Have not started meds yet. Too afraid!

Posted , 4 users are following.

I have been having problems for years, thought it was from smoking. I stopped smoking and still had same problems. 

I was sure all of my problems came from menopause. Thoight I was having a heart attack atleast once or twice per week. Finally had every test known to man and was told I had SARCOIDOIS! What is that? Had heard of it but never really paid much attention to it. Knew that Bernie Mack( comedian) had it. I am an insurance agent and one of my clients had it. But, still I never thought much about it.

Now, I am told I have to take steriods. I refuse that. I have been hearing about Melatonin. I will talk to my Droctor about it. I actually bought some about a year ago when I had problems sleeping. Tool it a few times and never paid attention if it made my chest feel better, or if I was able to breath better. I did go to sleep, but that is why I bought it.

Has anyone else hear of this possible treatment? If anyone is taking steriod, are you gaining lots of weight? 

What types of food are you eating?

What type of exercise? I get so out of breath on everything. I have considered a personal trainer. I don't know what to do ,Please help.

Thanks

Diane

1 like, 12 replies

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12 Replies

  • Posted

    I'm sure there are people on this forum who know a lot more and they will contribute.  But given what little I know it sounds as though you are having moderate (not mild) symptoms, that might even be getting severe.  In that case the steroid treatment is probably the best.  If you have mild symptoms, then the risks associated with prednisone might outweigh the benefits, but if you are starting to have breathing difficulties, then the prednisone or related med should really help with that, and then you work with your doctor to find the lowest dose that manages your symptoms.  If you do an internet search there are some credible medical sites that talk about other treatments, but the best researched one is the steroids. Risks associated with other medications are often quite unknown.  There is a lot we can do to minimize side effects from steroids.  If you have given up smoking and are leading as healthy a life as you can - moderate exercise and a good diet - then you are really doing what you can do.  Do you make sure you get plenty of rest and avoid stress as well (yes, hard, isn't it?).  Good luck - keep us posted!
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    • Posted

      Thank you for your response and advise. I try not to stress but it's of no use. I do it anyways.

      I am having trouble getting appointment with my Dr. I want to discuss the steroid treatment. Maybe I should look for a new Dr.

      I thought just by taking it , the weight comes automatically. I know weight should be the least of my worries but I am concerned.

      Please keep me informed on any new info that you might run across. Again, Thanks.

      Diane

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  • Posted

    Diane

    I was on steriods in my thirties now in my sixties, still enjoying life to the max.

    Steriod will cause weight gain (to the max) mood swings like never before.

    Life would be great if you can avoid them!

    My condition did not allow that  luxury, I did not know about side effects and was very confussed when they came along. Did not realise they were related to the meds. 

    You are much better imformed so in a better place to handle what will come up.

    If you think you are getting heart attacks twice a week then you have an advanced case.

    I suggest you have no choice but to take steriods as they work. You are armed with the facts so should be able to handle it better. Suggest that you limited the length of time on the steriods and the dosage.

    I was on 60mg daily for over two years. Way to much and way to long.

    However, they saved my life.

    Steriods are scary but the right med for our  condition.

    I am now steriod free and smoke free and enjoying life. Look towards the future rather then where you are now.

    Please let me know your thoughts.

    Regards Tangles

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    • Posted

      Thank you for your response. Glad to hear you are smoke free and steroid free.  

      So is it true that taking steroids is not a" forever" thing? I thought once you start, you have to stay on for life.

      If it's for a period of time, I can do that.

      Thanks,

      Diane

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  • Posted

    Hi Diane,

    about two years ago, I come here asking the same thing about melatonin. However, there are no medical studies to attest the efficiency of melatonin in treating sarcoidosis. I took melatonin for about 3 months; there was no improvement.

    For the moment, I would take prednisone or other steroid drug recommended if I were you. Usually, the treatment should start with higher doses (20-40, even 50mg/day). Within weeks, the dose should be lowered by 5-10mg until the doctor finds the lowest effective dose for you. For instance, I started taking prednisone last year in the summer. For the first two months, I had taken 25mg, then my doctor decreased the dose to 20mg, then to 15mg, and so on. Now, I'm on 5mg/day. Since I also had TB, my doctor advised me to take prednisone and an immuno booster so that my immune system won't be completely destroyed.

    While taking this treatment, you can look for other treatments. If you try other treatments first, sarcoidosis may damage your lungs irreversibly and your condition may get worse by the time you find something that works; it may be too late for you. Therefore, you should focus on getting a treatment that really works so that you get better as soon as possible. This will give you more time to look for other treatments.

    I also tried all kinds of herbs and supplements. To be honest, nothing really worked thus far. However, I'm not gonna give up... I still believe that we the human body has the resources to heal itself; we only have to find the right approach to healing. Now, I'm considering homeopathy, but I'm still looking for a good homeopath. Many homeopaths/naturopaths out there have no idea how to treat sarcoidosis, so they give all sorts of treatments just to take people's money.

