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Hello PBCers
Happy New Year! I am so glad I found this community of fellow PBCers both for support and for information. I'm glad to be here and would love to hear everyone's story. As for me, I was diagnosed 12 years ago. I've been taking Ursodiol since my diagnosis and I am thankfully still in stage 1.
Happy New Year! I am so glad I found this community of fellow PBCers both for support and for information. I'm glad to be here and would love to hear everyone's story. As for me, I was diagnosed 12 years ago. I've been taking Ursodiol since my diagnosis and I am thankfully still in stage 1.
upintheair
in
PBC Foundation
7 years ago
Support pillow
Hi I have fibromyalgia and I am looking in to things to use as a sleep aid. A friend saw the u full body pillow. I was wondering whether anyone has used one and if to did it help with getting a better (comfortable) nights sleep. I would be greatful on your thoughts.
Hi I have fibromyalgia and I am looking in to things to use as a sleep aid. A friend saw the u full body pillow. I was wondering whether anyone has used one and if to did it help with getting a better (comfortable) nights sleep. I would be greatful on your thoughts.
Mrziggs1
in
Fibromyalgia Action UK
7 years ago
Belated happy Christmas but early happy new year
Hi everyone Hope things have been as good as they can be! I thought I would wish you a happy new year early:) I will never make 12 midnight tomorrow! I am now officially a year in from when my symptoms started and I have been reviewing progress:) Down to 5mgs of prednisolone! Up 14lbs in weight.
Hi everyone Hope things have been as good as they can be! I thought I would wish you a happy new year early:) I will never make 12 midnight tomorrow! I am now officially a year in from when my symptoms started and I have been reviewing progress:) Down to 5mgs of prednisolone! Up 14lbs in weight.
JulieR2
in
PMRGCAuk
7 years ago
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Oh boy! A New Med!
Went to GP last night and general alignment meeting after seeing the rheumatologist... I asked for a copy of the letter sent by specialist to GP Surgery. Was saddened to see (right there in black and white) that I do indeed have an "auto-immune" disease and "will be on treatment with steroids for 1
Went to GP last night and general alignment meeting after seeing the rheumatologist... I asked for a copy of the letter sent by specialist to GP Surgery. Was saddened to see (right there in black and white) that I do indeed have an "auto-immune" disease and "will be on treatment with steroids for 1
Hidden
in
PMRGCAuk
7 years ago
THOSE IN STAGE 3 PBC ANYONE EXPERIENCING A BIT MORE NAUSEA AT VARIOUS TIMES NOT ASSOCIATED WITH EATING AND/OR DRINKING LIQUIDS?
I was dx'd Stage 1 in 2001 via biopsy; Stage 2 in 2011 via biopsy; Stage 3 in Sept. 2017 via Elastography. Am experiencing a slightly, only slightly, nausea at various times not associated with eating and/or drinking liquids than I ever did in the last two stages. I do have irritable bowel syndrome
I was dx'd Stage 1 in 2001 via biopsy; Stage 2 in 2011 via biopsy; Stage 3 in Sept. 2017 via Elastography. Am experiencing a slightly, only slightly, nausea at various times not associated with eating and/or drinking liquids than I ever did in the last two stages. I do have irritable bowel syndrome
kehello
in
PBC Foundation
7 years ago
Need a little rant and some advice
Hey, I’ve just been to the hospital for another consultation. I’m 18 years old so she said they won’t do much except keep trying different hormone pills. I’ve tried the mini pill and combined but these haven’t worked. I’ve just been given Provera and need some quick advice on whether to take them
Hey, I’ve just been to the hospital for another consultation. I’m 18 years old so she said they won’t do much except keep trying different hormone pills. I’ve tried the mini pill and combined but these haven’t worked. I’ve just been given Provera and need some quick advice on whether to take them
princessk09
in
Endometriosis UK
7 years ago
A Little Prednisolone Advice Please
Good morning all. So I began my journey with PMR in July 2016, on 15mg which worked wonders. Since then I have been able to reduce down to 9mg which is where I've been for about 6 months. I have always split the dose morning and evening as I found at the beginning it wasn't lasting me 24 hours and would
Good morning all. So I began my journey with PMR in July 2016, on 15mg which worked wonders. Since then I have been able to reduce down to 9mg which is where I've been for about 6 months. I have always split the dose morning and evening as I found at the beginning it wasn't lasting me 24 hours and would
Amstel
in
PMRGCAuk
7 years ago
Sleeping??
