.

Hence why I am off sick at the moment. I just crashed and burned and 6 weeks I am not really any further forward, well a little better which is a positive.

Have you taken steroids long term and did they work? I have only had short courses but haven't had much success.

Any info would be greatly appreciated.

Thanks

S xx

Hi Char,

Overall I was on prednisone for 9-10 years in the past 18 years. I gained so much weight, up to 100lbs one time but thankfully I lost it after getting off and much hard work. Prednisone gave me diabetes II, hypertension and insomnia as well. I had heartburn as well. I ended up in several medications because of these side effects.

I fight fatigue something awful. This is normal with sarcoid, I've learned. I used to get out of breathe with simple activities. Now that my lungs are in remission, I don't get breathless as easily. I would feel like I had an elephant in my chest.

I get sick easily and have always caught chest colds just by looking at someone sick. I didn't before sarcoid.

The majority of people do go into remission after around 3 years. A lot of people even sooner and a good bit of patients don't need any type of therapy. There are a small amount of patients (like me) that fight it for long term, have multi-organ involvement and require higher level of treatments. These are newer statistic that I've just read.

I started in my lungs with all the symptoms you have mentioned, I'd had problems for a good while before they found it. Since, the sarcoid moved to my bones. This week, I was diagnosed with hypothalamic sarcoidosis and neurosarcoidosis. It is so frustrating to know it wasn't done when it hit my bones.

I've continued to have blurry vision, also, but it's gotten much worse for me.

Your symptoms are pretty much normal and I would try not to worry as you should react to the treatments and hopefully, be able to go inactive in your lungs.

I've been on prednisone, methotrexate, plaquenil, humira and remicade infusions. I'm currently in methotrexate, plaquenil and the remicade.

I'd make sure your pulmonary specialist stays on top of your lungs with chest x-rays on a regular basis to make sure the treatments are working properly.

Hope all the other (awesome) responses, and my response, has helped some. Like the others said, please know you're not alone and we are here for you! There is also a wonderful support group that's for women only on Facebook that I found. I love it, everyone is so helpful and so so supportive. It's called Sarcoidosis Women.

Take care,

-Deb

Hi.   Yes, I've been on steroids since last June, but thankfully, these have been SLOWLY reducing since then.  I did have a flare up about 3 months ago and had to go back on a high dose for one week which has been reducing since then.  The side effects differ from person to person - some get none, others can get a lot.  Unfortunately it's trial and error and the docs can't predict it before hand.

You never know we may be some of the lucky ones who only get it once???

Hi,   I was initially told be my specialist (who retired the same month I saw him and hasn't been replaced by another specialist!) that it's best to be on steroids for a year to get rid of the sarcoid.   I started on a high dose which has gradually reduced (went up for one week due to a flare up and then started reducing again).

I have got the same symptoms as you and find that sleeping for an hour during the day eases the fatigue and tiredness.  I have a fan by me which helps when I get a hottie (flu symptom) - drives my partner nuts as one minute the heating goes on, then off as the fan goes on.   Pain isn't it.

This just makes me feel useles as I don't seem to have the body strength or stamina that I had before.  I hope it comes back IF this sarcoid goes???

Hope yours doesn't last too long.  Wish you well.

Irene.x

Hi Irene,

Thanks I appreciate hearing some positives and I'm glad to hear your doing well. I hope my health heads in the right path soon as it's been a very long time since I've felt well.

Take care

Thanks for the reply Polly,

I'm so sorry to hear about your struggles with this terrible disease. I hope things turn in the right direction for you soon.

I totally understand about people thinking your fine because everything looks fine on the outside. I have been unwell for quite sometime and alot of people thought it was in my head or I was being lazy! At least now we know and I can move forward.

Let me know if you ever need someone to chat with.

Cheers,

Hi Polly, I also have pulmonary sarcodosis and would love to talk with you about it...I have been very sick for 12 year's but have only had the sarcodosis diagnosis for about 2 year's. ...I'm wondering if you are also on ambrisentan ??