Are there many people on here who have been diagnosed with Sarcoidosis?
I have just been diagnosed and placed on a 6 week course of steroids (for now) but as of yet the steroids aren't doing much to help... I am wondering if there is anything else I can be doing?
hello
I was diagnosed just over 4 years ago. I started on steroids and then was put on a tandem drug called azathioprine which is a steroid sparing drug but does the same job and I came off the steroids 30 months ago. Bear with the steroids - they can take a while but I am assuming you are off back to your consultant in 6 weeks? There are a number of other treatments available - I don't know much about them because I have never tried them. Try sila.org (I think), its an excellent site full of sarcies with great advice. Mine has 'burnt' out but the damage is done - good luck and anything else let me know.
marie x
Hi Marie,
Bit of a daft question... What do you mean when you say yours has burnt out but the damage is done?
Is it that you no longer have problems with the Sarcoidosis but that it has permanently damaged your lungs and if this is the case... To what extent?
I have been on the sila site that you recommended, thank you for the link it's the charity site though not the link you posted but I did manage to find it and as you mentioned loads of advice on there 😀
I'm sticking with the steroids but have had to double them to what the consultant put me on as they weren't having any effect... My GP advised doubling for a week to get them into my system then drop to the dose the consultant said. The pain in my lungs is horrid!
I also have Erethyma Nodosum (lumps, bumps n rash on my legs) and aching joints but the main one is my lungs. It's that bad that I have even applied for a blue badge (parking) as struggle at moment to go food shopping n I hate Internet shopping.
Hope you have support of family and friends and many thanks for your speedy reply 😊
Catherine x
Hi Catherine
Yes they think mine has burnt out. I still have my ACE level's tested but they have been stable for the full 4 years now. I don't seem to have problems with Sarcoidosis anymore, the sores on my face and body cleared up quickly as did eye problems and my chest infections once I started on the steroids and azathioprine but yes, I didn't see about it quick enough and my lungs are very damaged - I have around 29% lung function and am being considered for a lung transplant. That said I live as normal a life as possible. I work full time, have a dog, travel and enjoy myself at every opportunity. I even swim about 4 times a week - its ironic that I can swim further than I can walk and I do have a blue badge - the only concession I have - its certainly made a huge difference to my life.
I was on steroids for 18 months but tapered off them when it was agreed azathioprine was working well. Still on that along with azithromycin to try and keep the chest infections away as well as symbicort.
Anything else, just ask. I think I forget what pain I was in prior to diagnosis - all I can remember is the utter tiredness I felt - and that blooming cough.
Marie x
Ahh yes the tiredness... Only fellow sufferers seem to understand that part of it. Of which I am grateful to you all on this site xx
Yes - I just remember lying on the couch have no energy to actually get up and go to bed! How I worked right through having it I have no idea!
I had to succumb and self cert on Tuesday as unable to carry on any longer... I was hoping to have returned to work today but the pain in my lungs kept me awake all of last night to the extent I phoned work and explained I wouldn't be in 😞x
Hopefully the increased steroids will help you. Hope the pain subsides soon
x
These posts are all 2 years old , but sarcoidosis is a lifetime disease. The symptoms may lay dormant but they can come back with a vengeance. I was diagnosed with it in 2014 and it's now 2017 and mine is in flare up with increased lung involvement. Anyone reading this now should know there are several Facebook groups for this condition and support. Hope everyone here is doing well. This is a nasty illness .
I know about FB groups as I'm a member of a few of them. Hope you get some sort of relief from symptoms soon.
My Husband had this years ago and was in hospital for two weeks with xrays every year for four years to make sure it had had gone. He has been left with Cold He is ALWAYS cold even in this lovely weather. Steroids were not used just complete bed rest. Good luck.
Thank you for your reply Lucydog,
I know the feeling well of being cold as I also suffer with Raynauds (poor circulation) and my husband cannot understand when I say I'm cold especially as you say "in these warmer months".
X
I am so glad its not just me! I used to be the scourge of the office, opening windows - always warm. Not since sarc, I am permanently cold. Still take a hot water bottle to bed with me and glare at the office window openers.
Marie,
How the hell did you manage to stay at work when you were diagnosed with Sarcoids... I'm in such a state with my breathing that I feel I'm going to need a sick note from GP to follow on from my self cert. the daft thing is I'm giving myself such a hard time for being off ill in the first place.
Catherine x
I just have. I can't be off sick - I hate it. My breathing is still rubbish as the damage is done but I have a desk job and an employer who will let me work from home if I am feeling a bit grotty or if everyone else in the building is ill. Don't give yourself a hard time - this illness affects many people in many ways. I feel lucky that I can now manage the breathing etc - I think you just learn to live with it.
