Well after a long few years trying to get a final decision, it looks as if my other half has a diagnosis of sarcoidosis, with severe pulmonary fibrosis.
Just wondering if anyone else has any experience of this illness and what to expect next? I’m hopefull that as my fiancé is relatively young (51) and fairly fit, a transplant may be a viable treatment for him? He takes steroids daily and is on oxygen almost 24 hours. We’ve had a PIP assessment as he’s had to stop working... just waiting for the results of that too!.
Seems to be lots and lots of waiting in this games!!
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Rachelmcc80
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Hi Rachel, I’m carer for my husband Pete who was diagnosed with sarcoidosis in 1991 aged 39. He was put on high dose steroids for a long time before finally being referred to the Royal Brompton in London. He’s not on oxygen.
Does your fiancé have a consultant? He maybe needs to be referred as he has pulmonary fibrosis and is on oxygen. It’s good to speak to a sarc specialist if you can as it affects people in different ways. It would be good if you could go along with him to any appointments if possible. You can also get leaflets from the BLF and call their helpline on 03000 030 555 during office hours Monday-Friday. I wish you and your fiancé well and hope he gets all the help and treatment possible. Xxxxx
It’s a tough illness as every day is different, today he’s struggling with the humidity.
He does have a consultant although we have considered getting a second opinion as we do not have massive confidence in her ability. I try to be with him as often as possible and attend appointments when I can, we even paid private to see our consultant (which turned out to be a waste of money).
Still, we manage, and we do what we can, I just get frustrated at the not knowing and concerned about what’s that come xx
Hello. I may have the record! I have had pulmonary sarcoidosis since I was 35 and I am now 74 = 39 years. I am still doing fine, although on oxygen which is no bother really. I do know someone who was diagnosed with sarcoidosis about 10 years ago and two years later there was no sign of it. So sarcoidosis can go away (acute sarcoidosis)
I don't think that steroids make sarcoidosis better but stop it from becoming worse. I have been on steroids 5mg a day for 12 years (at first I was on 30mg a day for 5 months and gradually weaned down to 5mg over 5 months). The 5mg a day seems to be keeping it from getting worse. When I took my steroids in the morning I could not get to sleep – sometimes still dozing at 4am. Then I gradually took them later each day until I now take the 5mg at bedtime and get to sleep quite easily.
I think the breathlessness is because I have less lung capacity than a person without sarcoidosis as I have lots of 'deposits' called granulomas in my lungs.
There are a few specialist hospitals with a sarcoidosis clinic in the UK (look on the internet). Sarcoidosis people have talked about going to The Royal Free Hospital London and The Royal Brompton Hospital London (I attend the RB Sarcoidosis Clinic every six months).
NB If you do have sarcoidosis, please be aware the Royal Brompton Hospital webpage rbht.nhs.uk/patients/condit... says under .... Can I take vitamins and supplements? You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis. Does your fiance have a cough with phlegm? I think most sarcoidosis people have a cough without phlegm, but I do produce phlegm and have to do breathing exercises to help cough it up called Active Cycle of Breathing Technique' which is very helpful. There is lots of explanation on the internet. There are also some aids you can buy to help loosen it if phlegm is a problem (Flutter, Acapella).
A personal tip: If I feel a sore throat or tickly nose in order to stop a cold developing I gargle with 50:50 TCP (from chemist) and squirt First Defence (from chemist) up my nose several times a day.
Your fiance could ask to go to pulmonary rehabilitation classes (exercise and a talk) to help his breathing.
Thanks so much for replying, this illness really is a nasty one. Wow, your been managing well for so long! It’s nice to know that life expectancy can still be good, I want my man around for a few years yet!
The consultants have recommended pulmonary rehabilitialtion, but he is yet to get this arranged. I think it will be useful, just recently we’ve been having to juggle work and finances to make ends meet... difficult when we have children to consider too.
I think a referral to our nearest hospital might be our next phase -try and get him seen by specialists in the sarcoidosis field. He has suffered with other autoimmune conditions (was very ill with autoimmune haemolytic anaemia two years ago but he founght hard and got through that although he still seems the haematology team monthly.
He had recently had a PET scan as the drs weren’t sure whether the modules on his lungs were cancerous or just granulomas, this was inconclusive and will be repeated in the future. In the meantime more breathing tests (which seem to get worse each time), more bloods, more consultants and more methyprednisolone high dose courses of steroids is and when are needed. The daily doses of steroids are up and down, when he’s ill, the steroids are hiked up to 40mgs per day and the weaned back down to 10 or 5mg a day before the cycle repeats again.
I’m constantky on edge monitoring his exercise, food, energy levels and checking that he’s ok doing day to day things.
I'm sorry it's so tough at the moment. As you say your fiance is still young and perhaps a transplant may be an option. Have the doctors mentioned it? It is a lengthy process of evaluation and to finally get listed. Do you know his current lung function? How long has he had pulmonary fibrosis?
I can only imagine how difficult things are for the both of you, but especially you. I sometimes think it's much harder for the caregiver than the patient in many respects, as you see the suffering but cannot relieve it.
I think your fella is very lucky to have you. 😄Wishing you all the best,
I honestly don’t know what his pulmonary stats are, but I’m attending an appointment on Saturday with him so will sit up and take note!
He had testicular cancer about 10 years ago and it was thought back then that he has lung cancer (treated with bleomycin) in actual fact, maybe that was the start of the sarcoidosis and the lumps they thought were tumours were actually granulomas... hence his demise since then.
It’s a long and frustrating journey... I’d just like some answers for him. He’s such a wonderful and inspiring person, never complains and just fights through to see the positive in every situation! Transplant option has been handed around but with his history of cancer and the problems with his bloods the assessment process seems very slow and cautious. Hopefully, not that a diagnosis has been agreed, we may start moving towards a formal registration on the transplant list?!
I understand the caution of the doctors that you mentioned since he has had cancer, how long has he been cancer free? And what kind of problems does he have with his bloods? And yes, it is very slow, 😑 I had to undergo two evaluations , because I wasn't sick enough the first time to be considered for a transplant.
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