Sarcoidosis - not enough care and attention given to sufferers

Hi All,

I am new to this forum and decided to register as by reading all of your stories finally made me feel that I am not alone in this. I had my first noticeable symptoms in October 2012 (I was then 35 y old). It started with fatigue, tiredness and all my joints felt stiff and sore, so I put it down to possible flu, however a week or so later it still did not come to anything and I started to panic a bit. Then my ankles suddenly swell up and were sore to touch (even the slightest touch), they were red raw and really sore for about 8 weeks. I still had to continue working, 2 kids and a mortgage, just don't have a choice. Walking home from train station took me more than a double time and tears in my eyes all the way.. On the 2nd day my ankles swell up so bad I could not get my boots back on (wide fit and comfortable). Thankfully I had flip-flops on me to wear at work which I had to walk home in (heavy rain). I had parallel joint pain in many of my small bones and some bigger - hands, wrists, some fingers, back of my legs, knees, elbows. My GP thought Rheumatoid Arthritis and I had few blood tests run (put me on Naproxen- anti inflammatory). The tests all came back negative but my blood showed extremely high levels of inflammatory, so GP referred me to RA clinic in Hospital (towards end of Nov). Couple of weeks later I started feeling really breathless and around Christmas I got this nasty kind of a dry cough, mainly in the mornings, it did not feel like a cold. I finally got my referral end of Feb to Rheumatologist. She seems really good. She gave me steroid injection and referred me to a X-ray and got bloods taken. X-ray showed unusually swollen glands and blood ACE levels were super high (cannot remember the figure but it was like tens of times higher than normal). She then ordered CT scan and breathing tests and referred me to pulmonary specialist. I went back to see her mid April and she said that most likely cause is sarcoid and prescribed me steroids, before I started taken them (to get the dosage right) I met the lung specialist couple of days later, who did not agree with the Rheumatologist and postponed the steroids. She ordered all tests again, as well as biopsy. I am going to see her again tomorrow.. Saw my Rheumatologist end May who said that biopsy returned negative to TB and lymphoma and she was sure again of the sarcoid, ACE levels were still really high. The glans and nodules are not as swollen as the 1st CT scan but the lungs themselves are, so there is some improvement and something (didnt quite understand I think the tissue) is worse.. I also get really sore under arms and back of my knees, my joints are still really stiff, I am more tired as ever, breathless and with this annoying cough, I also get pins and needles in my hands, face and forget sometimes how to type.. I know how, but cannot.. It takes a lot of effort to get my gramma right. I am short tempered , emotional and probably really unreasonable to my loved ones. Hoping to get some answers tomorrow.. It is now 9 months on and still not much further on.. Still taking naproxen, so I would not have the swollen ankles again.. Rheumatologist said that sarcoid is as rare as it is, mine with the joint issues how it's presented, even rarer yet.. she also thinks it is not acute as it has been present for long and various symptoms are just creeping up..

Love to you all and health

Hope it will work out for all of you, we are in this together. Ps ailsa june- thank you for starting this discussion - it has given me some hope back

Hello MM and welcome.

It is such a relief when you find someone with the same 'problems' as yourself and you realise you are not alone.

We all seem to be reading out of the same hymn book albeit that there are a few of all our symptons that differ to others......but we all know we have them it is just getting the doctors to understand and get it right.

I have learnt so much fromt this discussion and I hope you find it as helpful.

Thank You Linda, I appreciate your support and kind words x Hopefully I get some answers and possibly

medication tomorrow to help me. Just tired of being tired all the time.. and I am getting these awful night

sweats too, which is not pleasant at all in this weather. PS, my lung specialist said that night sweats are not common for sarcoid and thats why she thought I might have TB, which I dont according to biopsy. These sweats seem to be one of the most common symptoms for sarcoid tho..

