Prednisolone for pulmonary sarcoidosis - how long to feel the effects?

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Hi all,

I have been suffering with shortness of breath and a dry cough for around 4 months now. After ruling out TB with CT, Xray, bloods and sputum tests i had a 7 week wait for an appointment .. not overly happy with that. At my appointment my o2 levels were so low i was admitted for 3 days of steroid IV to help reduce lung swelling. For now it is just suspected sarcoidosis but they put me on 40mg of prednisolone (just finished two weeks on that dose & reduced to 30mg) ... my question is, roughly how long after starting steroid treatment would people suffering with pulmonary sarcoidosis begin to feel the benefits? I'm getting some of the negative side effects of prednisolone but don't seem to yet be getting any of the benefits... still struggling to climb the stairs!

Sorry for the long message but thought some detail may help.

Great forum & thanks in advance for any responses.

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14 Replies

  • Posted

    Hi Gab,

    I was diagnosed March 2016 with pulmonary sarcoidosis. Started on prednisolone 30mgs I am down to 3mgs now after twelve months. The coughing I had was nonstop and it went after two weeks I'm on an inhaler to keep it at bay. I still get SOB when climbing stairs but I feel so much better. I was out of work for 12 months but I'm back now. I'm tired after work but its a good tired. I have pulmonary thickening which will never disappear and it causes discomfort when I cough, sneeze or yawn but I can cope with that. It does get easier. Exercise and a good diet is the key. I take a lot of supplements: Acidophilus for my stomach and gut bacteria, vitamin c with zinc to combat colds and flus, turmeric has anti inflammatory properties, magnesium for energy and milk thistle for my liver.

    Hope you see an improvement soon. Every sarcoidosis patient is different and reacts differently to treatment.

    Regards,

    Polly

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    • Posted

      Hi Polly, firstly thanks so much for the response! 

      When I was short of breath I would go into coughing fits, this may have improved slightly since being on Prednisolone and a family member did mention that I seem to be coughing less. Its difficult to see progress day to day but it may become more evident in time. 

      Luckily I work in an office so after tackling the stairs of a morning I am able to catch my breath and work. Sorry to hear you had such a hard time with work, I should be grateful for my situation not being worse!

      Out of interest in the 12 months since starting Prednisolone would you say your shortness of breath has improved at all or had the pulmonary thickening kept things at a level?

      Thanks for the recommendations for supplements, I will look into them. I am making an effort with diet, managed to drop a few pounds since starting the Prednisolone which I am happy with. Exercise is very difficult as even a walk to the local shops can be enough to make my heart work harder than I think it ever has done before. I am also conscious about causing scaring on the lungs as part of me is still hoping for a full recovery without too much permanent damage.. I am trying to do what I can when I can though.

      Thanks again for your support.

      Guy

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    • Posted

      Hi there, my SOB has definitely improved. I try to walk 2 miles most days and I would be out of breath but that's only from the exercise. Stairs are the thing that catch me whatever it is about stairs. I'm just thankful I feel so good. Even though I feel a chest infection coming on and I have had to get on to my gp for a prescription. If you know you have a chest infection coming on get treated quickly and it makes it easier to get back to your baseline. For winter time, I got the flu vaccine and the pneumonia vaccine and thankfully bar the odd headcold I survived the winter.

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    • Posted

      Thanks Polly. So good to hear people talking about improvement to SOB, it’s a daunting thought to live as I am now without prospect of improvement. 

      In the past five or six years I have had chest infections without fail as soon as the weather has started to turn. I will take your advice and get the vaccines available and be sure not to wait too long if I start to feel something coming on.

      Two miles a day, good on you! That sounds like a target I should be aiming for then.. may take me some time to get up to that and I will have to work out some routes to avoid steep hills but as there is a nice park just down the road I have no excuses! 

      Take care & thanks again for your help.

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  • Posted

    Hi Gab85, I'm new here but I hope you don't mind my replying to you.  You've had a tough time of it.  Sarcoid affects everyone differently and that's also true regarding the steroids.  I was diagnosed 10 years ago after years of coughing and no apparent chest problem.  It took a few years of routine breathing tests before I got the steroid treatment, I'm glad you got it right away.  The first time I was like you, the breathlessness wasn't really improved. Don't let that disappoint or depress you. They will help other symptoms, I noticed my cough eased up and I stopped coughing for 8 months, what a releif after 6 years even if the breathing wasn't as good as I wanted it to be.  My specialist was a bit disapponted too but I think my system was too low at that point, oxygen saturation was at 37% .  

