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keithw
Member
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Posted: Tue Jun 9th, 2009 08:32 |
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Really rough today, dropped to 5mg pred yesterday.
Knees,shoulders and arms involved and pain bad despite increasing olmetec and painkillers.
Saw Dr Nick this morning, he advises stretching the withdrawal indefinitely to ease the effects.
Really didn't expect this much Herx before abx, guess I must be carrying a lot of bugs!
Will have to try some of my tea tonight see if it helps.
Don't want to hit narcotics if I can help it.
____________________
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
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Posted: Tue Jun 9th, 2009 14:22 |
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Hi Keith. 
If you are meaning the anti-malarial tea, I will be interested if your response is dramatic. With the Benicar in place it could knock you for a loop.
Please do report if you have an adverse response. 
Narcotics sound so bad, but the combined experience of the MP cohort is that they are the most effective without slowing your progress.
Also, when was the last time you reviewed the MP pages on weaning from steroids?
I haven't read all your recent posts, but it seems like you are dropping your doses pretty fast.
Here's a palliative you might not have read about recently... decaf coffee. Yep. Slows the IP for me. But if I drink too much (more than 1/2 cup) I don't feel good later.
Take good care of yourself, Ok?
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Cynthia Schnitz
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Posted: Tue Jun 9th, 2009 17:21 |
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I don't think I would consider the effects of steroid withdrawal as herx, or at least I am sure it has nothing to do with killing Bacteria. Herx refers to the discomfort we get caused by our reaction to the byproducts of bacterial and cell death. You are suffering withdrawal symptoms caused by the various receptors, I assume, no longer being blocked and shut down by the steroids. Now I am sure it is much more complicated than this, but I don't see where bacteria enter this picture.
Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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marion villa
Member
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Posted: Tue Jun 9th, 2009 21:07 |
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keith:
I totally agree with joyful in the point that you are hurring in decreasing predni, remember thet your body needs time to adjust the hormones involved and your adrenal glands aren´t working well because so much time on predni, stop pushing your body, that is no good, take it easy, this is a patience race not a speed one. Listen to your body, you take the next step when your body feels that he can, not you ( your brain or will, I mean)
I also agree with cynthia you aren´t having herx, but the lack of predni, you were used to take..
From here to the end of MP:
Please take your time.To hurry doesnt make you good, it makes you BAD indeed.
marion
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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
Member
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Posted: Wed Jun 10th, 2009 00:11 |
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Hi everyone,
I really hope these are not Herx, but they do match the symptoms as described.
The drop from 10 to 5 mg pred took 4-5 days per point, slower than the recommended rate, and "Herx" increased as I got lower.
I had a weak cup of my herbal tea last night and I feel a little better, mornings are always the easiest but lets see how the day goes.
Regarding the tea, it has strong antibacterial and antiviral properties, it cleaned up the wifes flu in two days.
I will have another and see how I go.
Dr Nick said OK as a temp fixup.
____________________
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 10th, 2009 04:34 |
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Keith,
Reread please:
http://mpkb.mp-dev.com/doku.php/home:othertreatments:corticosteroids:weaningoffsteroids
You are coming down 5mg since early May, do you think a little to fast.
You need to start listing your meds like this on each post:
MP meds/amts:
nonMPmeds/amts:
It is really difficult for us to know exactly what you are doing when it is not listed w/each post.
A pain killer is fine........but if you are drinking Sweet Annie tea again...you know what Trevor told you about it. Take heed!!!
Keith....dear...there is no hurry....so please slow down. You did not get sick overnight and you will not get well overnight. You are looking at least 5 yrs into healing if not longer.
And Keith, you have got to remember how high your 25D is, it is also a problem.
Drink plenty of water, xtra salt (sea) (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 
Last edited on Wed Jun 10th, 2009 04:35 by 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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keithw
Member
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Posted: Wed Jun 10th, 2009 06:00 |
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Hi Barney,
According to the weaning forum ratio of 2.5mg per week I AM going slow.
I will hold at 5mg for a week and reassess.
With the tea, I don't see anything in it which is steroidal, but perhaps one of the research team can check.
The site I get my data from is
http://sun.ars-grin.gov:8080/npgspub/xsql/duke/pl_act.xsql?taxon=120
I note it does have ACE inhibitors, and interleukin etc But that doesn't tell me
anything.
