Sarcoidosis - not enough care and attention given to sufferers

I should have pointed out that I got the information from the Royal National Institute for the Blind. Different countries sometimes have different results for different tests so we need to be careful that certain results for various tests come from the UK especially when claiming benefits or help etc.

Thank you so much for spending so much time on typing all that for me, once again you are wonder woman.

As you say Morag had explained it nicely, but you have emphasised some of it, which it all very helpful.

I will be taking this all on board and reverting back to all the useful information you have both provided.

Vision - my vision was good, so I feel between the TB medication and Sarcoid it has been bugered up.

Talking of which I must get off this computor.

Love to all and once again many thanks to all for all your assistance.

xxx

Hi All,

Thanks for all the info you have put on it's been really interesting to read.

Just looking for some advise for when I see my resp consultant to discuss options.

Just a quick recap of my background first ...

Had chest X-ray showing nodules on lungs & swollen lymph nodes in my chest,Had CT scan of lungs which confirmed this, saw resp SPR who took lots of bloods & had lung function tests which showed poor function, had a bronchoscopy carried out by resp consultant & also a biopsy of the nodules. Saw SPR again on the clinic for the results who said there was a chest infection present (give antib's) also there were some abnormalities from the biopsy & other results but wasn't 100% sure it was sarcoidosis so decided to discuss my case at a multi- discipline meeting then consultant would call me to discuss outcome. Unfortunately meeting didn't happen as not all the specialist were present. Consultant called to apologise for this & for not having the opportunity to discuss my case with me directly on the previous clinic visits. He actually says it is sarcoids. ( even though his registrar had previously said it wasn't clear) and he wants to meet with me to discuss my options & have repeat lung function tests& chest X-ray to see if anything has changed.

Symptoms- fatigue& joint pains (which I've had for at least 3years)breathlessness, chest& side pain, poss skin lesions, vision appears slightly effected, dry mouth, lesions/ulcers that come & go on tongue, pins& needles& weakness in joints, headaches, urinating often & very thirsty.

The advise I was looking for is as I've only just been diagnosed & due to how busy the resp clinic is this will be the first time I get to see & properly discuss my case with the consultant. I'm hoping he is a thorough doctor but my worry is that, from what I've heard from a lot of your experiences, not all of the docs are when treating sarcoidosis. Would any of you suggest I ask any particular questions, ask for any other particular tests, ask to see any other specialists? I'm not taking any medication yet apart from lots of painkillers.

As I've waiting so long to see him & he is so busy I do not want to waste this opportunity. Also if other areas are affected I want to be aware.

Any help much appreciated

Cassy x

Hi Cassy,

I strongly advise that you write down all your symptoms and all the questions on a piece of paper and take it with you when you go to see your consultant as I can guarantee you will forget half of what you want to ask. Don't be fobbed off and don't be frightened to ask questions or to ask for simpler explanations if the doctor starts speaking over your head such as using too many medical terms.

Also take a bottle of water with you because you are already suffering from extreme thirst and nerves on top of this will make your mouth dry up when you are talking (this always happens to me).

If you are concerned about some of your symptoms say your joint pain for example, then you can ask your consultant to refer you to the neurology consultant if it is a nerve problem or to rheumatology if it is just the joints. I will tell you what my consultant told me and he is an excellent consultant and knows a lot about Sarcoidosis. He told me that because I have systemic Sarcoidosis (Sarcoidosis all through my body) he thinks it would be detrimental to my well-being to send me to all the different departments for simple or invasive tests when he already knows I have sarcoidosis and I am on the correct treatment for it and all the symptoms that goes with it. Of course if any of the symptoms get out of hand then he does send me for more tests just to be sure I am not suffering from another illness too as it is very easy to blame Sarcoidosis for every little ache or pain I get. I think they have probably done enough tests on you to be able to diagnose Sarcoidosis but you have to remember that sarcoidosis also mimics very closely many other diseases, especially diseases of the immune system.

