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Mast cell activation syndrome (MCAS)
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There’s no point to this post
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Hi everyone, hope you’re all as well as can be. I’m approximately 3 1/2 years into this PMR. Sometimes it gets me down. I’ve been trying to start Humira for Ankylosing Spondylitis again, but the delivery company have been an absolute NIGHTMARE! It’s been so long since I last took it that I’m wondering
Bramble2000
in
PMRGCAuk
9 months ago
Restless legs
Morning hun. Iv had it for around 20 years iv always managed okBut Last Tuesday it started really bad and its day and night. Drs have given me some tablets for Parkinson they ste Not working. I'm just in the lounge walking all night 1-3 ,hour sleep a night Went to hospital Saturday they done bloods
Morning hun. Iv had it for around 20 years iv always managed okBut Last Tuesday it started really bad and its day and night. Drs have given me some tablets for Parkinson they ste Not working. I'm just in the lounge walking all night 1-3 ,hour sleep a night Went to hospital Saturday they done bloods
Frenhies
in
Restless Legs Syndrome
10 months ago
Antihistamine creams
Hi everyone, I have been blessed to be totally free of RLS using my current meds for over 9 months now ,not so much as a twinge .However last night my RLS was horrendous up and down pacing for hours (we all know the drill).I couldn't think of any reason for it but around 4 o'clock it came to me I had
Hi everyone, I have been blessed to be totally free of RLS using my current meds for over 9 months now ,not so much as a twinge .However last night my RLS was horrendous up and down pacing for hours (we all know the drill).I couldn't think of any reason for it but around 4 o'clock it came to me I had
Pippins2
in
Restless Legs Syndrome
10 months ago
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Been smelling smoke for a week after bonfire.
Constantly smelling smoke when the wind changed direction as I burnt some conifer branches. It's happened before but never continued for this long. Cut my nose hair, tried nasal sprays, irrigation etc; to no effect. Only thing that helps is Olbas oil which counters the stink. Googled it and it came
Constantly smelling smoke when the wind changed direction as I burnt some conifer branches. It's happened before but never continued for this long. Cut my nose hair, tried nasal sprays, irrigation etc; to no effect. Only thing that helps is Olbas oil which counters the stink. Googled it and it came
pffft2017
in
Thyroid UK
1 year ago
"Scientists achieve breakthrough in treating 'neglected' polymyalgia rheumatica" - that's the headline but don't get too excited ...
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
https://www.news-medical.net/news/20231025/Scientists-achieve-breakthrough-in-treating-neglected-polymyalgia-rheumatica.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=rheumatology_newsletter_3_november_2023 The study is using sarilumab, aka Kevzara - not the first study, I'm sure
PMRpro
Ambassador
in
PMRGCAuk
9 months ago
THC Gummies
THC gummies worked for the first couple of times but, last time I took it I was super paranoid and definitely not sleeping. It’s not for me . To date, I’m taking one Pramipexole and one 12.5 ambien day night and sleep 4-5 hours and experience mild to no symptoms the following day. So far so good
THC gummies worked for the first couple of times but, last time I took it I was super paranoid and definitely not sleeping. It’s not for me . To date, I’m taking one Pramipexole and one 12.5 ambien day night and sleep 4-5 hours and experience mild to no symptoms the following day. So far so good
tuckerdog109
in
Restless Legs Syndrome
10 months ago
Success with clonidine as a supplementary medication
Sharing some recent success. I have taken pregabalin 300mg for a number of years but have also supplemented it with a very small dose of clonazepam (between 0.125 and 0.5m) I started weaning off clonazepam approx 3 months ago because it's not desirable to take benzodiazepines long term (i'm weaning
Sharing some recent success. I have taken pregabalin 300mg for a number of years but have also supplemented it with a very small dose of clonazepam (between 0.125 and 0.5m) I started weaning off clonazepam approx 3 months ago because it's not desirable to take benzodiazepines long term (i'm weaning
Hidden
in
Restless Legs Syndrome
10 months ago
THC/CBD/CBN
Has anyone used THC,CBD,CBN for restless leg or insomnia. I am just starting to try in hopes to either get off of the drugs I am on for RLS/Insomnia which are low dose pregabalin and klonopin. Just curious about peoples experience and whether there are any benefits.
Has anyone used THC,CBD,CBN for restless leg or insomnia. I am just starting to try in hopes to either get off of the drugs I am on for RLS/Insomnia which are low dose pregabalin and klonopin. Just curious about peoples experience and whether there are any benefits.
