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Robert Brown
Member
| Joined: | Wed Oct 1st, 2008 |
| Location: | Perth, Australia |
| Posts: | 5 |
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Offline
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Posted: Wed Oct 1st, 2008 12:55 |
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Hi there, I have not begun the MP yet, but am consiering it. My D125 test results have been sent to the MP site in Aug 2007 & I was told that I have TH1 etc, etc.
My symptoms have been as per my signature until July this year when my right foot swelled up to the point where I couldn't get my shoe on. I was put on 3 weeks of various antibiotics because my GP thought the problem was Cellularitis. All I finished up with was poor digestion and my still fat foot. I was sent to another Dr who put me on 25mg of Prednisolone (14 July 2008). Within 3 days my fat foot started to shrink - great. My Dr reduced the dosage as follows - 21 July 20mg, 28 July 15mg, 4 Aug 10mg, 11 Aug 5mg, 2 Sep 4mg, 27 Sep 3mg.
I'm sitting on 3mg a day until 9 Nov where I'll drop to 2mg then 9 Dec down to 1mg then stop on 9 Jan 2009.
3 weeks ago my right kneecap started to swell up abot twice its size. I've sat on this for 2 weeks then decided to see my GP. I've had to wait 8 days to see her so at this point in time I'm only assumning it's caused by my Sarc. I'll advise as soon as I know.
Why I'm posting here is after reading some posts on the MP site about weaning off Prednisolone I want to know if it would be best to start 40mg Benicar per 8hrs before I go any further with the weaning process. I have no symptoms other that the swollen kneecap (foot is OK).
Your thoughts would be appreciated.
Regards
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Diagnosed with Sarcoidosis in 2003. Investegating application of MP. Test just done 1,25 (54.58 pg/ml), 25D (29.6 ng/ml)
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Julia
Advocate (on leave)
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Posted: Wed Oct 1st, 2008 19:14 |
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Hi Robert,
Please see Weaning from Steroids, which recommends starting Benicar two weeks before you start weaning. This is to give your body a chance to adjust to Benicar before it has to adjust to lowered steroid levels.
But even at this later stage, Benicar would help with the weaning process. Just be aware that the first couple of weeks might be a bit rocky. 40mg every six hours works best, but every 8hrs (on the dot) will do, if doc isn't happy with the higher dose.
Please ask any further questions here at your own personal thread.
Australian Autoimmunity Foundation
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
Julia 
AUSTRALIAN Members
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Robert Brown
Member
| Joined: | Wed Oct 1st, 2008 |
| Location: | Perth, Australia |
| Posts: | 5 |
| Status: |
Offline
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Posted: Thu Oct 2nd, 2008 13:34 |
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Hi Julia, Thanks for your quick reply and thanks for the link to Weaning off Steroids info. I had already read this post from the MP site, that's where I got the idea to use Benicar while going through the weaning process. Should I just take Benicar until I wean off Prednisolone, I haven't really decided to go with the full blown MP yet. What do you think.
Regards
____________________
Diagnosed with Sarcoidosis in 2003. Investegating application of MP. Test just done 1,25 (54.58 pg/ml), 25D (29.6 ng/ml)
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Julia
Advocate (on leave)
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Posted: Thu Oct 2nd, 2008 15:59 |
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Robert, I have no experience of weaning from steroids, but from what I've read from other members, it can be a struggle trying to get off the final few mg. I would take whatever help I could get!
If you don't do the MP, have you some other plan in mind for halting the decline in health your sarc is causing you? I haven't heard of anything else that works  You don't have to wait for more joints to swell, or for the sarc to reveal itself in internal organs. It has been known for the first serious sign to be a heart attack out of the blue. Not trying to scare you or anything!! 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Robert Brown
Member
| Joined: | Wed Oct 1st, 2008 |
| Location: | Perth, Australia |
| Posts: | 5 |
| Status: |
Offline
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Posted: Fri Oct 3rd, 2008 14:39 |
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Thanks again Julia,
I agree with what you are saying. I guess I've been going through a bit of self denial, probably because my symptoms have not been causing me much strife.
I have made an appointment with the Dr who will be overseeing my treatment, unfortunately it's not until 12th November. It take ages to get to see a Dr in Perth. Meanwhile I'll organise my dark glasses. Meds will have to wait until I see the Dr.
Thanks again
____________________
Diagnosed with Sarcoidosis in 2003. Investegating application of MP. Test just done 1,25 (54.58 pg/ml), 25D (29.6 ng/ml)
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Robert Brown
Member
| Joined: | Wed Oct 1st, 2008 |
| Location: | Perth, Australia |
| Posts: | 5 |
| Status: |
Offline
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Posted: Sun Oct 5th, 2008 12:49 |
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Hi there, Could someone please tell me how I get started in the MP. The original MP site seems to be closed, do we just begin using this site?
Many thanks
____________________
Diagnosed with Sarcoidosis in 2003. Investegating application of MP. Test just done 1,25 (54.58 pg/ml), 25D (29.6 ng/ml)
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Julia
Advocate (on leave)
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Posted: Sun Oct 5th, 2008 15:58 |
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Robert, there are two groups of members on this site: those who are also members of the MP study (who post mainly on the main study site and receive advice and support from medical moderators), and those who are on the MP through their doctors. The MP study is now closed to new members. We would dearly love to be able to include everyone, but we have a very small band of volunteer nurses already working flat out, and the demand has been overwhelming.
All doctors are welcome to join the private Professionals' Forum, where all the help and support they need is available, as well as access to the whole protocol from the start. You must refer to your doctor for medical issues, and search the MP 'library' on the study site to find information.
Phases 2 & 3 of the MP are not available in the public part of the site, so you must ask your doctor to print you out a copy of the Phase 2/3 guidelines when the time comes.
All the information you need is in the MP 'library' on the main site. Here on this site the advocates are happy to act as 'librarians' to help you find what you need to know to make your MP journey a success.
You might also enjoy reading the members' informal discussion board MP-Lifestyles.org.
There is no medical support available here, but you're welcome to ask non-medical questions that can be answered by more experienced members. There is no need to post regular progress reports, though you're welcome to let us know how you're getting on.
We are very well aware that this situation is far from ideal, but the only alternative we could see was to close the whole thing down to anyone who wasn't in the study.
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information. How to do a site search
Essential Information About the MP - take this a little at a time!
When you start the MP, you can post in the forum Non-medical support for those on MP
Read, read, read... and let us know if you can't find what you need... 
____________________
Always consult a physician
Essential Info; FAQ; Julia's story
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Robert Brown
Member
| Joined: | Wed Oct 1st, 2008 |
| Location: | Perth, Australia |
| Posts: | 5 |
| Status: |
Offline
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Posted: Mon Oct 6th, 2008 14:31 |
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Thanks Julia, I understand now.
Regards
____________________
Diagnosed with Sarcoidosis in 2003. Investegating application of MP. Test just done 1,25 (54.58 pg/ml), 25D (29.6 ng/ml)
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