|
Forums33
Topics44,195
Posts519,911
Members14,168
| |
Most Online3,221
Oct 6th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
|
OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Well, a year and a half ago I had a flare that flare that attacked my kidneys, it almost killed me, I was touch and go for several months and lost over 40 pounds during the first six months then the last year of it, I've been suffering the bouts of pyleonephritis, I've just put my weight back on and the kidney infections aren't as frequent but I sure don't want to go through that again....
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF  
|
|
|
|
|
Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
|
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Dysphagia is hell. Hmmmmm, surprised that the doctor prescribed Fossamax when he must have known about your GI problems. Mind you, my erstwhile GP did the same to me, then I researched...Ho-Hum. No way. Then I discovered the Strontium Citrate. Been in use since the Roman times - facinating. It should be released in the USA (sometime) but under the name Manelate - in Europe it is Pharmed out as Protelos Strontium Ranelate, but, unfortunately the clonkers buffered it with Aspartame...you couldn't invent it could you? (rhetorical 'LOL') I have a script for the Ranelate, but buy my own as Strontium Citrate, unadulterated!!  But will advise again, and again, *always research first, and always ask questions. Go well hon - Molly C (UK) Keepin on Keepin on - as she does 
MollyC1i - Riding OutAS
|
|
|
|
|
Joined: Aug 2008
Posts: 570
Sergeant_AS_Kicker
|
|
Sergeant_AS_Kicker
Joined: Aug 2008
Posts: 570 |
Hi Molly,
Yes indeed! They can be VERY efficacious. I love the EFAs and couldn't do without them. Also probiotics. There's a lot of good stuff out there, and there are some great, reputable companies offering it.
~Moll B (US)
In the depths of winter, I finally learned that there was in me an invincible summer. -Albert Camus
|
|
|
|
|
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
|
|
OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Yes, you're right, my doctor did know of my stomach problems, he perscribes Famatodine for GERD and he's been doing that for almost a year, so makes sense to me that he should've taken that into consideration, also, he put me on Coral Calcium, 1500mg per day. I don't ever recall reporting the episodes of dysphagia with him though, that situation seemed to have resolved itself shortly before I went to him.
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Quote:
Thanks Molly, you know he put me on the fossomax last time and I remember thinking that I didn't want to take a drug that was definitely going to tear my GI tract up worse than it already is...I took it for 3 weeks and quit after I started getting attacks of dysphagia, I had gotten my GI healed pretty well and had no dysphagis for about 7 months and I could tell after just 3 weeeks it was torn up again asnd dysphagia is horrible...you go to swallow a bite and it gets hung up in your throught because of esphogial spasms...and my attacks have lasted as long as 4 hours. I also thought about alternatives when after having to pay over $650 for my meds and after taking them for only 2 days, my pain levels have doubled! So, thank you, thank you...I'm going to have to change my whole routine until I find something that works and I'm going to need help with that, so thank you Molly....  
i'll post in bits when i have time today......
so first thought.......
if the fossomax was causing stomach / gerd problems then molly's advice is even more pertinent. i know i won't ever be able to take the meds like fossomax, and from the stuff that molly mentioned (and i've read the same things), maybe its a blessing. so i work hard at the calcium/magnesium/vit D thing, though it turns out my blood D is low (33, the low end of "normal") so i'm upping the D. but my osteopenia has been holding steady (at least not getting worse) since 2002, but i'd like to increase my bone density if i can.
my husband has bad GERD (a genetic thing for him) and food would get stuck in his esophogus because of scar tissue down there. every few years, he'd have a procedure where they'd go down there and snip out the scar tissue. over the years, the years in between get further and further apart and the amount of constricture / scar tissue becomes less and less. meaning that the prilosec really works for him. he used to use mylanta before bedtime as well, but doens't even need it now.
sue
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Quote:
Yes, you're right, my doctor did know of my stomach problems, he perscribes Famatodine for GERD and he's been doing that for almost a year, so makes sense to me that he should've taken that into consideration, also, he put me on Coral Calcium, 1500mg per day. I don't ever recall reporting the episodes of dysphagia with him though, that situation seemed to have resolved itself shortly before I went to him.
i just bought the coral calcium to try to balance my Ca/Mg/D better but i'm trying to be careful as some Calcium's make my stomach unhappy. i've been getting my Calcium from total cereal but, it doesn't have much magnesium or D. also, i should have known before, but recently read that we only absorb about 500 mg at a time, so all 100% in one serving of total wasn't doing me much good. but i tolerate the Total really well; no tummy troubles. i know the calcium chews (viactiv) bother my stomach (give me indigestion), but they are calcium carbonate, and calcium carbonate antacids, really bother my stomach. i thought the chews would be good because 1) they are fun flavors like chocolate and caramel and 2) being soft chewy candy-like things, i could break off little bites here and there, but really not the best for me.
sue
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
Blood Pressure.
