Recently I have been diagnosed with Pulmonary Sarcoidosis
Posted , 9 users are following.
I find it very disheartening after learning I have Sarcoidosis that there is little to no information on this illness. I am 56 years old Woman and have most of the discribed symtoms I have read about; enlarger lymph nodes, severe tiredness, pain in my joints, sweats, weakness, coughing, and trouble breathing at times.I am not sure of what to expect and how to feel about everything I have been reading. I have been looking in all directions for some kind of answers. Recently I was told all of the symtoms of Sarcoidosis is the same as some parasitic infections, determined through a simple blood test. Has any one heard of this? I have been holding off with taking prednizone but take a symbicort inhaler up to 8 times a day. Would love to hear if anyone has any suggestions. I have read to eat a good diet and reduse stress levels, I am sure both would be an excellant idea. any diets that have helped anyone? Hoping to hear from anyone with sugestions.
1 like, 12 replies
carla46710 Nana_Deborah
Posted
Nana_Deborah
Posted
magdafloasiu Nana_Deborah
Posted
sarcoidosis is definitely a terrible disease...but you can live with it. Personally, I prefer taking prednisone to symbicort - the inhaler causes me more breathing problems because it's a powder that goes directly into lungs. However, it may depend on how much your lungs have been affected by the disease.
Yes, there isn't plenty of info online and it seems that doctors know even less. What I know is that sarcoidosis affects lungs in more than 90 percent of cases. However, the disease tends to spread and affect other things, including stomach, spleen, nerves, muscles, joints, eyes, sinuses.
In my case, after years of exacerbation, I've been left with half my total lung capacity, cataract in the right eye (not too advanced), muscle weakness and many other symptoms you describe above. The good news is that, unlike many of fellow sufferers, my joints haven't been affected at all. So, it really depends from one person to another.
I've never heard about sarcoidosis being a parasitic infection. There are some studies which seem to confirm that it is caused by a specific combination of bacteria+genetic factors, but the strange mechanism of action of this disease made it almost impossible for scientists to come up with a treatment. The only "treatment" we can get is anti-inflammatory medication (prednizone), which slows down the disease. In some cases, sarcoidosis can be dormant for years and then flare up suddenly; in other cases, it's active most of the time. But from my own experience I know that even when sarcoidosis is dormant, the patient may still experience some symptoms like night sweats, weakness, coughing, severe tiredness.
And yes, eat a healthy diet, try to sleep at least 8 hours a night - I know, it's impossible, but do your best - and stay away from stress, as it is one of the worst enemies because it can cause sarcoidosis to exacerbate.
Also, you mentioned that you looked everywhere for answers. This forum is a great place to ask your questions
. Though we're not specialists, we know about this disease more than some doctors do. What's more, we are willing to help people who, just like us, learn how to live with sarcoidosis every day. So, feel free to ask any questions about sarcoidosis; we'll do our best to answer.
Good luck and have a great day,
Magda
Nana_Deborah
Posted
Thank you for the support and the good advice, I do find it rather scary not knowing what to expect, being a person who like to be in control I feel that is not an option. I is wonderful to find a place to ask questions from people who care and know what I am going through. Much appriecated.
Have a great day and thanks again.
Deb
chris0814 Nana_Deborah
Posted
I am a 55 year old male that was diagnosed with Sarcoidosis in September. The medicine regiment I am on is Symbicort - the inhaler 8 times a day also 10mg on Thursdays of methotrexate (4) pills with a vitamin supplement FOLIC ACID. My worst part is the continued coughing and always having the sensation of gaging and choking. I was diagnosed by having surgery and biopsies. I was instructed by my specialist not to go on a strong prednisone steroid daily regiment due to being diabetic. The steroids really raise the sugar levels including the A1C.
I just got back from the cardiologist and the wall to my heart is thickening. They want to follow up every 4 weeks. This is not a real friendly disease for anyone to go through.
Please if there is anyone out there that takes another form of meds let me know
Chris 0814
magdafloasiu chris0814
Posted
I am really sorry for what you're going through. When I was on Symbicort, I used to cough a lot and had the same chocking/suffocating sensation as you do. Maybe you could ask your doctor to change the inhaler with a better product for you. Also, it's important to know which type of cough you have: dry cough or productive cough. In my case, I have productive cough, but sometimes I just can't expectorate, which makes me cough really bad. My doctor advized me to take ACC 600 effervescent tablets from time to time to fluidize mucus inside the lungs and expectorate easier. It does help me and usually, after I take one bottle of ACC, I can finally expectorate and feel better.