Hi AmethystAngel. My Mother had Sarcoidosis and from what I remember it took quite a while to get under control. But she did do it and eventually and came off the steroids. They said she would never come off them but she did. I was young at the time and that's all I remember about it.
Thank you for your reply Mavary,
I am amazed at how many people seem to be out there with this condition but yet there is so little known about how it starts.
I'm hoping that the steroids will do their magic soon and that I won't be on them for too long... I'm already overweight, so now having to really watch what I eat 😞
It must have been hard for you when growing up if your mother had sarcoidosis; did it affect life very much?
X
It was hard for us all especially my Father. My Sister and I were married with young children. It was nothing to be called to look after her while my Father was working. I think my Father had the hardest job as he very often had to come home from work lunchtimes and evenings to do everything. The good news is she did eventually get over it and lived till she was eighty five. I think she was in her fifties when she had Sarcoidosis. My Sister also had it but it affected her legs not her lungs. She got over it fairly quickly whereas my Mother had it for years. X
It has affected my legs, lymph glands and lungs and I'm still trying to get my head around it all.
I'm also trying to convince myself that it will disappear as quick as it came but seem to struggling and have myself more convince that I will need to learn to live with it long term 😁
Glad to hear that your mam eventually got over it and more so that she lived to the grand age of 85 x
My Sister seemed to get over it quickly with no lasting effects. It took my Mum a few years. The thing is they both beat it as I'm sure you will. How long have you been diagnosed? X
I was given diagnosis last Wednesday but had abnormal X-ray done two and half weeks ago and I knew from that what the diagnosis was going to be. But I haven't been right since having breathing problems back in January and I think that has been the start of it as the leg side of it shows up generally as a secondary symptom. Since January my breathing went down hill and I just kept putting it down to being overweight n kept telling my husband that we need to do more walking to keep fit ... I have also been struggling with walking due to arthritis in my foot and I'm waiting for specialist insoles; so like I say I just put it all down to my weight. Silly thing to have done now on reflection 😢 but no turning back the clock x
It's going to take time. It's early days yet. Still you have the hope it can get better as did my Mother and Sister. The Specialist did say it was unusual for two people in the same family to get it. I always remember myMum saying she couldn't walk up hills. But like I said she lived till she was 85 and she did come off of the steroids. Let's hope the same will go for you. Anyway I hope it all goes well for you. Keep in touch and let us know how things are going. X
Thank you, I will do. Hahaha I wish I could walk more than 40 feet on a flat surface without struggling to breath... Just need the steroids to do their magic.
Bye for now and take care, thank you for taking time to listen x
I have had this for thirty plus years, just the odd minor flare up recently, very susceptible to infections, on azethromycin daily to minimise them, seems to work, no pneumonia or serious infections since I was put on them. The scaring on my lungs has been fairly stable for the last few years but as I get older the elasticity in my lungs has diminished and I am now on oxygen 24/7. I hope and pray that yours goes away and it can. The steroids are a pain in the butt however, they have, at times, been the only way that life has been possible. Good luck, keep living the life.😎
Hi there,
First of all thank you very much for your reply... It's great to be speaking with fellow sufferers, not good that we are suffering but good to know we are not alone.
Wow! 30+ years is a long time! did it take long to get under control?
I'm keeping going with the steroids and my GP has doubled the dose that the consultant gave me, just in the first week to get them into my system so that hopefully I can return to work. Not sure if I'm kidding myself in relation to the work side of things at the moment as I'm really struggling walking around my house let alone the huge building where I work.
Things must have changed in the years that you have had this condition, do you find there is better understanding or is it much the same?
Sorry to read that you are on oxygen 24/7 but it must make things easier in a way.
As you say "keep living the life", that's all we can do 😃
My sarcoidosis was never under control, it just stopped getting worse and the scaring remained stable. Things may well have changed since I was diagnosed but the treatment seems to be much the same, steroids and antibiotics, there are some other drugs but the side effects can be terrible. I hope that your sarcoidosis disappears as many do, mine is permanent and has done damage to my lungs that is chronic and irreversible . I worked for twenty years before I had to retire and your employers have to make any reasonable adjustments to your working environment for you. Good luck. T.
Did you find the combination of the steroids and antibiotics helped?
My GP gave me a prescription for antibiotics on Friday and told me if no better by Saturday to take them along with the steroids... I haven't been able to do this as it's alien to me given the fact that they told me my lungs and chest were clear of infection... So why prescribe antibiotics. Going to take that back up with them tomorrow.
Hahaha... Will be interesting to see what reasonable adjustments work are able to put in place as I work in a secondary school.
What is your steroid dose?
