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Round 50?
Hi all - I've searched the forum trying to figure out the answer to my question but it all seems to vary so much. I am 3 years in on buprenorphine now with RLS being pretty well managed (WOOHOO). I had been struggling to lower that 2mg sublingual dose due to extreme fatigue. I had tried pregablin previous
Hi all - I've searched the forum trying to figure out the answer to my question but it all seems to vary so much. I am 3 years in on buprenorphine now with RLS being pretty well managed (WOOHOO). I had been struggling to lower that 2mg sublingual dose due to extreme fatigue. I had tried pregablin previous
erinjee
in
Restless Legs Syndrome
4 months ago
Pegasys Update 1.0
Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of scintillating scotomas with increasing frequency at almost weekly. Aspirin cut this to approx. 90 days! Over the next three years increasingly struggled with
Finally getting around to sharing my experiences of starting Pegasys. First a little background. Diagnosed with ET JAK2+ in 2019 after a decade of scintillating scotomas with increasing frequency at almost weekly. Aspirin cut this to approx. 90 days! Over the next three years increasingly struggled with
Crossefield
in
MPN Voice
6 months ago
D Mannose
Hello everyone Just wondered if anyone here has used D Mannose tablets to manage recurrent urinary tract infections and if so with what success? I’ve had this problem for a few years now and the Urologist suggested daily low dose antibiotics which I want to avoid. Despite trying all of the self
Hello everyone Just wondered if anyone here has used D Mannose tablets to manage recurrent urinary tract infections and if so with what success? I’ve had this problem for a few years now and the Urologist suggested daily low dose antibiotics which I want to avoid. Despite trying all of the self
RosaD
in
LUPUS UK
6 months ago
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Totally distraught and worried!!!
Hi everyone, I’m so scared. I really need someone to tell me everything will be okay. I keep crying as I’m so distraught this has happened. My husband is amazing but can only do and say so much as this isn’t happening to him. I really need hope right now. I’m soon to be 42 and am 5 months postpartum
Hi everyone, I’m so scared. I really need someone to tell me everything will be okay. I keep crying as I’m so distraught this has happened. My husband is amazing but can only do and say so much as this isn’t happening to him. I really need hope right now. I’m soon to be 42 and am 5 months postpartum
monkee641
in
Pregnancy and Parenting Support
8 months ago
Shingles vaccine
My husband has been called in for a shingles vaccination. Am i correct that he should ask for a non live vaccine as the love vaccine poses a risk to me as I am immune suppressed? I seem to remember hearing this somewhere. Still struggling to get answer fro my nurse advice line. Thanks
My husband has been called in for a shingles vaccination. Am i correct that he should ask for a non live vaccine as the love vaccine poses a risk to me as I am immune suppressed? I seem to remember hearing this somewhere. Still struggling to get answer fro my nurse advice line. Thanks
Gilliancheche
in
NRAS
1 year ago
Covid and Myelofibrosis
hi I’ve just tested positive for Covid, I have post pv Myelofibrosis. I’m waiting on 111 to see whether I need to have some treatment. What are your thoughts and is this necessary now? I think it’s going to be a long wait, so it might be tomorrow. Thank you Mal
hi I’ve just tested positive for Covid, I have post pv Myelofibrosis. I’m waiting on 111 to see whether I need to have some treatment. What are your thoughts and is this necessary now? I think it’s going to be a long wait, so it might be tomorrow. Thank you Mal
Mal42
in
MPN Voice
6 months ago
dont give up the fight against Afib