    I'm glad I didn't know how bad I was at the time.  I kept going to work because I needed the distraction and to keep physical.  My job was was conservation so there was a lot of lifting, digging, carrying and the like working in open spaces and woodlands.  Three years ago they put me back on the steroids and thiis time the improvement has been much better but the dose was much higher.  

    I would encourage you to keep as positive as possible even on your worst days.  At my worst they couldn't get my oxygen levels above 33% for 12 months and that was on prednisilone the first time.  I'm glad I didn' know until recently because I probably wouldn't have gone to work more from fear than anything.  Yes, we have to be realistic but we can also balance that with hope and determination to get better.  I'm not going to give you my story with all it's twists and turns because you don't need that.  

    If I can give you some advice it would be to say whatever you can do for yourself do it.  I asked to be referred to a homeophatic doctor and my GP was amazing referring me on the NHS.  However the homeopath was telling me what I couldn't do - I couldn't work etc and I ended up in tears 5 minutes in so I told her I would decide what I could and couldn't do.  I gave up after 3 visits because she wasn't very optimistic and very defensive when I asked if steroids and her treatment would clash.  

    It's good to have information but remember you are you.  There is no typical response to treatments or progression of this condition.  It really can be impacted by your attitude so look to your future and plan things.  Make the most of all the little things every day.  I've been off work for 3 weeks, it's the first time in 10 years of living with this diagnosis but I had high blood pressure, a cold and labrynthitis all going on at the same time which led to fatigue so I decided to listen to my body and stop pushing for a change.  

    Pay attention to your body but don't sit down to this condition.  On the other hand remember you want to have a good quality of life and don't over do things because you might not feel it for a few days or weeks.  I pace myself now.  One of my jobs was to take people out walking, some days I felk like I was climbing Everest but your lungs needs to be worked even if they object, like mine did.  My volunteer would say why don't you just stop and I'd tell him I couldn't stop but I could slow down because the key was to complete the task.  Usually we walked 40 minutes through the woods past a lake in a country park on a faily level path I'd chosen for my fitness.  That's my thing, finding ways to keep going so if slowing down is what I have to do then I do that.  The homeopath was saying I couldn't, I said I can but I need to work out how, or I'll find a way round.

    Just a word of encouragement, remember to do tun things.  I joined a dance class, modern jive, it's great exercise at a pace I can manage and nothing like Strictly Come Dancing.  Once a month they have a dance night, it's great fun because you meet lots of people who just want to dance and the rule is if you're asked you have to say yes.  I dance one then rest and back up for the next one etc.  People don't mind and I've made some friends so now I know who isn't going to spin me like a top every 3 seconds and dance with those guys or I say, I get dizzy, so they generally spin you less.  

    Steroids aren't everyone's cup of tea, but no matter how small your improvement celebrate and keep doing that because every little victory helps.  Having read some of the responses on this site I'm encouraged by the very positive attitudes and empathy so I hope I haven't bored or upset you but I'm sure you will receive some very good advice from other members.  In the meantime hold on to the good moments and remind yourself every day about the things you did that day despite your condition.  

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    • Posted

      Hi ezme27919. Thanks for the reply, so impressed with the quick responses but mostly the kindness of people here!

      You mentioned that the shortness of breath (SOB) didn’t improve too much for you the first time you were on steroids but did a few years later on another course ... this is so good to hear! 

      I have an appointment with the doctor in around a month where I suspect I will have another round of tests to see how I am reacting to the steroids and maybe book me in for the biopsy. I was in two minds about trying to bring that appointment forward to let them know that I am not feeling much of an improvement to the SOB. Would you say that only giving it a month is too quick to judge or on your second round of steroids at the higher dose did your SOB improve rapidly?

      I am learning to pace myself with everyday tasks & am trying to learn what my new limits are. It is reassuring to hear that people like yourself are enjoying things like the dance classes, personally I don’t think I could handle anything more than a steady walk at the moment but as my condition improves I’m sure I will be able to get involved more in things like that. 

      Thanks again for your support Ezme, people like you and others posting on this site, willing to offer to support to others for no personal gain really restores my faith in humanity! 