Perhaps the good Doctor T knows?
If it is doing the wrong thing then of course I will stop using it, problem is, it really does work well!
Interestingly, Both my MP doctor and my GP suggest stay on it, but again, this is a matter for a Geneticist or Microbiologist.
I just feel that doing narcotics for withdrawal pain is wrong, I might end up with an addiction to Morphine or something.
Dale (the wife) used to be the Methadone nurse at the local junkie clinic and I have met some of her ex patients.
Let's not end up like that.
My meds are:
MP:
Olmetec to 240mg
Non MP:
Prednisone 5mg
Panadol or Panadine forte 500mg if/when necessary
Sweet Annie tea to 25mg in standard mug.
I'm still hanging in there!
Keith.
____________________
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
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Posted: Wed Jun 10th, 2009 09:33 |
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Hi Keith,
Well, we sure are sounding like a bunch of fussy mother hens aren't we? 
I think you get the issue with the weaning. Many of us have made it this far in our illness by ignoring our body's pleas for help. Your symptom descriptions are what have provoked all the fuss.
Basically you sound quite stoic and ready to take on the discomfort, but the experience of our cohort is that your symptoms are signaling you are going too fast and we are concerned for good reason.
When the FAQ states that going too fast is dangerous, that is not window dressing. Dangerous means dangerous. I am going to spell this out really plainly.... dangerous as in suddenly not being able to breath or some other difficult problem that leads to an E.R. visit. And E.R. visits can lead to contradicted treatments that can endanger your life. Got it? Great.Loads of helpful reading on Pain Control in the FAQs. Note that typically people in pain stop the drugs easily when the pain is gone. (When it's getting to the pain, you usually don't feel drugged. But as the pain lessens, you can know it if you start to feel drugged. And what normal person wants to feel drugged up?)
Now as for the tea...
If your doctors are Ok with it, that does not mean there isn't a potential for an adverse reaction they are not aware of. Even if it makes you feel better right now, that does not mean it won't make you feel a whole lot worse later on when your immune response is closer to being restored. The wikipedia page states:
The proposed mechanism of action of artemisinin involves cleavage of endoperoxide bridges by iron producing free radicals (hypervalent iron-oxo species, epoxides, aldehydes, and dicarbonyl compounds) which damage biological macromolecules causing oxidative stress in the cells...
Note the oxidative stress? Mixing strong anti-microbials (probably more the extracts, maybe not as much the tea) with the Benicar is also unwise, especially along down the line.
I'll give you an example from my journey... I love garlic. I ate as much as I wanted while taking Benicar on the MP until... about six months ago. Then, wow howdy. Every time I ate garlic I would get stronger and stronger IP/herx about 6-12 hours later. Can't even use the most lame garlic powder in my food right now.
So, I'm not saying you can't have your tea. But I am trying to help you understand why we even bring it up at all.
All that aside...
I am thrilled that you are getting along even with the discomfort of your symptoms and I know you have what it takes to reach recovery on the protocol. 
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keithw
Member
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Posted: Wed Jun 10th, 2009 11:49 |
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I think you are right about the tea, though it helped me get this far but I guess having got here it would be silly to increase the risk.
So let's try and tough it out with standard painkillers and leave the narcotics to those that need them.
[Off topic promotion of non-MP related treatment removed]
So, no more herbals for me unless absolutely necessary, back to the plan.
5mg pred to go...
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
Joyful
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Posted: Wed Jun 10th, 2009 13:55 |
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I did read your post and thought it was interesting how you could present it so well that it didn't get 'chopped' as pushing a non-MP treatment... a total no-no on these forums.
Before using the MP my treatment of preference was herbal medicine and it's amazing how much research has been applied to the healing power of plants along with theories as to their method of action.
The problem with mixing these with the MP is that they have highly complex interactions (but then again, so do spices used in cooking... or just plain old foods themselves, take celery for instance). The same goes for enzyme therapies.
Dr. Marshall and those who have blazed the trail for an effective protocol for restoring our body's ability to produce it's own anti-microbials and rebuild with non-infected stem cells are serious about staying the course with what they know works.
Over and over they have found that people who use the MP 'and xx, and xx, etc.' have the hardest time recovering.
