Ok anyone have answers??

Ok thanks for the info I will see what I can do

I don't know if this is any good to you but my neurosarcoidosis is being treated with prednisone in conjunction with infusions of infliximab and a twice daily tablets called Imuran. My doctor wants me off or on a low maintenance dose of steroids and stay on the immuno suppressants. These drugs take at least 6 months to build up in your system and have their own risky/dangerous side effects. A year on it was feeling great but getting an eye health check tomorrow as Im feeling eye strain and photophobia past 2 days. Hoping I'm told it's nothing to be concerned about.

I really hope you can get relief. I'm very lucky with my Neurologist in Cork. He listens to me and puts great thought into my treatment. I've learned to fight my corner and question everything. I found reading up on the conditionhelped me understand and I also read up on the suggested drug options so I could question their safety and what risks they present.

Any and all information helps and I appreciate your help and input I was just diagnosed July this yr I was only on prednisone for a month it was 50mg daily but now I'm off them Dr said that I'm not responding to it either way I always feel out of breath lime someone is sitting on my chest hope it will go away soon just wait and see!!

I'm so sorry you're having such a rough time. I remember having sarcoidosis for the first time. It was in my lungs and skin. I remember being in hospital and I wasn't allowed out of bed because my chest was bad. They couldn't do a lung function test at first. I was put on 45mg of prednisone for nearly a month and had regular checkups for 2 years. This time around its in my brain and it's a Neurologist I'm under. He's treating it aggressively and said I'm going to be on medication for years. I'm now a year into my treatment and I'm finally getting my life back. The drugs I'm on take up to half a year to bind to the body and I've to have monthly blood tests to monitor kidneys and liver. Don't give up. Listen to your body. The problem with sarcoidosis is that there doesn't seem to be many doctors who specialise in the disease rather that doctors treat it in the area it affects. So there's no communication for research gathering. It's a pain. My ex GP was useless. She wouldnt listen when I said it was back and I knew it affects eyes as well so it was an optician that got me seen to. I dread to think what would have happened if I didnt trust my instinct.

Wow in your brain? How did you know or what were your symptoms I know I've been saying things I don't mean but no one thinks Sarcoidosis is the cause like I will say this is far instead of long

I'm just getting frustrated I haven't worked since June idk if I'll get back I'm depressed but thanks for ur input!!

Yep. It's in the meninges lining of the brain and it presented as violent migraine strength headaches and a stiffness in the neck. I also had difficulty getting my worder across. I'd want to say something but wouldn't be physically able to. One day I was on the phone and I wanted to say, you lucky duck. I ended up saying, you lucky Dope! I was mortified and scared. I had sarcoidosis in 2002 in my lungs and this time round my GP wouldn't listen to me when I said it was Back! I had to fight hard to be believed! I had to actually ask her to do the ACE blood test. In hospital that level was 90 and should have been 45! The headaches were so cruel. In my case they mostly happened in the middle of the night. I was also sensitive to light. I went to the cinema one night and nearly collapsed in agony. My vision was distorted- kinda like 3D is the best I can describe it. Other symptoms that happened before the headaches was extremely fatigue and a rash on my skin, legs and breasts. I had a dry cough that wouldn't go and joint pain that hopped from joint to joint randomly. One day I got a pain in my knee athe 3 o'clock clock and by half 5 I couldn't walk. Next day ito was my ankle and another day it was my wrist - I couldn't release the handbrake in my car! I also felt unwell and couldn't eat. It was the optician in specsavers that helped me. She photographed my eyes and straight away sent me to A&E with an emergency referral! I had a lumbar puncture where the pressure was 40 and should have been 20 or under. I asked the Neurologist months later on a scale of one to 10 how bad was I and he said a 9! Neurosarcoidosis is rarer than sarcoidosis so if you think you may have it push for to be seen by a good Neurologist. I was out of work for 7 months and now still I'm backonly 3 days a week and those 3 days can't be together as I'm wrecked at the end of the day. I joined the local lensure centre for the pool and that was a great sanity saver for me! I can't use the gym as every time I do I get sick because my immune system is so low! I recently got the shingles but thank God I caught it early before any damage. I hate buses in winter months as people are coughing into your face and it's just so easy to pick up bugs! If I can help at all let me know and keep fighting! Easier said than done I Know!

Thank you so much I feel for you as well I have had the painful joints knees and ankles mostly swollen and red they r a little bit better at this point hope they stay that way!!

I appreciate your time and advice thanks for talking with me!!

Thanks Katlis! You're very Welcome! I'm always happy to help if I can so if you need to talk just contact me. Did they ever do an mri or ct scAn? If you're worried ask can they do that. In hospital last year they had me on 1000mg of metalprednisone IV for 5days before starting oral steroids. Did he say what he was going to treat you with if he was taking you off the steroids?

Yes I have had CT scan that's how they found my lymph nodes were all swollen that led me to byopsy and then my diagnose of stage 2 sarcoidosis but since the prednisone wasn't working I just had another in depth CT the other day I go back in Sept for the results and for now I'm just going to wait I'm not on anything else at this time and the respirologist said he doesn't understand why I'm not better using the prednisone and didn't know what to do 😕

I'm glad you had another in depth ct scan. That's so frustrating. If your respiratologist doesn't know what else to do I hope he will seek out someone else who can view it with fresh outlook. It's a horrible condition and I've been scared over the past few days that I might be relapsing despite being treated. But, thank God, my eyes are healthy so I'm going to see how my head feels over the next few weeks. I really hope you start feeling an improvement soon.

