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

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

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.

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.

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! 

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.   

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

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.    

 

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!

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. 

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.

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.