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Arrhythmogenic right ventricular cardiomyopathy (ARVC)
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Anyone on here NOT on Urso for their PBC? How are your LFTS with NOT being on this medicine?
I went off the Urso last year as a last resort as I had had a horrendous year with the itch( much like yr had before was diagnosed) . I had read an article about a new drug being trialed for PBC and it mentioned that quite a few of the participants who had never had ich from their PBC complained of
I went off the Urso last year as a last resort as I had had a horrendous year with the itch( much like yr had before was diagnosed) . I had read an article about a new drug being trialed for PBC and it mentioned that quite a few of the participants who had never had ich from their PBC complained of
littlemo
in
PBC Foundation
11 years ago
I am new to this site and love it! This is my 3rd set of chemo now am on caelyx help me with the side effects please
I have a decent time aside from some nausea and tiredness for the first 3 day I also take Nausea meds and steroids for this period, and including a regime of supplements ie: miseltoe or iscador shots, lyposperic vitamin C, COQ10, Krill, Vit A, Vit E, IP6 with Inositol, acidpolphilus, inner leaf alovera
I have a decent time aside from some nausea and tiredness for the first 3 day I also take Nausea meds and steroids for this period, and including a regime of supplements ie: miseltoe or iscador shots, lyposperic vitamin C, COQ10, Krill, Vit A, Vit E, IP6 with Inositol, acidpolphilus, inner leaf alovera
Fourbrothersforever
in
OvaCare
11 years ago
Quantum light therapy
Has anyone heard about this treatment? A friend in South Africa said her Mom is being treated for arthritis and it works very well. She also called it low level radiation. Any info will be welcome. Ann
Has anyone heard about this treatment? A friend in South Africa said her Mom is being treated for arthritis and it works very well. She also called it low level radiation. Any info will be welcome. Ann
superannie
in
Pain Concern
11 years ago
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Lot's of Question's
Just wanted to ask if anybody 's head feels in a daze it's just like I have lost all concentration it's not all the time it come's and go's my eye's also feel blurred I have just had an eye test and the optician says my sight is ok and my eye's look healthy so nothing to do with them.It doe's worry me
Just wanted to ask if anybody 's head feels in a daze it's just like I have lost all concentration it's not all the time it come's and go's my eye's also feel blurred I have just had an eye test and the optician says my sight is ok and my eye's look healthy so nothing to do with them.It doe's worry me
cavi
in
PBC Foundation
11 years ago
As Questran is off limits for the time being, I spoke to my hepatologist who suggest I can substitute Questran Light, colestipol or
general cholestymamine. I can't guarantee that the spellings are correct! I know what Questran Light is like, has anybody used either of the other two? If so, what comments do you have on taking them?
general cholestymamine. I can't guarantee that the spellings are correct! I know what Questran Light is like, has anybody used either of the other two? If so, what comments do you have on taking them?
Pat_H
in
PBC Foundation
11 years ago
I went to Boots today to collect my prescription for Questran and was told I can't have it because "the manufacturers have issues a recall"
of Questran and Questran light. Does anyone have any knowledge of why? Pat_H
of Questran and Questran light. Does anyone have any knowledge of why? Pat_H
Pat_H
in
PBC Foundation
11 years ago
Shall I Give up !!!
Have been on Questran Light now 3 months taking 2 drinks per day before meals but the itching is still as bad do I need to give them more time to work or if they was going to help with the itching should they have worked by now my blood tests are all getting better my ALP is still 436 but has come down
Have been on Questran Light now 3 months taking 2 drinks per day before meals but the itching is still as bad do I need to give them more time to work or if they was going to help with the itching should they have worked by now my blood tests are all getting better my ALP is still 436 but has come down
cavi
in
PBC Foundation
11 years ago
50 and a man with a canoe
So I reached 50, it was a nice quiet day. I went kind of reflective for an hour, I'm calling that my 'OMG I'm 50' moment. It was short. The most concerning thing was whether now I have to hang up the PVC disco shorts, and I decided no, they should have been hung up 30 years ago so it was a bit late.
So I reached 50, it was a nice quiet day. I went kind of reflective for an hour, I'm calling that my 'OMG I'm 50' moment. It was short. The most concerning thing was whether now I have to hang up the PVC disco shorts, and I decided no, they should have been hung up 30 years ago so it was a bit late.
Hidden
in
Cure Parkinson's
11 years ago
Being negative about being positive
I am too cheerful, I don't struggle enough, I have it too easy, I don't suffer, I am too happy, wait until you get advanced, a bad advert for fundraising, must have an agenda..... believe me I have heard all of these and more.... I am 50 in two days time. It feels like a milestone of sorts, but only
I am too cheerful, I don't struggle enough, I have it too easy, I don't suffer, I am too happy, wait until you get advanced, a bad advert for fundraising, must have an agenda..... believe me I have heard all of these and more.... I am 50 in two days time. It feels like a milestone of sorts, but only
Hidden
in
Cure Parkinson's
11 years ago
Questran Light
I just wanted to know how long it takes before you get any relief from the Itching,only just started to take it and i am living in hope that it does help me,any other advice on taking this will really help me,hope it's helped all of you who take it. Take Care
I just wanted to know how long it takes before you get any relief from the Itching,only just started to take it and i am living in hope that it does help me,any other advice on taking this will really help me,hope it's helped all of you who take it. Take Care
cavi
in
PBC Foundation
11 years ago
Light Therapy abandoned
Title says it all really. Having cancelled session 3 last week, I turned up for what would've been session 4 this morning but the nurse said she was not prepared to continue. Basically she said that because I'd burnt after such a small dose (2 x 17 seconds) she could not see how I would ever build up
Title says it all really. Having cancelled session 3 last week, I turned up for what would've been session 4 this morning but the nurse said she was not prepared to continue. Basically she said that because I'd burnt after such a small dose (2 x 17 seconds) she could not see how I would ever build up
PamJK
in
MY SKIN
11 years ago
I'm so excited!