I hope your feeling better I bet your scared I would be to this disease Is just horrific I woke up this morning my checks r red and puffy and under my chin in swollen going to a new GP family Dr today see if has anything new to help he is from th UK maybe he knows more about this disease then my respirologist I hope. I'm from St catharines ontario were do you live? Hope you're having a good day .

Im scared alright. I went through an awful time last year and I don't ever want to suffer like that again. It is a horrible disease. It unnerves me too because I'm on such medication for it too and yet it seems to be rearing its ugly head again. Last night and today have been bad for me. Im sensitive to light and my headache is making me nauseous. I rang the hospital today and thank God my consultant was on. He told me to come in on Monday or Tuesday morning and he'll see what's going on. He might do an MRI. Im glad you're going to see another doctor for another opinion. That's awful that you've woken up like that! I really hope the new doctor knows more about sarcoidosis. I'm living in Cork in Ireland.

Oh my goodness o hope you get to the bottom as well get rid of it headache that's terrible. Yes I do agree this disease is just horrific I almost wish they found something that was more curable and that Dr's know how to treat cause this is rotten I'll get back to u after my Dr appt take care of urself talk soon!

I hope so too! That's the feck up with this disease! The fact there is so little known about it! Before this I could count on one hand the amount of days I was out sick since I started in my job almost seven years ago - i was out from end of july 2015 to march 2016 and again out for the month of July with the shingles! I'm broke from missing work! Do let me know - I hope the appointment goes well for you! Take care you too! talk soon

Hey there well so I'm going for more blood work my face outbreak and swelling is from Sarcoidosis he said not much he can do since prednisone not working for me so not much new my ct scan he didn't have it yet so I go see respirologist in September so hope by then he will have something new. Hope ur feeling better the heat here today is way to hot up to 40° I'm staying in!!! I'm been off work since June 8/16 but idk how or when I'm going back but for now I get sick benifits which thank God I just received on June 1st 16 with out them I would be in the dog house broke.

That's awful. I can't understand how the predisnone isn't working I'm taking it easy - my head is still sore and my words are muddling up. I'm trying to convince myself that its my imagination. I'm grand first thing in the morning but as the day goes on the pressure builds and builds. It's fairly hot for us here too. but not as high as 40! I avoid the sunshine as much as possible - I've the typical Irish skin, fair and redhair! That plus the Imuran I'm taking for the sarcoid means I'm at a higher risk of skin cancer. I've to put on factor 50 suncream if I'm spending any time at all outside - even on cloudy days and I'm always checking the UV factor to see how dangerous it is. I don't get any sick benefits from work but I get it from the state. It's barely enough to manage but I'm lucky i'm living at home with my parents. I really really hope you get good news.

Thanks! you to I hope you get something to help with ur headaches and get to the bottom of them you will have to let me know what you find out if u don't mind I know I've been talking kinda stupid but I haven't had any headache knock on wood I'm getting frustrated with my words then it's not bad enough my husband corrects me I know he thinks he helping me but gets me more upset

Anyway take it easy I'm doing the same lol talk soon!!

I hope so too! I'll definitely let you know. I know what it's like with the words. It's so annoying! People mean well but they they just don't understand what it's like. Then they can't see why we are upset! I'm definitely going to take it easy! I'm going to the pool in the minute to see if it can help me relax! Talk soon! 

Hi Lisaom

So I had my ct scan done Aug 24 I was suppose to see my Dr Sept 12 for my results but he himself called me yesterday to go see him so I went in to find out that my lymph nodes are larger than last scan and I'm going to a new specialist in Hamilton Ont September 8 I might have to have another biopsy I'm so nervous now.

I hope your feeling better how is ur headaches hope they are better talk soon

Hi Katlis, I'm sorry that your lymph nodes are larger than last scan! I hope that the new specialist you go to will be more familiar with sarcoidosis! Headaches are there but thankfully not as severe! Will you let me know how you get on?

Yes I will forsure glad to hear that ur headaches are little better I go to new Dr Sept 8 I hope to know little more then this disease just rotten!!!

Hi Katlis! I hope you got on ok today

Hey well I was in Hamilton to see the specialist and it was really a long time to find out nothing really more blood work done new medication to try to help my skin joint pain and swelling but not for my breathing. My ACE blood work was low and calcium was high doesn't make sense I go back in 6 weeks.

O hope ur doing well thanks for thinking of me!! Are you on the face book page as well? Lete know!

Hiya! I know exactly what you're going through! Been there and fought for my diagnoses. I didn't want you to think of forgotten 😊 Glad they started you on some new treatment. It's a starting point at least! I truly hope you'll get some sort of relief! From what I've heard once you're on treatment the ACE level isn't always accurate. I got accepted on the facebook page last night. It's very good. Are you on it too?

Oh thanks I hope to how u feeling hope ur getting relief from ur headaches!!! I am on fb it has 6000 people on it mine was just called sarcoidos. Hope we're on the same one!

I'm definitely getting relief thank God! The one I'm on in facebook has 2147 members. It's a closed group so if you join I could add you. What's the page title of the one you're in?

All small letters sarcoidos it's closed but u can request to join it has 6000 people on it its cool glad to hear ur getting some relief!!!

Hiya! I holistic requested to join! I'm delighted to be getting relief! I'm also getting relief from my crippling back pain. I put on 3 stone while in the higher dose of prednisone and my back was agony! I've lost 19 pounds so far and walking is easier and pain gone from my back! I enjoyed a leisurely walk today that I wouldn't have been able to before.

Oh that's great news I'm so happy for you!!!

Hope you can get on my fb Sarcoidosis group that would be awesome!!

Hiya Katlis! I got accepted onto the sarcoidosis facebook page. My surname is o Mahony 😊

Oh cool I'm Katz I'll try and find u and add u as my friend thanks