Sarcoidosis - not enough care and attention given to sufferers

Thanks Linda,

I'm an old hand at Sarc. I was formerly diagnosed in 2002, but I had seen a consultant who said it was probably Sarcoidosis in 2001. Knowing what I do now, I can trace my symptoms back to the mid 1990s. I have considerable fibrosis and I've a suspicion that it might not be as bad if they had picked it up sooner. I was going to my GPs at regular intervals trying to persuade them that something was wrong. They were treating me for 'an allergy' but refused to send me for allergy testing. In the summer of 2001 I was coughing so much my family insisted I see the GP again. The woman I saw was so rude and dismissive I refused to go again for several months, until a work colleague said I was like 'a goldfish out of water'! So I did go back and caused instant panic. They finally sent me for a chest X-ray which caused the radiographer also to panic. I was sitting in the corridor in a gown waiting for the results when the man rushed out and said, "oh Mrs Hand, it's bad news!". Then the surgery rang and told me to go straight there. I was terrified, of course. But when the consultant, who was an old school gin-and-jag type, finally gave me the diagnosis, he said"you have something boring and benign". Well, it might bore you, dear, but you try living with. As you can tell, this all still makes me angry many years later.

Happy New Year, health, wealth, joy and happiness to you all. And welcome to our new member.

My Christmas was great and a lot better than the new year. I actually managed the first pretty well. Family was very supportive too. It was only us and our 2 teenagers on the 24th and we shared the food making. 25th I only had one friend coming over with her family. Although we made far too much and a large variety of food, hubby was a great help. It's the new years eve when I was tired, I had to work half day and then this silly belief that house has to be spotless before the bells did not do me any favours. Although I did not have to prep any food (my friend returned the favour) I was too exhausted and therefore also moody to enjoy my night.. It would have been better to stay home and relax front of the TV. .. I know better next time... My joints are still bothering me and lymph nodes have been pretty sore. Lungs seem to be OK though.. Extreamly tired but I am sure the weather is not helping.. I have also developed wierd "ladybird" like skin coloured (not sore) dry spots on my upper stomach. They are tiny and there must be about 30-40 of them.. I dont have them anywhere else..

All the best to you all,

Love, MM

Di,

It is interesting to hear that you have been suffering Sarcoid for such a long time, when it is 'supposed' to

be a 3 year illness with remission after 10 years, this is clearly not the case then is it!!!

It is eveident from what you are saying that it is only in the most recent years that Sarcoid has become

more commonly known and dare I say easier to diagnose.

How awful when theydid do the chest xray to scare you into panic mode, very unprofessional indeed.

So the horrid consultant that gave you the news classes us all as boring does he.......lets hope he is not still practisicing as he clearly has no people skills. let alone to be dealing with stressed ill patients.

You have every right to still feel angry, and it is good that you have shared your story with us, as this will make all of us more aware of how thibgs are dealy with.

But thankfully seems a lot better in some ways a few years on down the line.

MM,

Sorry to hear you exhausted yourself, I think we are all culprits of that, although our friends and family are

always telling us to slow down ect.

A rash seems to be a common thing in one way or another with all of us now doesnt it!

I had family staying from 20th - 2nd and only really had 2 days off of cooking but did have help other times.

Finally I had to submit and I sat down after dinner on 1st Jan at 5pm and fell asleep for almost 2 hours,

something I never do.

But at least I recharged my batteries a little.

My appointments are all starting again as from next Friday....so it will be interesting.

Hi Linda, there are two forms of Sarcoidosis. Acute sarc lasts 2-3 years as you have been told. Unfortunately, for around 15-20% of suffers there is a long term chronic progressive form. This usually comes on more slowly rather than as a sudden illness, so my experience of an increasing amount of symptoms over several years is typical. In my case it has caused lung fibrosis which is permanent damage, and also other lung diseases. I also suffer from haemoptysis - coughing blood - if I over strain my lungs. I recently did a lung rehabilitation course at Harefield Hospital which has helped. But I do get very breathless on exertion, and tired. Long shopping trips are a thing of the past. I do a lot of online shopping including groceries as I just can't carry heavy bags.

Happy New Year everybody and welcome to Di.

Had a frantic run up to Christmas with work, work and more work and did more between Christmas and New Year. I'm massively behind with client deadlines but as my main client had a network failure on Hogmanay I blame them not me for that fact and I'm trying not to kill myself playing catch up.

Medical appointments start up again on Monday with my own GP - blood tests for the respiratory mob so the consultant can decide whether or not to reduce my steroids again. Hoping she says yes to that. Because they need to save money I can't persuade anyone to prescribe 2.5 mg prednisolone tablets and I'm fed up trying to chop the 5 mg ones in 2 and then not lose the 1/2 till the next day. Its either that or take 10 mg one day and 5 mg the next but that seems too complicated to remember. For crying out loud how much can 2.5 mg tablets cost!!!!!!!

