Search
Search
About
Log in
Join
Experiences with
Mast cell activation syndrome (MCAS)
Posts
Communities
4,360 public posts
Filter results
RA and live flu vaccine
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
HiMy daughter has rung to say my 2 year old grandson has just had a live flu vaccine. She said the GP has said to avoid people with very compromised immune systems, eg. they said, having bone marrow transplants, for a week. She asked if it was safe for them to see me and was told they had no guidance
Julia31
in
NRAS
7 months ago
Post stem cell transplant vaccinations
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of the hospital.
Platelets2022
in
Leukaemia CARE
7 months ago
A wonderful GP
I started seeing a new GP who started work in my local GP practice just before covid and she has been Marvellous, she's from South Africa and really listens to me and I've told her about the advice I've been getting here and she said that she is going to look further into buprenorphine being used here
I started seeing a new GP who started work in my local GP practice just before covid and she has been Marvellous, she's from South Africa and really listens to me and I've told her about the advice I've been getting here and she said that she is going to look further into buprenorphine being used here
Loopylegs
in
Restless Legs Syndrome
10 months ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
HELP PLEASE
HELP PLEASE -Following your advice, Sue Johnson I have been reducing my Ropinirole and am now down to 1.5 mg. from the original 4 mg. per day. I was in hospital for 2 1/2 days on May2nd for successful bowel cancer surgery and this did not worsen my RLS. However I returned home yesterday after a further
HELP PLEASE -Following your advice, Sue Johnson I have been reducing my Ropinirole and am now down to 1.5 mg. from the original 4 mg. per day. I was in hospital for 2 1/2 days on May2nd for successful bowel cancer surgery and this did not worsen my RLS. However I returned home yesterday after a further
milly-22
in
Restless Legs Syndrome
10 months ago
Methadone adjustment/Horizant
Just started methadone 1.5 mL. I have a lot of trouble with drug side effects. After years on pregabalin more or less successfully treating my PLMD, it started making me nervous/anxious so I tried Tylenol #2 which made me very nervous and now I am trying the methadone. Years ago I tried 5mg of methadone
Just started methadone 1.5 mL. I have a lot of trouble with drug side effects. After years on pregabalin more or less successfully treating my PLMD, it started making me nervous/anxious so I tried Tylenol #2 which made me very nervous and now I am trying the methadone. Years ago I tried 5mg of methadone
wantokporo
in
Restless Legs Syndrome
10 months ago
Sore tongue
Hi folks, is a sore tongue part of UCTD? I've had sore patches (which grow and change shape, and are smooth in the middle) for some years, more on than off. I've assumed it is geographic tongue but that's supposed to be painless from what I've read. I also have a moderately dry mouth and wondering
Hi folks, is a sore tongue part of UCTD? I've had sore patches (which grow and change shape, and are smooth in the middle) for some years, more on than off. I've assumed it is geographic tongue but that's supposed to be painless from what I've read. I also have a moderately dry mouth and wondering
redmaggie
in
LUPUS UK
1 year ago
Buprenorphine and nausea
I will be switching from methadone to buprenorphine. How common is nausea as a side effect? Does it go away over time? My doctor gave me 60 anti-nausea pills, but insurance hasn't approved my switch to buprenorphine yet. Just wondering what to anticipate. I asked to change because of some cognitive
I will be switching from methadone to buprenorphine. How common is nausea as a side effect? Does it go away over time? My doctor gave me 60 anti-nausea pills, but insurance hasn't approved my switch to buprenorphine yet. Just wondering what to anticipate. I asked to change because of some cognitive
ratfancy
in
Restless Legs Syndrome
10 months ago
Long Covid
I have had RLS for decades and have had more help on this site from wonderful people than from any medical person. Currently I take Methadone 15 mg daily which gives me about 5 hours of broken sleep per night. I can live with it as its the best I have had for decades. I wonder if some Marijuana would
I have had RLS for decades and have had more help on this site from wonderful people than from any medical person. Currently I take Methadone 15 mg daily which gives me about 5 hours of broken sleep per night. I can live with it as its the best I have had for decades. I wonder if some Marijuana would
wairoa36
in
Restless Legs Syndrome
11 months ago
Maple Syrup
Does anyone else get RLS from 100% pure Maple Syrup? I mean 100% as stated on the label. I have experienced restlessness quite a few times after having it in a night time soothing drink. It was to replace cheap "pouring honey" which I was trying to replace with a healthier option. Would like to get
Does anyone else get RLS from 100% pure Maple Syrup? I mean 100% as stated on the label. I have experienced restlessness quite a few times after having it in a night time soothing drink. It was to replace cheap "pouring honey" which I was trying to replace with a healthier option. Would like to get
Madlegs1
in
Restless Legs Syndrome
11 months ago
Help!
Hello, everyone, I've an appointment to see my doctor tomorrow and would like to know what strength of buprenorphine helps rls? I'm not doing so good, rls back with a vengeance, had to go back on the hrt gel as I found my rls was way worse after stopping it, I'm crawling all over, day and night since
Hello, everyone, I've an appointment to see my doctor tomorrow and would like to know what strength of buprenorphine helps rls? I'm not doing so good, rls back with a vengeance, had to go back on the hrt gel as I found my rls was way worse after stopping it, I'm crawling all over, day and night since
Loopylegs
in
Restless Legs Syndrome
11 months ago
My Recovery so far post Stem cell Transplant
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the story so far. Thank you to everyone who kindly messaged me to see how I was and apologies for asking so long to respond. I really appreciated
Jm954
Administrator
in
CLL Support
8 months ago
Withdrawals from Pramipexole.