Regarding your heart condition, sarcoidosis can defintely affect the heart. The problem is to detect if heart wall thickenning is due to pulmonary hypertension (PH). If it is, you should get some treatment soon, as PH is a terrible complication of sarcoidosis. Usually, in patients affected by PH, the right part of the heart becomes thicker to counteract the rise in pressure in lung vessels; and this is all because your lungs don't function properly. I don't know how PH is treated, but I do know that oxygentherapy can help - it provides your body with more oxygen, so your heart doesn't have to work that hard to get oxygen to your internal organs. If they didn't give you any treatment, probably it's because the disease is in its incipient stages. However, as far as I know - I'm not a doctor, but my regular doctor always sends me to have my heart checked, worried that I could develop PH - the sooner you start the treatment, the fewer complications you'll develop. If your heart doctor didn't give you any treatment, it wouldn't hurt to ask for a second opinion from a doctor who focuses on preventing complications and not just on treating them as they occur. I mean, following up every four weeks is good, but kind of useless if no treatment is given. I've been in and out hospitals for more than 10 years now and one thing I learnt is that not all doctors are the specialists they claim to be. Honestly, I found a good doctor, who really knows something about this disease and can help me, after several years of "testing" different doctors.
Also, if you have throat irritation, tell your doctor as soon as possible, as it may be one of the dangerous side effects of symbicort. In addition, symbicort may cause high blood pressure and fast heart rate, which isn't good considering that you already have a heart problem. Also, this medication can cause severe sudden worsening of breathing problems...so, it's better to monitor yourself closely (including measure your blood pressure every day) and, if any of these symptoms occur, talk to your doctor right away. And sorry to tell you, but as far as I know, there isn't any other treatment for sarcoidosis except for prednisone (or corticosteroid-based inhalers) and methotrexate. However, make sure that you take the drug only as long as sarcoidosis is active. When it becomes inactive, your doctor should stop the medication. I've been prednisone-free for about 3 years, and it was sooooo good.
Good luck and let us know how everything goes...
Magda
chris0814 magdafloasiu
Posted
Thanks so much for the awesome reply. I saw the specialist yesterday. The are going to have me continue the methotrexate for 4 more weeks and the Symbicort. If this does not have any changes they want to refer me to an oncologist. The other choice is to go on prednisone steroids and insulin for the diabetes. I take Metformin for it now , but the steroids will raise the glucose. Do not want to go on insulin and steroids. I will keep you up to date on what will take place.
Thanks for sharing it really helped,
Chris.
magdafloasiu chris0814
Posted
I'm not sure why they want to send you to an oncologist. Sarcoidosis has nothing to do with cancer. It's true that sometimes doctors give patients chemo drugs to treat sarcoidosis (I took chemo drugs for 4 months, but I can't remember which type of drug as it was 7 years ago; I felt terrible- it had awful side effects, it didn't help me at all with my condition, so I can say that it did more harm than good). Additionally, as far as I know, the latest studies have shown that chemo is completely innefective in treating sarcoidosis. Sometimes, doctors are unaware of the latest studies, so it's always better to look for information before taking any tratment. You could google topics like "sarcoidosis treated with chemotherapy studies" and visit sites like my(dot)clevelandclinic(dot)org, stopsarcoidosis(dot)org, or chronicillnessrecovery(dot)org. As far as I know, even using steroids to treat sarcoidosis is not FDA approved..but doctors use these drugs anyway because it is the only thing they have. There are many contradictory opinions; for instance, while some specialists say that sarcoidosis should be treated with steroids, others prefer chemo, while others recommend antibiotics. Others try everything they can, hoping that one of the drugs will stop the disease. In my opinion, the best thing you can do is to consider all the information you find, check online for studies from .org or .gov sites and take the decision that seems the most logical and best one for your situation. Since I've been hospitalized for so many times, I've seen specialists making terrible mistakes and patients almost losing their lives. Even in my case, doctors did a terrible mistake. They put me on prednisone without telling me anything about the fact that this drug lowers the immune system and forces potassium out of the body. I didn't even read the leaflet, thinking that the doctors would have told me if there was something I had to know. After 1.5 years, I developed a terrible TB infection and the level of potassium in my body was close to zero - potassium is very important for the heart. I had to take anti-TB tratment, whcih is almost as strong as chemo drugs, for 20 months to get rid of that TB infection ( and there were many conplications I had to go through). Now, I'm on prednisone again, but this time I asked the doctor if I can take immune boosters, and she said:"Of course. You have to take, other way TB will be back again." But she told me this only after I asked her. I don't want to know what would have happened if I hadn't asked the right questions...Then, she also told me to take potassium supplements. So, don't just trust doctors blindly. Do your own research (but do it thoroughly), ask them questions - most of them won't tell you anything if you don't ask - and take a decision after you know as much as possible... The truth is that taking an informed decision is impossible if you know nothing about the condition, the treatments available and their side effects; unfortunately, most doctors ignore this aspect...
