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Christina
Member in Phase 3
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Posted: Wed May 10th, 2006 06:54 |
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Benicar Q6H; 50mg mino QOD
Hello,
I spoke to Ival this evening and he had a good idea. To determine if my body needs more mino or less mino he suggested I go back to 25mg for a couple rounds to see if my symptoms cool off a bit. If that works then it may indicate that I need less mino to feel better. If it doesn't work then I will go to 75mg to see if that makes me feel better. If it does that it may indicate I need more mino to feel better. I'll be conservative and try going backward at first. I was able to level off on 25mg before moving to 50mg so maybe it will help get some control over this.
I'll let you know what happens.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
Member in Phase 3
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Posted: Sat May 13th, 2006 05:47 |
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Benicar Q6H; 75mg mino QOD
Here's an update: On Wednesday at noon I took 25mg mino to see if that would help cool my extreme joint pain herx. By about 5pm I was feeling better but around 8pm I started to tank. Overnight was miserable and Thursday I woke up in horrendous/intolerable joint pain. I decided to go ahead and try taking 75mg of mino because I had to do something. The rest of the day seemed to get better (although I was still really sore from the blow out). At 11:00pm I noticed feeling chilled and flu-like. My temp was 99.5. I hadn't eaten anything that day (which isn't unusual on really bad days....I'm not hungry and also fearful of food causing more symptoms). So I decided to eat a little. The fever broke and I was fine overnight and in the morning and the joint pain wasn't nearly as bad. I wouldn't call it a major relief but it was relief nonetheless. Most of today has been relatively tolerable with repspect to joint pain, but I did have some muscle fatigue and eye fatigue that was quite noticable and did keep me from doing much of anything. When I would try to piddle around the house I would begin to "black out". Everything would turn dark. I think I may have been dehydrated and hungry because after I drank a big glass of water and ate I felt better. I did take my blood pressure when I was feeling weird and it was 66/45 so that probably had something to do with it. I definitely have had strange herx-like symtoms last night and today. I am due to take another 75mg mino tomorrow at noon. I'll let ya know what happens.
See ya,
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Ival
Moderator
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Posted: Sat May 13th, 2006 07:30 |
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Hi Christine
You are describing real closely what happened to me at 75 mino except I never ran a fever . When I had the flu like symptoms but it would ease off on my joints I would keep everything pretty much the same. The times I would herxs and my joints were leading the way I would change up the time and the amount of mino to try to get some relief for my joints. Pay close attention to how long you get relief in a cycle so you'll have more information if you have to frequent mino dose. I noticed a big difference between 50 and 75 when I had to frequent dose. Hopefully when you take the 75 mino you will again get some relief in your joins.
Food at times did cause more symptoms but it also would relieve them. What helped me the most was eating steamed vegetables. Just use whatever has worked for you in the past. After you eat if it starts to make your arthritis worse don't hesitate in an hour or two to eat a little bit again. A lot of times I notice that it would make the arthritis lightning up after a few bites of something never figure out why just glad it did. Try not to get constipated that always seem to make my arthritis worse.
Keep your head up Christina it does get better.
Ival
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MP 4/12/05/Benicar Q6h Ph1 4/26/05/ 25D13ngml 125D44pgml Ph2/6/1/05 Ph3/1/25/06 diag RA 2001 Male 47
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carol
Moderator
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Posted: Sat May 13th, 2006 23:41 |
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Christina wrote: At 11:00pm I noticed feeling chilled and flu-like. My temp was 99.5. I hadn't eaten anything that day.....
Christina:
Your body is working hard to kill these bacteria that are making you sick. It needs fuel to keep going! Please try to find some nourishing snacks that agree with you and try to eat a little every few hours.
Lots of fluid is important, as you found out. I prefer sparkling water and drink it throughout the day. And like Ival said, keep those ol' bowels moving daily. Many find constipation a problem on the MP (I know I do) and it this can really compound your problems.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Christina
Member in Phase 3
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Posted: Sun May 14th, 2006 04:21 |
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Benicar 40mg Q6H; 75mg mino QOD
Thanks Ival and Carol for your responses. I couldn't get through this without either one of you and also John McD.
Today pretty much blows as far as joint pain. I'm noticing that 50mg and 75mg are HARD! I think I have resorted to the fact that this is going to be a difficult few months. Preschool is over this week, thank goodness. I am going to clear my schedule for the entire summer and not commit myself to anything. I just never know when I'm going to feel up to doing anything these days. My joints are roached. Not only are they flaring up but they never get a chance to recover. 25mg was a cake walk compared to 50mg and 75mg so far. Although when I recently went back to 25mg it was the worst ever on the MP so I know I can't go back.
I'm thinking about maybe doing more frequent doses of mino again, just to see what happens. I thought about doing 75mg one day, then 50mg the next, then 75mg the next, etc. Do you think that's too much? I've tried frequent dosing in the past with 25mg and that didn't help. I've tried lengthening the dosage also to 72 hours and that didn't seem to work either. Maybe at the higher doses I might get some anti-inflammatory effect like I did on AP. What do ya think?