    I don't follow a very strict regime. However, EQUILIBRIUM has become my life motto smile. I try to eat as healthy and naturally as possible (without any exaggeration), I try to sleep at least 6-7 hours (the more, the better), but I have trouble sleeping. Also, I didn't gain weight. As far as you don't eat more than before (prednisone may increase your appetite), you should be able to maintain your current weight. I don't really exercise, as my lung functionality has been severely compromised; however, I do exercise at home two-three times a week (especially stretching followed by some light, basic exercises; no cardio because my heart works too intense, which is not recommended). If you can find a good personal trainer, it can help you a lot. Exercise is very important in pulmonary conditions, as it can help with lung capacity. However, too much exercise can do more harm than good. 

    If you start taking steroids, you will be able to breathe better within weeks, which will improve the quality of your life. Once you start to feel better physically, you will also feel better mentally and spiritually, which will have a positive impact on the course of this illness. 

    Additional advice: try not to stress too much - typically, sarcoidosis exacerbates if you are too stressed; if you start taking prednisone, keep an eye on your calcium and potassium levels - since prednisone increases the excretion of these two minerals, it's better to take supplements; and make sure that you find a good specialist who knows how to treat this condition (maybe google the topic online - finding a good specialist is critical, as only the right treatment will help you control the disease).

    Good luck...

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    • Posted

      Thank you for your response. I am really getting some great responses here and I really appreciate all of you guys. It is so wonderful to be able to talk to someone that knows what is going on and understand.

      I try to eat as healthy as possible most days. Hadn't been sleeping too well, but tying to get more sleep now. 

      I have a specialist but not sure how great he is. Having problems now getting in to see him. He is always overbooked or on vacation. 

      I guess I have such a fear of prednisone because my son had to take it for asthma when he was a little boy. He started to look like a chipmonk within a week. He was cute as a kid, but it would not be cute on me.

      At that time I was a young mother, had very little knowledge of side effects and I totally took the word of his specialist and asked no questions. 

      I maybe my own worst enemy. Since google, I have self-diagnosed and I have concluded that I have atleast 80 diseases. All of which are fatal. LOL. 

      I am so exhausted with trying to solve my own health condition and I do not trust a word out of any Dr except Dr. Oz.

      Am I the only one here that does this? Please tell me someone else is doing this too. 

      Thanks,

      Diane

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    • Posted

      IF it is any consolation, I am taking prednisone for a completely different disease (polymyalgia rheumatica).  Before I started the pred I had lost a lot of weight.  I was told that the pred would cause a big weight gain.  My appetite did return, but I tried a few strategies to keep the calories down, as I want to regain my lost weight very slowly.  It appears to be working.  So much so that when I went for a bone density scan yesterday the technician remarked that I hadn't gained any weight (I have in fact put on about three pounds, over three months) and said that most people put on significant weight in the first month of taking steroids.  So, you see, it's not inevitable.  But it has taken a bit of willpower and eating a lot of salad!
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    • Posted

      Hi Diane,

      The good news is that you don't have to take steroids for the rest of your life. Also, I have a very efficient strategy. I always ask my doctor (every six months when I go to see her) if she can lower the dose and when I can stop taking prednisone. For instance, I saw her in August and asked if I can stop the treatment. She told me that I should continue the treatment 6 more months. When I asked her why, she said that sarcoidosis would probably exacerbate if we stopped the treatment. Or worse, the new inflammation inside my lungs will turn into fibrosis.

      But over the years, I've seen many doctors who were too lazy to consider other treatments or lowering the dose. Changing treatments/lowering doses indirectly means that they have to observe patients closely, which means more visits. Most of them don't want that. Therefore, they choose the easy way: give one treatment and that's it.

      So, I completely understand your reticence about not trusting doctors. I don't trust doctors either and, even though I know my doctor for more than 10 years, I still ask her questions. After all, she has a duty to present the treatment options I have, but it's my decision which treatment I follow.

      However, many doctors don't present all the treatment options. Even when they do, we have to spend hours reading online (thank God for the Internet) just to be sure that we choose the best alternative. I'm also exhausted reading forums, medical magazines, etc. just to solve my health problems - something that doctors should do. After all, this is their job - not to mention the Hippocratic Oath which, unfortunately, is has become a big joke these days...Unfortunately, the entire health system, irrespective of the country, has turned into a cruel money-making machine.

      Take care... smile

       

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  • Posted

    Diane

    You said

    I maybe my own worst enemy. Since google, I have self-diagnosed and I have concluded that I have atleast 80 diseases. All of which are fatal. LOL. 

    I am so exhausted with trying to solve my own health condition and I do not trust a word out of any Dr except Dr. Oz.

    Am I the only one here that does this? Please tell me someone else is doing this too."

    >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

    Yes, Dr Oz is probably the most believeable of all of them!

    You need to do your own reasearch such as you are now doing on this site.

    They do not tell you all. They asume you have the same training and knowledge as them, thus they do not need to explain themselves. After all you already know all of the info that is needed to face this problem.

    >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

    On the steriod side of things. I have already told you the worst, however, it is a medication that does a great job when it is needed. In our cases it is needed and in fact most necessary.

    Ask the doctor how strong and how long. Then arrange progress consultations to see how you are going and always ask during the consultations,should we now be starting to reduce the dose.

    Be brave and take the first step!

    That step will be the first one to start you in the right direction back to good health.

    Steroids meds are not forever, you will see a day when they are behind and your health has returned.

    Good Luck

    Tangles

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