Love

MM

Hi MM and a big welcome to the forum. This is exactly the reason why I started this forum because everyone so far who has joined has said the same thing - "It's great to know I'm not alone". I felt it was bad enough to have a disease that was rare (19 in every 100,000 in the UK) but to feel so alone, with limited answers to questions or even unanswered questions and to have people around not understand how I felt because you can't see things like fatigue. It made me think there has to be others in the same boat even if it is rare and sure enough a couple of weeks after starting the forum Linda joined then slowly buy surely everyone else joined. I feel a great camaraderie here. It's really wonderful. When one of us is down or worried the others rally to support. As an x-nurse I have some answers but not all and it is great to hear the experiences of others and their ideas too. Like for example, the sore mouth a lot of us get from either medication or from the Sarcoidosis itself. Everyone has their solution so sharing ideas and remedies is crucial. There are so many symptoms related to Sarcoidosis as Linda said, we might not have suffered them all but we've all suffered some of them. Please feel free at any time to rant and rave whether you feel angry with family and friends or your GP or just because things are getting you down. If you have a question please ask one of us will have an answer. If you want to know about tests and treatment or side effects of medication just let us know. Everyone here knows something about everything to do with Sarcoidosis. As I said I am an X-nurse but I don't proclaim to know everything but I have done a fair bit of research because it is my belief that not enough is explained about this disease by GPs because they don't know that much themselves. I've even come across some doctors when I have had to go to hospital, who have told me they don't know what it is when I have told them I have Sarcoidosis! It is understandable when you think it is such a rare disease and auto immune problems tend to be lumped together by the medical fraternity which I disagree with because although they are closely linked, each disease is different. Most importantly, never give up hope and if you feel very low as can happen, just type out your feelings here and you will get all the support you need. I might have started this forum (and I am so very glad I did) but I need and certainly get support too, which I am so grateful for.

I'm really puzzled as to why the Rheumatologist cancelled the steroid treatment as it is the drug of choice if they find they need to treat the Sarcoidosis also it would have treated any rheumatic problems too. It sounds like you have Chronic Sarcoidosis rather than acute. That just means that it has been going on for some time rather than acute which means it attacks and then fairly quickly burns out. The acute kind does not usually need drug treatment as it usually resolves itself. I have a really good Respiratory Specialist and I only ever go by what he says. Sarcoidosis always starts in the lungs so I'd go with your respiratory doctor as opposed to the Rheumatologist. They shouldn't mess around with your meds like that anyway as you can't just stop steroids because it is very dangerous. Normally they prescribe high doses with a reducing regime and then when they get the dose down they leave you on a low maintenance dose until the Sarcoid burns out. Like you my ACE levels were off the scale and my lymph glands in my chest were enormous. Both my lungs had very bad shadowing. I had a shocking cough and inside my mouth was a rash with lumps on my palate. remember going to the dentist and he was totally puzzled as to what the rash and lumps were but he was terribly worried they were something sinister. When they initially diagnosed me with lung cancer I thought the lumps in my mouth was the spread of cancer and that I didn't stand a chance so you can imagine the relief when they said not cancer but Sarcoidosis! The bad temper is par for the course and is one part the disease itself and two parts worry and frustration I think. I get the pins and needles and have loads of nerve involvement. I constantly drop things and my dexterity and thought processes are all screwed up. I find it very hard to get doctors to help me regarding this. I recently had conductivity test and was told I have severe carpal tunnel syndrome. They want to do a nerve release operation but I won't go into hospital so it's not an option for me. I also get photophobia when I'm having bad days (yet another symptom) The fatigue is sadly the most awful tiredness you will probably ever experience in your life and there is nothing anyone can do about it. You need to rest when it is at it's worst and although you have to work you really need to get signed off work when you are experiencing the worst of it because of the real risk of you falling asleep when you are at work. Also your body needs to rest during the worst periods of Sarcoid so please consider getting a sick note. Sarcoidosis tends to come and go in cycles or should I say the symptoms do. For a couple of weeks you could experience eye problems, headaches and maybe skin rashes (erythema Nodosum) then just as that clears you start getting breathless with pain in your chest (from the swollen lymph glands) and your cough gets worse. Several weeks later your cough improves but your joints start aching. It seems that you can be suffering with so many different symptoms and any one time that people start to think you are a hypochondriac! Whereas in reality you are suffering all and more of the symptoms but getting little empathy from anyone. My daughter is amazing and is my carer (I have other health issues) but I even hear her sigh on accession when I am complaining about symptoms I am experiencing and I find myself apologising to her. She always says she isn't sighing but I can totally understand how it must get so wearing when someone has multiple symptoms. She says she feels terrible because there is nothing she can do to alleviate how I'm feeling and I think that is true of most loved ones. When you are feeling bad you want to express that feeling but don't want to upset your loved ones - another reason why I started this forum - we know what it's like so can sympathise and give each other the much needed support. Anyway MM I hope my ramblings to you have helped and made you feel assured that this is the place to come if you need us.

