- This topic has 29 replies, 5 voices, and was last updated 3 years, 10 months ago by
.
-
Posts
-
Hello
My wife Cindy was diagnosed with CREST 30 years ago. She is 69 years old. She was treated by a RA Dr the first 14 years with all the standard DMARDS. She almost died in 2004. Lungs tested below 50%. Started antibiotic protocol (2 100mg mino per day) with Dr S Iowa. Her lungs tested above normal 6 months later. She got off all DMARDS in 2004.The last few years she has developed dementia caused by Schlerderma, her fingers have swollen & stiff, esophagus & stomach not functioning very well, shortness of breath, knee cartilages gone. She has hyperpigmentation all over her face & body, & her skin is thickening. She is taking Tramadol & Tylenol for the pain.
Could she benifit by combining AP & DMARD treatments at the same time? Is this something other AP patients are doing? Does anyone have other suggestions that may improve my wife’s decline?
She hasn’t been to an RA Dr for treatments since 2004.
We no longer have Dr S. Her family Dr is continuing to prescribe her mino & clindamycin IV’s.
Thank you!Hawk, very sorry to hear your wife has been in decline for the past several years. Have you tried different Minocycline generics? Some generics have been failing others here. Also has your kindly local doc considered adding a secondary oral antibiotic? Some folks will add a macrolide, such as clarithromycin or azithromycin.
Can you share a bit more about your wife’s Minocycline dose, how often she has IVs, any co-morbidities (e.g., thyroid disease that is common in rheumatics), other meds and supplements she might be taking, etc.
It might help others to offer fellow patient ideas with a tad more info. Thanks!
Thanks for your reply Maz.
Cindy tried Zithromax about 5 years ago. Her liver count went high & family Dr took her off of it. I think Cindy would be willing to try it again. What is the typical dosage?Cindy’s minocycline 100mg x 2/day is manufactured by OHM for Torrent.
Other prescriptions she takes:
Omeprazole 40mg x 1day
Losartan 50mg x 1day
Duloxetine 30mg x 1day
Minocycline 100mg x 2day
Levothyroxin 112mg x 1day
Clonazepam .5mg x 2day
Hydrochlorothiazide 12.5mg x 1
Potassium chloride 10meq x 1
Acyclovir 400mg x 2day
Tramadol 50mg x 2-4day
Pravastatin 80mg x 1day
Fenofibrate 145mg x 1daySupplements:
Calcium 600mg x 1day
Multivitamin x 1day
Vit D 2000mg x 1day
Vit C 1000mg x 1day
Perversion x 2day
Allergy x 1day
Low dose asprin 80mg x 1day
Magnesium 250mg x 1dayCorrection,
Cindy takes Tramadol 50mg x 2day, & (4) extra strength Tylenol.IV’s:
Clindamycin 900mg x 2day for 5days, every 6 months, & once a month between the remaining months. She has missed several of the single it’s, because we travel a lot.Hi Hawk,
This is just a quick response as I’m on my way out, but taking a quick look at everything your wife takes, I’m thinking (and I’m not a medical professional) that something she’s taking is reducing the effectiveness of her Minocycline. For e.g., calcium interacts with both Minocycline and levothyroxine. CREST is a unique form of SD, causing a buildup of calcium (calcinosis) in the tissues, so taking that particular supplement may not be ideal, especially if taken too close to mino of levothyroxine doses. Minocycline binds to minerals, like calcium, in the gut and doesn’t get effectively absorbed, due to its chelative properties.
Torrent mino has/is being used by a number of people here and so it would be good to begin a new discussion thread on that generic brand with Torrent in the subject header so others will see it. You may get some good feedback on whether others have been successful or not on it.
I’ll have to do a bit of research on the other meds she’s taking and will get back soon if I can find anything. In the meantime, hope others will chime in for her.
She tries to take her calcium, Multivitamin, vit D, vig C, Magnesium, & Persvesion 2 hours after Mino. Her food doesn’t leave her stomach for 14 hours, so possibly the Calcium & Mino are in her stomach together. Your right that may be why she is getting worse.. Her Multivitamin has most of the daily allowance for all these supplements. I’ve read that we don’t need all these additional supplements, if we eat balance meals & take a Multivitamin per day. She takes her Levothyroxin first thing in the morning & doesn’t take first mino until 2 hours later.
Thanks Maz!
Hi Hawk;
I did a full semester a couple years ago on supplements and you wife’s look fine to me.I do think that slow motility is causing a host of problems including the minerals counteracting with the antibiotics.
I had a real bad case of SD but am just fine now.I got rid of my Raynaud’s by using the supplement Nattokinase at least 30 minutes before eating.It works a lot like TPE in so far as it disolves the fibrin that causes the Rouleaux that in turn clod and burst tiny capillaries.It does thin the blood so be careful not to take too much.I took 1 capsule daily for a month or so and then one every other day or two.Found the best was Nattomax,available on Amazone
Also solved the digestive issues.the supplement chain GNC makes a great blend of digestive enzymes.I think that there are 16 or 18 different ones,one for meat,one for dairy,one for cellulose etc.They are dirt cheap around 30$ for a big blue or beige bottle of 240 capsules.I take 2 with a meal and one with a snack.They make the food transit much faster so I got rid of my Sibo in a couple months,no more bloating and all the other problems.Before going to bed I would take 1/2 teaspoon of baking soda in a small glass of waterto neutralize the remaining acid in my stomach.The throat healed and I totally got rid of the Gerd,again,in a couple months.
Google…benefits of Nattokinase and benefits of digestive enzymes.Great info but beware of sellers.
LynneHi Hawk;
I forgot to mention thatBenadryl helped with some symptoms.No idea why but I know it was well discussed on the Rheumatic.org site a couple years ago..You can get the Equate brand at Wallmart cheaplyLynne
My wife needs to get 1200mg of calcium a day. She currently takes Multivitamin has 210mg & a Calcium pill has 600mg. I’m concerned the calcium stays in her stomach too long then binds to minocycline. Would she be better off drinking a glass of milk 600mg. How do u take your calcium?I used to take my mino with breakfast of toast and coffee.Had lunch and somewhere around 4pm had a snack and took minerals and vitamins with it.Have supper and remaining supplements and around 11pm I had a snack with the last dose of mino.Today I only take one doxycycline with breakfast as that is enough to hold my remission.Digestive enzymes with all food and Nattokinase 30 min. before breakfast
Does your wife have asthma? What is her weight?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousI’m sorry to write this, but I think no patient can get better taking so many medications and supplements. Years ago when I was taking many medications I felt worse and worse. I asked about your wife’s weight because if she doesn’t weigh much it is even more for her. Shortness of breath is worrying. Doctors kept telling me that I had asthma for more than 20 years. When I stopped taking Methotraxate and Naproxen I stopped using asthma medications and didn’t have shortness of breath since. Many people are sensitive to Aspirin. I can see that she takes something for allergy. Why does she take it? Also if she takes vitamin D and calcium it is important to take vitamin K2. We must be careful with supplements. When I take calcium 215 mg for three days I must stop because I start having problems with digestion. Shouldn’t she increase vitamin C? Does she take probiotics? Any detox?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousLynne thanks for sharing your dosage schedule! Cindy tries not to take any dairy or pills 2 hours before minocycline or 2 hours after. I will compare your schedule with Cindy’s, & see if it can be improved. I still think the
Nattokinase may really help Cindy.
She tried 2 doxycycline a day for a year. Her hyperpigmentation got better, but her condition worsen.
You must be logged in to reply to this topic.