Thanks for all your help guys,
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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John McDonald
Foundation Director
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Posted: Sun May 14th, 2006 04:59 |
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Although when I recently went back to 25mg it was the worst ever on the MP so I know I can't go back.
Ival seems to have very good insights about controlling herxes but even so, stopping and starting is much like leaving a moving vehicle. You just can't step off the train while it is moving. It takes some technique and a little skill. I think the 'pragma' as we are calling it now, is that once your immune system 'sees' the microbes it keeps on killing them, like it or not. The end thereof is good, but the middle is a bit rough.
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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carol
Moderator
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Posted: Sun May 14th, 2006 15:51 |
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Christina:
FWIW, when I do frequent dosing to get some relief I start with 100mg M, then do 50mg, all at 12 hours intervals. After the third dose, I feel the benefit. I know this is more than the amount officially recommended.
Yes, once you start the MP you pretty much need to "hang on and ride" as best you can because it's hard to jump off!
Hang in there!
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Christina
Member in Phase 3
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Posted: Tue May 16th, 2006 20:45 |
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Beni 40mg Q6H; 75mg mino QOD (with newly added 50mg on off days)
I haven't posted in a while b/c I've been out of commission b/c of my joints. Monday was the worst day is months. Sunday actually was surprisingly good which I was thrilled about since we had a lot to do that day. It seems like now a pattern might be emerging on 75mg. My mino days are BAD but my off days are much better. I've decided to take 50mg on my off days to see if a little more mino will help keep the RA down for the next day. We'll see what happens with that and if it doesn't work, I'll tweak it. The last six weeks have really taken their toll on my joints. My hands are completely taxed and my knees are starting to slip around in their sockets. Once I can get through this initial phase I hope my joints will tighten back up again (they usually do). I'm thinking these higher doses might prove to be better at noticing a pattern and I might be able to have more room to adjust the dosages for some relief. I'll be working on that now.
Talk to ya later,
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Tue May 16th, 2006 21:57 |
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Thanks Christina
You are doing well in adjustiing your meds to find the dosing and schedule to suit you best..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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John McDonald
Foundation Director
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Posted: Wed May 17th, 2006 16:57 |
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Out of commission? Joints slipping around? Oh, Christina. I hope this eases up for you soon.
john
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RA 125D38, MP 9/05 Ph2 12/05 Ph3 09/06, Oct07 2510, NoIRs lite exp r/t work covered up
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Christina
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Posted: Fri May 19th, 2006 14:29 |
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Benicar 40mg Q6H; 75mg mino QOD (with 50mg mino pulsed)
UPDATE: Hello all. It seems as though my additional pulsing of 50mg on off days has helped decrease my RA symptoms. I have had some much needed relief. I am still worse than when I began MP but the level of pain is not as excruciating. I am going to hang out at this modified dose for a few more cycles then I will decrease the therapeutic 50mg mino dosage to 25mg and see if I can handle that for a week or two.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Mon May 22nd, 2006 22:52 |
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Benicar 40mg Q6H; 75mg mino QOD (with off day 50mg therapeutic dosing)
Today I feel pretty good. I have added one Lodine a day around noon as part of my pain regimen. I do get a strange rebound effect from it but I still think it's worth it. It gives me several hours a day to get some things done. It does make me feel better for a while. The 50mg pulsing seems to work a bit as well. As long as I don't go anywhere and eat carefully I seem to feel better. I think I need to decline offers to go anywhere for a while even if I want to go. I think my system is still too fragile.
Maybe later this week I will try lowering my therapeutic dose from 50mg to 25mg.
Later,
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Fri May 26th, 2006 20:27 |
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Benicar Q6H; 75mg mino QOD
Not doing well today but did relatively OK over the last week. I've been doing 75mg QOD with 50mg on Monday, 25mg on Wednesday and 25mg today (Friday) as therapeutic dosages. I still need to take a Lodine today and I hope that helps. I may skip my therapeutic dosages pretty soon so I can press on toward 100mg.
I'll touch base later.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
Member in Phase 3
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Posted: Sat May 27th, 2006 06:16 |
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Benicar Q6H; 75mg mino QOD
I ended up skipping my therapeutic dose of 25mg mino today (Friday), sort of accidentally. I felt horrible this morning and got a slow start today so I missed the time. I probably could have taken it late but decided to just skip it. Tonight (Friday night) I have horrible RA symptoms and a 99.3 fever. About 5pm I felt very tired, weak and sleepy. Took a short nap then the fever set in for a few hours. I'll let the herx take hold.
Update ya later,
Christina
Last edited on Sat May 27th, 2006 06:19 by Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
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Posted: Mon Jun 5th, 2006 03:35 |
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Benicar 40mg Q6H; 75mg Mino QOD
It's been a while since my last post. Since then (starting May 28th) I've developed abdominal cramping. I can't tell if it's a side effect of Lodine (which is a common side effect) or if it's herxing. Even when I quit taking the Lodine for a few days I still had mild cramping. I decided to try another Lodine capsule yesterday and the cramping was worse this morning but not as bad as the first time. Who knows. More time will help me figure this out. I hope I can continue the Lodine because it really helps with the pain.