I have been a member of this forum for some years and learned a few things from its members but up until now i have never posted anything but i thought my story may give some of you people a bit of hope. I first went into afib in 2018 sudenly without any warning my heart rate was 222 and the top line
I have been a member of this forum for some years and learned a few things from its members but up until now i have never posted anything but i thought my story may give some of you people a bit of hope. I first went into afib in 2018 sudenly without any warning my heart rate was 222 and the top line
Dikytiker
in
AF Association
6 months ago
New GCA treatment
Three years since I read everything about PMR and now revisiting everything. Scary. 48 hours since treatment started (60mg) and headaches almost gone and most jaw pain / difficulty gone. Except husband cooked Brussels sprouts which I struggled to eat (usually lovely then). Question: I know steroids
Three years since I read everything about PMR and now revisiting everything. Scary. 48 hours since treatment started (60mg) and headaches almost gone and most jaw pain / difficulty gone. Except husband cooked Brussels sprouts which I struggled to eat (usually lovely then). Question: I know steroids
DogAgilityObsessed
in
PMRGCAuk
8 months ago
Rituximab
Hi all, well after 6 months on hyrimoz and no improvement they want to start me on Rituximab. Does anyone know how long you have to wait before you can start, ie this wash out period were you have nothing?? The steroid injections have worn off again, inflammation crp up again tiredness back and the
Hi all, well after 6 months on hyrimoz and no improvement they want to start me on Rituximab. Does anyone know how long you have to wait before you can start, ie this wash out period were you have nothing?? The steroid injections have worn off again, inflammation crp up again tiredness back and the
Akaka
in
NRAS
6 months ago
DBS on the leg trial
https://parkinsonsnewstoday.com/news/noninvasive-way-deep-brain-stimulation-parkinsons-trial/
https://parkinsonsnewstoday.com/news/noninvasive-way-deep-brain-stimulation-parkinsons-trial/
MARC1
in
Cure Parkinson's
8 months ago
Covid and Party
👋 Party is this coming Sat . I feel OK with going now after people's advice , so thank you all. Got my N95 mask. Will have sanitiser on me all the time . However I am now facing difficulties, flare up in both knees and one hip in agony and lower back , getting in and out of bed , turning in bed
👋 Party is this coming Sat . I feel OK with going now after people's advice , so thank you all. Got my N95 mask. Will have sanitiser on me all the time . However I am now facing difficulties, flare up in both knees and one hip in agony and lower back , getting in and out of bed , turning in bed
Stavrou1
in
CLL Support
6 months ago
persistent oral thrush
I've been on an increased dose of prednisolone since August last year. I've started reducing since January (tried before with a flare-up). I also use a steroid inhaler for asthma (and rinse afterwards). I have frequent problems with oral thrush. Unfortunately the stuff that seemed to work best - the
I've been on an increased dose of prednisolone since August last year. I've started reducing since January (tried before with a flare-up). I also use a steroid inhaler for asthma (and rinse afterwards). I have frequent problems with oral thrush. Unfortunately the stuff that seemed to work best - the
oldtimer2
in
NRAS
4 months ago
latest results, confused, please advise!
My last results a month ago before treatment with 50 mcg were : Serum free t4 level. 10.2 pmo/L TSH level 7.28 IU/mL After a month of Levothyroxine my results are now:- serum free t4 level. 15.6 TSH 2.87 I asked for, and was told my T3 would be checked but I can’t see it on printout unless
My last results a month ago before treatment with 50 mcg were : Serum free t4 level. 10.2 pmo/L TSH level 7.28 IU/mL After a month of Levothyroxine my results are now:- serum free t4 level. 15.6 TSH 2.87 I asked for, and was told my T3 would be checked but I can’t see it on printout unless
Benjipuss
in
Thyroid UK
6 months ago
Will a COVID (or flu) vaccination affect my blood results?
