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keithw
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| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
| Posts: | 130 |
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Posted: Tue May 5th, 2009 11:03 |
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Got the results back from the MRI, sure enough avascular necrosis of the knee joints.
What next?
I have to get off prednisone so I can get started on MP, but will it help this condition or is it more surgery?
Can I start on olmesartan while weaning off prednisone?
Does anyone recommend any particular doctor in Sydney or Newcastle if my GP won,t prescribe?
Keith.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue May 5th, 2009 14:52 |
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If you have Avascular Necrosis of the knee joints, and your Doctor won't prescribe to help you get off steroids, that Doctor needs to be struck off the register 
You will find a lot of info about Avascular Necrosis back on the old SarcInfo.com board, pre-2004. We really haven't seen it recently, as this danger of steroids was well documented about a decade ago.
You will find more info on weaning here:
http://mpkb.mp-dev.com/doku.php/home:othertreatments:corticosteroids:weaningoffsteroids
As our cohort recovers on the MP, they do recover their healing ability. Whether you will fully recover from this joint damage is unknown at this point. I wouldn't be unduly pessimistic, however...
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keithw
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| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
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Posted: Tue May 5th, 2009 23:50 |
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Thank you, that is most encouraging!
I drop to 10 mg prednisone today and will follow the recommended weaning process.
I am seeing my GP later today and will try again.
Also, I have had an email from Sydney wholistic med center and if all else fails I will go there.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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keithw
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| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
| Posts: | 130 |
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Posted: Wed May 6th, 2009 09:17 |
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The doc said no again, but he will prescribe the medication if the immunologist recommends it.
At least he agrees i need to come off prednisone but has not suggested an alternative.
Meanwhile, my knees hurt and I am stuck on doloxene to stay upright.
I will try and see the immunologist friday and fire a rocket up him if he won't see sense!
Does everyone have this problem?
Lets hope next post I have good news!
Keith.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Dr Trevor Marshall
Foundation Staff
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Posted: Wed May 6th, 2009 15:57 |
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Be careful while weaning without Olmesartan in place. The safest way to wean prednisone is as described in our Knowledge Base:
http://mpkb.mp-dev.com/doku.php/home:othertreatments:corticosteroids:weaningoffsteroids
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Barney
Moderator
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Posted: Wed May 6th, 2009 20:19 |
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Keith,
Maybe it would help you if you print off the new updated Phase 1 doc and take to doctor. Here is a link.
Here is some homework for you..please watch the 2 videos and print out the new Phase 1 document since it has lots of new MP info and you can read and reread at your leisure.
The new, updated Phase 1, has links to all phases and stages of MP, there is lots of info that can still help you, here is a link:
[size=http://AutoimmunityResearch.org/phase1.pdf]
I will also, give you a link to the the Prague presentation that Trevor just got back from, lots of information to move on saying that the Benicar is more important than the abx.
During the recent Workshop on Clamydial Infection in Prague, Czech Republic, I gave an overview of the therapy which has become known as "The Marshall Protocol." An HD video of that presentation is available at:
[size=http://vimeo.com/4293599]
In Prague I also summarized the Science underlying that therapy. The HD video is at [size=http://vimeo.com/4307469]
This is a lot of wonderful information. Hope you enjoy it.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY 
Also included the ER pdf for when you start MP, please print it out.
http://autoimmunityresearch.org/ER.pdf
Last edited on Thu May 7th, 2009 09:06 by Barney
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
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| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
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Posted: Thu May 7th, 2009 08:52 |
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Hi Barney,
Is there any info on pain medications meloxicam (movalis or mobic)
and dextropropoxyphene (doloxene)
These are the strongest painkillers I have
I cant see the Dr until tomorrow for olmestartan and thats if he will prescribe it.
The pain is amazing, it,s really graying me out but I dont want to up the pred.
By the way, the link to the E.R.page isnt working.
Keith.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Barney
Moderator
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Posted: Thu May 7th, 2009 09:24 |
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Keith,
Meloxicam is an antinflammatory and muscle relaxant from what I googled.
Dextroprooxyphene is the same thing as we call Darvon here in the States.
That is the most answer I can give you.
You could try ice or heat and see if that gives you relief until you can see your doctor.
I also fixed the link to ER pdf.
In order to help convince doc, you should print off Phase 1 doc and take with you.
HANG IN THERE, WE WILL MAKE IT!!!
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
| Posts: | 130 |
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Posted: Thu May 7th, 2009 11:26 |
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Hi Barney,
I've done the drugs and the pain has eased somewhat.
Before I call it a night, is the avatar upload working ok?
I have a photo 33kb which is still too large.
I will try again tomorrow.
Keith.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Barney
Moderator
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Posted: Thu May 7th, 2009 15:15 |
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Keith,
I have no idea about the avatar.....JR Foutin (not sure of sp?) is the one I think for that, you might try PMing her.
Glad you got some relief.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
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Posted: Fri May 8th, 2009 07:14 |
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None of my doctors are prepared to bite the bullet, so I rang Dr Nick Bassal and he will see me Monday evening.
Thats what I call service!
By the way, I watched your lectures on Vimeo,
I'm just an old electrician with SLE and more, but I understood you first time.
I would have thought a GP could follow it enough to at least prescribe a prophylactic
dose of olmetec until they could research MP themselves.
Too much legalese and not enough conscience.
I think they forget that we consult with them for our benefit, not their's.
Excuse the whingeing, but I'm an Aussie.
I hope the chemist is open late!
Keith.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Barney
Moderator
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Posted: Fri May 8th, 2009 07:30 |
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Keith,
I hope all works out for you!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
| Joined: | Sat May 2nd, 2009 |
| Location: | Gosford, Australia |
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Posted: Sat May 9th, 2009 10:59 |
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It will, I have been waiting more than 10 years for this.
Whats a couple more if I get my life back.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Barney
Moderator
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Posted: Sun May 10th, 2009 03:04 |
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____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
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Posted: Mon May 11th, 2009 12:49 |
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I'm in, Dr Nick did the trick!
Tuesday morning starts the theraputic probe.
Wish me luck...
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Barney
Moderator
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Posted: Mon May 11th, 2009 14:44 |
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Alright Keith!!!!
You can just continue using this same post to report how you do after you start.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
| Joined: | Sat May 2nd, 2009 |
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| Posts: | 130 |
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Posted: Tue May 12th, 2009 10:40 |
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Day one,
No adverse reactions to report,
Saw the surgeon about the knees, nothing he can do yet, the damage isn't bad enough.
Come back in 5 years...
Question, prednisone weaning.
At 9mg daily the site says 2.5 mg per week to 5mg.
!mg per 3 days is the same timing, any problem with this?
also, should I take the pred with the olmetec or separate them by an hour or more.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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Barney
Moderator
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Posted: Tue May 12th, 2009 15:33 |
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Hello Keith,
Welcome MPer!!!
Essential Information About the MP (Required Reading) > Weaning From Steroid Medications
I would keep them at least 3 hrs apart.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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marion villa
Member
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Posted: Tue May 12th, 2009 21:36 |
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keith: you wont have to be back in five years. that is the good news.
I wish you patience, and braveness. Don´t ever stop learning and educating yourself in this treatment.
congrats.!!
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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keithw
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| Joined: | Sat May 2nd, 2009 |
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Posted: Wed May 13th, 2009 08:48 |
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Thanks everyone, all advice gratefully received.
A bit gray today, Knees really sore.
An early night and panadol should fix it!
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
Olmesartan 160mg, Mino 100mg Q48H, .25D=20 10 oct 09 new method. phase 3 starting 20 Feb 2010
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