Sarcoidosis - not enough care and attention given to sufferers

Hi Lisa and welcome.

It seems that you have been diagnosed fairly quickly which is a good start.

I personally havent had any swelling to my neck and face, although my ankles were very swollen for over 2 weeks.

My eyes have been very badly affected whereby my vision has drastically deteriorated and I have floaters in my eys from 1-30 at anytime.

The sweats - oh yes....I wake up like Shirley Temple most mornings from going to bed with nicely straightened hair.

On a happier note...yes it does get better....It took over 7 months for me to be diagnosed, albeit I was being treated for TB for 3 months - 14 tablets a day!!!! ALthough both biopsies showed no sign of TB!!!!

At this moment I am feeling almost back to my old self, I do get quite tired by the evening, but that is probably due to me doing so much now that I am able to. And of course my eyes are great.

I think I am a prime example of 'it burns itself out' but of course thats not to sya it can't flare up at anytime.

Hi Lisa,

Oh dear, you are soooo young .. poor girl, but as Linda said it does and will get better and it goes into remission, usually within a year or 2. Night sweats, fatigue, tiredness seem to be most common dominators. I was ill for 8 months before I was diagnosed and my ankles and wrists were really swollen. Ankles were really bad for around 7 weeks or so.. and then I had pretty bad breathing issues as well as sore lymph nodes. After diagnosis I feel quite up beat but still tired and have night sweats. I have got inhalers now, one is a steroid based and I have been on naproxen for 10 months. I was prescribed steroids and then taken off them by a lung specialist. I also had couple of steroid injections which really helped my painful joints.

All the best and hope you are getting better v soon

MM

Hi Lisa

I'm still waiting for definite confirmation but both my GP and the renal consultant reckon I have sarcoidosis. For me that seems to mean a cough, a well stuffed up nose, slight breathing problems (but is that due to the nose or hayfever or what) and some kind of symptomless impaired kidney function. X rays, blood tests and CT scans so far but no sign of an appointment after the "urgent referral" to respiratory clinic.

As for some of the symptoms you're mentioning - don't know whether its a good thing or a bad one but some of them sound exactly like the most common side effects of oral steroids ie your prednisolone, dexamethasone etc. Swollen moon face, camel hump, swelling around eyes. sometimes night sweats though that could also be sarcoidosis. In a lot of people they also cause weight gain and give them the desire to eat and eat. It sounds horrendous but the good news is that as the consultant seems to have you on a gradually reducing dose, all those effects should gradually get less and less and vanish. So hang in there

I always knew my drug/pharmacology/indexing background would come in useful some day :-)

Morag

Thanks everyone I was diagnosed in 4 weeks with all the tests they done as they thought it was lymphoma. I'm so glad to hear that it does get better feel a bit out of touch with the world just now the side effects of the tablets have gave my confidence a bit if a knock with making me look like a monster lol I'm hoping once the doctors have got my dosage down this swelling will go away.

Hi I'm Tim and 49. I was first diagnosed because of a persistent cough when suddenly I ran out of breath at walking upstairs or any incline . I was sent to hospital with blood clots on lungs. A few years later this happened again and during that diagnosis they also found sarcoidosis.

At first they thought it was lymphoma and asked me how I felt about that etc. after a biopsy under general anasthetic they knew for sure it was sarcoidosis. Before this I'd had blood tests, X-rays, an ultras can in my heart as I have an unusual rythym, cat scans twice and an MRI scan for 40 minutes!

They assured me the blood clots on my lungs had nothing to do with my sarcoidosis.

I think I've had sarcoidosis for years looking back. My symptoms are, most common is itchy rash on shins, short of breath often just a little right now, occasional night sweats, feeling very tired on occasion and a little tired just about every day. Also I have developed an advanced cataract in one eye and a growing one in the other, luckily that eye sees ok so far.

Because of what i'd read, I asked my sarcoidosis specialist in one of the meetings if I could have my eyes checked. They were and specialist said no sarcoidosis in eyes just small cataracts which will be ok for about 20 years. Anyway it was only about 5 years when it accelerated now I'm told I'm technically blind in that eye. Yes I can have an op for that, but I'm wondering if it's the sarc and maybe will come back. I know steroid inhaler can cause cataracts and I took it a while maybe 2 months only then stopped.