If I have a blood test 3 or 7 days after a COVID (or flu) vaccination - will it affect my blood results? Should I perhaps make the vaccination after the blood test, so that there is no potential issue interpreting my blood results? If the vaccination affects blood results - how many days after the vaccination
If I have a blood test 3 or 7 days after a COVID (or flu) vaccination - will it affect my blood results? Should I perhaps make the vaccination after the blood test, so that there is no potential issue interpreting my blood results? If the vaccination affects blood results - how many days after the vaccination
mantana
in
CLL Support
6 months ago
B12 deficiency
I was diagnosed with a B12 deficiency. I'm recovering from covid it's been 3 weeks. Not sure if the covid knocked my B12 down. I had first injection today. I woke up out of my sleep my body burning and dry month. I had that feeling first week of covid it went away. Now I'm not sure if the B12 is fighting
I was diagnosed with a B12 deficiency. I'm recovering from covid it's been 3 weeks. Not sure if the covid knocked my B12 down. I had first injection today. I woke up out of my sleep my body burning and dry month. I had that feeling first week of covid it went away. Now I'm not sure if the B12 is fighting
Michbell45
in
Pernicious Anaemia Society
6 months ago
Back again!!
I have been on here a few times and Jools and Sue saved my sanity! Other's have also been so kind so, thank you...again! I do have another question which I'm sure Jools and Sue can help me with. The 20 mcg Buprenorphine patch has helped my RLS hugely though I know it's lurking but I can now sleep which
I have been on here a few times and Jools and Sue saved my sanity! Other's have also been so kind so, thank you...again! I do have another question which I'm sure Jools and Sue can help me with. The 20 mcg Buprenorphine patch has helped my RLS hugely though I know it's lurking but I can now sleep which
Danni54
in
Restless Legs Syndrome
4 months ago
update: Zanabrutinib vs Obenven (O&V)
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
We are praying for Gods wisdom (James1:5), and we’re leaning toward the Zanabrutinib. The infusions and time and distance will be impactful to my husbands work and he’s prefer to go the simpler route. We learned he’s still 13Q and TP53 negative and his lymph nodes are reduced (we have used ALT for
Cb1391
in
CLL Support
8 months ago
Current SUPERNOVA Clinical Trial for Reformulated EVUSHELD for preventing COVID-19 infection for immune-impaired individuals
A Phase II sub-study of SUPERNOVA clinical trial (2023) is currently operating to test the efficacy and safety of AZD3152 as a component of a reformulated version of EVUSHELD mAbs prophylaxis for immune-impaired individuals who cannot mount antibody responses to COVID-19 vaccines. Study Understanding
A Phase II sub-study of SUPERNOVA clinical trial (2023) is currently operating to test the efficacy and safety of AZD3152 as a component of a reformulated version of EVUSHELD mAbs prophylaxis for immune-impaired individuals who cannot mount antibody responses to COVID-19 vaccines. Study Understanding
Classicaljazz
in
CLL Support
6 months ago
⭐️⭐️my COVID journey ⭐️⭐️
⭐️covid survivors let’s keep on fighting, let’s help each other & spread awareness of the real impact & life changing difficulties we face❤️❤️ Ladysurvivor1 profile image Ladysurvivor1 2 days ago•0 Replies 🧏🏽♀️My COVID Journey: A Tale of Resilience and Hope (Part 1) In the depths of January
⭐️covid survivors let’s keep on fighting, let’s help each other & spread awareness of the real impact & life changing difficulties we face❤️❤️ Ladysurvivor1 profile image Ladysurvivor1 2 days ago•0 Replies 🧏🏽♀️My COVID Journey: A Tale of Resilience and Hope (Part 1) In the depths of January
Ladysurvivor1
in
ICUsteps
6 months ago
Finally failed at side-stepping the “rona”
Well I guess sooner or later it had to happen. Four years of avoiding covid and now I caught it whilst traveling for work in the Far East. Started with a cold and a general malaise, then a few days later, last night, I had a slight temperature so I thought I’d check (had packed some tests just in
Well I guess sooner or later it had to happen. Four years of avoiding covid and now I caught it whilst traveling for work in the Far East. Started with a cold and a general malaise, then a few days later, last night, I had a slight temperature so I thought I’d check (had packed some tests just in
Aldebaran25
in
MPN Voice
6 months ago
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