sarcoidosis

sethasaurus , let's have less of the medicine is a lie and the tablets don't work kinda stuff please.

Hi There

I am very sorry to hear about your condition, I have posted previously and I can give u an idea how it may progress. I was hit very hard to begin with having extreme joint pain, faitgue, fever, lumps on neck, swollen ankles etc. Lung biopsy was positive so were bloods and x ray. That was 3 years ago and now I have never felt better.

It seems the harder you are hit that better the prognosis. A slow and lingering course of the disease seems to mean a lifelong battle with sarcoidosis.

Although I feel fine I am aware I may again get another onset of symptoms but all bodes well.

Maybe try to see if u have been inflicted rapidly or was it a slow onset of sarcoid to give u an indication of how it may progress.

Stay positive as the doctor told me what he saw on my lungs could have meant a lot more serious life threatening illnesses.

Best of Luck

HI Jaffusmaximus,

I finally registered for a boards.ie account!

Many thanks for your encouraging reply and I am delighted you are feeling better than ever now. You seem to have had a very intense introduction to Sarcoid with severe symptoms, it must have been pretty scary for you. I have had a slower introduction - 3 separate episodes affecting different areas of my body over the past 2 years. Would you believe when I initally went to the Doctor complaining of joint pain, lethargia, swelling etc.he diagnosed me with having Gout - I am a 28 year old female and my BMI is 24! So as the specialist in St. James' said, Gout is as common as hens teeth for a girl my age! I had my bloods done and was told all the results were normal. I was given Difene on a number of occassions and sent packing. I kept having the problems so I called the GPs surgery and asked for a copy of my results to be sent to me and when I received them I noticed they were not normal whatsoever. I doubt he even looked at them! All my inflamatory markers were raised and he didn't even notice. It wasnt until this year that a brilliant female GP in Templebar saw me when my symptoms were getting worse and immediately thought of an autoimmune disease so ran a number of tests and on receipt of the results referred me to a specialist.

Such a tricky disease to diagnose, plus such a tricky disease to deal with but I am delighted to hear you are improving and others have had positive experiences.

I am due back in Feb for my biopsy and I guess I will take it from there, I hope you continue to feel well and symptom free.

Take care!

HI Rmmb,

I am so sorry to hear you have been through the mill the past 18 months. I know how tough going it can be and I understand how frustrating it can be when you are finding no clear answers anywhere.
I have had a similar story to yours - it has been ongoing for the past 2 years and I was only diagnosed 1 month ago. I too and 28 year old female, non smoker, relatively healthy and happy up until about 24 months ago. It is amazing how quickly you can deteriorate isn't it? I literally woke up one morning with a swollen and painful knee that was getting worse and worse. Then spread to the other knee, ankles ,wrists, fingers etc. My joints became so swollen that I could'nt wear shoes (I was a right sight! ha!) and the erythema nodusum appeared all over my shins. My internal organs are mostly inflammed (liver, spleen) and I have 2 nodules in my right lung and inflamed lymph nodes. I think the worst aspect of my Sarcoidosis is the lethargia, constantly wrecked, down etc which is very hard to deal with and extremely difficult to try to live a normal life. I know it is very hard to keep positive when you are feeling so crappy, but you will start to get better. If you read through the posts above you willl see that the majority of people do improve after about 2 - 4 years and their lives return to normal as the Sarcoid goes into remission.

Also from what people are saying, the harder and quicker the onset of Sarcoid the more of a chance that it will leave just as quickly. It is so tough going right now, I totally understand as I am there right with you but we can beat this and we will.

From a diet perspective I haven't really been advised anything, but I am just watching what I eat and I have started doing Aqua Aerobics which has helped dramatically with my joints. I would highly recommend it. I have also cut alcohol completely out of my diet and have come completely off the steroids. You are right - the steroids do awful things to you, I only take them now if I get a very bad flare up.

I hope today goes well for you and you don't have to go back to hospital - I will be thinking of you, please let me know how you get on.



SSSM

Hi Rmmb,

It is crazy how similar our stories are alright - same age group, sex, medical histories, timeframes and symptoms! It is great to speak to someone who knows how it feels and who understands what is going on physically as well as emotionally.

I am glad you are not going to hospital this weekend, as you say there is not much they can do there particularly as it is a weekend.

I am not currently on medication - I literally stopped taking the steroids (20mg / day) x 2 months. I was attending a Rheumatologist in St. James' who put me on the Steroids after seeing me 3 times as my symptoms were just getting worse and worse to the point that I could barely drag myself out of bed. I had a CT scan done where he noticed the lumps in my right lung and my lymph nodes were significantly enlarged to referred me to a Respiratory specialist. The Respiratory specialist wishes to carry out a biopsy on my lung but the steroids are still in my system so Ihave to wait for them to clear. Luckily my eyes have not been affected (yet) - they do sometimes feel dry and a little sore but nothing like what you are experiencing. I am trying not to go back on the Steroids as they really didn't agree with me, so I completely understand how you feel being on them. My right hand side appears to be more affected than my left, although the Erythema Nodosum are worse on my right leg.

I am based up in Dublin and am still working. I work in a Medical clinic so the Doctors have been very kind to me and have been very understanding with relation to time off etc. There was a point a few months back where I thought I might have to give up for a while but luckily I am still motoring on. I am just waiting to see what the biopsy and further tests bring at the end of January and take it from there.

I know you are so fed up right now, but bear with it, I promise it will get better.

From my experience over the past year, I really think trying to stretch out the periods that you are off steroids as much as possible as they won't do any good long term, I know they do provide short term relief but a Specialist in St. James' said that they do not improve Sarcoid in the long term at all.

You poor thing, my thoughts are with you and I hope they manage to get your symptoms under control soon for you so you can start rebuilding your life. Yesterday was the first day in 2 years that I felt 90% myself again, I am delighted and you will feel like that too so keep in there all will work out.

Please let me know how you get on next week - I will ensure to give you an update on how I am getting on too - a problem shared is a problem halved as they say

Chat soon

x

chef wrote: »

youcancallmeal wrote: »

What symptoms did you have?

Still have them, haven't started treatment yet.
Dry cough for the last couple of months, and then last week began the painful ankle joints, swollen ankles, and lumps on my legs.

I remember my consultant saying that what the alternative diagnosis to sarcoidosis would have been so serious that I should be glad I ended up with sarcoidosis. I view it as a nuisance more so then a disease that controls my life. Also if it hits hard and fast the outlook is good. If it progresses long and slow then prepare to adapt your life style. Best of luck.