Living with Sarcoidosis.: Last November... - Lung Conditions C...

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Living with Sarcoidosis.

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13 years ago•13 Replies

Last November I had a heart attack. Not sure if I had Sarc then or not but I started to get out of breath in Jan. The doctors put it down to my heart attack and it took four months for my cardiac consultant to refer me to a chest consultant to check it out. By this time breathing was difficult and life was not good. After a lung biopsy in July I was diagnosed with Sarcoid. Since then I have portable oxygen and been put on Prednisalone and Alendronic Acid. At first the Pred was working. My breathing improved and I was starting to feel quite good apart from the Pred side effects. My eyes are sore and I tend to wear sunglasses when I go out to help with the glare. Over the last couple of weeks though I seem to be going backwards. My breathing is getting worse and I get so tired that all I can do is sit on the couch in the afternoons. I see my chest consultant soon so I will be asking some questions about it.

Has anyone had any similar results with Pred? I have heard that there are other meds that can help. Does anyone take folic acid? I would like to have some info that I can discuss with the consultant when I see him so any help would be great.

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13 Replies

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13 years ago

Arrrgghhh I typed out a reply and it disappeared. I have to dash but I will try and reply later. One thing I will say is ask about azathioprine - it's an immunosuppressant.

Marie

13 years ago

Right hopefully this time my reply will not disappear into the ether.

I was diagnosed with Sarc in April 2011. I was initially put on 40mg of pred, 100mg of azathioprine (an immunosuppressant) and the other things you get that go along with these, alendronic acid, omeprazole and adcal. I have since then felt pretty good apart from a couple of chest infections. I have tapered my pred down to 6mg. If you are going to see the consultant ask about your eyes (sarc can be in your eyes and I was sent to see an opthalomogist (sp?) but they were fine even though I still get the glare you talk about.

I mentioned azathioprine. This was prescribed for me as it suppresses the immune system so your body doesnt attack itself which is what causes the damage in the first place.

Good luck. I do hope you feel better soo. If I was you though I woudl go and see your GP you may have an infection which is what is making you feel so low.

Marie x

• in reply to13 years ago

Hi Marie, thanks for your reply. I will ask about these other meds you tallk about. I am glad you are feeling good and long may it continue.

Paul x

• in reply to13 years ago

Hi Paul

You don't say what dose of Pred you are on. from what I have heard and read re sarc, sometimes it takes a bit of playing about with the dose to keep it under control. Go too low and it can return/flare up, but obviously you don't to be on too high a dose because of the horrible side effects you get. The azathioprine can damage your liver and kidneys and make you more susceptible to some cancers, but I am closely monitored and i have bloods taken every month to check my liver and kidney functions. There is another drug widely used which is similar. Its call methotroxate or something like that. it seems to be quite popular and does similar things to azathioprine. Good luck - I hope things pick up for you. You should also ask about the possibility of being referred to the Brompton - they specialise in sarcoidosis amongst other things.

• in reply to13 years ago

Hi Marie, I am on 60mg of pred and yes I don't like the side effects much. Have been on it for 6 weeks so far. I have heard of the Brompton via other blogs but I am a bit too far away I think to go there. It is a bit scarey having to think about these drugs and their side effects when all you want is to be able to breath.

Paul x

13 years ago

Oh and one last thing - take a look at sila.org.uk

its a site about sarc - I am sure someone will be able to answer you folic acid question there

sassy5912 years ago

You have had some good advice from MarieWF Paul, so definitely follow that up. Sarc is a very complex disease to deal with so different medications can help some but not others. Pete has had sarc for 21 years and was only given pred to start with. He now takes 10mg per day but ups that to 60mg if he has a chest infection. He also takes Azithromyacine every day day as a maintenance does of antibiotic and has also had doxycycline, but was never offered any immuno suppresant which may have helped him in the beginning. We were referred to the Brompton some 12 years ago and now go just once a year as there is little more they can do but monitor Pete's condition. Do get an eye appointment via the hospital and take care with your bones too. Pete has osteoporosis and also copd caused by scarring on the lungs and airways. Get the very best care you can and remember medication is changing all the time so I do wish you all the best. We are on the South Coast and used to go to the Brompton every three months. It may be worth getting referred there if you can as it is a good place. xxx

• in reply tosassy5912 years ago

Hi, thanks for your info. I think I am only at the start of what is going to happen and am a bit worried about it. Reading about other people and what is happening to them is quite scarey. It seems the meds you are put on help with your breathing but cause lots of other problems and then it is a matter of trying to manage those problems. You can't win.

Paul x

sassy59• in reply to12 years ago

You can and will get through this. Stay strong. xx

Mocarey12 years ago

I was diagnosed with sarcoidosis 42 years ago. I think in all that time I have had about a year off prenisilone. I now have to have a 5mg daily dose as my body no longer produces it naturally. It is a drug that causes so many problems. but without it I don't think I would have reached the ripe old age of 65. I do have several other lung conditions now, probably as a result of my sarc. When I was diagnosed it was such a lonely place to be. No one had heard of it and it was many years until I heard of anyone else who suffered from it. The pred has affected my skin, did give me osteoporosis etc, however it is in my opinion, the lesser of two evils!

sassy59• in reply toMocarey12 years ago

I do get where you are coming from and can empathise with you as a carer for my hubby. He would not get through without the pred and, inspite of side effects, it too has been a lifesaver. Good luck to you and best wishes. xx

12 years ago

Hospital today. The consultant is reducing my pred by 5mg every two weeks down to 40mg. No other meds until he sees how this effects me. He is making an appt for me to see an eye doctor. Had a lung test which was a bit better than the last one and an xray which was also a bit better than the last one. He is not sure at the moment how much scarring and how much is infamation. We will have to wait and see.

8 years ago

The specialist confirmed my Sarcoid in February but he did not prescribe any Meds, he was going to put me on Prednisalone but as I have copd he was concerned that I would start to become immune to them and if I had a copd flare up they would not work. Which I suppose could well be true.