Once again, good luck and take care...
nat92691 Nana_Deborah
Posted
Hello All,
I was diagnosed with pulmonary sarcoidosis in 2010. I noticed everyone saying they take prednisone or symbicort. I refused those drugs and was given naproxen 500 mg and that got rid of my symptoms. My ankles and feet had gotten so swollen I couldn't even stand up and hold myself up. But after 2 weeks on naproxen, I could walk and saw a huge difference in swelling after just a day or two. I have not had a flare up until recently. I became pregnant and the father was causing me extreme stress and docs all thought the swelling was water retention the last 4 months. Come to find out it was my sarcoidosis flaring up. I have been on naproxen for 2 days and see a huge difference. For all of you on the steroids check out naproxen first, if you can.
gail_24648 nat92691
Posted
Hi nat, I am interested in that you are on naproxen, I have been on this in the past, not for sarcoidosis, I have recently been diagnosed with sarcoidosis and waiting to see consultant, I am type 1 diabetic so the usual steroid treatment wouldn't be good for me, I am feeling achy, tired and sweating at night, I am wondering if could try naproxen now as have a few weeks till see consultant?
The_Chief Nana_Deborah
Posted
Hi Deborah, With myself diagnosed back in1987 aged 21 I had it that bad that I spent nearon 3 months bedridden & out of work 4 months, Doctors and Specialists were scatching their heads to what it was my lung funtion was down to around 25 percent I had bad fatique couldn't do anything abart from going to the toilet or the letterbox to try and move my tired joints in the short term they threw heaps of cortizone/steroid treatments at me tablets and inhalers to try and curb the issue with me. Specialists had to eliminate at least 5 nasties but maybe only one or 2 good ones they said that may not kill me but maybe with me for the rest of my life but could be controlled by medication so from their list of nasties being HIV Aids, Sarcoma, Lymphoma, TB etc, they did mention it could be Sarcoidosis but is very rare disease here in Australia not well understood but people may have been for TB as it mimics this disease. I was tested like a pin cushion with bloods, x-rays, urine and fecal tests so embarrasing but they requested a Lung Biopsy so they could eliminate some of the larger Lymph nodes in my lungs and check them to see what was going on as back then they were really only guessing the medications did help during this time and after the finding the regulated the medicines so after 6 years I stopped all medications as there were some side effects with those but it was under the condition I would regularly get tested to see how I was progressing and to this day at 51years of age I will always have my bloods tested and x-rays each year but will pop into the Doctors usually each month to let him know how I'm going it's basically maintaining a management system towards my body, I still suffer from joint pains, nerve jolts, night sweats, pimple blisters also a few things that are lacking in my system that may need attention with vitamins etc. With diet just maintaining your fruit and veg intake decrease alcohol and fats going in and I'm fine the only thing I had cut coffee down completely from 20 odd cups a day to one but took up black tea drinking but that has had a real bad effect on me as it has depleted my Iron in my body which have increased my Clolesterol levels to high levels so replaced this with peppermint tea including an Iron supplement will get checked in a months time to see how everything is going my lungs were full of Lymp nodes know they have subsided their at 90% percent to what they used to be but can flare up if I get a common cold, but I would be requesting a Biopsy and possibly medications to get on top of this disease as it can turn bad just by getting the common cold can put you in trouble, all the best with your progress stay positive that's how I've got through having this thing called Sarciodosis don't allow it to beat you, take care..
seerina The_Chief
Posted
How are you doing now? I was recently diagnosed and I am very scared. I am on prednisone and the Symbicort inhaler. In the last month I had to increase the prednisone from 5 mg to 20 mg and I'm still having trouble breathing .