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Anyone like me?research?

Posted , 5 users are following.

bette77285
bette77285

I was diagnoded with saecoidosis stage 2 lung involv=ment early in 2013. The grsnulomas in my lungs have been consistently getting worse with every cat scan with the exception of a periosd on a highbdose of prednisone i dont have many lung symptoms. I would like to know if there is anyone else like me with this continually progressing condition and what i can expect for my future. My dr wantsq me to go on a permanent dose of 10 ml prednison . Iq am struggling with that because of rhe side wffects. Also wondering if anyone out there has sought more insight or help from a research center and ro what avail

1 like, 13 replies

13 Replies

  • tangles
    tangles bette77285

    Posted

    Bette

    I was on 60mg daily for two years and another year getting of them. 10mg to me does not sound like an issue at all and the benifits could be great for you.

    Yes there are side effects but these are not permenant. You need to make a dicision on how important your health is to you.

    Hope this helps

    Regards

    Tangles

    • bette77285
      bette77285 tangles

      Posted

      Thank you for responding. You are right. It is definitely a decisiin to weigh out
    • tangles
      tangles

      Posted

      Hi Bette

      When I was treated at first with a low dose it made no difference to my health. They told me to really enjoy the Xmas with my family that year. When specialist tell you this it causes a high level of alarm. I live in Australia, a message came from USA that low dose was a waste of time. So, I was put on 60mg for two years (very high dose) yes the side effects were not nice. However, it cured the sarcoid so it was worth it. This story is 30 years old so I guess medicine would have improved since then. At least I would hope so.

      So, what ill effects do I have now in my sixties?

      Joint pain especially my knees I think due to granuloma.

      Enlarged spleen and liver.

      Granuloma present in my bone marrow tested 2008.

      Lungs clear, I have them checked regularly.

      Whilst there is no true cure, I am in remission. This means it could come back at any time. However, over 30 years it has not. I keep my fingers crossed and watch my health constantly. Including regular chest x-rays and lung function tests.

      We will all react differently to the treatment. All hoping for positive results. For some of us this will happen. I read with some sorry the experience in health that Maria has suffered. 

      I hope both you and her return rapidly to better health.

      From my experience steroids (preisone) has its evils but for sarcoid suffers I believe there are not other avenues. If any one does know of one please tell us all so that we can all benefit from that knowledge.

      Regards 

      ​Tangles

    • bette77285
      bette77285 tangles

      Posted

      Thank you for sharing. Your story makes me hopeful.
  • magdafloasiu
    magdafloasiu bette77285

    Posted

    Hi Bette,

    though 10mg of prenisone may not seem that much, it can definitely destroy your immune system if taken for a long time. I was on 16mg of prednisone for 1.5 years in the past; everything ended up with me getting a terrible TB infection+ other bacteria that accumulated inside my lungs; It took me nearly two years to get rid of that infection. The lower lobe of the right lung is no longer working because of a pneumotorax also caused by infection. Also, my lungs are full of scars...So, my advise to you is to talk openly with your doctor and ask him/her if you can also take some immuno boosters to help your immune system. In my case, my doctor prescribed prednisone once again (i've been taking it for about 1 year) to keep sarcoidosis under control but also told me to take immuno boosters to prevent TB recurrence. Also, pay attention to calcium and potassium levels (maybe take some supplements), as prednisone gets these two minerals out of your system, which can also cause many issues (e.g. heart problems, to mention just one of them).

    Also, I'm not sure if you can see another doctor for a second opinion. In my case, the doctor told me first that I had idiopathic fibrosis. My condition had also been consistently getting worse so the doc told me that I needed lung transplantation or I would die. But after they discovered (by mistake) that I actually had nodular TB and treated it, they finally diagnosed me with sarcoidosis stage 4.

    In conclusion, trust your doctor but always ask for a second opinion, especially that the x-rays showing pulmonary problems (e.g. TB, sarcoidosis, fibrosis, lupus and even cancer) look almost the same. I'm not sure how they diagnosed sarcoidosis in your case, but many lung diseases are difficult to diagnose corectly and they can easily be confused with other diseases that present similar symptoms. Check online for "can pulmonary sarcoidosis be confused with fibrosis", "fibrosis confused with TB" "sarcoidosis confused with TB" and so on; you'll be surprised of what you'll find.

    Take care and all the best,

    Maria

    • bette77285
      bette77285 magdafloasiu

      Posted

      Thank you for so much helpful info. My sarcoidosis was discovered by accident but confirmed by a biopsy of the lymph glands surrounding my lungs along with a bronchoscopy. Whats hard is i dont have any lung symptoms and i hate all the side issues of prednisone. Especially the immune system problems and the acid reflux not to mention the severe weiggt gain. Being that you have scarring what symptoms doea that trouble you with on a daily basis. My dr is encouraging me to seek out a research center on this disease. Have you ever done anything like rhat?
    • magdafloasiu
      magdafloasiu bette77285

      Posted

      In a nutshell, my symptoms include shortness of breathe everyt time I do something (sometimes even when I stand up and walk to the bathroom); severe desaturation (more than 10 percent when I do more intense physical activity); chronic hypoxemia (my oxygen level in the blood is around 60 percent, when it should be minimum 80 percent); cough with little, thick expectoration especially in the morning; and cough when I go outside in cold/wet weather. Unfortunately, I was unable to find a research centre in my country (I'm from Romania, and here the entire health care system, including research, is still based on outdated norms and practices, so no research is done on rare diseases). I don't understand why your doctor told you that YOU should look for a research centre when s/he should direct you towards such a centre...