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    • Posted

      Hi GAB85.  About your appointment I would keep it as is becuse you'll probably only gain a week by the time they reschedule.  In the meantime if you can keep a journal that would help you chart your progress and any small changes.  Great to hear your friends and loved ones have noticed the cough has improved.  Sometimes it's hard to notice small changes by yourself.  I now measure every little thing - I ran for the bus but it takes less time to recover.  I ran a little longer or further again quicker recovery.  It might seem like there's not change but you might not be aware of all the areas affected because the SOB has been the main focus.  

      I had several years between streroid treatments because I was convinced it wasn't a good thing for me.  I'd ruptured both Achilles tendons due to the steroids so I didn't want to expose myself to anything else.  I didn't want to gain weight again not for vanity sake but because you have to explain to people it's your meds not overeating when the look at you like, wow - you've really put the beef on.  

      I was also dealing with a strange consequence which I believe is connected to the sarcoid. My womb began to grow, there was no reason and no way of stopping it and I developed fibroids.   it was really serious in my eyes since the womb meant not enough space to expand the lungs properly and that mean less oxygen.  I also didn't like my Consultant keeping information from me then deciding I needed to take meds without explaining the reason, benefits or disadvantages.  He never gave me stats from the spirometry tests so I could make informed decisions. 

      After 7 years I looked like I was pregnant and struggling for breath , someone asked when my baby was due, not funny.  I think respiratory thought I was overeating while gyneacology were concerned about my chances of survival if I had to have surgery.  In the end the decision was made for the sake of my survival.  There were no problems during the operation and being on pure oxygen for 3 days was amazing.  I stopped wheezing and didn't need pain killers.  I was up walking round the ward as soon as the epidural wore off.  I didn't have any post op problems either.  I was also able to walk up the hill to my house which has a steep gradient.  I kept saying I didn't know what it was like to breathe normally for more than 10 years.  I walked a mile to the surgery to have my staples removed 5 days after discharge and then back home.  The Community Nurse came to my door to remove the staples 10 minutes after I got back but I didn't know she was coming.  She was really cross with me until she saw how well I looked, everyone said I looked great - its amazing what oxygen does for you.  

      Before the hysterectomy and second round of steroids I lost my speech, another symptoms of this disease. There was no pain.  I asked for a referral to ENT and requested the head of the department. Eight weeks after it began I saw the consultant, he put it down to dehydration caused by steriod / ventalin inhalers.  He wrote to respiratory and I was taken off the inhalers.  I was dehydrated because I had become stress incontinent every time I coughed and reducing my fluid intake was my way of avoiding an accident.  It's a vicious circle but shouldn't be.  It took 6 months to get back to normal speech with help from a speech therapist - not good when you're a professional singer. 

      Three years after the hysterectomy I went reluctantly back on the steroids (80mg), the cough was back and I was wheezing worse than before. I was afraid to do too much and avoided stairs etc.   I had just lost all the excess weight. It worked, I felt a difference after a few weeks, my cough dissappeared completely though I blew up like a beach ball during that time. 

      Then one day I realised I could make the hill at the doctors surgery without stopping, slowly, but I'd done it. I used to have to stop 3 or 4 times gasping for breath, it's just over 100m.   All the places I struggled with got easier and my walking pace became more purposeful rather than laboured.  I started climbing the stairs at work and I'm still dong that.   

      It's been two and a half years and I'm now on a maintenance dose (10mg). My son got married 18 months ago, I was overweight but he didn't care, his Mum was there to celebrate with him and how I looked wasn't important. I was able to dance with him, such a special moment I cry when I think of it.   Truth is, I'm lucky to be alive because my journey with this disease began 22 years ago when my children were 4 and 6 and the doctors didn't know from the symptoms what was wrong, no markers, nothing to suggest sarcoid and no way of treating me effectively.  I was at deaths door with undiagnosed blood poisoning too.  I just wanted to see my kids grow up, get married and be around to be a cool gran.  I fought for that.  

      So, GAB85, have a goal, make it a good one, keep reminding yourself you're going to see it and remember you are living your journey.  While it's nice to have input from other people about their experience there are other factors that affect you so keep your focus on you.  I'm A-typical because I'm of African descent and I have slightly larger lungs, also I sang classical music for years and that helped my lungs cope with the damage and distress.  On paper I'm not in good shape but in reality I'm doing better than a lot of people who smoke, drink and don't look after their health even though their stats are better than mine.  I keep singing to keep working the lungs directly. I give concerts even with damaged lungs, it has affected my voice but it's time to work on my core muscles to get the breathing support I need.  I'm still singing and people still enjoy it so the circle goes round.   

