Diagnosed with lung Sardcoidosis yesterday

Hi Maria

I had exactly the same as you Blood Tests, 2 CT scan, MRI, Brochoscopy ( which was horrid!) and because they tests were not given defintive answers, I like you thought it was Lung CA and was incredibly anxious. although relieved to find out it wasnt CA. Ihave a lot of pain in chest under the ribs and just off centre. Sometimes it really takes my breath away. I have been told thats where the infected lymphnodes are.. I have been on two short courses of steroids but refuse to on them long term. I wear a C Pap mask at night after having breathing tests done and it does help reduce the fatigue during the day. I sweat profusely every night which is a nightmare as the washing machine is always on !! I have a lot of pain in joints, specifically my legs but I go to the gym 3 times a week whcih is helping.I do get out of breath quite easily but I have inhalers ( previous asthma). Conserding what it could have been, I try and keep and healthy liestyle because it certainly is NOT going to the get the better of me xx

Hi Maria, my brother and I are both late fourties and after all the usual tests and worry, we have both been diagnosed with sarc although we have it in slightly different organs. Wondered if you are in Norfolk? And if so which respiratory consultant did you see? Between us we have seen a few there. Try not to worry too much, stress almost definately plays it part. They will see you regularly and also refer you to other departments if needed. I am under a neurologist too now. Feel free to ask any questions or message me privately if you wish. Sharon x

Sorry should have said we go to Norwich Hospital x

Hello again, THANK YOU so much for the replies.  I cannot tell you how much of a relief it is to make contact with people in a similar position. I think you are right, it may well be stress related as I've always had a busy lifestyle along with the pressure running a building business, working, children, moving constantly and loosing both my parents all in the last few years which I think have had a big impact on me. Therefore we relocated to Norfolk last Autumn ironically to reduce the stress on me and take a slower pace of life, we have downsized the house but we have spent the last four months renovating it in readiness for my daughter's wedding which will take place here on Saturday 23rd!!!  I was hoping to have the wedding then I would be able to completely change my lifestyle, but now this diagnosis has come along! I've been seeing Dr Babu/Dr Cotter at the James Paget for tests, consultancy etc. I went to Pharmacy this morning to organise the steroid etc and he was shocked to see such a high dosage of 40g a day, pulled me aside to discuss the side effects and gave me a card to keep with me at all times so people are aware I'm on that dosage.  It has frightened me somewhat.  I don't know now if I should start taking the steroids yet as I have to be up and running for wedding next week. What do you think?

HI Maria

Only you know how your feeling and if you think the Steroids will help, then take them.

You have alot going on at the moment, but dont forget to look after yourself too.

By the way my symptoms are being breathless especially when using stairs or walking on an incline which I now makes my heart rate increase, I've recently noticed a tightness in my chest, feeling tired (which I thought was my age and lifestyle), hot sweats at night (which I thought was my age and to do with weening myself onto a low dosage of HRT a year ago to just about manage menapausal symptoms!!!), I do ache on occasions but once again thought that was my lifestyle (ie renovating a house over last few months). 

Thanks juliy0127!  Having not taken steroids before I'm not sure how soon they take effect and more importantly if/when the side effects take place so I'm not sure whether to start tomorrow or the day after wedding (as I'm coping day to day at mo).

Hi Maria, I have had sarcoid since I was 30 and have gradually gotten worse but still manageable. I hope your steroid dose is 40mg not 40gms if it is 40gms check with GP asap as that is way too high for safety/and must be a mistake

Let me know Take care Helen

 

Hello, Thank you for your replies.  I have just checked and the dosage is 40 mg per day using 8 x 5mg after breakfast each morning.  Do you think that is normal for the beginning of treatment for Sarcoidosis? I have rung my local medical practice to speak to my doctor who will be available tomorrow.  I really need reassurance that I'm making the right decision regarding the steroids and the dosage, although the way I have deteriorated over the last 3 to 4 months, and even climbing stairs causes breathlessness and wheezing now, I can't see how I can avoid taking steroids otherwise the long term effect on my lungs without treatment I feel could be disasterous. I feel rather overwhelmed at the moment that after all the tests including the horrible bronchoscopy over the last few months, I now finally have a diagnosis, but I'm not sure how to go forward.  I don't feel particularly enlightened by the conversation with the Consultant who appeared to be rather blazay about things too.

Hi Maria

I was placed on 60mg daily so I see no trouble with you taking 40mg.

With your daughters wedding so close you may have to decide on two avenues.

One...start the steriods now as the side effects will take a while to start.

Two...leave it till after the wedding and not have any concerns about side effects pre wedding.

Personally I would leave it as you are familar with your present health as it stands. Why add a variable at the last minute. Benifits from steroids are long term and a long time coming.

There will be plenty of time after the wedding.

Just my thoughts

Regards

Tangles

Thank you Tangles, your post is really helpful about the dosage.  I'm currently waiting for a ring back from my GP so I can discuss all my concerns especially with the wedding reception here next week.  I'm slowly getting my head around the idea of having Sarcoidosis. It's very early days at moment so I'm sure after the initial surprise and getting to grips with the medication, I will be ok.  I always try to have a good attitude about all things in life and I think it is always better to be positive.

Thank you once again to everyone for their comments,

Regards  -  Maria

Hi Maria, my wife has had Sarcoidosis for about 45 years,when she was first diagnosed she was put on steroids gradually reducing the dose over a period of time, every time she came off them completely, it came back, so she has been on a small dose of 2.5 mgs. For many years, what Inwould say to anyone with this disease, when you have a problem on any sort, make sure your doctor knows you have Sarcoidosis as the symptoms you are showing could be related to it.

Read up on what the symptoms are early on, so that you can decide if there is a possibility that it is related to Sarcoidosis.

during the last 5-7 years we have visited many hospitals trying to cure the various things she has had wrong with her, she even had a pacemaker fitted because of Arrythmea, only now when we seem to have exhausted all other possibilities do we think all the conditions she has had could be related to Sarcoidosis.

Always look to see if it could be related to Sarcoidosis if you have other problems arise. 

One other thing Maria, if you have a regular appointment with a specialist, make sure you see him on time, also you shouldn't worry about bone density too much, that can be controlled with Calcium tablets, once your body has settled down with the steroids it will hardly make any difference to your everyday living, my wife is now 73, she was diagnosed when she was 28 and apart from the first few years while the condition was being controlled, she has had a normal life with regular checkups.