Sarcoidosis

[chriswen]

I was diagnosed with Sarcoidosis last August after many scans, lung functions tests and xrays. Started on 30mg steroids and now tapered to 12mg.

[pookie38]

Hello i was diagnosed September of 2014 I was on 20 milligrams I now no longer take it prednisone has a lot of side effects but it helps a lot glad you were able taper down at 12mg. Hopefully everything is working out for the better have you ever read about the marshall protocol its suppose to be a cure

[chriswen in reply to pookie38]

No what is marshall protocol ??

[SarCisMe in reply to chriswen]

Chriswen,

Hello, In my opinion and many other Sarc sufferer's opinions the Marshall Protocol is something to stay away from for us Sarkies. Will see if I can dig up some of the information I was sent by other people warni g me to save my money and to stay clear of it.

Hoping you are feeling as good as you can today. How long have you been diagnosed with Sarc and where is it? I was diagnosed 10 years ago and unfortunately I have the Chronic form of Sarc. Already tried 3 or 4 medications and just tapering off of steroids again for the 5th or 6th time. Having a very rough roller coaster of a ride with my Sarc and symptoms, not always easy to deal with. But luckily we have these fantastic support sites, I call them my Sarc family because thats just what they are.

Wishing you a good day with no symptoms or side effects. Best wishes and good luck in your Sarc journey.

Hugs, Angie xx

[SarCisMe in reply to pookie38]

Pookie38

There is no cure for Chronic Sarcoidosis.

Save your money. There are many medications used now depending on where your Sarc is in your body, with varying degrees of success in helping quell the inflammation. How are things going for you right now? These support groups are the best thing we have. We can learn so much from each other and we truly do understand how other people with Sarcoidosis feel, we can offer and give support, advice or just a listening ear.

I have multi system chronic Sarc and just tapering off of steroids for the 5th or 6th time. Been diagnosed with 2 biopsies, lungs and liver both positive for granulomas.

I heard of MP a few years ago and was warned off of it by other people with Sarc.

Hoping you are having a good day today, take care.

Hugs, Angie xx

[pookie38 in reply to SarCisMe]

Well im making it thanks for asking I kind of figured it was a croc right now im only taking gabapintin for my neuropathy caused by the sarcoid. I was told it can go into remission I pray that mines will my eyes are also bothering me.

[SarCisMe in reply to pookie38]

I had to stop the Pregabalin because of severe side effects. I too have Peripheral Nuromyopathy, affects my feet badly constant pins & needles/tingling with severe shooting/lightening pains through my toes. Its awful isn't it?

I also have severe dry eyes, consultant gave me 3 lots of eye meds to use. You end up with so many different medications you could run your own chemist. Well been awake all night AGAIN so going to try get at least one hours sleep, hospital appointment today.

You take care, hugs Angie xx