      The fact that you don't have lung symtoms is good; however, - and I don't want to scare you - sarcoidosis may also affect other organs. So, it's better to inform your doctor of any new symptoms you observe. Also, you should lose some weight as, if there will be any lung involvement later on, all the symptoms (shortness of breathe, desaturation, etc) will be much severe. I've been on and off prednisolone, but I've never put more than 1-3kg. At the moment I realised that I put on some weight, I started losing weight to get back to normal. I know that you're always hungry when taking prednisolone (I was waking up in the middle of the night with the desire to eat something; instead, I used to drink water and go back to bed, though I couldn't really sleep...smile But in time I didn't feel the need to eat all the time. Now I could just eat once a day if necessary. Just keep one thing in mind: you're in control of your body and not the other way around).    

    • bette77285
      bette77285 magdafloasiu

      Posted

      Thanks for that info. I have a little shortness of breath. Sometimes i feel like the shortness of breath could also be due to being overweight and inactive. I think after tslking with you and the others in this blog i will go forward with prednisone afain. Thank you for sharing it is ibspirational
  • Skesher
    Skesher bette77285

    Posted

    I was diagnosed with lung sarcoidosis in early 2013 as well. see my earlier post.

    I have been on predinsolone (as it is called in the UK) since then, initailly at a high disage of 30 mg daily and then reduced at stages. The problem is that everytime the tests show improvement at high levels of the steroid and the steroid dosage is reduced, the lung function test shows worsening. Due to the continued steroid dosage, I have now got high bp and diabetes and am taking additioanl medication for that. In July, I agreed with the doctor to start methotrexate (weekly 2.5mg) while continuing with 2 mg daily of prednisolone. Next tests are in Nov and I will post at that time.

    I haven't seen any reserach on this. I consulted a second specialist and he has basically endorsed the treatment regime. 

    So, after 2 years of steroid treatment, I still have sarcoids in my lungs and have a bunch of side effects requiring medication. Steroids work for some people but clearly haven't for me.

    • magdafloasiu
      magdafloasiu Skesher

      Posted

      Hi Skesher,

      unfortunately, sarcoidosis is a chronic disease that can't be cured. It can only be controlled with specific drugs like prednisosole and methotrexate. Under these drugs, sarcoidosis usually becomes dormant but not always; even when it becomes dormant, none can tell you when exactly it will exacerbate again - it could be several months or several years. There are cases when sarcoidosis stays dormant 20 years; then it becomes active and none knows why. Evidently, this medication will have terrible side effects when taken for a long time. Prednisolone and methotrexane (in your country; in my country, they only give prednisolone) are the only treatments that can help control the disease, though some patients do not respond to these drugs at all and I'm really sorry to say that there are no alternatives for these people. In my case, the doctor also said that prednisolone didn't work (the first time when I took the drug), but I also had TB, which was actually worsening my overall (including lung) condition. Now, I'm taking prednisolone for the second time in my life after a break of nearly 4 years, and I can say that it has worked partially (part of the inflammation has reduced, while part has already caused fibrosis). I have never heard of sarcoidosis being completely cured with prednisolone or other treatments (and I've been in and out of hospital for 10 years) . These treatments only help control sarcoidosis so it won't spread that fast, but - regardless of what we do - it does spread.

      All the best,

      Maria

    • bette77285
      bette77285 Skesher

      Posted

      Thanks for responding. It seems like a bleak outlook for us. I have not had any symptoms due to my lung involvement as yet but i did have weighy gain, acid reflux and was sick all winter when i waa on the 9mo taper down prednisone treatment. It had very little effect on the worsening of my lungs. I worry about what the future has in store. Rright now i struggle more with the symptoms assoxiates with rheumatoid arthritis. What stage of sar oud are you in? What lung issue symptoms bother you on a daily basis?
  • diane22518
    diane22518 bette77285

    Posted

    Sorry bette77285 to hear of your diagnosis. I an too still learning about this disease and the best treatments. There are lots of great people on this site and much more knowledgable than I am. 

    I do know that steriods seems to be the best so far. I too am reluctant to take them. I do however think that some people start with steriods but their Drs take them off after a while. 

    I haven't started my treatments yet and hope that if I do have to take them i can start high dose and reduce down until I am off completely.

    I had some conversations about Melotonin being of some help. Others say it doesn't. I bought some months ago to help me sleep and never thought about it for sarcodosis. I did start back taking it to see if I could notice a difference. Can't say that I did, except to help me sleep.

    Try and eat good foods and drink lots of water. Sleep as much as possible. I eat organic as much as I can and stay away from processed foods. 

    I have been reading that Chemo treatment is one of the drugs thats sometimes is used. When I first read that, it scared the crap out of me, thought for sure sarcodosis meant cancer. That's not the case. While it does mimic cancer symptons, it is different but chemo does help. I don't want to take chemo either. There really are no good treatments as I can see. Just take good care of your self and talk and understand everything from your Dr. 

    I will continue to research and post anything I learn here on this site to help anyone I can. I hope others do the same.

    Take care.

    • bette77285
      bette77285 diane22518

      Posted

      Thanks for the response. I did a taper down 9mo steroid treatment. I started at 40 and went down from there gradually. The side effexts are problematic. I qained 20 lbs, had acute acid reflux attacks, and got sick all winter long. If you do the taper down ask the dr about drugs that help counter the side effexts. Lets keep sharing. Good luck!
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