Other than that it's all joint pain, and pretty bad. I've had some OK days here and there but mostly bad. I'm going to hang out at 75mg QOD for a couple weeks and hope the joint pain becomes more consistent so I know when to increase to 100mg. I also haven't been diligent about avoiding sugar. I broke down the other night and had some chocolate cake and the next day I had a Payday candy bar (YUM!!) Probably not helping my cause. My son's 4th birthday is Thursday so I might fall off the wagon then but I'll be as good as I can.
Until next time.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Mon Jun 5th, 2006 04:12 |
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Christina
Re cramps: apart from Lodine, see also info in this FAQ What kind of probiotics should I use?
and if further exploration is required, you may wish to check if MP meds adjustments make any difference..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Christina
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Posted: Fri Jun 9th, 2006 22:31 |
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Benicar 40mg Q6H; 75mg mino QOD
I'd have to say I've been feeling relatively good over the past five days. I wouldn't call it great but it hasn't been as extremely painful as before. I hate to write it down, but I really think I'm noticing a pattern and also noticing a bit of a "good spell" if you will. Now I know as soon as I say that I will start to tank. I am rating my pain (on a scale from 1-10) as an 8 on my Mino ON days and a 7 on my Mino OFF days. I am taking pain meds off and on as well.
I also wanted to mention that my inside NoIRs are really pretty dark and I'm not able to see as easily as before. I feel like I need to remove them to do things inside the house. Could that be because my last 25D test was 12 (over a month ago) so maybe it's even lower now? I also don't notice any ill feeling when I get moments of indirect sunlight. Is it possible that I may be able to expose myself to a little more light without it hindering my progress? I'm still in Phase One so that doesn't make sense but I'm just reporting my change in experience in reference to light exposure.
Any advice anypne has to share is appreciated.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Christina
Member in Phase 3
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Posted: Wed Jun 14th, 2006 06:28 |
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Benicar 40mg Q6H; Mino 100mg QOD
Well I finally took the 100mg mino plunge today. So far I don't feel different. Today was kind of a normal, regular arthritis day, not the interesting pain I've felt in my joints over the last couple weeks. I am no longer having abdominal cramping. It seemed like while I was having abdominal cramps my joints felt better. We'll see what happens with the new dosage.
I suppose I should request a questionaire for phase 2? I expect to remain on 100mg for about a month, maybe three weeks if I'm lucky. I have been on the full MP for three months and eight days.
I'm curious to see if the new 100mg dosage causes more intestinal cramping. I've not taken Lodine or ibuprofen for the last six days and I think this has helped eliminate the gastric distress.
I worked out (lightly) a few days ago just to get my joints moving and to increase their range of motion. The next day was pretty painful in my joints but I could tell they were "sore" like muscles are after a good workout. I'm hoping by doing a light workout I can get more blood to flow into the joint tissues. I'll keep it light and easy.
I'll keep ya posted on the 100mg. I sure wish I could attend the conference. I will be there next year, as I will feel good enough by then to travel. I can't wait. Good luck to all involved in the conference. I hope it helps to get the word out.
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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Aussie Barb
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Posted: Wed Jun 14th, 2006 06:35 |
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Thanks Christina
You can send for the Q now so you can be reading the Phase 2 Information and making arrangements to see your Dr in preparation.
see the FAQs How do I know if I'm ready for phase two?
this FAQ Where can I find phase two and three? for information re sending for the Questionnaire to fill and return, and you will be given feedback and access to the Phase 2 Information to discuss with your Dr.
Before starting Phase 2, we encourage Members to begin a progress report in the Phase 2 forum to discuss recommendations re their new meds and dosing.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Christina
Member in Phase 3
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Posted: Sun Jun 18th, 2006 03:47 |
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Benicar 40mg Q6H; Mino 100mg QOD
Hello all,
I will now be reporting my progress on the Phase Two section of this board. I will continue to take 100mg QOD which seems to be generating a tolerable herx so far.
I am excited that I am transitioning to the next phase in the protocol. I feel I am making progress and happy that phase one is almost over. I have finally learned what to expect and I know how to dampen my intolerable herxes by adding an extra dose of mino on my "off" days. My pain has changed over the last few weeks. I can't say it's really "better" but just "different". The joint pain is more sharp and breathtaking a times, but less achy and less "sick". It really is hard to explain. I've been assured I am herxing which I have to agree. Although the pain sucks, I'm glad it's different.
There were many times especially in the first two months of Phase One where I was really wondering if this was working. I am pretty confident saying I believe it is doing SOMETHING at this point. I can't really move any better than I could before but things are changing and I truly believe that is a good sign.
To all my MP friends in Phase One, can't wait to see you in Phase Two!
Good luck to all!
Christina
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Sero-neg RA 22 yrs osteopenia 125D28 Ph1Mar06 Ph3Mar07 25D9 (Dec06)
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