Mri scan shows small nodules

I have sarcoidosis and want to what Dr knows how to treat this it's in both lungs and know to behind liver not good know I am having bloating I went to a speacialist said can't give me no meds and it's cause from the sarcoidosis. I said so your telling me when it moves other place there no treatment only storids that only last so long he said sorry I need find somebody knows something

Hi Granny,

sorry, only now I saw your answer. Unfortunately, this is the answer we all get. I guess you are in the US, other people posting in these forums are from UK, I'm from Romania...the treatment is the same everywhere: steroids and pain killers. You can also try anti-infammatory herbal remedies (like turmeric, herbs combinations, etc.) and eat a healthy diet to alleviate the symptoms. However, there is no cure for this disease. Even the steroids won't stop it, but they can slow it down. Sooner or later, it will spread to other organs, affecting most organs in the body. In my case, it used to be just in the lungs, where it caused fibrosis, so parts of my lungs no longer function properly; however, it seems it has already spread, as I have three nodules outside my lungs, next to trachea. I will have a ct scan in about three months to see how much it has spread. I'm sorry I have no good news for you, but if you have no other serious diseases, live as healthy as possible and stay away from stress, you can live a long life with this disease. Read online as much as possible about sarcoidosis; knowing how this disease "works" will help you understand what you should and should not do, which will allow you to cope with it better.

Take care,

Magda

Thank you I really thank you alot I have it in both lungs and move behind my liver the Dr said can't give nothing just great believe me I try to stay away from stress but after that out boy did the stress come I told my Dr for something that isn't active sure causing alot of problems got bloating know very uncoratble I got to a specialist in Denver that really known about I hope I don't think we have to suffer just because than don't know about it it's not our fault we got I it if think of any questions I can ask him let me know thank you granny

I forgot to ask what is the specialist call in case does not work thanks granny

Hi Granny,

well, in case that conventional anti-inflammatory treatments don't work, they try other treatments, including mild chemo drugs (I had taken such durgs a few years back for about 4 months -- they are terrible). In my case, chemo drugs didn't work, but sarcodosis became inactive by itself and stayed that way for a while. Out of the blue, it became active again about 2 years ago, without me going through a particular stressful period or anything else or being able to relate it to specific triggers, so no one really knows the mechanism of action of this disease. I guess is just God and little bit of luck, as I like to say.. I really hope you can find a good doctor who, at least, believes that you have all the symptoms you're complaning about (many doctors don't believe us when we complain about extreme fatigue and other terrible symptoms). Let us know how it goes..

Oh. I denfintly will keep you posted yes I am in the USA it does give you about drs. Than me a inhaler with steroids in it and it shoots my blood pressure to the moon don't understand why crazy never did that before have you ever that happen granny

Also I am 35 and first time I was told I had it I was 30. I do worry that it will spread more as I have read up on different things but Google can be a great friend or then again can make you worry unnecessarily. So don't read up to much best bet is to talk to a specialist. I see the top doc for sarcoidosis in Ireland.

Hi AmandaPC,

I was diagnosed in march this year with pulmonary sarcoidosis. Don't have it anywhere else even though my liver and spleen are a little enlarged. I have been on steroids since my diagnosis and on a reducing dose. I am totally baffled by the fatigue I have. I am off work since mid January. I am a community nurse which is very busy. I am hoping to go back to work soon but don't know how I will cope with the fatigue. How do you handle the fatigue? I have started back walking. I live in Ireland what is the name of your specialist? I am under a respiratory consultant. I'm thinking of transferring over to a sarcoidosis specialist.

Any hints on how to cope with this condition would be helpful?

Polly

Not yet but going to a Dr specialist in about this will ask a lot of question you got any question I ask him to thank you granny

Hi polly,

Well I have been out of work since 1st October last year and been on steroids since the 23rd October , long enough at this stage, I am hoping to be off them in the next few months as they are reducing me monthly. My side effects consist of fatigue, mood swings, anxiety, dizzy, also my eye sight got worse and had to up the prescription on the lenses due to sarcoid and steroids. I have put on weight and my face is very swollen with broken vains on my cheeks.