As for medication, it depends on how bad the Sarcoidosis is attacking your organs as to whether medication will be prescribed. A lot of consultants like to wait to see what course the sarcoid will take e.g. if your sarcoid is constantly causing chest infections, which in turn can cause fibrosing and scarring of the lungs . How large your lymph nodes have swelled and how much pain you are getting from them. Blood tests don't always show raised levels in Sarcoid sufferers so you can't always rely on blood tests as to how the Sarcoid is developing or even improving. Usually it is the ACE levels in blood that are raised in sarcoidosis but in some patients it doesn't show any increase.

Because of the bad side effects most drugs cause doctors are reluctant to start sarcoid sufferers on them if there is a possibility of the sarcoid burning itself out. Sarcoidosis is a long term illness for most chronic sufferers. It can last from 3 - 10 years, sometimes longer and some times shorter. It depends on the patients immune system because your immune system is fighting an illness that doesn't exist - in other words it's fighting itself. This is why in bad cases the doctor has to prescribe immune suppressants to stop your immune system from fighting but then you are laid open to any opportunistic infection or disease attacking your body because your immune system is suppressed by the drugs. It is a catch 22 situation so it isn't surprising when doctors hold back on treatment. However if your Sarcoidosis is bad then I think you should consider asking to be put on prednisolone (steroids) which act as anti inflammatory medication and sacoidosis responds well to them usually but again you have to balance the side effects against this treatment. A few of us are on a drug called hydroxychloroquine which is really good at treating joint pain. So far none of us is having any problem with side effects but you have to be very careful where your eye sight is concerned as it can cause huge problems for some people.

I don't know if all this is of any help Cassy. Each consultant is different but if your consultant wanted a multi disciplinary team meeting then I would say he is a very good doctor who will look after you well. Between now and your appointment make sure your piece of paper is handy at all times and write down anything you are feeling or thinking or wanting to know and then you can either read it to your consultant or even hand it to him to read for himself. I have done both on appointment visits and have always come away feeling that all my questions were answered fully and my mind is at rest. One of the worst things you can do is worry yourself because all you will accomplish is to make yourself more ill. No doctor is going to start a treatment regime without your consent. If you feel that the consultants knowledge of Sarcoidosis isn't good you can always seek a second opinion so don't be scared to ask him how many people he has treated for Sarcoidosis and how recent because as you know treatments change over time so you want him to be up to date too.

I've probably given you a headache with all this ha ha! I really hope it has helped anyway.

Keep your chin up. It's always daunting at first just getting over the shock of being told you have Sarcoidosis is enough.

Big hugs,

June xoxoxo

Hi Cassy,

As usual, I agree with June, write your questions down and don’t be afraid to ask anything, this is your time and opportunity. Your first appointments usually last very long.

I was first referred to Rheumatology by my GP as he thought I had RA negative. Which means Rheumatoid Arthritis tested negative (not showing up in blood tests) but my blood tests showed high levels of infection and I had extremely swollen and painful ankles as well as parallel joint pain in most of my small joints. I had to wait 3 months for my appointment after GP had run all the tests he could, by that time I had started struggling with breathlessness and terrible cough.

It was the Rheumatologist in the Hospital who ordered all CT scans, X-rays, blood test, lung function tests etc and she also gave me steroid injection (lasted for 12 weeks or so) .She asked me at our first appointment if I knew what Sarcoidosis was.. I didn’t then but couple of weeks later , before I saw my rheumatologist again, my Aunt (mums youngest sister) was diagnosed with Sarcoidosis, hers had manifested quite the same way as mine with exception of high levels of calcium in most major organs my aunt had (it had also gone on for much longer than mine). When I saw my Rheumatologist after all the tests had been done she diagnosed me with Sarcoid and referred me to Pulmonary specialist.

Pulmonary specialist also ordered biopsy and bronchoscopy and though it could also be lymphoma or TB but biopsy confirmed Sarcoid. Pulmonary specialist asked me not to take steroids and prescribed me the inhalers instead (which definitely helped).. I am still on the NSAIDS and HYDROXYCHLOROQUINE for my joints and I am still seeing both consultants.

Hope above will help you with some of your questions and good luck

Love, MM

Hi Cassy,

I endorse all what June & MM have mentioned above.

