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Mast cell activation syndrome (MCAS)
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Should we worry?
mum is on large doses of lactulose and diuretics and has been feeling very unwell all day. She hasn’t been able to open her Bowles at all, and seems very confused. is this an A&E job?
mum is on large doses of lactulose and diuretics and has been feeling very unwell all day. She hasn’t been able to open her Bowles at all, and seems very confused. is this an A&E job?
PerpetuallySad
in
British Liver Trust
7 months ago
Charity request for help: GCA patients in England
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Dear members with GCA, as you may be aware, NICE and NHS England don't currently allow repeat treatment with tocilizumab for GCA patients who relapse. This means that if you live in England and you've had a year's treatment with tocilizumab, you won't be prescribed it again. However, a recent study
Fran_Benson
Partner
in
PMRGCAuk
7 months ago
biochemical recurrence after RP. +post leukemia
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
junkwerc
in
Prostate Cancer Network
5 months ago
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Please forgive me if I am totally wrong as I have had zero sleep for two nights now. I was put on Pramipexole (i think that is what it is called) but when I needed to increase the dose to four a night I was unable to sleep due to insomnia, so two days ago I started taking Ropinirole which feels like
Please forgive me if I am totally wrong as I have had zero sleep for two nights now. I was put on Pramipexole (i think that is what it is called) but when I needed to increase the dose to four a night I was unable to sleep due to insomnia, so two days ago I started taking Ropinirole which feels like
Gardeninglover8
in
Restless Legs Syndrome
9 months ago
Pramipexole RLS symptoms worse
Just started taking Pramipexole for RLS for the first night. Wow, didn’t know the symptoms would become totally overwhelming all over body too.is this normal, does it settle down? I have Fibromyalgia, which means I also take Duloxetine for the pain and am medication sensitive, but never thought it would
Just started taking Pramipexole for RLS for the first night. Wow, didn’t know the symptoms would become totally overwhelming all over body too.is this normal, does it settle down? I have Fibromyalgia, which means I also take Duloxetine for the pain and am medication sensitive, but never thought it would
Fra3021
in
Restless Legs Syndrome
9 months ago
High BLood Pressure, Kidney failure, cause discovered
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
phebamom
in
High Blood Pressure Support
5 months ago
Buprenorphine / Gloucestershire or nearish
Does anyone living in Gloucestershire Uk know of a Dr / Neurologist that is happy to prescribe Buprenorphine for Ropinirole withdrawal ? My Gp wont . Neurologist in Bath will but has ignored last 5 emails and found a neurologist in Wales who also wont . Grateful for any suggestions . Thanks in advance
Does anyone living in Gloucestershire Uk know of a Dr / Neurologist that is happy to prescribe Buprenorphine for Ropinirole withdrawal ? My Gp wont . Neurologist in Bath will but has ignored last 5 emails and found a neurologist in Wales who also wont . Grateful for any suggestions . Thanks in advance
Huntingleroy
in
Restless Legs Syndrome
9 months ago
help left with the word autism
my grandson before he finished school is 8 and my son has been told he may be autistic. And then well nothing . Hes now developing tics and unusual facial movements . My son and my grandsons mother went to see the gp for advice on how to support my grandson. He told them to just keep an eye on him ??
my grandson before he finished school is 8 and my son has been told he may be autistic. And then well nothing . Hes now developing tics and unusual facial movements . My son and my grandsons mother went to see the gp for advice on how to support my grandson. He told them to just keep an eye on him ??
Noidea1812
in
Autism Support
11 months ago
HCG level blip?
Hello I’m wondering if anyone can ease my anxiety at all. My HCG levels have been as follows: 12dp3dt- 580 13dp3dt - 847 15dp3dt- 1761 18dp3dt - 5463 20dp3t - 9075 My clinic have said they’re generally looking good but I didn’t double between 18dpt and 20dpt and so they’ve put me back on a steroid
Hello I’m wondering if anyone can ease my anxiety at all. My HCG levels have been as follows: 12dp3dt- 580 13dp3dt - 847 15dp3dt- 1761 18dp3dt - 5463 20dp3t - 9075 My clinic have said they’re generally looking good but I didn’t double between 18dpt and 20dpt and so they’ve put me back on a steroid
Siothew12
in
Fertility Network UK
11 months ago
Good sats - so why so breathless?