My sarc comes and goes over years but never went completely. Now I gave up seeing anyone because it was lung tests showing same reduced capacity over and over again, nothing changed. If it dies, I will be straight back. Most symptoms are fairly mild and people around me have just hit used to that I walk slowly, can't see too well etc. thank you for listening! ~Tim

Hi Tim, Welcome to the forum. I hope you have found some support through reading all the groups

comments. I'd also like to say welcome to all the other new people who joined the forum while I was out of

touch. A big thank you to Linda too who kept up the warm welcomes! Tim, I think the big problem with

Sarcoidosis

is the lack of knowledge about the disease and the apparent rarity of it in different countries. No one knows what causes it and as yet there is no cure. It's so difficult to diagnose because it can have a multitude of

symptoms most of which point to other diseases. I'm really sorry to hear you have had blood clots on your

lungs. That is really horrible and very painful too. You can have Sarcoidosis for years and even when you

think it is better it can flare up again. Like you I believe I've had Sarcoid for years. I spent 41/2 years

working in China and had 3 bad bouts of Bronchopneumonia while I was there. I always attended the clinic across the road from my work and they treated me with half Chinese medicine and half western antibiotics. Within 3 days I was almost as right as rain. That was 12 1/2 years ago. I was only diagnosed in 2011 with

Sarcoid.

Like you I went to my GP with a cough and breathlessness. I didn't really notice the breathlessness

because I was on crutches at the time (now in a wheelchair!) and thought it was just the effort of getting myself around that made me short of breath. At first the thought I had late stage lung cancer but after a

bronchoscopy they confirmed Sarcoidosis. Even when you look for research there isn't that much around.

They all say the same thing re symptoms etc. I think it's harder to get GPs to understand the multi-symptoms we have and sometimes it's almost like they're thinking half our symptoms are psychological. The one

person I rely on is my respiratory specialist. If it hadn't been for him I wouldn't have had half the tests or

help that I've had. I'm suffering a lot with my cough right now probably due to the colder air. I also get nose

bleeds, joint pain, chronic nerve problems etc etc. Some of the symptoms are not even noted when you are scouring the internet for answers. Do you have sarcoid rash just on the shins or do you find it else where? At present I have patches on arms, back, shins and ankles even my feet! On my face I have symmetrical

spots. It's so weird. Are you on steroids? You certainly should be given how your suffering. I take it you are also still under the respiratory clinic too. You really need to look after yourself with being at risk with clots on your lungs God that is so horrible. I really feel for you. You must be in so much pain when coughing etc.

Not to say how scary it is to cough up blood. I only had streaks of blood and it freaked me out. Anyway I'm

really glad you found us here and please join in and give us your take on this horrible disease.

Kindest regards, June

Hi Tim, My name is Helen, Sorry to hear you are having a difficult time just now. I too have multiple problems thanks to Sarcoid as I have had continuous and

new symptoms for 17 years but more so the past 4 years so I can empathise.

Keep strong, if there is anything I can help with just ask. You will find there are many experts on this website as we have had years to research it, Best wishes, Helen

To everyone else. I am so sorry I haven't been in touch for so long. I've been getting shunted from pillar to post around the hospitals. I was sent to the hospice to see if they could stabilise my condition and help me get some better pain relief. They welcomed me with open arms and then the following months they threw me out! They said and I quote 'You're not the type of person we can help!' WHAT? I left in floods of tears and they just let me wheel myself out in that state. I hope I never contract cancer because the Marie Curie Hospice in Glasgow is the last place I would ever go for help. My GP was astonished. I don't know what the doctor meant by her comment. Perhaps she thought my illness was all in my mind. Who knows. I've also been for emergency abdominal CAT scans as they think I have a mass in my left side so I'm waiting for those results too. Happy days eh? More importantly....How is everyone? The last postings seemed fairly positive with several of you sounding like you might be going into remission. I so hope so. Even if you have gone into remission I would be grateful if you would all still keep in touch because even though you are feeling better you will be such a help and comfort for those newly diagnosed or those who are in an active stage of the disease. I hope you are all looking after yourselves and managing to cope with the fatigue etc. With Christmas coming up it is especially busy time so just remember to keep something in reserve and try to get plenty of rest. Try not to do all your shopping in one day or too close to Christmas day or you might find that you are too tired to enjoy the big day. Make sure you get help in the kitchen if you are the one hosting and remember it's only one day in the year so try not to go too made and use up all your energy reserves. There is nothing wrong with you putting up your feet and letting other do a bit of work. I am so very pleased at all the support every one has given to everyone on the forum. Its so great to see. It can be such a lonely place to be in when you are unwell and the people around you just don't get it. I think you should all give yourselves a huge pat on the back for receiving and then giving support to others. I for one am very grateful even when I've felt guilty at writing a MOANAGRAM when I've felt down. The support for me was right there Long may our forum continue Kindest regards to all, June