So, I have set my herbals aside (except for a cup of green rooibos tea once a week or so when I have company). And I encourage others starting out on the MP to see how many palliatives they can drop and still maintain tolerable.
Did you find the non-medication forms of pain relief in the thread I posted earlier?
I did get a cheap little tens unit that seems to help from time to time.
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keithw
Member
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Posted: Thu Jun 11th, 2009 02:08 |
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Speaking of tens machines,
Do you know anything about Niagara vibration therapy as a complement?
____________________
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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marion villa
Member
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Posted: Thu Jun 11th, 2009 03:26 |
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Keith:
I want to tell you: I had been several years taking 5mg Q24 predni. I never could decrease that because each time I tried, my body began aching terribly and my skin erupted in erithema nodosum.
when I started MP it took me more tnan 3 months to wean off pred ni completely, not less time.
so you see I have been there, I also have SLE, so have been there too, as Barney and Joyful too. Yes we are experimented hens. the truth is that we all want that every MPer who begins feel the best he can, and suffer the least.
The MP has been invented and researched by people that know far way much than you or me, It is better to take their advice, because they kNOW.
The guidelines are clear: Take it slow Never rush the treatment or push youself.
well ,as far as I know no one in the MP has developed drug addiction because of the pain meds, taking them surely ease the process, that is up to you, but the race is a very very long one to do it relying on stoicism, this joint pain and discomfort you have will come again and other things in the herxing every MPer has, and to deal with it as a soldier only will wear us off.
If you don´t want to hear is ok, but you asked for advice first.
Regards
Marion
____________________
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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Barney
Moderator
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Posted: Thu Jun 11th, 2009 04:19 |
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Keith,
I think the tens unit would be a great nonmedical fix for your pain. I have used one off and on for 25 years.
You will love it.
You also need to remember that your 25D is not down a lot yet.
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
____________________
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: Thu Jun 11th, 2009 04:26 |
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That's OK Marion, all advice is gratefully received.
Scratch the last question on Niagara, I just had a demo.
I won't make that mistake again! I feel like a wreck, game over for today.
Still, you don't ask, you don't learn.
Keith.
____________________
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
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Posted: Thu Jun 11th, 2009 11:34 |
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Hi again Keith.
Have you spent any time looking over... I think you will enjoy getting around and exploring more!
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keithw
Member
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Posted: Fri Jun 12th, 2009 01:51 |
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There must be years of info in those sites, and I guess I have read some percentage of the data there.
I haven't as yet found anything on AVN and Cyclonic Vibration Therapy, maybe someone will read this post and know all about it.
Meanwhile, I can barely limp today, I saw the GP who suggested increase pred to 10mg and take painkillers and keep my feet up for the day.
____________________
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 Jun 12th, 2009 05:44 |
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I've done a Google search with no result, but Dr Nick called and said do just the painkillers and rest up.
Apparently deep tissue massage damages tissue already inflamed and time will heal.
I am glad I didn't buy, at $2550au it would have been an expensive lesson.
A total no-no for inflammatory diseases!
Staying on 5mg pred for a while yet...
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
Joyful
Foundation Staff
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Posted: Fri Jun 12th, 2009 10:35 |
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Sure hope you feel better real soon Keith.
Isn't it funny how we keep "trying stuff" even when we may already be on the right track?
Sometimes I think it's the bugs messing up my brain ... no, I take that back... sometimes I KNOW the bugs are messing with my brain. I wasn't ADD before this disease!
Check out Massage and other manipulation therapies in the MP knowledge base for some information.
Also, if you get the idea to try anything else, you may find it helpful to always take a quick look at the Non-MP treatments page as well.
____________________
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keithw
Member
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Posted: Fri Jun 12th, 2009 11:12 |
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We call it "eagle eyed hindsight".
That's why they don't tell you what it is before offering a free sample!
A painful lesson learned!
____________________
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 15th, 2009 06:44 |
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What's the safest way to have a couple of days off?
I have pain day and night despite 1000mg panadol 6 hourly and Movalis too.
Also, I am foggy and covered in spots and scabs.
I know I can get some relief by upping the pred or harder painkillers but I don't want to waste the work so far. Any suggestions?
____________________
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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