I don't know much about alternatives to the drugs, don't know much about the alternatives that molly mentioned, but if the exercise and weight loss don't work for me, i'll have to remember this post and look into things like what she recommended.
however, what molly said about your BP not being too high. either 1) your doctor is giving drugs too readily and mine is being properly cautious about starting the drugs, or 2) your doctor is being proactive about your BP and mine is being too nonchalant about my BP and should be giving me drugs. as my BP was consistently higher than yours. i think the truth is somewhere in the middle.
there is a lot of talk about "white coat syndrome" but i read recently that people that start off with that end up with high BP. so i think my doctor was being too nonchalant but i do worry about the BP med if not absolutely necessary. from what i've read, BP meds can come with not so nice side effects.
thus, i think our doctors should be concerned, but i think they should be lecturing us about the exercise....i could be wrong.....and your situation could be different from mine.....but at least for me......i was not happy with my BP (and the other things which i've mentioned / will mention).....so i started the walking or biking at least 30 minutes (now more like 60) every day.....i've only lost a modest amount of weight, but noticed the BP coming down before the weight loss even......
i really think aerobic exercise can make a huge impact. personally, i'd try that first. and if it doesn't work, then think about drugs or supplements.
of course if your BP gets high when in a lot of pain, then its not as simple as exercise perhaps. but still, i'd go the exercise route first. JMO.
sue
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
blood sugar and blood lipids and Lipitor.......
later......gotta go to the gym....literally.....back later.....
sue
|
|
|
|
|
Joined: Apr 2002
Posts: 12,465
|
|
Joined: Apr 2002
Posts: 12,465 |
I know very little about blood pressure, so everyone should take my post with a grain of salt (or no salt perhaps ) but it's my understanding that the numbers need to be viewed in context. Michelle is younger and slim so higher numbers may represent more of a concern than the identical numbers for someone of an older age and/or higher weight. My BP is quite low, but then I'm also thin so apparently this is not as unusual as it might be for someone heavier, or so I'm told. So while the number itself is important, it seems there are additional factors which doctors weight in and consider in determining each individual's personal health status or risk. We are all similar but unique! mig
|
|
|
|
|
Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
|
|
OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Quote:
if the fossomax was causing stomach / gerd problems then molly's advice is even more pertinent. i know i won't ever be able to take the meds like fossomax, and from the stuff that molly mentioned (and i've read the same things), maybe its a blessing. so i work hard at the calcium/magnesium/vit D thing, though it turns out my blood D is low (33, the low end of "normal") so i'm upping the D. but my osteopenia has been holding steady (at least not getting worse) since 2002, but i'd like to increase my bone density if i can.
my husband has bad GERD (a genetic thing for him) and food would get stuck in his esophogus because of scar tissue down there. every few years, he'd have a procedure where they'd go down there and snip out the scar tissue. over the years, the years in between get further and further apart and the amount of constricture / scar tissue becomes less and less. meaning that the prilosec really works for him. he used to use mylanta before bedtime as well, but doens't even need it now.
sue
Hi Sue, the thought that I had about Fossomax tearing up my stomach was before I even had the perscription filled, I was saying that Fossomax is known to cause stomach problems. Also, I wanted to add that my dysphagia is not caused by scar tissue from GERD, in my case, it's from the AS, cervical ossification causing dysphagia....I used to take Prilosec but now I'm on Famatodine for the GERD, I exercise at least an hour everyday, it's a grueling workout and it definitely exceeds my cardio-pulmonary target, in addition to that, I swim laps daily, I do want to get a new bike though, I'm sure mine is history, it was of course in the salt water during the hurricane. I'll keep plugging at it, thanks so much....
http://www.medscape.com/viewarticle/577127_9
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
|
|
|
|
0 members (),
850
guests, and
277
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|