And thats todays rant

Morag

Hi Morag, Good luck with reducing the steroid dose. I don't expect to ever be allowed to reduce my prednisolone below the 10mg I'm currently on. I also take methotrexate which is meant to be a steroid sparing agent and am on a bronchodilator called Fostair. Does anyone else use it? I also couldn't get 2.5mg prednisolone when I was weaning down from a higher dose, but my GP did agree to give me 1mg tablets so I did 12 rather than 12.5 which was much easier than trying to chop a tiny pill in half! And what difference is half a milligram actually going to make?

Work is definitely an issue. I took voluntary redundancy from my main teaching job last summer. I just couldn't cope with the travelling as well as the work, which wasn't the 'sit at the front of class' type of teaching. I still have a couple of evening class and some freelance, but I will have to find something more. Any ideas what a 58 year old who sounds like Thomas the Tank Engine when they walk about could do?!

Hello Di and a huge welcome to the forum. My heart goes out to you for the most shocking way you were treated before, during and after your diagnoses. Unfortunately the medical hierarchy spew out far too many consultants who have delusions of grandeur and they never give a thought to their bedside manner and just don't have any idea how to comfort and support patients. Sarcoidosis might be a boring disease to that horrible consultant you had but the longer a disease takes to diagnose the more damage it does to the person. You just have to look at the damage a bad case of bronchitis does to understand how much permanent damage undiagnosed Sarcoidosis leaves in its wake. You are to be admired for putting up with so much and I am glad you had friends who offered support and pushed you into going back to the doctor. Sadly there is no cure for Sarcoidosis and although the text books may say it usually goes into remission between 3 and 10 years it's more like a figure they have plucked out of the air to shut the patients up! Until they come up with a reason for us contracting it in the first place then they will continue to have little clue as to treat it or how it will progress in individual patients. You went so long without a concrete diagnoses that the sarcoidosis had lots of time to do its damage. I have an excellent respiratory consultant that I see but he refuses to agree with me that the disease started back in 2001. I had only been in China for 2 weeks when I was struck down with what was thought to be severe bronchitis. In the following 41/2 years that I was there I had 3 more very bad episodes abbreviated by several lesser attacks. When I think back to the other symptoms that I had at the time I am totally convinced it was the beginning of my Sarcoidosis. It would therefore mean that I have been having attacks and remissions for almost 13 years so that makes a nonsense out of the text book case! I think some doctors try to fit a patient's disease around the text book case rather than just using the text book as a guide.

My doctor also panicked when they saw the chest X-Ray and took 30 minutes to tell me he thought I had end stage lung cancer! Even if it had been he could not have delivered the news more inappropriately so I really can commiserate with you.

Unfortunately scarred lung tissue cannot heal and go away and I would certainly have thought that you are right when you say there is little chance of you ever coming off the steroids. Just make sure they are keeping an eye on your bone density and if you have not already been for a DEXA scan then tell your doctor you want one and don't take no for an answer!

My consultant believes that 7.5mg prednisolone is the best maintenance dose and only increases it if symptoms start to increase. I'm currently on 10mg but have to reduce it as my symptoms calm down again.

I hope now that you have found us you will feel at least supported by everyone here. We may not be able to offer a lot but everyone here has an opinion and suggestions on how to ease the symptoms. Also we actively endorse a good old moan! Whatever is getting you down get it off your chest it will certainly ease your burden. Kindest regards, June

Well said June. So glad to you are starting off the new year with more valuable information

I'm glad to see that for the most part everyone got through Christmas and New Year almost unscathed and that friends and family rallied round to help out.

I had a quiet Christmas and even quieter New Year. My daughter stayed on her diet (good for her) and my granddaughter aged 12 asked for pasta for her dinner so that just left my son-in-law and me. My appetite is nil these days but he ate a hearty Christmas nosh! Unfortunately my granddaughter had a chest infection which got worse as the day went on. My daughter managed to get her to the GP between the holiday days and he put her on....30mg prednisolone!!! I was so furious. She is such a slightly built child and he didn't even send her for an X-Ray to see what was going on. He said he thought she had asthma! She doesn't suffer from asthma so why it would suddenly hit her at age 12 is beyond me. Both my children suffered episodes of bronchitis when they were growing up and so has my granddaughter. That's the trouble with genes, we tend to pass them on!

She is off to the respiratory clinic on the 9th January. I bet you all know what first thought was! I'll let you know how she gets on.

My rash unfortunately didn't improve in time for Christmas and I rubbed my back in the bath and stripped an area of skin off! I didn't realise my skin was so fragile on my back so now I am having to be very gentle with it. It's terribly sore and any touching of the rash makes it bleed. I'm still choking on food and drink so am having to be extra careful at mealtimes. The profuse sweating has also become very bad again and I'm sick of the sight of the bath as I seem to be in it most of the day because the sweating is so bad! I'm sure the weather must be affecting everyone who has pain in their joints due to the sarcoidosis so it's just a case of trying to keep yourselves warm and remember to put on gloves, scarves and hats when going out.