When I was first ill I used to jot everything down each day.

Then on going to see the consultanst take nores with me [I must admit I never always actually got to say

them all as there is so much being said to you at the time] so do try to make sure you ask all the questions you have.

Like MM it was the Rheumatologist that got things moving for me, referred me to the eye hospital

immediatley and arranged the CT scan.

I am still under Rheumatology, which I must say I didnt think I would of needed to be, but I am so glad I am as they seem to be so helpful.

Hope all goes well with your appointment.

KInd regards

Linda

Thank you all x

Hi my name is sharon I am new to this forum - last week I was informed by freeman hospital in Newcastle that I have sarcodosic - after about two years of tests . I am glad I have an answer to my symptoms . I have anti nuclear anti body's - shortness of breath - stiff joints - pins and needles - no feeling in my left upper leg - headaches - fatigue - - but I have also had swollen feet that lasted a week and was unable to walk to the toilet - migraine that lasted seven days and had to lye in bed in the dark crying with pains - irregular heart beat for about two month - I drink more water now as I'm always thirsty - I also have swollen and stiff right rist - I have found reading your posts very usefull to prepare me for my fist appointment with dr Taylor at Sunderland hospital on Tuesday - I also have multiple noduels on my lungs and this is how I found out as I was told I could have cancer and they wanted to operate - but they came back and said I had sarcoidosis - I hope I get treatment as I was off work last year for ten weeks and this year three weeks to date - and I'm not sure if I can cope with loosing my job xxxxxxx

Hi Sharon,

Welcome to the forum.

I've found this forum a great place to get help, support & advice whenever I needed it. It's just great to be able to talk openly to people that are going through the same as you.

So sorry to hear how tough things have & are for you at the moment. Wishing you lots of luck on Tuesday for your appointment. I'm in the same boat as you as I've also just been diagnosed with sarcoidosis & waiting for my appointment at the end of the month.Though it's not the outcome I wanted its kind of nice to finally get a condition that explains all of the random symptoms I suffer from then hopefully it will be easier to deal with.

Take care

Cassy xx

Hi Sharon and welcome!!!

Glad you have finally got a diagnoses, it is scary when they cannot pinpoint an actual illness and your mind starts racing as they can be a bit elusive at times and sterr completley up the wrong path.

All your symptons to point to 'our club' as such :-)

This seems to be a major problem intially as there is a differnet sympton every week and you get to a stage where you think this cannot be right......but at least now you are attending the correct clinic and hopefully will soon be treated.

Kind regards

Linda

Hi Sharon

Welcome to the gang.

Hopefully now you've got a diagnosis the powers that be will start looking at the best treatment for you. Whole range of things depending on the symptoms. Just make sure the consultant knows exactly how much the symptoms affect you day to day so he/she gets a grip on how much you're suffering. I've been lucky, from reading other posts, the consultants I've seen have all been really good and as soon they decided what the problem was they started on treatment.

As for work, once you have a diagnosis that you can take back to them hopefully they can make things a bit easier in the short term till you get some treatment and it starts to have an effect.

Good luck with your appointment

Morag

Hello Sharon,

A huge welcome to the forum. My lungs were like yours and I too was told that I had lung cancer so I know how terribly frightened you must have been. It seems that most of the members on this forum have had to wait an eternity for a correct diagnoses having first had to endure many tests some very invasive ones too. I would be very surprised if they did not start you on treatment and there is nothing wrong with you telling the consultant that either. Make sure you write down everything you want to ask the consultant or you will probably forget as first consultations tend to be long and trying to deal with so much information can be difficult. Also if you are feeling so unwell you may also forget something important that you want to ask about or discuss.

I have to say I am shocked to hear it has taken the doctors 2 years to diagnose you. That is really unacceptable not to say shocking as they have left you in such an unwell state.