Dealing with all these is difficult at times but I try to get as much rest as possible, I don't sleep during the day but I have cut down on alot of things I would normally do the heavier stuff where I would be tired from doing or sore because I have constant pain. So my partner does what I can't do. I have changed alot of my diet to try give me energy so eat more healthier foods I also take vitamins which I find great to help through the day. I take the baby swimming once a week and that helps me and her lol.

I try to stay positive and I can feel myself slowly getting there. This time last year was not a nice time but even with the side effects I'm glad these steroids have worked. I also sleep 10-12 hours a night to help.

Where in Ireland are you? My doctor is professor seamus donnelly in tallaght Dubl

Hi there,

I live in Limerick. I'm under the care of a respiratory consultant in Cork even though I am nearly sure there is a sarcoidosis specialist in Limerick. My consultant has been very good but I think I may have to increase my steroids back up if I feel any worse. Being reduced down to 10mgs from 15mgs next week.

I too get very moody which is a bit scary. I get very irritable in the evening and noise drives me mad. I have two small kids who are very energetic which can be difficult .

Visited my occupational health doctor today, I'm going to be off work for another 3months. I am disappointed but I know I have to look after myself.

Hope you continue to feel better. It is so nice to speak to people who feel like I do. Sarcoidosis is very misunderstood.

Regards,

Polly

Thanks Granny,

I'll think of some questions and send them on to you. I have read that following a really healthy diet helps. I was doing very well but I have fallen off the wagon. I think I am just a bit peeved and moody and food is a comfort.

Hope you feel better soon

Regards,

Polly.

Hey Polly

Your specialist seems to be doc Aiden O'brien, which is showing for limerick.

I know how you feel with the children myself and my partner took on a baby of 5 days old in August last year and I had already been diagnosed very tiring but you push through. I started on 40 ml and now down to 20 they only upped them when I got sick. Due to steroids your immune system becomes very weak and in January I got a chest and lung infection and then in Feb was admitted to hospital with.a bowel infection which I was told is very rare in Ireland for people to get because our food source is.so good. I was in for 5 days. It's very important Polly that you stay away from sick people because you could.fall sick.

Anyway enough of negativity, it is great to talk with other people of the same but stay positive, eat healthy and maybe try some exercise when you can, maybe juicing in the morning time too, take turmeric capsules and research anything else anti inflammatory like garlic etc... Good luck.

Thank you Polly for you going give me question to ask it does make you mad just know I am here granny

Hi granny,

My name is Amanda and from my posts you will see I'm a fellow sufferer.

You want questions to Ask?

Ask why does the sunshine affect it? Why does vitamin d and calcium affect it? What foods should be eaten when you have it, after all it is an auto immune disease. The steroids only keep it at bay. Why they don't put you on steroids when it's just on your lungs or liver?

I got some answers from my specialist but it would be interesting to see if you get the same response.

I hope your well

Amanda

P.s what country are you in?

Hi Amanda, Polly and Granny...

I'm sorry to hear all of you were and still are so sick! I'm not sure if your doctors told you, but my doctor told me that I can take immune system boosters under steroid treatment. This way, you can maintain your immune system close to normal functioning, which will help you avoid all sorts of diseases (including cancer, which anyone can get due to immunodepression). I didn't know it either, but when i took the second round of predison and I was afraid that my TB infection will become active again (I had TB a few years back, probably because of the same prednisone treatment, which I had previously taken for 2.5 years), my doctor said that no one stops me from taking immune system boosters. She even advised me to take some really good, natural products that have been proved effective (I took some certified products, with great reviews online, from real people). PM me if you want to know exactly what I'm taking -- we're not allowed to share links or meds names over here. I think it's a good question to ask your specialist, especially when your health is at stake. I didn't research this thing but, since I was unhappy about the second round of prednisone, and I didn't want to go through the ordeal of having TB the second time (which, by the way, culminated with thyroid cancer), I took immune system boosters without hesitation. It seems they worked, as I'm still around, as you can see. I just finished my prednisone treatment, which by the way, was completely useless (all the inflammation inside my lungs turned into fibrosis and, what's more, sarcoidosis spread beyond lungs, just as I hadn't taken any meds). However, the good new is that I had not even caught a cold during the time I took prednisone (nearly 2 years). I wish I would have known this before I got that TB infection and developed cancer. So, my advise to you is to be careful and watch your "back", as few doctors will watch it for you...