Hi everyone i had been taking one .088mgs pramipexole for approx 3 years plus one or two 8/500 cocodamol at night it’s never been perfect as my tolerance to meds is lowi can’t take high doses. Recently i have had 3 nights and days of meds not working and out this down to the pramipexole and augmentation
Hi everyone i had been taking one .088mgs pramipexole for approx 3 years plus one or two 8/500 cocodamol at night it’s never been perfect as my tolerance to meds is lowi can’t take high doses. Recently i have had 3 nights and days of meds not working and out this down to the pramipexole and augmentation
Hidden
in
Restless Legs Syndrome
11 months ago
APNEA v RLS - something else
I have recently been diagnosed with Sleep Apnea & have been given a CPAP machine to use but it seems the drugs I take for RLS (Oxycodone & Gabapentin) are conflicting with the efficacy of the CPAP kit and not bring down my incidence of AHI during the night. The consultant has asked me to row back
I have recently been diagnosed with Sleep Apnea & have been given a CPAP machine to use but it seems the drugs I take for RLS (Oxycodone & Gabapentin) are conflicting with the efficacy of the CPAP kit and not bring down my incidence of AHI during the night. The consultant has asked me to row back
joepublic
in
Restless Legs Syndrome
11 months ago
Horizant
After pregabalin and gabapentin both made me nervous (I successfully tolerated the pregabalin for years, with daytime sedation however). Codeine also seems to be waking me up instead of sedating me. Doctor is suggesting trying Horizant. I know it is for people who experience symptoms all day, but
After pregabalin and gabapentin both made me nervous (I successfully tolerated the pregabalin for years, with daytime sedation however). Codeine also seems to be waking me up instead of sedating me. Doctor is suggesting trying Horizant. I know it is for people who experience symptoms all day, but
wantokporo
in
Restless Legs Syndrome
11 months ago
Anyone had a coronary sinus reducer?
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
I haven't been on here in a long while. My medical history is pretty complex, I'm seen locally at the Bristol Heart Institute but also under the care of the Cardio-oncology team at the Royal Brompton which a forum member told me about years ago thankfully. Basically my bone marrow transplant and other
SomersetJo
in
British Heart Foundation
8 months ago
ropinerole withdrawal
I have had restless legs for most of my life. The restless legs are out of control now so my GP put me on ropinerole 4 mg a day to begin with and them upped it 8 mg a day. That’s making me have funny feelings, like I’m buzzed or high but I’m not. So I went to a neurologist and he has started taking me
I have had restless legs for most of my life. The restless legs are out of control now so my GP put me on ropinerole 4 mg a day to begin with and them upped it 8 mg a day. That’s making me have funny feelings, like I’m buzzed or high but I’m not. So I went to a neurologist and he has started taking me
wyomingquilter
in
Restless Legs Syndrome
11 months ago
Attitudes to people using opiates
We all have a back story. I know nobody wishes to be thought of as a drug addict. But there may be members with RLS who are recovering drug addicts, or alcoholics trying to get their lives back on track, and needing support from this forum. Its a sensitive are. I hope I haven't offended or upset anyone
We all have a back story. I know nobody wishes to be thought of as a drug addict. But there may be members with RLS who are recovering drug addicts, or alcoholics trying to get their lives back on track, and needing support from this forum. Its a sensitive are. I hope I haven't offended or upset anyone
pennygates
in
Restless Legs Syndrome
11 months ago
Opioid prejudice at the pharmacy
I wonder if other HU members have experienced hostile treatment from the pharmacy, while collecting their opioid medication?At my local chemist, there are a few members of staff who are rude and hostile towards patients who are prescribed opiates. I pick up my prescription every month. When I go in
I wonder if other HU members have experienced hostile treatment from the pharmacy, while collecting their opioid medication?At my local chemist, there are a few members of staff who are rude and hostile towards patients who are prescribed opiates. I pick up my prescription every month. When I go in
pennygates
in
Restless Legs Syndrome
11 months ago
Interesting Tx for OIC
Sorry about the abbreviations. If you have Opioid-Induced Constipation (OIC) you might be interested in this little story. Tx means Treatment. I am currently on low-dose opioid for RLS--buprenorphine, but previously methadone--and I suffer from OIC. I have been taking a variety of laxatives
Sorry about the abbreviations. If you have Opioid-Induced Constipation (OIC) you might be interested in this little story. Tx means Treatment. I am currently on low-dose opioid for RLS--buprenorphine, but previously methadone--and I suffer from OIC. I have been taking a variety of laxatives
Doctorplacebo
in
Restless Legs Syndrome
11 months ago
Restless Legs and Sleeping Tablets?
Tried the usual meds, Ropinirole, Amtriphyline, Pregabalin and Gabapentin - all useless. Having to stop one and gradually increase of the other has been tortuous. Hell. My mental health is suffering with the nightly and now early evening frequent, wired, compulsive urge to move. Also affecting my arm
Tried the usual meds, Ropinirole, Amtriphyline, Pregabalin and Gabapentin - all useless. Having to stop one and gradually increase of the other has been tortuous. Hell. My mental health is suffering with the nightly and now early evening frequent, wired, compulsive urge to move. Also affecting my arm
Springfiel1
in
Restless Legs Syndrome
11 months ago
1
...
19
20
21
...
100
Next page
10
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
Restless Legs Syndrome
1374 results
Fertility Network UK
357 results
Thyroid UK
343 results
View top 10 communities
Sort by
Most Relevant
Newest