Finally, after going down with a virus and reacting strongly to light therapy, I think I'm finally fit enough to get back out there tonight! I had got to the end of Week 2 (and done R3 twice already) but think I'll do R3 again tonight just to get me back into it. If that goes alright, I'll have
Finally, after going down with a virus and reacting strongly to light therapy, I think I'm finally fit enough to get back out there tonight! I had got to the end of Week 2 (and done R3 twice already) but think I'll do R3 again tonight just to get me back into it. If that goes alright, I'll have
PamJK
Graduate
in
Couch to 5K
11 years ago
Light Therapy - agony
Well last night, my thighs continued to swell until my knees disappeared amongst several folds of swollen skin. The skin was red raw, tight and painful. Sunburn without having seen the sun. Thankfully it has calmed down somewhat overnight but hasn't gone completely. And what an awful night
Well last night, my thighs continued to swell until my knees disappeared amongst several folds of swollen skin. The skin was red raw, tight and painful. Sunburn without having seen the sun. Thankfully it has calmed down somewhat overnight but hasn't gone completely. And what an awful night
PamJK
in
MY SKIN
11 years ago
Light Therapy for PLE - Session 2 of 8
Well it was a quick in and out at the hospital. Did discuss with the nurse the after-effects of the first session last Friday who seemed surprised by my rise in temperature. That's normal part of my PLE I find. She checked my legs were no longer showing any signs of redness, which they weren't so
Well it was a quick in and out at the hospital. Did discuss with the nurse the after-effects of the first session last Friday who seemed surprised by my rise in temperature. That's normal part of my PLE I find. She checked my legs were no longer showing any signs of redness, which they weren't so
PamJK
in
MY SKIN
11 years ago
Anyone every been told in years how much the Urso can slow down the progression of PBC?
The reason I ask is that I was told at my last appointment when I asked if I needed to go back on Urso( due to my Lft enymes being very elevated though Albumen normal and Bilirubin only slightly raised at 30) that even if I did go back on it, it may only slow down the progression by a year or two tops
The reason I ask is that I was told at my last appointment when I asked if I needed to go back on Urso( due to my Lft enymes being very elevated though Albumen normal and Bilirubin only slightly raised at 30) that even if I did go back on it, it may only slow down the progression by a year or two tops
littlemo
in
PBC Foundation
11 years ago
First light therapy + 10.5 hours.
Now feeling really crappy. Had a dental appointment this afternoon - check up and S&P. Pointed out a lump I have on my jaw and now another referral to another specialist at another hospital. :( But I digress. Came home from dentist feeling cold and shivering. Realised this is not the effects of
Now feeling really crappy. Had a dental appointment this afternoon - check up and S&P. Pointed out a lump I have on my jaw and now another referral to another specialist at another hospital. :( But I digress. Came home from dentist feeling cold and shivering. Realised this is not the effects of
PamJK
in
MY SKIN
11 years ago
Light Therapy
Well, I went for my first light therapy session this morning. It was a bit uncomfortable not being able to put any body lotion or moisturiser on after my shower but those were the instructions. My face felt so dry and my lips cracked in the cold wind. I wonder if a little lip salve would've been fine
Well, I went for my first light therapy session this morning. It was a bit uncomfortable not being able to put any body lotion or moisturiser on after my shower but those were the instructions. My face felt so dry and my lips cracked in the cold wind. I wonder if a little lip salve would've been fine
PamJK
in
MY SKIN
11 years ago
PLE
Finally got to the hospital this morning to discuss light therapy treatment. Start the actual sessions on Friday - two a week for 4 weeks. Just hope it helps. Feeling a bit anxious of the process - have to completely strip off apparently! - but I assume it's all sensitively done. Will let you know how
Finally got to the hospital this morning to discuss light therapy treatment. Start the actual sessions on Friday - two a week for 4 weeks. Just hope it helps. Feeling a bit anxious of the process - have to completely strip off apparently! - but I assume it's all sensitively done. Will let you know how
PamJK
in
MY SKIN
11 years ago
psoriasis ruining my life :(
hi, i developed psoriasis about 10 years ago, when me and my partner got together, it started on my head and is now on my head, ears, hands, elbows, belly, bum, knees and ankles :( i have tried every cream the doctor could prescribe and also got referred to a dermatology nurse, who wasnt very helpful
hi, i developed psoriasis about 10 years ago, when me and my partner got together, it started on my head and is now on my head, ears, hands, elbows, belly, bum, knees and ankles :( i have tried every cream the doctor could prescribe and also got referred to a dermatology nurse, who wasnt very helpful
louismummy2010
in
MY SKIN
11 years ago
light therapy
i have been having light therapy for several years due to psoriasis this latest treatment they have increased my time that im in the machine,i have never been in for so long,past treatments i only managed to stay in for a max of 4.5 mons but this treatment iv been in for 8.49 mins which was reduced
i have been having light therapy for several years due to psoriasis this latest treatment they have increased my time that im in the machine,i have never been in for so long,past treatments i only managed to stay in for a max of 4.5 mons but this treatment iv been in for 8.49 mins which was reduced
pickle1234
in
Fibromyalgia Action UK
11 years ago
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