Kindest regards, June

For everyone who is part of this forum, I wanted to ask if you would all list every symptom you personally have suffered from, please. Can you put down if you have had symptoms at the same time e.g. headaches and rash. If you've had a rash where was it. I'd like as complete a picture as possible if you agree to do this. I'm trying to do some proper research in order to help in the future with how this disease is diagnosed and treated. Be as informative and as graphic as possible as it will all help. If you cough up mucous/sputum what is the colour and texture - get the idea? I'd strongly recommend that if you all don't already do so, it is a really good idea to start a diary. Write down how you feel when you wake up. What your symptoms are that day. Even if it is just a bad mood day, it's all important. and it is always there to refer back to at any time. You might find that a symptom is triggered by something or that certain symptoms always appear together. It might even help your doctor decide what type of treatment you need at specific times.. Perhaps after a month we can all compare notes. Who knows we might find we have a common denominator during the hotter months etc.

Another point I wanted to make was that at present we are all women but if there are any men reading this and are fellow sufferers or you are awaiting diagnoses, please don't be shy and join us. You will certainly benefit from the support given here.

And finally I just wanted to say to all of you - a huge thank you for all your input and support for each other so far. It's been super to see and I for one am so grateful for all the support I have receive from all of you.

May we all enjoy remission sooner rather than later.

Kindest regards to all

June xxx

Hi June, I was so pleased you have made a post, not only to welcome MM and hopefully put her mind at ease, but to know that you are ok and not having a bad spell like the other week.

Well I am at the hospital tomorrow to see the TB nurse, blood test and go back to the optician to have drops put in to investigate further. The 30 floaters reduced to 10 over the weekend and today 2 large ones.....hopefully they will agree to me driving again but only local and short journeys.

I emailed the TB nurse as my 2 yr old granddaughter has been called forbherbscreeningntomorrow, so I contacted the nurse to see if she really needs to go due to be told by 2doctors there is no trace of TB as yet, she responded by saying yes she must still go as TB does not always show up......grrr.

I am also going to push them for my CT scan as it appears that seems to be the solution to Find out...what I HAVE ACTUALLY GOT!!!

Sorry MM I just spotted your reply to Linda. Actually the night sweats are common in Sarcoidosis and TB so she is wrong but then as I keep saying there is not enough research or information out there because it is so rare. Lots of the symptoms are more common than we think but if the numbers of people who suffer from the disease is small then it must seem to the medial profession that certain symptoms are rare. It's one of the reasons I want everyone if possible to list every symptom they have suffered so I can present a better picture of what a Sarcoidosis sufferer experiences rather than what the text book says we suffer! Good luck for tomorrow. Let us know how you get on we will all be thinking of you.

Kindest regards,

June

Hi Linda, you poor thing. They are still messing with you aren't they? If there is no TB then they should let it go and they shouldn't be putting your 2 year old granddaughter through unnecessary tests like that. They certainly should have done your CT scan long ago. You put your foot down and tell them to stop messing you around. It's all the same if there was something else brewing and them delaying tests is just asking for trouble. There is no doubt in my mind that you have Sarcoidosis I just wish to God they would get on and do the right tests.

Thanks for your concern by the way. It is lovely to know someone cares like that. I'm still feeling awful rough. The Erythema Nodosum rash is all over the place and I've got terrible photophobia that started yesterday. I had my dark glasses on but as I wear varifocal glasses all the time I really need to get some clip ones. I'm looking at everything through slitted eyelids ha ha! It's horrible really because obviously it's giving me a headache to have my eyes scrunched up all the time and of course the curtains are closed and I can't go outside. It's just another 18 days before my hospital appointment thank goodness. Hopefully they will put me back onto some medication to tame the symptoms because they are definitely out of hand at the moment. I also noticed that my heartbeat has become erratic again but it could be down to the meds (hydroxychloroquine) although I had erratic heartbeat last year when my symptoms were out of control so it's anyone's guess.

More importantly I have my fingers crossed tomorrow that your medics will do the right thing and get your tests done. I can't imagine how awful it is for you after all this time and so many tests (armfuls of blood ha ha !) still not to have an answer.

Good luck Linda. I will be thinking of you.

