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Constant uti's
Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then
Hello everyone Hope you are all as well as you can be . I think I just need a space to talk where people understand and offer valuable advice. I was diognosed with sle lupus and sjogrens in Dec 22 and was put on hydroxychloroquine plus drops /ointments for eyes artificial saliva ect ect. Since then
Lucylou72
in
LUPUS UK
5 months ago
another pharma update
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
This is in regards to the pharma Ipsen... They are trialing a drug called Elafibranor. It is being used for treatment in PBC, biliary atresia (in children) , PSC, Alagille Syndrome, and Primary Familial Cholestasis. With patients taking Urso, often up to 40% do not see improvement. 3-5% of patients
DonnaBoll
Administrator
in
PBC Foundation
4 days ago
Question on steam/vapour breathing
I have a question for those who use steam/vapour breathing to ease off their symptoms. Do you use distilled water, reagular tap water, or a saline solution? My specialist seemed puzzled when I asked her this, and said that, in principle, a saline solution is optimal. I currently use distilled water.
I have a question for those who use steam/vapour breathing to ease off their symptoms. Do you use distilled water, reagular tap water, or a saline solution? My specialist seemed puzzled when I asked her this, and said that, in principle, a saline solution is optimal. I currently use distilled water.
runcyclexcski
in
Asthma Community Forum
7 days ago
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Seladelpar update
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
About a month or more ago, I wrote about this upcoming drug's potentially to be the next drug for second line treatment. By that I mean that for some reason someone was not responding to or not able to take Urso. 40% of patients are failed by Urso. Cymabay, the pharma who manufacturers Seladelpar,
DonnaBoll
Administrator
in
PBC Foundation
7 days ago
Asthma
I'm on a high level of medication for my asthma I've been with lung specialist for 5 years, I was diagnosed with asthma in the 90s but it was mild enough for me to continue work, however as the years increased my asthma was starting to become a problem, well anyway now my asthma has become a real problem
I'm on a high level of medication for my asthma I've been with lung specialist for 5 years, I was diagnosed with asthma in the 90s but it was mild enough for me to continue work, however as the years increased my asthma was starting to become a problem, well anyway now my asthma has become a real problem
Happy103
in
Lung Conditions Community Forum
8 days ago
Rheumatologist advices no reduction of prednisolone while adrenal glands not working and has issued emergency hydrocortisone kit
I've had PMR since October 2020 and managed to get down to 2.5mg of prednisolone in February 2023. But after a flare, I had to raise it to 5mg and have been pain-free since then. I started on methotrexate weekly injections (15mg) in December 2023, with the hope of being able to reduce the prednisolone
I've had PMR since October 2020 and managed to get down to 2.5mg of prednisolone in February 2023. But after a flare, I had to raise it to 5mg and have been pain-free since then. I started on methotrexate weekly injections (15mg) in December 2023, with the hope of being able to reduce the prednisolone
harpsichor
in
PMRGCAuk
8 days ago
What if?
I mentioned to you that one of the main premises of the Summit was to think about "what ifs" that we could change about how PBC is perceived and/or treated. One of these suggestions was "
what if
" we could totally eliminate the use of placebos in all clinical trials. Some of you may have participated
I mentioned to you that one of the main premises of the Summit was to think about "what ifs" that we could change about how PBC is perceived and/or treated. One of these suggestions was "
what if
" we could totally eliminate the use of placebos in all clinical trials. Some of you may have participated
DonnaBoll
Administrator
in
PBC Foundation
10 days ago
Experiences with urso, ocaliva and bezafibrate
Hi everyone!I was just curious about your experiences taking a combination of udca, ocaliva 10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!
Hi everyone!I was just curious about your experiences taking a combination of udca, ocaliva 10 mg and bezafibrates. Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys? Thanks for sharing and stay healthy and motivated!
nickey8
in
PBC Foundation
1 month ago
Better Understanding
I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some
I knew and expressed here that I was fearful of crashing this winter as I have since 1995 to varying degrees. I had set a marker of April 01 as a measure. I was successful although I will wait until April 01 to see it in my rear view mirror, and have a celebration although I am already celebrating. Some
WIZARD6787
in
Pernicious Anaemia Society
2 months ago
antihistamines
hi šš» think I need some antihistamines to help my ETD. Iāve been using Sudafed last 2 days because the steroid nasal sprays seem to make my ears sore. I know you can only use them for a few days though. I can literally feel the swelling reducing and then swelling up again. So maybe I need an antihistamine
hi šš» think I need some antihistamines to help my ETD. Iāve been using Sudafed last 2 days because the steroid nasal sprays seem to make my ears sore. I know you can only use them for a few days though. I can literally feel the swelling reducing and then swelling up again. So maybe I need an antihistamine
Lakeshiker
in
Tinnitus UK
2 months ago
steroid nasal sprays
hi everyone, Iāve been using a steroid nasal spray for ETD and I think itās making my ears sore and my T louder š¤ Just wondering if anyone has had similar experiences. My ears get sore and all down the side of my face near my jaw line from my ear to my neck. My right ear registered negative pressure
hi everyone, Iāve been using a steroid nasal spray for ETD and I think itās making my ears sore and my T louder š¤ Just wondering if anyone has had similar experiences. My ears get sore and all down the side of my face near my jaw line from my ear to my neck. My right ear registered negative pressure
Lakeshiker
in
Tinnitus UK
2 months ago
0.9 saline 1 liter IV infusion.