Consultant told me to take 4x 5mg a day for four weeks then drop down to 2x for 2 weeks but they weren't making any difference so my GP said double up for the first week and see how I go. X
I reckon that sounds like a plan. I was on 40mg for 8 weeks at the outset and then dropped to 20mg. You can only just try it and see.
Good luck
Mx
Hi Marie,
Thought I would send an update... I have been on the 40mg now for a few days and to be honest I don't feel they are making any difference 😞 I still get terribly out of breath when I set off to walk, even a short distance and still struggle with the stairs at home. I'm wondering how long they will take to fully kick in or even if I need the dose increasing yet again.
Feeling very down with it all but know that I will have times like this.
Catherine x
Good to hear from someone with sarcoidosis as most people here seem to have COPD.
I have had chronic (long term) sarcoidosis for 10 years. However, please know that most sarcoidosis goes away after a year or two with no side affects. I know someone who had it 10-15 years ago for a year and he was then declared free of it and no recurrence.
Some tips that may help you and others
1. I was taking 30mg of prednisolone (steroids) initially and took them in the morning. I could not get to sleep. I changed to taking them at in the evening and got to sleep easily. I tapered them off very slowly (over 6 months taking 5mg less each time for two or more weeks until I got down to 5mg. I have been taking 5mg prednisolone for a long time. I was also prescribed lanzoprazole at the same time to stop any problems with my stomach which might result from taking the steroid.
2. Do NOT take Vitamin D supplements as this makes the sarcoidosis worse. There are articles about this on the internet and also about calcium supplements.
3. help websites dedicated to sarcoidosis patients:
sila.org.uk/ UK based I think They used to have a chat line (similar to healthunlocked) but this seems to have closed down recently. If anyone has any information I would be very grateful.
inspire.com USA based I think
4. blf.org.uk (British Lung Foundation) may have some information of use. But I suspect you came to Healthunlocked from their website.
5. Be aware that if you take steroids for a long time your bone density may be affected (osteoporosis). You should ask your doctor for a bone scan. There are tablets you can take for this once a week.
6. Last year I was put on oxygen by my sarcoidosis specialist. (You must not take oxygen unless it has bee prescribed by a doctor.) I am now on 16hours a day and night and use it whenever I walk around. This is not the end of the world and I am very grateful to have it. I have small cylinders one of which I take out in a shopping trolley and it is no trouble. I find people are very kind when they see me with the canula in my nose!! My daughter-in-law takes me to the shopping precinct near her and she books me a shopmobility scooter which is great fun and saves using up my oxygen as I only turn it on when walking about.
7. My sarcoidosis specialist prescribed azithromycin Mondays, Wednesdays, and Fridays two years ago after hospitalisation with a lung infection, and I have not had a lung infection of note since.
9. If anyone is prescribed oxygen you need to have a fit-to-fly test to see if you are able to fly (in a 'plane!) I think because the oxygen pressure is less in a plane than on the ground. I do not fly and we are happy to holiday in the UK.
I hope this all helps you and others. It is good to have a sarcoidosis community. Perhaps if people post articles we could put Sarcoidosis in the heading.
by for now
Hello
Thanks for the post - very helpful. I too am on azithromycin. its made a huge difference to the number of infections I have had. I too have chronic sarcoidosis but its quiet at the moment - still on immunosuppressants though.
I agree that its good to see a few people on here that have sarcoid - we are a minority I think
marie
x
Good evening Sarcoid 123,
Thank you for your lengthy post 😊
I'm on 40mg of Prednisolone but it doesn't seem to be doing much to ease the symptoms at present 😩 going back to see my GP tomorrow.
The consultant put me on 20mg but I was in such a state that my GP told me to double the does for a week.
I have to admit that having recently being diagnosed with this condition (last Wednesday), but having abnormal X-ray taken a couple of weeks ago and suspecting what it was before I had the diagnosis confirmed... It scares the hell out of me!! I seem to be having more bad days than good at present and can't help but worry about worse case scenario. I need to start and think more positive.
Bye for now
Hi,
I am enjoying reading all the comments here. My husband has been diagnosed with Asthma this year as a result of Sarcoidosis. He has a decreased lung function and an advanced lung age.
We had a biopsy done of one of his lymph nodes that came up negative for cancer which was a great relief. What kind of treatment can we expect next and what have been your experiences with these kinds of treatments ? Thank you very much for your help. These forums have been a great source of information for me. I really appreciate it !
Hi rigge,
I'm unable to advise in relation to medications as the only medication I have been on is Prednisolone and it didn't have the desired effect. I'm still waiting on results of a recent CT scan and have been told I may need a biopsy doing.
Keep on this site as it really is a wealth of information and the people here are all very supportive.
All the best to yourself and your husband.
Newbie with Sarcoidosis
Steroids and Sarcoidosis
Multi System Chronic Sarcoidosis 