Hi everyone I'm writing this at 6 in,the morning because my endo pain and period all over my bed has woke me, I take mefenamic acid usually but when I wake up and its been over 4 hours since last dose I take cocodomal, it works but of course doesnt get rid of all the pain, sleeping is an issue once I
Hi everyone I'm writing this at 6 in,the morning because my endo pain and period all over my bed has woke me, I take mefenamic acid usually but when I wake up and its been over 4 hours since last dose I take cocodomal, it works but of course doesnt get rid of all the pain, sleeping is an issue once I
Charlottepeacock27
in
Endometriosis UK
7 years ago
Christmas Greetings
Hello everyone, I've posted this on another PMR forum so I do apologise to all of you who are members of both and so have already seen this. it's seems ages since I've contributed anything to the forum but many of you know I run holiday cottages, I'm still decorating the house, I run an auction site
Hello everyone, I've posted this on another PMR forum so I do apologise to all of you who are members of both and so have already seen this. it's seems ages since I've contributed anything to the forum but many of you know I run holiday cottages, I'm still decorating the house, I run an auction site
tina-shelley
in
PMRGCAuk
7 years ago
Acetic Acid aka Spirit Vinegar
Been gluten free now for nearly a year and getting on great but still struggling to understand why. Acetic Acid, (and sodium acetate) aka Spirit Vinegar, mimics the gluten effect for me. I get the thing about undistllled vinegars, most particularly malt vinegar, and appreciate that the distillation
Been gluten free now for nearly a year and getting on great but still struggling to understand why. Acetic Acid, (and sodium acetate) aka Spirit Vinegar, mimics the gluten effect for me. I get the thing about undistllled vinegars, most particularly malt vinegar, and appreciate that the distillation
Karen49
in
Gluten Free Guerrillas
7 years ago
GENTLEMAN IN STAGE 4, LITTLE SCARED, ASKING FOR IDEAS/INPUT
Hi, I was the one who offered the PBCers Organization also in addition to HealthUnlocked. I write to a PBCer in Kentucky, 80 year old female, great, great shape for not even ever using Urso/Ursodiol! She is a "naturalist" (I call her that/might be a wrong term) so to speak, and offered me this to pass
Hi, I was the one who offered the PBCers Organization also in addition to HealthUnlocked. I write to a PBCer in Kentucky, 80 year old female, great, great shape for not even ever using Urso/Ursodiol! She is a "naturalist" (I call her that/might be a wrong term) so to speak, and offered me this to pass
kehello
in
PBC Foundation
7 years ago
Biphosonates ( Alendronic acid etc )
Came across this on Twitter http://bjr.boneandjoint.org.uk/content/6/10/602 It's some new research on the effect of Biphosonates on bone and whether they actually make a difference to fracture risk. High dose prednisolone can cause oesteoporosis ( a weakening of the bone making fractures more likely
Came across this on Twitter http://bjr.boneandjoint.org.uk/content/6/10/602 It's some new research on the effect of Biphosonates on bone and whether they actually make a difference to fracture risk. High dose prednisolone can cause oesteoporosis ( a weakening of the bone making fractures more likely
Hidden
in
Vasculitis UK
7 years ago
Advice needed
I have Rheumy appointment Tuesday and need some advice. Diagnosed PMR June this year. 15mgs miracle. Tapering has been a problem. Since diagnosis Osteoporosis -2.5 T score on one vertebrae in spine, Osteoarthritis in knees, borderline diabetes type 2. Rheumy wanted me to go on Alendronic acid I refused
I have Rheumy appointment Tuesday and need some advice. Diagnosed PMR June this year. 15mgs miracle. Tapering has been a problem. Since diagnosis Osteoporosis -2.5 T score on one vertebrae in spine, Osteoarthritis in knees, borderline diabetes type 2. Rheumy wanted me to go on Alendronic acid I refused
Marilyn1959
in
PMRGCAuk
7 years ago
FAQ POST........HOW TO RUN C25K
So, You are wanting to know how to do the Couch to 5k training plan for non runners and have loads of questions. This forum is designed to enable you to ask for advice from the welcoming, supportive and incredibly nice bunch of folk who make up our membership, so feel free to do that, but a quick browse
