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  1. #61
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    Feb 2006
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    Perth
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    12 months on with the Sarcoidosis and the last scan in Nov 2017 showed no progression with the condition and if anything a slight reduction in the granularomas around my lungs/heart so given I was feel sort of OK I thought I was going OK.

    I had my regular 3 monthly blood tests earlier this week and the specialist got the results this morning and called to tell me I have to start taking steroids immediately and to go and see him next week. Have just taken my first dose with lunch. Tis indeed a merry-go round.

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  3. #62
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    May 2014
    Location
    Canberra
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    Bummer. Good that you get regular checks though. Hopefully it is just a slight hiccup.

    Jane

  4. #63
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    Aug 2008
    Location
    australia
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    115

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    Could you have picked up a pathogen (bug) from the work with the clearing vines and roof work?
    the energy drop all started straight after the handyman work if I read correctly. No such thing as a coincidence.

  5. #64
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    Feb 2006
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    Perth
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    Quote Originally Posted by mrmoon View Post
    Could you have picked up a pathogen (bug) from the work with the clearing vines and roof work?
    the energy drop all started straight after the handyman work if I read correctly. No such thing as a coincidence.
    It could be. There's no specific causes for Sarcoidosis and the most likely environmental matches coincide with; being female, of African descent, that lives in a house with wood burning stove, none of which I match.

    The next most likely causes are certain metal dusts that also cause metallosis and combustion products which is why firefighters are slightly more susceptible. My main concerns is that it's closely linked with preliminary symptoms of Lymphoma although I thought that had been ruled out in my case. So far so good with the cortisone tablets. My understanding is that unless you have an allergic reaction then you do feel great for at least a while but staying on them long term is what leads to complications. Yes I do feel more alert, less tired and less achey than usual.

  6. #65
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    Feb 2006
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    Perth
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    Its been over a week on the cortisone now. I'm feeling hungrier so really have to watch out for that, and my sugar levels are a bit higher than they should be. A slight improvement in energy levels perhaps, I did 3, 5km and 4, 4km walks with the dogs in the last week which they really enjoy and I did not feel as tired as usual. No ill effects apart from needing to use the loo a bit more than usual in the first couple of days but that seems to have settled.

    Finally got into see the specialist last Friday. The reason he started me on Cortisone and he called me in was my blood Ca level had shot up and was now too high, and my ACE levels were also too high which are indicators of increased Sarcoidosis activity. The Ca could be partially explained by the fact that I was told last year by my GP that my Vitamin D levels were too low and that I should take Vitamin D which I have been taking for the last 6 months. Vitamin D improves the extraction and utilisation of Ca. Because of this and seeing as I wasn't feeling at all ill my cortisone dose has been reduced by 50% and will be dropping slowly over the next couple of months. This should help with the sugar levels. Meanwhile it's now blood test every 4 weeks (was every 3 months) and I'll be having my next PET scan in 3 weeks. The cortisone may be adjusted depending on what the scan shows.

  7. #66
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    Feb 2016
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    Canberra
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    It's all very complicated isn't it.

    Thanks for your updates Bob.

  8. #67
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    Feb 2006
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    Perth
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    I've been feeling pretty normal these last few days with 5km walks most days. I'm now 0n 35 % of the original Steroid dose but it all just feels the same to me, This afternoon I felt like I had enough energy to tackle the dreaded annual pruning of Bougainvillea over the shed. Council pick up is next week so I though I should take the opportunity. Ended up with 10 bulging wheel barrow loads of pruning to wheel around to the the front verge. Welding gloves, steel caps, and full face shield as PPE but still managed to get spiked though my shirt. I could have worn my blacksmiths apron but it doesn't cover my upper arms and shoulders where I mainly got spiked. Lots of up and down ladders and working on top of the old shed roof. The whole job normally takes about 3 hours but the new hedge trimmers make it a lot easier and I was able to do it in about 2.5 hours including stopping twice for a rest. Normal I would just carry on straight through so definitely less stamina this year. Right now I feeling pretty stuffed although I only had about 4 hours sleep last night and about a 20 minute nap just after lunch. PET scan next week so hopefully that might show something.