I have to say that my saviour throughout the holidays was my riser/recliner chair that my OT sourced for me. It has made a tremendous change to my life. No more falling out of my wheelchair when the fatigue takes over. The moment I feel the fatigue I'm straight into my chair and asleep within 5 minutes. I never would have thought a piece of furniture could make such a difference to someone's life!

I didn't get any results from the sleep study they did so I'm guessing everything was normal although being Christmas week when the test was done they might not have completed the results yet. Well at least I still have my trusty cat to waken me if my breathing goes funny ha ha!

Take care all and lets hope we see some positive outcomes in the New Year. Kindest regards, June

Oh June so sorry to hear that your granddaughter is experiencing chest problems and so young too!

Sorry to hear your rash/blisters have not eased

Along with the other ailments you are getting

Let's hope there will be some improvement for you throughout the year

Di, I forgot to say I am on Seretide inhaler but find it adds to the misery of having oral thrush and my immune-suppressant is hydroxychloroquine and prednisolone. My consultant wanted to give me some of the chemo medication as an immune-suppressant but couldn't because I am so sensitive to any form of medication and always end up suffering the side effects. He also got around the lack of 2.5mg prednisolone tablets by making me take a 5mg one day and a 10mg every alternate days. That way it worked out at 7.5mg every day. If anyone is having problems then I'd just take it that way if I were you. It beats breaking pills up

Thanks Linda. Yes it is worrying about my graddaughter as we went through this before when she was much younger and I can remember practically screaming that she did not have asthma and to take her off steroids. They just don't seem to care how much damage they are doing to her growing body. I so hate the medical fraternity in Glasgow. It is frightening how many mistakes they make and how much is swept under the carpet.

As for me, I'm happily plodding on. Although now I look like a spotty Jabba the Hut ha ha!

You know one thing I notice about us all is that similar symptoms seem to flare up at the same time for us all so it would be interesting to know if there is a reason for this, i.e. change in weather, need to have heating on etc etc. There must be some connection somewhere.

One theory the respiratory consultant that I see is that some symptoms are related to sunshine. One of my main symptoms was hypercalcaemia, causing problems with my kidney function and also having the renal mob in a panic that I had lymphoma. Anyway Dr Ling, respiratory, has noticed a number of her sarcoidosis patients all tend to show signs of raised calcium levels during the summer, when there's more sun so more vitamin D around in your system, making it more likely that you hold on to calcium.

Don't know if its right or not - neither does she to be fair, its just an observation she's made over the years. She seems to be trying to find out things that might help her patients and I also like the fact that she tells it to you straight without messing around.

As for those with oral thrush, if you can get rid of it, my pal is a nurse on a respiratory ward in Norway and they have guidelines that they give anyone taking inhaled steroids. Maybe I'm teaching my granny to suck eggs but Rachel would say Gargle every day, preferably every time you use the inhaler but definitely once a day. And clean it every 2-3 days.

Hi Morag. Believe it or not hypercalcaemia in Sarcoidosis was first noted way back in 1939. You'd think they would have made huge research findings in all that time wouldn't you? Your respiratory consultant needs to update herself if she is only just noticing the connection of hypercalcaemia in Sarcoidosis as it's a defined symptom! There is a risk of hypercalcuria (calcium in the urine) and lowered bone density because of the abnormal calcium metabolism in Sarcoidosis patients. People who have hypercalcaemia and hypercalcuria can end up with nephrocalcinosis (excess calcium in the kidneys). It accounts for half the patients with sarcoidosis who have renal impairment. There was also a link noted between raised levels of vitamin D and sarcoidosis over 50 years ago! This is also one of the reasons we are told to avoid sunlight. Not just because our eyes and skin may be hyper-sensitive but because we get our natural vitamin D from the sunlight and with our vit D levels already raised because of the Sarcoidosis more is not what we need!

In Sarcoidosis the PTH hormone which is made by the parathyroid glands is suppressed because the calcium levels are high. Steroid treatment is the drug of choice as hypercalcaemia responds well to it. Thankfully it is very rare for a Sarcoidosis patient to present with severe hypercalcaemia and they often present with low grade hypercalcaemia which thankfully allows time to treat the problem before it causes severe renal and bone density problems. Of course on the other side of the coin is the fact that a lot of Sarcoidosis patients are not diagnosed for ages so any underlying problem is able to 'fester' away without detection until the health of the patient becomes so bad that the doctors finally pull out the stops to get them diagnosed.

Sorry it's a bit heavy going but then the human body is like reading a mystery book at times. I hope I've made some of it understood though.

One thing I've found is that I cannot tolerate salt any more. I used to enjoy the odd bag of crisps etc but now salted foods taste horrible to me. It's as though someone tipped the whole container of salt into the bag and all I can taste is salt!

Anyone else have this problem or has a problem with other food?

Oh! yes and any fat makes me sick e.g. Flora on bread, butter, cream etc, etc.

You are absolutely right Morag. I had completely forgotten that I was told to gargle after every inhaler use! I am an idiot and could have spared myself the discomfort of oral thrush. What a ninny! Thanks so much for reminding me. I promise I will gargle from now on - most definitely!

Love and hugs,

June