Not responding to the prednisone? ???

Hi Katlis

My Consultant told me that the only treatment known to keep things steady was prednisolone. Sorry to hear it is not helping you it is an illness been going around for many years but no one seems to know much about it. I hope they find something else to help you to ease your pain x

Have you been referred to a specialist?  If prednisone is not working, maybe you need a bigger dose?  Maybe there are other strategies a specialist would know about. Did you get a definitive diagnosis?  You really should not be left stranded like this.  Where do you live?

Sorry you're not finding the pred helpful Katlis. Your consultant will no doubt have other drugs like Azathioprine or Methotrexate to offer. Surely they are still going to treat you?

Hi Katlis,

I'm really sorry you have to go through all these!! I also don't respond to prednisolone. Now, I'm not sure how much sarcoidosis has spread in your case, but if you only have pulmonary symptoms, they will eventually go away on their own. Sarcoidosis is a disease that stays active for a while; after, it becomes dormant. In my case, every time it becomes active, it causes inflammation inside my lungs; after a while, I develop fibrosis in areas of inflammation. Then, sarcoidosis goes dormant, giving me and my body a break. In your case, if you really don't respond to prednisolone, they could try some other drugs (including chemo) but be prepared to potentially face more severe side effects.

In my case, nothing worked; not even chemo. So, what did I do? Well, I stopped eating unhealthy foods and meat (I eat meat very, very rarely; maybe, once in two months or so); I eat lots of vegetables, natural foods (like bread and organic butter with organic tomatoes), etc.; I get as much rest as possible (like tomorrow; it's sunday so I won't get up from my bed); I try not to panic and stress myself out when I have a problem (sarcoidosis loves stress, so it usually becomes very aggressive when we go through stressful times); I also take turmeric and boswellia for inflammation (these two herbs have been proven effective in slowing down inflammation inside the body; though they can't prevent inflammation caused by sarcoidosis, at least they keep it from spreading too fast). Also, it woudln't hurt to look for specialty advice on the Internet; you can find many opinions from doctors and scientists. It's all about finding something that works for you; try different diets and see which one benefits your body the most. For instance, while most sarcoidosis suferrers have dry cough, I expectorate and I need to take acetylcysteine (prescribed by my doctor) from time to time -- a drug that I guess no one in this forum takes. It's also important to find a good doctor who really cares about you, listens to you and believes you. Many doctors don't believe when we complain about fatigue and other symptoms. I also have breath issues, weakness, fatigue -- I don't have pain -- so I know how it feels when you complain about all these and your doctor doesn't seem to understand.

There must be a good reason for them stopping your meds. I've only ever been offered steroids but after discussion with my Dr we decided that it would be better if I didn't take them. I manage my sarcoidosis by using herbal medication when my joints are particularly bad and basically pacing myself. I do get very tired and feel shamed by my sisters energy but then she doesn't have sarcoidosis! I'm reading a couple of very interesting books writte by a couple who have battled sarcoidosis and it's incredible what they have achieved through their determination to live a better quality of life and rid them selves of the misery that sarcoidosis inflicts. I'd be asking why they have made this decision in your case and what they propose to do to manage your symptoms now.

Dont despair there is light at the end of the tunnel!

regards

Rachael

You could try Mexatrexate x