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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | On Vacation |
| Posts: | 984 |
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Posted: Mon Jun 15th, 2009 20:09 |
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Keith,
I'm sorry I don't have an easy answer for you. The page on the MP knowledge base on Managing immunopathology (IP) may or may not have any new ideas for you.
You may have to resort to ice cream.   
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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keithw
Member
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Posted: Mon Jun 15th, 2009 23:38 |
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I will have to take an extra 5 mg pred for today.
I understood that symptoms on olmetec only were not Herx as no abx were involved.
This may be just withdrawal, but I am getting muscle wasting around my left shoulder too.
Maybe I will ask the GP about that.
Meanwhile, panadol etc...
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S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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JoshR
Member
| Joined: | Mon Aug 18th, 2008 |
| Location: | NSW, Australia |
| Posts: | 445 |
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Posted: Tue Jun 16th, 2009 19:16 |
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keithw wrote:
I understood that symptoms on olmetec only were not Herx as no abx were involved.
No, you can certainly get IP from olmesartan alone. In your case though, it may be difficult to tell whether your symptoms are coming from IP or just from steroid withdrawal.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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keithw
Member
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Posted: Tue Jun 16th, 2009 23:54 |
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That's the problem.
Pred withdrawal, Vit D withdrawal, and Sweet annie withdrawal combined with Olmetec and winter chills.
I have no idea whats happening other than lupus crash symptoms.
The extra 5mg pred and a quick annie tea are holding me ok, so I will tough it out and see how it goes.
I will be glad to get to the mino though, at least I will know the pain is doing some good.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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keithw
Member
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Posted: Wed Jun 17th, 2009 00:24 |
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I see Dr Marshall is in town this weekend, I wish patients could attend the workshop.
Last edited on Wed Jun 17th, 2009 00:29 by keithw
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S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Barney
Moderator
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Posted: Wed Jun 17th, 2009 05:22 |
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Keith,
You might check and see if that is possible.
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals), lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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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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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | On Vacation |
| Posts: | 984 |
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Posted: Wed Jun 17th, 2009 08:58 |
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Keith, Send a PM:
http://www.curemyth1.org/view_topic.php?id=1206&forum_id=2&jump_to=18955#p18955
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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keithw
Member
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Posted: Wed Jun 17th, 2009 09:25 |
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Booked for Friday! Hope there's a crowd.
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S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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keithw
Member
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Posted: Mon Jun 22nd, 2009 00:09 |
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Friday was good, encouraging to meet MPers at stage 3 and see results.
Made a silly mistake, Took a wrong pill and didn't drink enough.
Think the pill was amlodipine 5mg instead of olmetec 20mg, old stock in my emergency pack.
Caught me on the train home, lost blood pressure (and lunch) and fainted dead away. BP 80/55
Stomach bloated and chest pain.
Met at Gosford by ambo's , taken to hospital and plugged into saline drip.
Dale gave the E.D. sheet to the doc and they were fine with it, letting me go at 7am and home to bed.
Nothing like a live exercise to teach eh?
Next time carry water and update emergency pack.
Shoulders now really sore from being carried off train, time for painkillers.
Painfull lesson.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | On Vacation |
| Posts: | 984 |
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Posted: Mon Jun 22nd, 2009 10:14 |
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Wow.
Keith, you made that all sound so easy.
But it makes one wonder... have you ever learned anything the easy way???
Good you had an advocate by your side. And saline IV has been reported as the perfect treatment for the condition you were in. Good game! 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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keithw
Member
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Posted: Mon Jun 22nd, 2009 12:18 |
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Easy for me, I missed most of it!
First time I have done that since starting MP.
Last time cost me 3 weeks in hospital so it was really a plus.
I wonder who caught my lunch?
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S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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DNStog
Member
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Posted: Tue Jun 23rd, 2009 02:06 |
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MP started 12-27-04
Sarcoidosis Systemic/Uveitis/ Hypothyroidism/ Raynaud's Phen/Paraesthesia/rhinosinusitis/ asthma/depression
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keithw
Member
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Posted: Fri Jun 26th, 2009 06:01 |
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Settled down nicely, Still plenty of IP but manageable.
Dropped to 4mg pred today, lets see how it goes.
Interestingly, whilst my legs are still sore, the pain has moved out of the joint into the muscle and tendons so while stiff, I can now walk much better.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Joyful
Foundation Staff
| Joined: | Fri Oct 19th, 2007 |
| Location: | On Vacation |
| Posts: | 984 |
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Posted: Sat Jun 27th, 2009 04:10 |
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I see you got your avatar up. 
Were you able to drop the pain killers before you decided to lower the prednisone dose? Please don't make Dale go through another trip to the E.D., ok?
From the Guidelines for weaning off steroids:
Upon reaching 5mg per day, proceed more slowly. At this point, the adrenal glands need to be producing natural cortisol, as the Prednisone is no longer providing enough corticosteroid (http://mpkb.mp-dev.com/doku.php/home:othertreatments:corticosteroids ) to keep the body functioning properly.
At 5mg per day, it is usually advisable to reduce by only ½ mg at a time. Remain at each new dose level for periods of not less than one week and up to a month if symptoms dictate.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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keithw
Member
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Posted: Sun Jun 28th, 2009 01:49 |
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It's starting to get more predictable now,
I am sneaking the pred down by alternating doses rather than splitting pills.
The pain gets pretty rough at times, nights are worse but through it all I am starting to feel that I am winning.
My old friend Annie still helps out occasionally, the spots and sores are really persistent but at least they don't itch.
The hospital thing was a mistake on my part, and Trevor's fault also for being too interesting!
I have to pay more attention to myself when socialising, I haven't had much experience for the last two years but I have cleaned out my emergency pill pack and carry water with me now so I am better prepared if I get caught out.
I am optimistic that I can be clear of pred by the end of July, but if not it's not a disaster. I feel it's important to set soft goals and report the results and learn as you go, that way we all benefit.
Moderators and other patients have been quick to offer advice when things go wrong, so I am still on track.
Keith.
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S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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keithw
Member
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Posted: Fri Jul 3rd, 2009 07:24 |
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Made it through 4mg pred, now starting 3mg.
Plenty of sores and flu like symptoms to keep me awake.
Tomorrow I see the Immunologist so let's hope I make a good impression.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Barney
Moderator
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Posted: Fri Jul 3rd, 2009 22:26 |
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We're hanging in there with you Keith!!!!
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
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
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Posted: Sat Jul 4th, 2009 06:29 |
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Saw the man today, He was stoked!
Quote: You're on 3mg of pred and you look better than I have seen you in years.
Nothing like a good result to stir enthusiasm, I will get him on board yet!
Meanwhile, I am still sore in the muscles and left shoulder but coping O.K., flu like symptoms have eased a little.
I will try for 2mg early next week if all goes well.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Barney
Moderator
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Posted: Sat Jul 4th, 2009 12:06 |
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Great report Keith, you are making great strides!!
Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!!
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
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Posted: Mon Jul 6th, 2009 03:15 |
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Had a new vit D test this morning, had to change patho labs as my usual lab doesn't do the serum D2/D3 anymore.
Should have the results by Saturday when we have an MP meeting in Sydney.
I'm not going to drop Pred any lower until after that, as the herx is a bit too radical.
By the way, I post regularly on the savvy vasculitis website and I have been asked for more info on MP so I have given them the link to bacteriality.com.
It won't hurt to have a few more customers, and one of the askers was a doctor so fingers crossed!
Keith.
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S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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