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
Timberman
in
Lung Conditions Community Forum
5 months ago
RLS returned after taking Duloxetine
Had RLS for many years, associated with Fibromyalgia. Having taken Amitriptylene, Nortriptyline , Pregabalin for my Fibro, my RLS has been under control. Recently started taking Duloxetine to help my Fibro and my RLS has returned with a vengeance. I get very little sleep, as soon as my head hits pillow
Had RLS for many years, associated with Fibromyalgia. Having taken Amitriptylene, Nortriptyline , Pregabalin for my Fibro, my RLS has been under control. Recently started taking Duloxetine to help my Fibro and my RLS has returned with a vengeance. I get very little sleep, as soon as my head hits pillow
Fra3021
in
Restless Legs Syndrome
9 months ago
my results today
Hi everyone, From the Thyroid clinic uk My results are as follows, I am confused now as to what is causing my awful symptoms. TSH 2.34 range 0.27 - 4.2 Free T3 3.9 range 3.1 - 6.8 FT4 15.7 range 12 -22 TPA <9 range 0 - 34 Folate serum 37.4 range 8.83 - 60.8 B12 792 range 145 - 769 (HIGH)
Hi everyone, From the Thyroid clinic uk My results are as follows, I am confused now as to what is causing my awful symptoms. TSH 2.34 range 0.27 - 4.2 Free T3 3.9 range 3.1 - 6.8 FT4 15.7 range 12 -22 TPA <9 range 0 - 34 Folate serum 37.4 range 8.83 - 60.8 B12 792 range 145 - 769 (HIGH)
FoxyTed
in
Thyroid UK
8 months ago
switching meds
I have really bad RLS. I took pramiprexole and had every side effect. I went through augmentation and went through horrible withdrawal. I did try gabapentin when I was on the DAs and felt super doped up in the morning. I ended up stopping taking it. After I got of the DAs I tried without meds hoping
I have really bad RLS. I took pramiprexole and had every side effect. I went through augmentation and went through horrible withdrawal. I did try gabapentin when I was on the DAs and felt super doped up in the morning. I ended up stopping taking it. After I got of the DAs I tried without meds hoping
senders
in
Restless Legs Syndrome
9 months ago
40 years of RLS
I started with RLS about 40 years ago. Over the past 15 years, it has been diagnosed as severe.I have tried all of the dopamine drugs, none worked except for pramipexol, I have augmented and spent the past year still trying to get off this. I am under a sleep specialist and on 50mg of oxycodone per
I started with RLS about 40 years ago. Over the past 15 years, it has been diagnosed as severe.I have tried all of the dopamine drugs, none worked except for pramipexol, I have augmented and spent the past year still trying to get off this. I am under a sleep specialist and on 50mg of oxycodone per
Trish8433
in
Restless Legs Syndrome
9 months ago
Time flies... when you're having babies!
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 months ago
One year stem cell transplant anniversary
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
Scaredy_cat
in
MPN Voice
6 months ago
New research: Aripiprazole, a Novel Option in the Management of Restless Legs Syndrome (2023)
A new paper reporting a small case series of 4 patients who got relief from low dose aripiprazole (abilify ) after augmentation that was resistant to other treatment. https://pubmed.ncbi.nlm.nih.gov/37818170/ Does anyone have any experience with aripiprazole? I took it long ago, before I was even
A new paper reporting a small case series of 4 patients who got relief from low dose aripiprazole (abilify ) after augmentation that was resistant to other treatment. https://pubmed.ncbi.nlm.nih.gov/37818170/ Does anyone have any experience with aripiprazole? I took it long ago, before I was even
Avart
in
Restless Legs Syndrome
9 months ago
removal of rheumatoid nodule
I am due to have a nodule removed from my thumb next month under local anaesthetic. Does anyone know if I have to stop my idacio jab and if so for how long before and after? I am having trouble contacting my advise team!
I am due to have a nodule removed from my thumb next month under local anaesthetic. Does anyone know if I have to stop my idacio jab and if so for how long before and after? I am having trouble contacting my advise team!
Zip1
in
NRAS
11 months ago
How often to Self Inject
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
Hello all. I was just wondering what you all think about how often we should inject with Vit B12. I had been taking shots since about last Dec of 22, but even though it helped, didn't help much. So after finally being diagnosed with PA, I told my wife to inject me every day for 30 days to sort of give
MrJustatip
in
Pernicious Anaemia Society
9 months ago
Mirena coil
My mirena coil came out anyone else this happened to? It only lasted two days and I had it under general anaesthesia. I'm annoyed now 😤 I didn't see it come out. I have endometrium hyperplasia anyone else with this?
My mirena coil came out anyone else this happened to? It only lasted two days and I had it under general anaesthesia. I'm annoyed now 😤 I didn't see it come out. I have endometrium hyperplasia anyone else with this?
Hidden
in
Endometriosis UK
7 months ago
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