Kindest regards,

June

Thank you June for your kind words. I will keep you updated how I get on and any other symptoms I get,

so that you could collate the detailed information you need. Dear god girls (Linda and June) you both

havent got this easy.. Hope it will all work out well for you both soon. My symptoms are weird, they come and go, some have stayed.. Today it is sickening tiredness, sore and teary eyes (I don't usually get this), pins and needles both sides of my face and head and hands. Never know what the next day brings. My

lung consultant (professor) thinks it will go into remission in a year or so... Well lets hope she is right.. I felt the same Linda, one test after another and feels that I am still not any wiser... They have not found TB on you, why do they have to test your little one for it ? Is there anyway you could protest it? I have had 2x

CT scan.. luckly, these showed properly the issues with my lungs.

Although I had all the other relevant symptoms, they still done the biopsy to check for the TB.. , I

thought this option was not likely.. My aunt, who is 16 years older than me, just had been diagnosed with sarcoid breifly before me, I was advised that it does not run in the family like that... My symptoms arealmost identical to hers. The swollen ankles, cough, lung CT results , short of breath and I did advise

both consultants.. I think the lung specialist actually draw a face when I said that.. Although lungs

override the joints, I really have got a lot more faith in my Rheumatologist. Will keep you posted about

tomorrow

Thank you again for all your kind wishes

Meeli M, Scotland

Although they say that it isn't a disease that is passed from relative to relative they do say that if one person in a family has the disease it is more likely that another one will present with it. Which to me doesn't make any sense as it sounds like it is hereditary??????? Weird eh?

Aww June,

I never noticed your reply after Linda before (before 7 pm), it all makes more sence now! Thank you ever so much, especially for all the great detail. It was not the Rheumatologist who cancelled my treatment but the lung specialist. The Rheumatologist has got a great bedside manner and I always feel pretty goodafter seeing her. She prescribed 6 steroid tablets for the morning and the day I collected them I saw the lung specialist for the 1st time who did not agree to give me any steroids for the time being .. until all the tests have been run again and the biopsy is done.. I was told by the nurses after my biopsy to phone for my results (24 of April) a week after if I had not heared anything and the secretary of the lung specialistsaid that they dont provide this info over the phone and I'll get my results next time meeting the professor.. Remembered someting else, I had a red sore and itchy lump on my chin when I first met the Rheumatologist , it took about 5-6 weeks befored it was gone. Now my skin is so dry on my legs that no cream is helping.. Also while getting the biopsy done, I heard the doctor saying to operating theatere staff about sarcoid and none of them knew what it was, and he explained something about the red sarcoid spots on my lungs..

Hope you feel better very soon June and good luck Linda for tomorrow

Love Meeli M

PS, I am Scandinavian decent, and it seems to be more common in Scandinavia.. but I have lived in

Scotland for alomost 15 years, so cannot be enviroment related..

Hi MM,it is ironic the different opinions on night sweats, they said that was a big contributing factor for me towards TB & Sarcoid. Worrying how these doctors opnions differ so much.

JUNE - with regards to a list. I have actaully kept a diary for a while now, so when I get a chance I will list all the symptons I have had to date, although as we know it may not apply...as they are not even sure of which disease I actually have now.......

Hi June,

Well I have been to the hospital agin this morning.....I saw the TB urse for my fortnightly visit.

ALthough the doctor took me off of Euthamabol 2 weeks agao and I have felt so mucg better, a new nurse on the team was not happy and said that he will speak to the doctor and give me a call as he thinks I should stay on them....he added and given the fact that you are starting to feel better then they muct be working...he is missing the point.....I explained to him that I was beginning to feel better anyway before I even started the TB medication. Had a liver & bone blood test! Then saw the optician again to which she told me the floaters are due to my conditions/medication and that the jelly at the back of my eye had detatched from the retna, but this will never repair!!!!

With regards to my granddaughter the local clinic finally called my daughter in law back today and said not to come unless I get a confirmed result...hooray someone is finally listening.

CT scan - I spoke to them again today and they are getting it booked it - as they told me 2 weeks ago.....they want it all around the 8 week mark of the biposies.

Sorry to hear that you are suffering again this week with eyes etc...no fun feeling imprisoned.

xxx

Hi MM,

I had a little chuckle when you described your symptons as weird...as that is exactly what they are and so random.

Like you it was the rheumatologist that got things moving for me and ordered the CT scan & ebus.

From him I was referred to respirtory, then from there to infectous diseases! [TB]

I have now got appointments coming up for. Rheumatologist. Respirtory & Sarcoid clinics. So basically I feel I have gone a full circle with the Sarcoid clinic being a new link.

Hope you got some answers today......

Take care!