Sarcoidosis - not enough care and attention given to sufferers

You are spot on Morag. Stopping steroids suddenly can have disastrous consequences. Steroids knock out the thyroid glands ability to make thyroxin and sort of takes over the job of regulating the thyroid and parathyroid and if you stop taking steroids then you throw your body into thyroid crisis. If you gradually come off the steroids then the glands have time to pick up the slack. Hope that makes sense. I'm in Glasgow too, Morag but there is also a higher instance of lung cancer here so it's another reason why they are quick off the mark to refer to the respiratory specialist. My GPs don't read letters coming from the hospital half the time. In fact one GP who was having a melt down one day last year showed me my on-line record and there were all the letters unread! I was so incensed. Although, having kicked up a big fuss over my treatment the hospitals are now writing to me at the same time they write to my GP. You would think that they would pay better attention to a disease that is rare wouldn't you? If I ever came over something I didn't know I always got out my medical books and had a good read. That way I was always able to contribute during ward rounds etc not to say give the patient proper reassurance because I had read up on it. In all honesty I sometimes wonder if Sarcoidosis is as rare as they say or is it just that people are not being diagnosed properly. I would tend to err on the latter. Plus with human migration from country to country, doctors should be far more alert to the fact that they will have patients who are more at risk because of their ethnicity. The longer people are left untreated the more chance of permanent damage and chance of remission.

Personally I don't think GPs keep themselves up to date with different diseases. Nurses have to constantly attend lectures and updates and ensure they are up to date with different techniques for doing things but doctors seem to get away with it. In my nursing life time I've lost count how many times they changed the resuscitation technique! I have never been on a course where there were doctors present and it makes me very angry because I have been in situations where a doctor was carrying out treatment one way and I had been taught differently, but the doctor always takes the lead and you have to do as he says unless of course you know it to be detrimental to the patient's wellbeing. I'm absolutely with you Morag on sitting them all in a room and making them converse with each other but as they all have the 'God' complex I imagine the talks would break down very quickly. When I worked with junior doctors on the ward they always took their lead from us because all they knew was theory and the 4 walls of medical school. We used to tell them that if they learned nothing else they must listen to what their patient was saying. Goodness only knows what the answer is but I'm saddened to see how bad the NHS has become.

Oh God! there I go again on my soapbox ha ha! I really get your frustration though Morag. In fact I think we are all at one with it. Soapbox June.

Hi all,

I think it happened because of the timing. I got an appointment to Rheumatologist first, back in Feb, took me ages to wait for this appointment. It was her who got me the steroid injection to ease my joints and as I was also complaining about increasing shortness in breath she referred me to X-ray, Respiratory clinic breathing tests and later on CT scan as the X- ray was not good. She also thought back in Feb that it is Sarcoid I have got. When she got results, she was pretty concerned and when she saw me in April she referred me to Pulmonary specialist as well as prescribed lower dose of Steroids, advised me to start taking them and said that pulmonary specialist will most likely up the dose. When I saw Pulmonary specialist ( a professor) few days later she was not happy for me to take steroids, as it could also be lymphoma or TB and said not to take them at this point and ordered the lung bronchoscopy / biopsy and all new tests (CT scan etc). The results in April came back slightly improved than the ones in March and biopsy showed 100% Sarcoid, as there was improvement she decided not to put me on steroids at all. Also Pulmonary specialist was not very impressed by me having had the steroid injection back in Feb (she never realised from my medical records it was me who mentioned it). She then run another set of tests end of May/ start of June and they showed even more improvement. Seems to be battle of Powers here. Hence the reason my hubby thinks I should be overseen by one- Immunologist to avoid the issues like this above. I am also near Glasgow.

MM

Some how my old reply appeared again.. so I am re-writing , my apologies

I was not even aware that coming of the Steroids would be an issue. I was on my 2nd week after receiving the steroids when I saw the Pulmonary Specialist for the first time, all she said was not to take them, she didn’t even ask how long or if I had taken them at all. I did say that Rheumatologist advised that the dose might have to be upped but all she said was that I do not want you to take them, it could be TB etc.. Maybe the thyroid issue is the reason I started piling on weight? I have put on almost a stone since then and I eat very healthy, all home cooking and I have not changed any of my normal eating habits, if anything I have started drinking less red wine.. Hope it is not permanent. With this rate I will pile on a stone a year.. where would this end up at..

