The Sarcoidosis Support Community

A free community focused on Sarcoidosis - its effects, and treatments. Led by Martine with management support from Keith, Deb and Denise.

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Fundamentals

Click here for an index of discussions.

List of Specialist's.

Events

ESSEX MEETUP - 28th November 09

November 28, 2009 from 3pm to 5pm – Basildon Essex
London Meet-up (SILA)

December 3, 2009 from 7pm to 9pm – King's College Hospital
Norfolk Meet-up of Sarkie Friends

December 5, 2009 from 11:30am to 1:30pm – Reading Rooms
Sarky Curry Night!

December 14, 2009 from 7pm to 11pm – Bombay Lounge,Peatmoor Swindon

Latest Activity

Alison added a discussion

Catch 22

I have been taking high doses of prednisolone for over a year now to control neurosarcoid. I had a DEXA scan to assess the impact of the steroids on my bone density and no suprise my bones are thinning. So next step was to start calcium supplement...

55 minutes ago

Monty added a discussion

Stiff fingers and painful calfs/legs

Hi My fingers keep going into spasm and going stiff, also my musle in the lower back of my legs keeps knotting up and then I get painful calfs with lumps. It takes a while to get over byt then back to normal until it happens again - does anyone e...

1 hour ago

Adrienne Jean sanders replied to Adrienne Jean sanders's discussion 'help'

oh marietta thank you so much. I do try to avoid the stress, but only successful now and again. can you tell me what sort of nutritian you are using. at the moment my eating habits are non exsistant. i have lost weight just from the stress of it a...

2 hours ago

marietta brown replied to Adrienne Jean sanders's discussion 'help'

Hi Adrienne -you're going through a bad time right now but things really do get easier to cope with after the initial shock has worn off and you begin to realise that sarc is far more common than you think and loads of people all over the place ar...

2 hours ago

ian replied to ian's discussion 'advice please'

hi james thanks for the reply i am on 150mg azathioprine but am finding i have an upset stomach in the evening just been the gp's an have been told to take an extra ameprizol in the evening to see if it settles down. will post again in a few da...

2 hours ago

liz williamson updated their profile

3 hours ago

Adrienne Jean sanders replied to Adrienne Jean sanders's discussion 'help'

thank you Marrietta for your words. i do take heart in no medication. I like many found out i had it after a dry troublesome cough for a few years. i suffer mostly from back pain, although it's just like i've been bending over working too long and...

6 hours ago

P Busch added a discussion

Does anyone get itching on face and head..

My face feels itchy mostly below mouth,chin and bottom of face...it drives me crazy sometimes.

7 hours ago

P Busch replied to Areatha's discussion 'My Sarc Dr. Want me to see a Mero Dr.'

Hello, I think you mean a neuro Dr....neurologist, yes I have nerve problems...had the tests, and she said I have neuropothy in hands and feet, arms and legs...I guess the optic neuritis is part of it too...I do get a burning of my tongue, but can...

7 hours ago

Sanjay left a comment for Lesly Sanders

10 hours ago

Sherm Sperstad replied to Sherm Sperstad's discussion 'The roller coaster ride of prednisone'

Martine, you are absolutely correct on your opinion of prednisone. It is not a user friendly drug! I am,however, a little luckier than you so far in that I have been able to tolerate a 10mg dose of prednisone fairly well ( it could be my larger bo...

13 hours ago

Sherm Sperstad replied to Sherm Sperstad's discussion 'The roller coaster ride of prednisone'

Andrew, First of all I appreciate your comment. I had been on 10mg of prednisone for some months when my doctor indicated ,from chest xray results, that significant progress had been made. It was at that time that she suggested that I reduce 1mg e...

14 hours ago

Martine Caitlan replied to Sherm Sperstad's discussion 'The roller coaster ride of prednisone'

Hi Sherm I have just started to be weened off the aweful drug. I started on 40mg last Nov, was reduced to 20mg by February, then by 15mg from May till two month ago, I then had to take 15mg one day then 10mg the next for a month, now on 10mg unti...

15 hours ago

marietta brown replied to Adrienne Jean sanders's discussion 'help'

Hey your news sounds really positive so take heart from that! Personally I rejoiced when I found I wasn't being prescribed prednisone or any other drug because sometimes the drugs they use to help you cope with the symptoms of sarcoidosis can cau...

15 hours ago

Andrew Ferguson replied to Sherm Sperstad's discussion 'The roller coaster ride of prednisone'

Sherm, I don't have personal experience, but I have read that if one can get down to 10 mg/day of prednisone there is not much to worry about, and certain 5 mg/day is unlikely to do damage. Weaning off slowly, once one gets to the lower doses (ab...

yesterday

James O'Brien replied to ian's discussion 'advice please'

Very interested you posted this as i have had the same queries. I'll tell you what i've found. On my house insurance it states that if your illness affects you to the point you can no longer do your current job and you are medically retired then y...

yesterday

James O'Brien replied to Adrienne Jean sanders's discussion 'help'

I fully sypathise with you Adrienne. This disease is very traumatic and there is so much that each of us do not know. I was diagnosed only 9 months ago and am 33 yrs old. I have a young son and i look at him and hope that i'll be playing football ...

yesterday

James O'Brien replied to James O'Brien's discussion 'Consultant Vs Patient'

Well i do agree that the post by Deedee was indeed very interesting and i agree with most of the points that i could understand!!:). Iona Leung (hello), i believe you made a very good point about how evrybody seems to think and comment that we are...

yesterday

Adrienne Jean sanders replied to Adrienne Jean sanders's discussion 'help'

thank you so much all of you. I don't know how long i've had it, nor how bad. I know my consultant said it was more in the top of my lungs, but hasn't given me any medication. she wants to see me in may next year, and tells me theres no indication...

yesterday

Adrienne Jean sanders replied to Adrienne Jean sanders's discussion 'just diagnosed.' in the group Notes for Newcomers

Hi jacky, Thank you so much for your replies. My husband tells me i'm going to be okay, and I feel he is right. I still get panic attacks, and like you I want to sleep alot, but i believe thats the stress. My consultant is happy not to see me for ...

yesterday

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Welcome to the Sarcoidosis Network

This network is for patients, carers, practitioners and others to discuss Sarcoidosis. Everyone is invited to join and contribute. The aim is to provide a positive place where people can swap ideas and stories about Sarcoidosis, its consequences and treatment.

November's costs are sponsored by Andrew Ferguson. Thank you so much!

If you'd be interested in sponsoring a month's £45 ($70) it costs, please message Martine. The money enables us to use google adwords to tell people with Sarcoidosis that there is a community here for them - a place they can get (and give) support.

Anyone entering the site must read the disclaimer, which is either at http://www.sila.org.uk/disclaimer.html or in the disclaimer group.