All the best,

Magda

Hi Magda,

I have been recently diagnosed with skin sarcoidosis, awaiting tests to see if it is anywhere else. I am very interested in what you take to keep your immune system healthy but I don't know how to PM on here

TJ x

Hi Amanda,

My occupational doctor wants me to have my calcium and vitamin D levels checked as being on steroids can cause osteoporosis. So I am a bit confused as to why you need to stay away from vitamin D and sun as it is needed to absorb the calcium into your bones. I know people with sarcoidosis in their kidneys have to monitor their calcium levels in case of kidney stones if their calcium is too high.

Polly

Hi Granny,

I think a question you should ask would be,steroids can cause brittle bones do I need to have my calcium and vitamin D levels checked. But on the other hand is it safe to go out in the sun with sarcoidosis? You might also want to ask about having pulmonary function tests to check your lung function as they can show if you have sarcoidosis too. They can check your serum ACE levels which indicates sarcoidosis. They also checked my liver function tests as steroids can affect your liver. I am also a type 2 diabetic newly diagnosed and being on steroids affects my blood sugar levels. I am on medication for the diabetes too but once the steroids are finished I'm hoping to come off those.

When are you seeing your doctor did you say? Best of luck, Polly.

Hi TJ,

For people like yourself with skin sarcoidosis you need to be careful with sun exposure. You should have your calcium and vitamin D levels checked. So sun cream and small amounts of time in the sun.

Regards,

Polly

Than said it would cause more problems an Dr won't give anibotic either I am so stress because with out Med it spreads more than can't me I been a cna long time work drs and nurse I know what going on I am usagranny

Antibiotics won't help with this condition. What investigations have you had? I had a lot of tests because they thought initially I had pulmonary lymphoma so to me a diagnosis of sarcoidosis is a much better outcome. I had thyroid ultrasound and biopsy but that was benign. I had a ct lung biopsy which was inconclusive. I had a load of blood tests and finally I had a bronchoscopy which finally led to my diagnosis of pulmonary sarcoidosis. It was along road but having a diagnosis and being on treatment has helped.

Keep your chin up Granny, I know it's disheartening but we are here to support each other.

Polly

Hi Polly,

Sarcoidosis feed off the vit d in your body so even if your levels are taken and it's shows a low amount your body prob has plenty in it. This happened to me and it showed that I had none what so ever so I was put on vit d tablets one a day equivalent to 15 portions of salmon a day, this bring my vit d level really high. My doc has advised me that that could of being one of the reasons why it came back like it did IE spread to different organs because of the amount of it in my body.

Read up on it, I've also been advised to stay out of the sun and not to have to mich calcium or take multi vitamins.

Hi Polly,

Thanks for the information. Looks like sarcoidosis has put an end to my sun bathing. I love the sun too.

TJ x

After thyroidectomy,I had big problems with calcium and vit D (levels were always lower than they should had been); I took plenty of vit D and calcium supplements (I'm still taking) only to keep my body functioning well. I've never had elevated levels, though it's true that after i spend more than one week in the sun, I start to feel worse. And yes, steroids can cause osteoporosis; it's good to check your calcium and vit d levels at least twice a year and if they are lower than normal, your doctor will most likely recommend you to take supplements. I guess it depends from one person to another and for this reason, you should have your levels checked.

Hi Amanda,

there are several studies published online by governmet, where they say that: "Hypovitaminosis (which is vit D deficiency) D seems to be related with more disease activity of sarcoidosis and, therefore, could be a potential risk factor for disease activity of sarcoidosis. Thus, vitamin D-deficient sarcoidosis patients should be supplemented." I'm going to send you those links...according to the same studies, vit D supplementation is risky only in patients with high levels of vit d and kidney disease. also, it seems to be some problems with calcium...it's quite confusing when specialists contradict themselves...how could we, the patients, take the right decision?

Thank you and yes it will be very interesting what than both say you I dealt with it in the lung s for along time but since it move OMG it's whole total different ball game I feel if I don't get answers and help from the right who knows what will happen granny

There calling me 18 of this month to set up appointment granny for sure I have it