  9. #68
    Join Date
    Oct 2013
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    Perth, Australia
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    1,813

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    The reduction in steroid doses certainly sounds encouraging! And 10 wheelbarrows is a decent effort, more than I got done today [emoji23]

  10. #69
    Join Date
    Dec 2013
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    San Antonio, Texas, USA
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    3,070

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    Triglycerides okay?
    Innovations are those useful things that, by dint of chance, manage to survive the stupidity and destructive tendencies inherent in human nature.

  11. #70
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    Feb 2006
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    Perth
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    Quote Originally Posted by rob streeper View Post
    Triglycerides okay?
    Yep although doc has me on cholesterol meds.
    As well as steroids, I also take 3 blood pressure meds, Metformin for diabetes, aspirin and Vitamin D.

  12. #71
    Join Date
    Feb 2015
    Location
    Oz
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    I was on steroids for over two years, buggers of things to get off, I'm finally free of them but unfortunately a few of the side effects that were thought to be caused by steroids linger, so I guess they are to do with other meds. I found steroids actually helped with my diabetes meds, aside from having to inject 3-4 times more insulin than normal, the steroid helped to stabilise my BGLs. Now I'm finally off the steroid by insulin requirements have dropped dramatically but my BGLs are nowhere near as stable.

    I take Protophane and Novo rapid fpr diabetes; Minipress, Physiotens and Telmisartan for BP; I inject C*** ($1500) monthly, and take Lengout daily; for pain I take Celebrex, Tramadol, Panadol with the occasional Ibuprofen thrown down the neck as well. And for the itchiness that accompanies all these meds I take Phenergan. I also take the occasional nausea pill when the ever present nausea gets too much. People often ask me what the rattling is! Doc says I should be on cholesterol meds as well, but he thinks I have more than enough to worry about.

  13. #72
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    Feb 2006
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    Perth
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    Yeah there's always some one worse off and sorry to hear about all the meds you are taking. I should not complain but sometimes I wonder why I'm taking all this stuff because I feel OK but the doc says that's because I'm taking all this stuff so chicken and eg situation I guess.

  14. #73
    Join Date
    Feb 2015
    Location
    Oz
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    I think the difference between taking and not taking medications is in the results you get. In most cases going without the meds makes the symptoms of the disease worse, or, allows it to spread quicker than it would normally.

    One of the problems with taking strong medications lies in the side effects from those meds and the meds you take to counteract those side effects. A slippery slope!

    Many opt not to take these toxic meds, instead relying on diet, exercise, herbs and so on. Through trial and error I've found all these alternatives to be nothing more than wishful thinking. I prefer to rely on the science behind these meds rather than the third and fourth hand stories spread by the alternative types.

    In the end I'm sure many succumb to the side effects before the actual disease itself. Unfortunately, the results are not measurable due to the either/or nature of the different methodologies.

  15. #74
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    Feb 2006
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    Perth
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    I wondered why I have been really tired in the last few week while reloading the weekly pill caddy I took a closer look at the Cortisone pill bottle and realized that it was a 3 year out of date cortisone pill bottle for the dogs skin condition. Not helped by the pill bottles being the same size. It was the exact same drug but it was 5 times less per tablet. SWMBO recons I should go straight into care. What the dogs drugs were doing in the human drugs cabinet I'll never know. fortunately the dog got over their skin condition several years ago.

  16. #75
    Join Date
    Feb 2003
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    back in Alberta for a while
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    68
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    12,006

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    Quote Originally Posted by BobL View Post
    I wondered why I have been really tired in the last few week while reloading the weekly pill caddy I took a closer look at the Cortisone pill bottle and realized that it was a 3 year out of date cortisone pill bottle for the dogs skin condition. Not helped by the pill bottles being the same size. It was the exact same drug but it was 5 times less per tablet. SWMBO recons I should go straight into care. What the dogs drugs were doing in the human drugs cabinet I'll never know. fortunately the dog got over their skin condition several years ago.
    sounds more like a story you would tell about your mum

    BTW. It must be coming up to 3 months now. how is she getting along in her new home?
    regards from Alberta, Canada

    ian

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