No wonder you didn't know who to turn to for advice, MM. Sadly there is a one-upmanship mentality within the medical fraternity (not all but some) and the poor patient gets caught up in it all. I still say that they shouldn't have messed you around with the steroids though. I know there is a line of thinking that some doctors don't use steroids in the milder cases of Sarcoidosis, believing that it will burn out/go into remission on its own. However, that is only true of the milder cases and yours didn't sound like a 'mild' case and either way they shouldn't have stopped them suddenly. It wouldn't do any harm to be referred to an immunologist and at least he/she would know what they are talking about rather than spitting out several different diagnosis and putting you through worry and upset. Good for you for keeping it together the way you have but I think your hubby is the best one to listen to because he is seeing what is happening to you both physically and mentally (by this I mean that no matter how we hide things from others our partners always see through it). Wow! that's 3 people in the same area with Sarcoidosis! Maybe my theory that more people have it than 19 in every 100,000 in UK is true! You keep your chin up anyway MM and I hope you see the right person to help you soon. Good Luck, June

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The steroids are the reason you put on weight, MM That's why I refer to myself as a melting Jabba the Hut ha ha! I have no appetite and because of my other medical problems I can really cook for myself even if I felt like it, but I have piled on 2 stones. I know I'm in a wheelchair so not getting any exercise but I just can't face meals so there is no reason other than the steroids for my weight increase. I think there are only a few people who get away with this side effect. The worse news of it is that it can take a very long time to lose that weight too (I'm talking a year rather than months). I never come up with good news do I?

HI MM,

Your case history sounds very similar to mine.

Cant treat you for anything else ...just incase it is TB......

It was the rheumatologist that got things moving for me and initiated my 1st biopsy.

On seeing the rheumatologist last month she asked me to have more blood test to determine my levels as she was considering goving me a 5 day blast, but it appears that they were ok as I havent had a call re the medication.

Thank you all for all your advice and support,

Although the Pulmonary Specialist is the leading one on my case it is the Rheumatologist I like seeing. She seems to be really trying. However as the Lungs “override” it is the Pulmonary who decides. Seems to be that she is not happy with anyone else’s decisions (her unprofessional pulling faces says it all while having a conversation with her). Being a professor she obviously has to have the knowledge but with knowledge the bedside manner seems to have disappeared (I don’t know if she ever had one) and replaced by arrogance. But then again I sometimes question that knowledge, as other than inhaler, she has not ordered any medication for me. It has always being Rheumatologist, who seems to be more innovative and is trying different options to make it better and easier for me. GP thought I had RA and he referred me to Rheumatologist when all my RA tests came back negative although I had unusually high levels of inflammation in my blood. He never suggested the option of Sarcoid at all. He said that he doesn’t always even get one patient a year through his door with Sarcoid. But I am with you on this, I think it is seriously under diagnosed. Especially looking at the trouble and time everyone has gone through to get anywhere. How many have given up?

MM

You know even though the pulmonary specialist seems to call the shots it's actually up to you who you go along with. You can stop seeing and agreeing with any of the doctors. So if you feel that the rheumatologist is more capable then you might want to consider telling her and le4aving the pulmonary specialist. That's the trouble with this disease when it attacks so many other areas of the body with a specialist for each it's hard to know what to do.

I actually know of another person in the Glasgow area who has sarcoidosis, my pal's mother-in-law has it too though I think its pretty much in remission right now.

So I'm in Dumbarton - go west, past Clydebank and if you get to Loch Lomond you've gone too far. And handily for me, the relevant consultants all do outpatient clinics at the Vale of Leven Hospital. What about the rest of you?

The respiratory consultant I see is pretty knowledgeable about sarcoid which is good. The renal consultant isn't so good and when I got a final diagnosis was thrilled because she hadn't seen any cases for about 4 years. She was also the one that got worked up about a lymphoma possibility and made an urgent referral to Haematology for me, phoned me late on Friday afternoon to tell me CT scan results were in and she'd got me a referral so to go along to Haematology on Monday. Yes it was good she was on the ball but the fact that she wouldn't explain what was in these results to require the referral was bad for me. Just meant I spent a weekend convinced it was something really nasty; if she'd told me what she was worried about I'd have been happier. At least I'd have known what I might be dealing with!!