So, You are wanting to know how to do the Couch to 5k training plan for non runners and have loads of questions. This forum is designed to enable you to ask for advice from the welcoming, supportive and incredibly nice bunch of folk who make up our membership, so feel free to do that, but a quick browse
Hidden
Mentor
in
Couch to 5K
7 years ago
Newbie
Hi all, just diagnosed with PMR. quite a shock. Now on pred but also have Barrett’s Oesophagus. Been prescribed Alendronic Acid as in the past 18 months I have had 2 fractures in left foot. Have also had several fractures during the last 40 years. I am now nearly 74 and used to a fairly active life being
Hi all, just diagnosed with PMR. quite a shock. Now on pred but also have Barrett’s Oesophagus. Been prescribed Alendronic Acid as in the past 18 months I have had 2 fractures in left foot. Have also had several fractures during the last 40 years. I am now nearly 74 and used to a fairly active life being
AmberAliona
in
PMRGCAuk
7 years ago
Booked my own Dexa scan
Hi everyone, after trying 1 tablet of Alendronic Acid and feeling awful, my doctor agreed to refer me for a Dexa scan (at my request) to see if I needed it. My local hospital has a waiting list to get onto the waiting list!!!! and the next nearest hospital is an average of 18 weeks to be seen. I have
Hi everyone, after trying 1 tablet of Alendronic Acid and feeling awful, my doctor agreed to refer me for a Dexa scan (at my request) to see if I needed it. My local hospital has a waiting list to get onto the waiting list!!!! and the next nearest hospital is an average of 18 weeks to be seen. I have
Jo1947
in
PMRGCAuk
7 years ago
BONES Calcium Vit D magnesium Vit k2
I have decided definitely not to take Alendronate (fosomax) or any of the Bone "strengthening" prescriptions. That being said I am wondering if anyone out there saw an improvement in Dexa scan with the above mentioned vitamins. I am beginning weight lifting (tiny weights) and have always walked a lot
I have decided definitely not to take Alendronate (fosomax) or any of the Bone "strengthening" prescriptions. That being said I am wondering if anyone out there saw an improvement in Dexa scan with the above mentioned vitamins. I am beginning weight lifting (tiny weights) and have always walked a lot
yogabonnie
in
PMRGCAuk
7 years ago
Introducing myself
Hi. I'm new to this site but grateful to have found the enormous amount of useful info. PMR took ages to diagnose due to hip fracture and dynamic screws op at beginning of year - everything was put down to that. Osteoporosis (DEXA scan) diagnosed and AA prescribed. Bouncing round on steroids (not complaining
Hi. I'm new to this site but grateful to have found the enormous amount of useful info. PMR took ages to diagnose due to hip fracture and dynamic screws op at beginning of year - everything was put down to that. Osteoporosis (DEXA scan) diagnosed and AA prescribed. Bouncing round on steroids (not complaining
Pongo13
in
PMRGCAuk
7 years ago
Zoledronic acid and RA flare?
Hi I had a ZA IV two weeks ago, since then some bone pain which I was told could happen, but my wrists/thumb have really flared, has anyone experienced this? I have OI/RA and osteonecrosis in the knee. Caroline
Hi I had a ZA IV two weeks ago, since then some bone pain which I was told could happen, but my wrists/thumb have really flared, has anyone experienced this? I have OI/RA and osteonecrosis in the knee. Caroline
CAROLINE23RED
in
NRAS
7 years ago
Thyroxine, alendronic acid and ibs
I'm new here and desperately need some help, please. I have to take Levothyroxine and Lanzoprazole daily, plus alendronic acid once a week. Fitting them in is a nightmare and I am having so many digestive problems due to my IBS coupled with a very restricted diet, especially in the last few months.
I'm new here and desperately need some help, please. I have to take Levothyroxine and Lanzoprazole daily, plus alendronic acid once a week. Fitting them in is a nightmare and I am having so many digestive problems due to my IBS coupled with a very restricted diet, especially in the last few months.
Hidden
in
Thyroid UK
7 years ago
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