Multi System Chronic Sarcoidosis

[SarCisMe]

Could you please write information you have on Sarcoidosis, and the newer treatments now being used rather than just Steroids. Thanking you. Angela Farrar

[Jessy11]

Sorry I can't personally help you but the BLF has lots of info on your condition. If you search at the top of the page you will be able to access all you want to know.

Hope this helps

Take care & be well 😀

[SarCisMe in reply to Jessy11]

Hi Jessy 11,

Thank you for your help and advice.

I will try BLF.

Best wishes, take care. xx

[sassy59]

The BLF has a good leaflet that you can ask for and I had no idea there was any newer treatment for sarcoidosis so will be looking into that myself. I am carer for hubby Pete who has had sarc for 24 years now and has steroids to help treat it still. The granulomas that sarc is all about block up the tiny veins and end up causing scarring especially on the lungs and in the airways. This leads to problems with breathing. Sarc can also affect other organs, joints and eyes but does sometimes burn itself out in time. Pete has chronic sarc and now has COPD too (bronchitis diagnosed 5 years ago). Hope that helps a little and maybe someone else will add to what I have said.

Wishing you well. xxxxx

[SarCisMe in reply to sassy59]

Hi sassy59

Thanks for responding.

Sorry to hear your husband has this sneaky disease.

The Consultants I see think I have it in several organs, Lungs, Chest Wall and Lymph Nodes being the first. Whilst on steroids the Sarc still invaded both my Spleen and my Liver. I have had both my Lungs and Liver Biopsied and Sarc diagnosed both times. I too am on Steroids which I hate being on, I suffer extreme side effects from them and I have tried Immunosuppressives like Azathioprine (Imuran), and Methotrexate (MTX), both rejected in different ways by my body. I cannot stay on the steroids forever!!!

I have a nasty chest infection at the moment that's put me in bed I feel so poorly with it, seen my doctor and am on antibiotics, hopefully by the end of the weekend I should feel much improved.

Have you heard of Remicade?

What area do you live in? West Yorkshire by any chance?

Thanks for your help and advice, I really hope you and your husband can find something else to help him.

Very best wishes

[sassy59 in reply to SarCisMe]

Hi SarCisMe, I have not heard of Remicade but Pete does ok on the steroids. He had sarc in his lymph nodes and had some removed from his neck area years ago at the Chelsea and Westminster Hospital.

I would mention that Pete is on antibiotics all the time as a preventative measure against chest infections. He alternates between Azithromycin and Doxycycline and seems to do well on both. Perhaps you could discuss this with your doctor.

We actually live in West Sussex and send you very best wishes too. Onwards and upwards. Take care. Carole xxx

[AmethystAngel]

SILA is a helpful site... They do research into Sarcoidosis.

At present I'm still on Steroids for my Sarc so unable to help much in respect of other treatments. I know there are other things out there but no idea how effective they are in treating this rare condition.

Ring BLF and ask to speak with one of their specialist nurses... They are fantastic 😊

[SarCisMe in reply to AmethystAngel]

Hi Amethystangel,

Thanks for replying.

I am a member of Sila, but entirely forgot I could go on site and ask for help, so, thank you for reminding me.

Have Sarc in my Brain, (Recently diagnosed ), it causes me all kinds of problems, memory and getting my thoughts and words mixed up, at least typing them I can reread the txt and then change whatever needs changing.

Thanks for your help.

Hope you have a better day tomorrow than you had today.

Take care, xx

[AmethystAngel in reply to SarCisMe]

Blinking heck how on earth did they diagnose the sarc in your brain?

I was diagnosed with it following a chest X-ray in June of this year but feel the problems started the beginning of last year.

Hugs,

Catherine x

[SarCisMe in reply to AmethystAngel]

I had an MRI Scan of both Brain & Spine, although I had a Brain CT Scan some years ago which showed changes consistent with Sarc and along with the symptoms I wasn't really surprised when the consultant told me.

Like you, I had my chest X-rayed and it all started from there, the Sarc journey!

Hope things go well for you on the steroids, it can be a tough time for some people taking them and getting the side effects, so I wish you an easy journey whilst you take them and with your Sarc journey.

Best wishes.