Hi Ailsa June, Lovely to see you writing in again, I too have symptoms like you

but also have horrendous sarcoid in my nose and sinuses. Swollen and

congested/blood. My cheeks are oedematous and throbbing. Nothing is helping, I have tried everything over the past 6 weeks. The bottom of my left lung has

collapsed, that is what the pain has been from the last time I wrote on here. My GP was eating humble pie at my last visit on Tuesday. Wish I had a consultant who actually wanted to help me. I believe there is an NHS consultant who is a

specialist in Sarcoid in London. Keep up your spirits Warm thoughts Helen

Sorry Tim for the way my reply to you appears. For some reason the word wrap was playing up. Hope you can make sense of the submission anyway.

Thank you both! Basically I'm ok at the moment. Yes I have the cataract but that's ok.

What I described happened about a year and a half ago.

Right now just have mild rash on shins and now you mention it, one arm as well.

My breathing is a little less than it was but that's ok too.

The resp specialist did prescribe first steroid inhaler which seemed to work, it has a fast acting part and a longer term part. Well eventually I stopped using it. Also he then prescribed steroid tablets but I really don't want those side effects then after a while I felt ok so I never took them. Not been back for 18 months as basically feel ok.

After the blood clots was put on warfarin for life, so just getting on with it. No pain from that thank God for his mercy.

Basically was just sharing my story!

Thank you both. <>

Hi Helen. Oh love I'm so sorry for you. I'm lucky in the sense that I am on Oxycodone and Oxycontin MR for my nerve related pains so I get some relief from the gland pains. It does break through every so often though like severe mumps. My nose bleeds from one nostril only so I'm luckier there too. I can feel the membranes swell and know exactly when it is going to bleed. I think the steroids maybe make the bleeding worse but I'm not sure. The swelling in my face is due primarily to the steroids. I feel so embarrassed when I go out. I tell everyone I'm Jabba the Hut! I think you have to keep pushing at GPs because they just don't realise what we are going through and its totally unfair. I wish I could send my respiratory specialist to you all. He is amazing but then he has a thing for Sarcoidosis and when I presented with the worst symptoms he had ever treated I think he was over the moon. Maybe he's righting a thesis. He's very patient and he goes into everything in great detail so I am very lucky. He doesn't always tell me when the disease is exacerbating and my bloods go haywire but he indicates by bringing my appointments closer so I always know there is something up. At the moment he's trying to slowly increase the steroids because I had such a bad reaction when he put me on a large dose. I just can't fault him. You keep nagging your doctor and specialist. It's your right to make your GP refer you to other specialists. You can ask for second opinions too and if I were you I'd ask to be seen at another hospital so that the second opinion is just that and not conferred with your now specialist. I hope you are feeling in less pain soon. Are you on steroid therapy? If not you should be and if you are then you need to ask for it to be increased. Even a little increase should at least help with the swelling and pain. Let me know how you get on. Wishing you well, June

God! my spelling it should read writing a thesis. You can forgive me I am dyslexic so what can I say?

I'm really glad you did share your story Tim. It means so much to other people who often don't talk about their illness because they think no one wants to hear it or no one else would understand. There is a great saying 'a problem shared is a problem halved' and it is so true. You feel more at ease when you have shared a problem. You do need to be careful that your sarcoid isn't flaring up again. If the rash is new or more extensive, or if your coughing more than usual, you really should get it checked and the hospital should have had you back for checks at least yearly if not 6 monthly. I'm assuming that you get your bloods checked regularly because of the warfarin. I hope you keep coming back to the forum and offer advice as you see necessary. The great thing I have found is that because people suffer from different symptoms everyone has something to offer. I hope your 'feeling better' status continues. Thanks so much for sharing too. Kindest regards, June

Hi Ailsa June, You seem to be having an awful time, I am sorry to hear that.

I admire that you are being so brave and positive. You are to be admired for still supporting everyone even when you have so much to cope with. I appreciate

your comments and advice. I have lost 2 of my sisters and a brother in the past 9 weeks and I could have done without my present problems. Probably all the

upset and crying that has made my symptoms flare up. I wish I could breathe

through my nose....My GP said there is a new nasal steroid out which he would give me and it does not run down the throat so I may get it to try, but I hate

these things and my nose is so sore. Well I suppose I better get to bed I'm up

at 7am.Take care till we chat again,, Kind thoughts Helen