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    • Posted

      Hi Ezme. My god, you have been through so much! I certainly shouldn’t complain about my rather insignificant SOB in comparison. 

      It’s amazing to hear that after 22 years of fighting you are now over the worst of it and you are getting to enjoy life with those you love, inspirational. 

      I have started a journal as you recommended. As I climb the same stairs at home and at work each day jotting down how long recovery takes / if I have a coughing fit should give some sort of sense of improvement or deterioration. 

      I am asking questions here as so far the doctors I have seen have answered very few with any certainty. This is more than understandable as I have not yet had my biopsy so Sarcoid is only their best guess. As well as that, as you mentioned, everyone is different and reactions to Sarcoid and the treatments will vary vastly between individuals.

      Thanks again for your time and advice Ezme, I will take it all on board. I hope you have continued improvement and when you are seeing your goals come to fruition, you can smile and appreciate it all, I’m sure you have and will continue to! 

      Guy

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    • Posted

      Hi GAB85,

      How are you doing?  Thanks for your kind words.  Good to hear your keeping track of your daily progress.  It can be a nuisance at times but it's a great way to build your knowledge of your condition and it means you become the expert in what is normal for you.  There will be people who tell you some of the symptoms you experience are not consistent with sarcoid but they aren't always up to speed.  I had a lesion that just appeared on my back, it stayed for years and disappeared as suddenly as it arrived, they said it wasn't sarcoid but it was because the name of this condition means that is related to the flesh.   People need to be made aware of sarcoid and I think the researchers need to be listening to patients before they dismiss something as not being part of the normal range of symptoms.  Your journal will help to draw attention to the frequency and severity of anything they don't as yet recognise.  A word about the biopsy. Keep your eyes closed throughout the procedure, it's more bearable.  I'm no medic but the cough seems to be a good indicator especially if it's unproductive, no sputum. That's classic sarcoid especially on exertion because you're lungs are trying to clear.  Another sign is back pain in the lung area.  If you get your doctor to sound you they probably won't hear anything because the tissue is damaged not the tubes and flesh doesn't make a sound.  Anyway, I don't want to fill your mind with things you hadn't even considered.  Just be proactive as much as you can, keep notes, look after your health in general, try to get some exercise everyday - stairs counts and remember to take a few minutes to do some deep breathing just to remind the lungs they have a job to do....singers tip:  breathe right down to the pelvis, sharp intake of breath while flicking out the buttocks. It's more like you did when you were a baby so it helps the lungs and supporting muscles to keep working effectively for as long as possible.  No matter what the results are life is what you make it even if you have to live with a few restrictions.  Ask yourself: what can I do today because yesterday is done and you haven't lived tomorrow yet so live in the now and do what you can remembering to store a little for tomorrow.  Live in hope Guy because you can be master if you need to be.    

       

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  • Posted

    To answer your question with myself before I was diagnosed with Sarcoidosis they had to put me on Steriods/Cortisone treatments not knowing what I had to reduce the lymph nodes in my lungs which were suffercating me as my lung capacity was at about 30%, but once the Specialists knew what I had which was some six months later (this was 1986 aged 21) they then adjusted my medications but I started feeling a difference maybe in the first 2 weeks but then I was bed ridden for 3 solid months only doing the minimum very slow process for me as my fatigue was cronic just even trying to walk to my letterbox I had to go down 3 steps then a slight grade of 20% only a distance of 20 feet would knock me bad then walking back but stepping up those 3 steps was murder, I slowly but surely worked on myself with breathing exercises going for short walks then on an exercise bike for if it was raining something as simple as the common cold could set me right back big time as my immune system has been compromised somewhat it's all management with myself but that would be for all sufferers of this disease, so after 5 years of medications and extensive testing I am now fairly fit but I do run out of puff on occasions especially when running around exerting myself, but to answer your question it can vary from person to person as each person may have different areas effected I hope they improve your situation soon as they have improved the medications since when I was diagnosed, take care as it will be hard at times but try to always keep yourself positive.

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    • Posted

      Thanks for the reply Chief.