Last year I asked on the forum if anyone knew where I could get a saline infusion. Come to find out that was heretical and not done in the UK. š In the USA there are clinics owned and run by nurses where one can get infusions with or without vitamins of your choice. There are also mobile clinics.
Last year I asked on the forum if anyone knew where I could get a saline infusion. Come to find out that was heretical and not done in the UK. š In the USA there are clinics owned and run by nurses where one can get infusions with or without vitamins of your choice. There are also mobile clinics.
WIZARD6787
in
Pernicious Anaemia Society
2 months ago
Body Temperature Regulation.
How body temperature regulation made it in the symptoms list of the neurological effects of B12 deficiency I have not yet come across. I have experienced body temperature regulation issues my whole life. It results in mild hypothermia. I am well versed in the physicians and nurses understanding of
How body temperature regulation made it in the symptoms list of the neurological effects of B12 deficiency I have not yet come across. I have experienced body temperature regulation issues my whole life. It results in mild hypothermia. I am well versed in the physicians and nurses understanding of
WIZARD6787
in
Pernicious Anaemia Society
2 months ago
9 month old constant runny nose one side
Hi, our baby is nearly 9 months old and since Christmas heās had a constant runny nose - clear snot - on just one side, heās had various coughs and colds due to weather and winter I guess but itās always dripping that side. Heās had antibiotics after Xmas for a cough and āin caseā it was a sinus infection
Hi, our baby is nearly 9 months old and since Christmas heās had a constant runny nose - clear snot - on just one side, heās had various coughs and colds due to weather and winter I guess but itās always dripping that side. Heās had antibiotics after Xmas for a cough and āin caseā it was a sinus infection
PrincessGurn1984
in
Pregnancy and Parenting Support
2 months ago
Another Nebuliser question
Hi - I've been watching tthe discussions about nebulisers. For some time I have thought one might be helpful (COPD severe). My COPD team were fairly unhelpful but the respiritory nurse at my GP surgery as just prescribed some Salbutamol nebules. She is now away on holiday. I have bought myself a portable
Hi - I've been watching tthe discussions about nebulisers. For some time I have thought one might be helpful (COPD severe). My COPD team were fairly unhelpful but the respiritory nurse at my GP surgery as just prescribed some Salbutamol nebules. She is now away on holiday. I have bought myself a portable
Kismet23
in
Lung Conditions Community Forum
2 months ago
Experienced powdered Methylcobalamin users; can you help me please?
I donāt understand the premise of this. I purchased a 40ml vial of powdered Methylcobalamin. It tells me to add 10ml saline. Is this correct? If thereās only 10ml of fluid- surely this is only 10 days supply for daily injecting? I assumed that in a 20ml vial Iād reconstitute to 20ml and 40ml Iād be
I donāt understand the premise of this. I purchased a 40ml vial of powdered Methylcobalamin. It tells me to add 10ml saline. Is this correct? If thereās only 10ml of fluid- surely this is only 10 days supply for daily injecting? I assumed that in a 20ml vial Iād reconstitute to 20ml and 40ml Iād be
dedicatedwife
in
Pernicious Anaemia Society
3 months ago
Sterile injectable Saline
Could anyone advise me where I can purchase sterile injectable saline that will ship to the UK please? Iām struggling. Thank you.
Could anyone advise me where I can purchase sterile injectable saline that will ship to the UK please? Iām struggling. Thank you.
dedicatedwife
in
Pernicious Anaemia Society
3 months ago
Saline scan
Has anyone had a saline scan to check the uterus for scarring? If so, was it painful and what kind of pain relief were you given?
Has anyone had a saline scan to check the uterus for scarring? If so, was it painful and what kind of pain relief were you given?
_Everglow_
in
Fertility Network UK
3 months ago
Egg Donor Transfer
Hi We have selected our egg donor!! We are using frozen eggs currently in the bank at our clinic. Well, they are in their UK branch and we are using a clinic in Dublin, so the the eggs need to be transported over. Prior to transferring, our clinic has recommended me having an Endo Trio test, which
Hi We have selected our egg donor!! We are using frozen eggs currently in the bank at our clinic. Well, they are in their UK branch and we are using a clinic in Dublin, so the the eggs need to be transported over. Prior to transferring, our clinic has recommended me having an Endo Trio test, which
Mrsjaytee
in
Fertility Network UK
3 months ago
Saline nasal rinse and glaucoma
I suffer with allergies and used to use steroid nasal spray. Now I have glaucoma I now know that these sprays are bad news! I've been looking into saline nasal rinse kits as an alternative to help me with the chronic catarrh in my throat but can't see any information about if these are safe to use for
I suffer with allergies and used to use steroid nasal spray. Now I have glaucoma I now know that these sprays are bad news! I've been looking into saline nasal rinse kits as an alternative to help me with the chronic catarrh in my throat but can't see any information about if these are safe to use for
Bonniecat7
in
Glaucoma UK
3 months ago
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