I have suffered from Sarcoidosis for ... - Lung Conditions C...
I have suffered from Sarcoidosis for over 20 years. Does anyone else suffer similarly and are there any alternatives to Steroids?
Hi piggywig, I have had Sarcooid since 2005, still on the steroids, they keep trying to take me off them,
Hi piggywig I was diagnosed with multisystem sarcoids in February this year.they had started me with 60mg steroids but I was not tolorateing the side effects,now 7 months down the line the consultant wants to put me on chemo tablets so they can shut down my immune system so the aggression of the sarcoid in my lungs and lymph nodes in my chest will calm the sarcoids if you like to talk more about it I'm more than happy to answer any questions you may have take care.
Thanks for the reply Summer06. I would be very interested to hear how you are getting on with the chemo tablets, as they have been suggested to me,but I'm really not sure about them. Do they have as many side effects as the steroids? How do you feel on them? What is the prognosis for this type of treatment?
I've been diagnosed with it since April last year but have obviously had it longer. I'm on steroids, down to 6mg from 40mg and on azathioprine (an immunosuppressant). Had the usual side effects with steroids, weight gain, hairy face and moon face but they are subsiding now. My bloods are tested monthly to make sure the Aza isn't affecting my liver and kidney function. I could do with a pair of new lungs but I'm not doing so bad compared to others with the disease. As for alternatives to steroids? No idea I'm afraid.
Marie x
I am wife and carer to Peter and he has had sarcoidosis for 21 years. He was on 30mg of steroid but now takes 10mg per day and cannot do without them. I don't know of any alternative but make sure your bone density is monitored as Peter also has osteoporosis. He has had copd for 2 years too but does well on the whole. There is a lot of info on sarcoidosis online but make sure you do not try and take too much on board at once and use a decent site. There is SILA which you can join for a set fee per year and that will put you in touch with others with Sarc. Also, on facebook if you use it, are one or two other sarc sites. Good luck to you. xxxxx