      I am yet to have a biopsy so am not 100% sure it is Sarcoidosis, all I know is it is an ILD and sarcoidosis is the doctors best guess at the moment. It sounds like they are dealing with me with the same process as they did you, steroids to help with the swelling while they diagnose the source of the problem. How was the Sarcoidosis finally diagnosed for you? Biopsy? 

      Good to hear you are doing well now and I am taking your advice and staying possitive. Early days for me at the moment but knowing people like yourself have been through it but are now 'fairly fit' is reassuring. 

      Thanks again!

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    • Posted

      Hello GAB85

      To remember back just prior to Biopsy the had tested Bloods at all points from head to toe, Urine, Saliva/Sputum, tested at Eye, Ear & Throat Hospital checking/testing Eyes, Nasal samples of sinuses and Ear wax testing, Breathing tests, Fatigue testing also had the embarrassment of Fecal testing these came back that I had a very large number of White Blood Cells compared to my Red Blood Cells, I asked the question what does that mean Specialist were concerned as that is usually a sign the body is fighting something like a virus or infection but that showed nothing common apart from larger normal amounts of bacteria in my salivary/sputum tests so they also had me on Antibiotics just in case this got worse, I was very low in calcium, vitamin D was also very low also my body was losing many essential vitamins due to excessive urination and sweating.  It may have been the of the first month I went in for Biopsy as they had eliminated 2 or 3 things nasties but hadn't confirmed there were at least another 2 more but needed a Lymph node or nodes removed from different areas they took one lymph node out as I had requested it to be taken it was annoying the hell out of me for it was near or on my collarbone if I yawned or coughed it would flick over giving me electric shocks up my neck and down to my fingers and would go numb, so that was removed they did that one just local in the clinic while awake the other Lymph nodes were taken out of the chambers of my lungs they remove a few each side being the bigger nodes also to open it up a bit for me to breath to get to these they cut into my neck approx 50mm below my voice box then cut approx 50mm along right on the Manubrium top of rib cage to get access to these, the Steriods/Cortisone had only reduced slightly at this stage and for good measure they removed a large Lymph node at my groin area the inner leg whilst I was under.  So with this test they had eliminated 2 other nasties from the list and had concluded that the Lymph nodes were all non cancerous but normal in structure but were inflamed due to the body fighting itself from whatever? They then said this has now got them to believe I had a rare disease called Sarcoidosis they then explained this in detail but were also intrigued in me as I had Doctors and Student Doctors hovering over me like being a guinea pig this was back in 1986 and to this date I haven't meet anyone that has had or is suffering apart on these group forums. 

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    • Posted

      Thanks for the detail Chief. 

      They mentioned that I would need an open lung biopsy rather than Bronchoscopy, there was no explanation as to why this was, it may be simalar to your situation where they are targeting one or more spacific lymph nodes for testing ... this is a guess though. I am lucky enough to only have swollen lymph nodes in the chest at the moment. Ones in the neck or groin that cause discomfort would be a nightmate, sorry you had to deal with that.

      Strangely enough I also have a severe Vid D defficiancy at the moment, I was on a quite high daily dose but they changed me to a weekly intake at over double the combigned daily dose when I was admitted to hospital ... clearly the two months at the lower dose was not having the desired effect.

      I am pleased to say that the doctors that have been seeing me, although not very good at giving advice / calming my nerves, do seem to have a fairly good knowlede of Sarcoidosis, this is no doubt down to unfortunate people such as yourself being their guniea pig! So thanks for that!

      I had never heard of Sarcoidosis before the issues I am having, weirdly a friend of a friend has just had a flair up after 5 years of being clear and although it was not diagnosed as Sarcoidosis first time around (a couple of months on steroids cleared things up for her) it is now looking like that is the source of her issues.

      Thanks again for the reply.

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    • Posted

      Hello GAB85

      I guess with my Biopsy they wanted a clear access to the lungs as my throat was also swollen so it may have been clearer to get to but I forgot to mention that they had already earmarked me for surgery to my lungs for removal as much Lymph nodes as possible being one lung at a time due to possible collapse or other problems if my progress wasn't going as planned with the Steroid /Cortisone treatments.  My dad said to them as a joke why not have a zipper on him so as to save re-cutting each time, that was my Dad's way of breaking away the unknowns with a little dry humour, as it was also a big battle for him with these unknowns of this disease and at 68 with his health declining at the time (recovering from a heart attack) but this gave me the strength to keep strong around him reassuring him that I was ok. 

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