Sarcoidosis has returned to my lungs...I need help!

Posted , 6 users are following.

I was just put into the hospital last Friday 8-28-14 and was having problems breathing.  My oxygen would go down to as low as 58 at times then back up to 90.  I had many tests but the one that came back with the return of Sarcoidosis in the lungs hit hard.  I told my doctor flat out that I will not go back on steroids...never.  It caused so many secondary problems and I will not go through that nor put my family through it again.  I was also on methotrexate and plaquenil.  While those two also had side effects, it was nothing like the steroids.

If any of you have had recurring sarcoidosis to the lungs, what protocol did you take?  I'm seeing the doctors next week and I would like to have something to check into before I see them.  Please, any help is always appreciated.

Frustrated

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  • Posted

    Have never been hospitalised with my sarcoid which is on my lymph nodes around the lungs but the only treatment I have ever been offered is steroids. My GP and I discussed at length and decided that the side effects far outweighed the benefits so have never resorted to using them. I have however used herbal medication which you have probably seen me discussing previously using a qualified herbalist and with the blessing of my GP as I can't tolerate many drugs.

    i do feel for you

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    • Posted

      I can check that out, so thank you!  I was hospitalized because my oxygen was dropping down to 58 and I was passing out.  So,  I am now home on oxygen...but for 5 days it put a damper on the holiday weekend.  Plus a little added stress from the forum caused me to flare up from the anxiety.  Anyway, I appreciate your response.

      Frustrated smile

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    • Posted

      Hi Frustrated,

      so sorry you have to go through all these!!

      whenever you cannot breath, try to keep calm. anxiety won't help - on the contrary, it will make breathing even more difficult. Just close your eyes and say (in your mind): "breath. breath, breath". Maybe it seems stupid, but it helped me a lot in the past, when I couldn't stay without oxygen at all and I couldn't breath, even on oxygen, sometimes.

      It is good to have oxygen at home - although it is a sign that your condition progresses - it will help you a lot. You will see in time how good it is to have oxygen whenever you need it, without having to go to the hospital.

      Regarding the treatment, I would advise you to go back on steroids - yes, sorry!. Try to convince your doctors to give you something like prednisolone - it is better in regards to its effect on internal organs than any chemo drugs, which really destroy everything - and ask for a lower dose, such as 24mg/day. This is in the beginning, until you can function "normally" again. My treatment plan goes like this: 24mg/day one month, 16 mg/day one month, 8 mg/day one month and then a checkup.

      Once your condition starts to improve and you can move around without oxygen (sarcoidosis symptoms will get better under steroids - and hopefully, soon), go and see a naturalist or a homeopath. However, make sure that the professional you are going to see is good and has some experience in treating sarcoidosis. If the wrong treatment is given, it will be completely ineffective.

      I'm also on steroids now, and I'm sheduled to see my homeopath next week, on 09/11 - I can't wait. However, I must admit that my condition has slighly improved under steroids - which is also good for homeopathy, as it will be even more effective if the disease is not too advanced.

      I've read a lot about homeopathy online and there are some studies, which confirm that sarcoidosis can be treated with homeopathic remedies. Eventually, your naturalist or homeopath will be able to replace the steroid drug you take, as your allopathic doctor will be lowering the dose slowly, with natural remedies that address sarcoidosis and its symptoms, including inflammation that facilitates scar spreading.

      A few years ago, I was also unable to do anything without oxygen; even with oxygen, doing simple things was almost impossible (there was a time when opening a yogurt container - the plastic one that even kids can open - was a really challenging task / I just couldn't open it without a big fight!!biggrin. I took steroids and homeopathic remedies. After about one year and a half, my doctor told me that the sarcoidosis had stopped and I we can try to eliminate steroids for good. We did that, and I have been off steroids for four years.

      Now, I will repeat the treatment (steroids + homeopathy), and I hope the disease to become dormant again, especially that this time I feel much, much better at the time when problems have started.

      what esle can i say? I can't say how sorry I am that you feel so terrible. I know how it is, especially when you don't see it coming!

      I hope you'll feel better soon, my dear Frustrated smile.