What I can tell you is that for me, being treated with prednisolone and hydroxychloroquine made a huge difference to the way I felt. (You could write these medications down and ask your consultant if he think you could at least try them but bare in mind that they do take several weeks to kick in). The pain in my chest from the multiple, enlarged lymph nodes went away and my breathlessness diminished. My swollen feet eased too although they still are swollen, more so at night, they are not nearly as swollen as they were. The sarcoidosis played havoc with my joints and nervous system but the hydroxychloroquine helped a great deal. They diagnosed me with level 5 - 6 Carpal Tunnel Syndrome which is very severe and I wear wrist splints but the hydroxychloroquine and prednisolone has reduded the pain and the nerve problems greatly. When I recently missed 2 days of taking hydroxychloroquine it was shocking how quickly the symptoms returned so I know it is that medication that is helping.

I also had irregular heart beat and collapsed a couple of times. Make sure they send you for an Echo-Cardiogram to ensure the sarcoidosis isn't in your heart too. If you drink lots of coffee then stop drinking it altogether as it too makes an already over-taxed heart work faster and also causes irregular beats. My heart still plays up and it is really terrifying when it does as it feels like I'm going to die. The feeling is very common in this type of arrhythmias so please make sure you get it checked. I've had all the heart tests and they tell me there is no sarcoid in my heart but I continue to get the arrhythmias just the same. It could be that this is why you are getting headaches too along with the awful stress of not knowing what was wrong with you and how dreadful you were feeling. Make sure they keep a check of your blood pressure too in case that is elevated and also causing you to have headaches. The thirst is par for the course I'm afraid but try to stick to just water so at least your system is not having to work overtime filtering sugary drinks, coffee, tea etc. I even ended up having weird cravings for things. Sherbet was one of the worst!. Really weird eh?

I'm sure you will feel a lot less worried and stressed after you have spoken to the consultant, at least I hope you do. Make him explain everything to you and don't take no for an answer. You may very well find that he refers you to different departments for your various symptoms. I was even though they new I had sarcoidosis. I think it was more for seeing what other medications I could be given to ease the various symptoms and also to discount the possibility of more than Sarcoid causing the symptoms.

Let us know how you get on and if there is anything you don't understand or didn't get an explanation for don't hesitate to ask here as you will certainly be given lots of support and understanding here.

If you can, I'd advise that you take someone with you to your consultation as it is a lot of things to remember and nerves often cause us to forget what was said so another pair of ears is always handy.

Try not to be worrying about your job. I know money is important to us all but your health comes first.

Keep your chin up and best of luck for tomorrow.

Big hugs,

June xoxoxo

Well what to say x

Thank you all for making me feel so welcome - I have taken down the names of the medication to ask the consultant tomorrow and I have made a list of my problems that I have had going back a year - the main thing for me at the moment is this cough blocked nose and short of breath - and the fact that I can not walk up the stairs with out using the banister -

I'm feeling better knowing the fact that I will be able to go back to work as I was starting to think I'm going to be like this forever - I love my job working for the British hear foundation - I cover a large area as the volunteer advisor and I meet hundreds of lovely people helping and volunteering in the stores - it is comforting to know that with treatment I can get back to see these lovely people that I have meat over the years x

Thanks for you kind words and will keep you posted x regards sharon x 💐💐💐

Hi all

I have had my appointment today and have been started of with an injection of steroids

And I'm to take six 5g of prednisolone for two weeks - then I will be given a follow up appointment x

It feels good to be taking somthink after so long of wondering what was up with me x

She answered all my questions and I feel much better x

Now I just have to wait and see if it works x

I was told it will run its corse and then fade out is this true and how long have yous had these problems if you don't mind me asking x

Xxx

Hi Sharon

Great news that you have been started on medication immediately. Apart from the long wait of course

It seems that you have a good consultant which is a relief for you

With regards to it running it's course - yes this is usually how it pans out

However I had about six months where I felt quite well then I have had a blip the past few months

Hence my consultant now wants me to

Go on a two year course of medication. But of course I am still awaiting to get the confirmation from the eye hospital professor ....so this could be a while

My consultant had already written to my GP with regards to my prescription choices once we have heard from the opthamulist

But up until now I haven't had any medication for my sarcoid

I sure you are feeling such a relief after today's appointment knowing that you are being treated

X