Tell you what really works if you can manage it. Find a bunch of friends, go out for an evening and be the raucous group that everyone else tuts about in a restaurant cos you're laughing so much. 10 of us went out for a Christmas dinner last night and it was the best therapy I've had in a long time! Definitely to be recommended

You are right Morag, there is nothing worse than being left worrying what is wrong with you. I am shocked that even today doctors keep vital info from patients. It's ridiculous. I know where Dumbarton is. I like the train trip from Dumbarton to Glasgow because I think it is really pretty down by the water and the countryside. I haven't been to a party for many, many, years and I know it sounds terrible but I actually have no friends at all. There is just no way of me meeting people but my cats keep my company. I think your idea of getting out and laughing is brilliant. Just get the endorphins going ha ha!

Hi everyone, just checking that everyone is doing okay now that the colder weather has arrived. Make sure you all keep yourselves warm and my strong suggestion is; hats on heads and scarfs round mouths. Cold air can make your cough much worse so be sure to pull your scarf up over your nose and mouth. Also try to breath through your nose if you can as it gives the air you draw in a bit more time to warm before it enters your lungs and of course the air is also filtered more due to nasal hairs. Try and get some rest before Christmas day to try and stave off the fatigue. Maybe try and get several early nights in the lead up to Christmas. Don't turn down any offers of help, you'll be tired enough without trying to do everything yourself. Above all.....enjoy yourself and remember it's only one day so don't over do it. Your health is far more important than whether someone got the present they wanted or you cooked the dinner to suit everyone. Stress make sarcoidosis worse so if you are beginning to feel stressed take yourself out of the situation and try and relax for 30 minutes. Maybe listen to your favourite music or take a leisurely soak in the bath, what ever works for you. I had a great week last week. First I received a letter from the hospital to say that 'the mass' in my left of abdomen is nothing sinister so I am delighted at that and then I got a phone call from Social Services occupational therapist who arranged a visit. My daughter and I were delighted as it has taken over a year to get any sort of help. The therapist was so helpful and she managed to get me a special reclining chair so that I don't have to sit in my wheelchair all the time and I can nap during the day when the fatigue hits. I still don't have a Social Worker but at least someone is finally listening and helping which is a huge relief. I'm off to the respiratory clinic tomorrow so will let you know how I got on. Wishing you all a fantastic Christmas and here's hoping that more of us (if not all of us) go into remission in 2014. June

So is it Official Respiratory Week this week? Cos I have an appointment with the respiratory consultant on Wednesday afternoon.

Had a major panic session at the end of last week about how much I had to do before Christmas just writing cards and wrapping presents plus work and all sorts. But have taken a deep breath and decided that if some of the presents don't get posted on time then my friends will understand. I can only do so much and then I get tired so I need a break.

Will post again after I've been to the clinic

Good luck Morag and June in the clinic this week, hope all goes well and happy holidays to you all. I agree with you June, there is no need to try to impress everyone, just try to relax and look after yourselves x

Love & health

MM

Hi June. So glad to

Hear things are finally improving for you and ypu are getting the help and support that you need and deserve

Good news re the mass.

I take note re the other comments if trying not to do too much and getting stressed but it is human nature for us to carry on and aim to have everything perfect

Wishing ypu all a lovely Christmas

Hi Ailsa June, Glad to hear your news, things seem a bit more positive for you. Good advice for everyone so thanks for that. Cannot believe Christmas is almost here I don't have much shopping done yet, but I'm trying to get Christmassy. I

still have puggy cheeks thanks to my sinuses but I have the Chest clinic the last week in January.

Thanks to those who took the time to send their sympathies after the loss of my 2 sisters and my brother recently. It was very much appreciated.

Hope you all enjoy Christmas and keep positive. It will soon be spring, the days

start to get longer in 2 weeks time... Slowly of course!

Happy holidays and Merry Christmas to everyone with best wishes for a better

year in 2014 Love to all, Helen