 |
| Author | Post |
|---|
Melinda
Member
|
Posted: Tue Feb 9th, 2010 12:48 am |
|
Wow, I'm just full of questions today, so my apologies. My mother was just diagnosed last week with Sjogren's by her PCP. Since she hasn't seen a rheumy yet, we don't know yet if it is primary or secondary, so here is my question. Do any of you know if AP works on Primary Sjogren's??
I did a search here and I see that many of you have Secondary Sjogren's, but just in case my mom's is primary, I wonder if it could be treatable, too. I know that she's been worried about me since my dx, and I feel really badly that she is going through all of this now, too. I'd love to give her some hope that AP could be a treatment option for her, also. BTW, I know that she's been bitten by ticks a number of times the last few years. Although her regular Lyme's tests have been negative, I'm going to suggest that she request the more accurate test. Yet another thing that I've learned from the RB BB. Thank you all.
____________________
49 y/o with Ltd SSD since mid-late '07.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Brain fog, dizziness & digestion improving. Mino, Prilosec, Probiotic, Multi-Vit w/iron, Vit.D&E, Fish Oil.
Plaquenil dc-ed b/c of vision problems.
|
Maz
Volunteer
| Joined: | Sat Feb 16th, 2008 |
| Location: | Connecticut USA |
| Posts: | 4686 |
| Status: |
Offline
|
|
Posted: Tue Feb 9th, 2010 02:05 am |
|
 
____________________
RA/Lyme - ABX since 11/06
Personal Progress Thread: http://rbfbb.org/view_topic.php?id=301&forum_id=3
Current Lyme Protocol:
Mepron 5ml BID (4 weeks on/2 weeks off)
Azithromycin 250mg BID (4 weeks on/2 weeks off)
LDN started 02/16/10 and increas
|
Maz
Volunteer
| Joined: | Sat Feb 16th, 2008 |
| Location: | Connecticut USA |
| Posts: | 4686 |
| Status: |
Offline
|
|
Posted: Tue Feb 9th, 2010 02:14 am |
|
Hi Melinda,
So sorry to hear about your Mom, too.
I was going through some old RBF newsletters from a number of years ago and there is a goldmine of remission stories in these. Yesterday, I came across the above two Sjogren's stories...unfortunately, the first came out second (to the right of the page) and the second came out first (to the left of the page) when I scanned and pasted them in for you! Hopefully, you'll be able to make sense of the order, but there are two stories, one of a lady up in NB, Canada, with Primary Sjogren's and the other of a lady with secondary Sjogren's, who some here will recognize.
The lady with Primary Sjogren's, Marie-Clare Carder has included her phone number for contact if you want to try to connect with her. This story was published about 10 years ago, according to the date on this newsletter, but she may still be at the same contact address.
Peace, Maz
____________________
RA/Lyme - ABX since 11/06
Personal Progress Thread: http://rbfbb.org/view_topic.php?id=301&forum_id=3
Current Lyme Protocol:
Mepron 5ml BID (4 weeks on/2 weeks off)
Azithromycin 250mg BID (4 weeks on/2 weeks off)
LDN started 02/16/10 and increas
|
Melinda
Member
|
Posted: Tue Feb 9th, 2010 04:12 am |
|
Maz,
Thank you very much for finding, scanning & posting these articles. They really do give me hope that AP is likely to work for my mom, too. It sounds like even if it's "only" Primary Sjogren's that it can/will work as well as it does for people with Secondary Sjorgren's. So I'll pass this info on to her right away. I'm sure that this rheumy that she is going to see soon will probably try to discourage her, but I have a hunch that she'll want to try AP anyway. She knows about my experience with the Clindy and that I'm going to be on AP soon, so I doubt that she'll be dissuaded either.
Again, thank you!
Melinda
____________________
49 y/o with Ltd SSD since mid-late '07.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Brain fog, dizziness & digestion improving. Mino, Prilosec, Probiotic, Multi-Vit w/iron, Vit.D&E, Fish Oil.
Plaquenil dc-ed b/c of vision problems.
|
mkbeeliever
Member
| Joined: | Sat May 9th, 2009 |
| Location: | Georgia USA |
| Posts: | 395 |
| Status: |
Offline
|
|
Posted: Tue Feb 9th, 2010 05:00 pm |
|
Melinda wrote: Maz,
Thank you very much for finding, scanning & posting these articles. They really do give me hope that AP is likely to work for my mom, too. It sounds like even if it's "only" Primary Sjogren's that it can/will work as well as it does for people with Secondary Sjorgren's. So I'll pass this info on to her right away. I'm sure that this rheumy that she is going to see soon will probably try to discourage her, but I have a hunch that she'll want to try AP anyway. She knows about my experience with the Clindy and that I'm going to be on AP soon, so I doubt that she'll be dissuaded either.
Again, thank you!
Melinda
Today after reading this, I asked my mom about her Sjorgren's symptoms. She's got a severe case - it's secondary to systemic scleroderma. She said it's better! I don't have to put as my eye drops in her eyes anymore and saliva has increased. Sometimes she doesn't notice it because she takes a lot of Benedryl for itching but the itching has subsided and she can tell a difference in the symptoms.
Blessings,
Michelle
____________________
Loving caregiver to my mom Kathy. Scleroderma. Stage 5 Renal Failure on Dialysis. Mild Pulmonary Hypertension. Started Minocycline June 4, 2009. Worked up to 200mg per day. Started Zithromax 250 mg 1x a week 12-31-09. Upped Zith to 2-250 mg. tabs 2-4-10.
|
Lynne G./SD
Member
|
Posted: Tue Feb 9th, 2010 05:56 pm |
|
Hi Maz;
If you posted the info below Melinda's first posting I do not have it so I guess my computer can't pick it up.Your post is empty.Could you send the info as I have a friend strangely in N.B. also who has a terrible case of Sjogren's.Maybe she could talk to that lady you mention.
Thanks,Lynne
____________________
Systemic SD In total remission BUT just discovered Lyme.Taking 100mg minocin 3 times a week
zithromax 250mg on Friday
clindamycin 300mg on Thursday
fluconazole 100mg every day
metronidazole250mg 5 days on and 5 days off
Herx from hell especially the
|
Maz
Volunteer
| Joined: | Sat Feb 16th, 2008 |
| Location: | Connecticut USA |
| Posts: | 4686 |
| Status: |
Offline
|
|
Posted: Tue Feb 9th, 2010 06:27 pm |
|
Lynne G./SD wrote: If you posted the info below Melinda's first posting I do not have it so I guess my computer can't pick it up.Your post is empty.Could you send the info as I have a friend strangely in N.B. also who has a terrible case of Sjogren's.Maybe she could talk to that lady you mention.
Lynne, if you PM me your email address, I'd be happy to send you the scanned article as an attachment.
Peace, Maz
____________________
RA/Lyme - ABX since 11/06
Personal Progress Thread: http://rbfbb.org/view_topic.php?id=301&forum_id=3
Current Lyme Protocol:
Mepron 5ml BID (4 weeks on/2 weeks off)
Azithromycin 250mg BID (4 weeks on/2 weeks off)
LDN started 02/16/10 and increas
|
Current time is 08:41 pm | |
|
|
|
|