      All the best,

      Magda

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    • Posted

      Magda ~

      You are so kind with your words.  A trait I try to achieve daily.  I fail at times but it makes me more sensitive to others and I try not to step on anyones feet.  You, have a gift!

      As far as the steroids, I ballooned up to 275 pounds and I am 5'8 and normal weight is 155.  I was in trouble.  It caused me to have sleep apnea, my body took a huge hit...stretching in parts of my body that shouldn't have stretched.  And, made my breathing even worse because my neck was huge!!  So, if I wasn't upright, I was struggling.  When taken off the steroids and put on Methotrexate, I was nauseated, which I did not like...but that was the worse of it. 

      I came back down to my normal weight, mainly because even on steroids it's said that steroids makes you eat more, I was the opposite...I couldn't eat.  My husband nursed me with broth and other little bits until I could handle something w/o feeling like I wanted to vomit or diarrhea. (sorry for the graphics). 

      I will, however, look into your suggestions and see if it will work for me.

      Again, Magda, thank you for all your help and kindness. 

      Warm regards,

      Frustrated

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    • Posted

      Well, I was thinking that you ca take steroids 3-4 months, not longer. Until you start an alternative therapy. if you can find a good naturalist or homeopath, s/he can help you a lot, so you can eliminate steroids from your treatment completely after several months.

      I really hope that you will be given the chance to treat your condition as naturally as possible. Nothing compares to a natural treatment, with no side effects.

      Take care and hope to talk soon!

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    • Posted

      I've been up all night again.  This is night two.  I did sleep for about an hour or two yesterday and hoping I'll get some today.  I don't know why I'm not able to sleep but it's getting to me and I know it's not good for me. I just lie in bed and flip flop over and over until I'm bothering my husbands sleep.  So, I end up getting up and head to the sofa and either answer posts or emails or facebook...or shop cheesygrin

      As far as being treated naturally, I could go for that.  I have to phone my friend so she can set me up with her homeopathic and again, I believe I said that last week. 

      Oh..I guess I can give myself a pass seeing that I was a bit busy in the hospital!  So, I will call Becky today and get this taken care of once and for all!

      Not sure if I'll post this weekend...I'm guessing I probably will but if not, I'll catch up on Monday.  In any case, you take care of yourself and ttys!

      cheesygrinAlso, I'm in the United States not the UK...just giving that little tidbit

      Be well

       

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  • Posted

    Hey!

    Just signed up after doing a little research and stumbled accross your post. 

    I too have Sarcoid and am trying to avoid Steroids. So far so good. 

    I am doing all I can naturally with diet change and other strange things my Doctor would laugh at. Wishing you the best of health! 

    Emis Moderator comment: I have removed the product names as we do not allow repeated posting of product names in the forums. If users wish to exchange details please use the Private Message service .

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Hi knackeredcow~

      Thank you for your post!  I will check out the book, thank you for bringing that to  all of our attention!  Also, is the juicing different ingredients that would help one with their diet as far as taking in greens etc...?  I have another discussion on here (forgot the name lol, it's been a while ago) but it did touch on this.  I had several responses that helped me in this direction.  They have been on the Juicers for quite some time.  I did go out and purchased a juicer (not one of those expensive ones but it does juice everything, leaving nothing to toss out).  I am amazed how my body feels when I drink those drinks on a regular basis.  Lately, I've been under the weather not only from the Sjogren's I suffer but my husband and I had a touch of the stomach flu.  Mine is still haning on and it's hard to take anything in let alone roughage and fruits and veggies.  Enough of that negativity!

      I appreciate your input and will let you know what I found out when reading the Cellular Awakening...it sounds very interesting!  That will go in my Kindle Fire and taken to all my doctor's appts.

      So with all said, I wish you a healthy 2015 and thereafter!  Please feel free to write if you find anything new on this awful affliction!  You are very lucky not to have to take steroids, I wasn't so lucky.  I've been in and out of remission, currently I'm in full swing with it coming back in the lungs and now my heart.  Anyway, again, I thank you!

      Warmly,

      Frustrated

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