Thyroid2468
in
Restless Legs Syndrome
10 months ago
Doctors now talking Buprenorphine
https://www.medscape.com/viewarticle/994959?ecd=wnl_infocu1_broad_broad_persoexpansion-both_20230916_etid5859143&uac=370159DG&impID=5859143 I so hope this link works regarding Dr Beckers use of Buprenorphine for chronic pain. Remember when you are trying to get Bup or medical CBD or THC the word is
https://www.medscape.com/viewarticle/994959?ecd=wnl_infocu1_broad_broad_persoexpansion-both_20230916_etid5859143&uac=370159DG&impID=5859143 I so hope this link works regarding Dr Beckers use of Buprenorphine for chronic pain. Remember when you are trying to get Bup or medical CBD or THC the word is
Shumbah
in
Restless Legs Syndrome
10 months ago
Round in circles
Hi everyone,I'm still having severe anxiety and panic attacks,still having horrible withdrawal symptoms from going off Pregabalin which never helped me in any way.anyway ,please don't judge me too harshly BUT I am taking a low dose of Pramipexole 🙏,it's the only thing that has given me relief from the
Hi everyone,I'm still having severe anxiety and panic attacks,still having horrible withdrawal symptoms from going off Pregabalin which never helped me in any way.anyway ,please don't judge me too harshly BUT I am taking a low dose of Pramipexole 🙏,it's the only thing that has given me relief from the
Whymelord
in
Restless Legs Syndrome
10 months ago
Ablate or wait?
About 1 year ago I suffered with recurrent AF episodes usually overnight and they lasted from 1 hour to 5 hours. On two occasions I went to A&E and was kept in A&E overnight. I got a consultant appointment and he prescribed Flecainide 100mg twice per day and a spot on the NHS ablation waiting list.
About 1 year ago I suffered with recurrent AF episodes usually overnight and they lasted from 1 hour to 5 hours. On two occasions I went to A&E and was kept in A&E overnight. I got a consultant appointment and he prescribed Flecainide 100mg twice per day and a spot on the NHS ablation waiting list.
Jazzguitar22
in
AF Association
10 months ago
Gabapentin
have been on Gabapentin on and off for approximately 6 months, I’ve tried to keep the dose as low as possible. I started on 100 mg before I went to bed this seemed to work with me only waking up once. It then got worse and I now suffer with pain across my shoulders at night aswell as in my legs, I upped
have been on Gabapentin on and off for approximately 6 months, I’ve tried to keep the dose as low as possible. I started on 100 mg before I went to bed this seemed to work with me only waking up once. It then got worse and I now suffer with pain across my shoulders at night aswell as in my legs, I upped
Catbennie
in
Restless Legs Syndrome
10 months ago
Switching from Gabapentin to Horizant?
I'm currently taking 2400mg of Gabapentin, for my PLMs, and gradually reducing..my plan is to switch to Horizant/Gabapentin enacarbil. Does anyone know how much Gabapentin I need to be taking, in order to switch to 600mg of Horizant? I'm looking for a website that will give me this specific info
I'm currently taking 2400mg of Gabapentin, for my PLMs, and gradually reducing..my plan is to switch to Horizant/Gabapentin enacarbil. Does anyone know how much Gabapentin I need to be taking, in order to switch to 600mg of Horizant? I'm looking for a website that will give me this specific info
pianoplayerPLMD
in
Restless Legs Syndrome
8 months ago
Augmentation
So , I have been withdrawing off Ropinirole for months and getting closer to the finishing line . At the mo im taking Tramadol , Dipyridamole , Gabapentin and Clonazepan to help .When Ive taken my last Ropinirole then what do I take?Do I need a complete break off everything for a while or not?
So , I have been withdrawing off Ropinirole for months and getting closer to the finishing line . At the mo im taking Tramadol , Dipyridamole , Gabapentin and Clonazepan to help .When Ive taken my last Ropinirole then what do I take?Do I need a complete break off everything for a while or not?
Huntingleroy
in
Restless Legs Syndrome
10 months ago
Buprenorphine SL vs transdermal
Hi. Can anyone weigh in on their experience or knowledge of the advantages or disadvantages of the different formulations of buprenorphine? I understand there is a risk of severe tooth decay with the sublingual formulation but is that only in the drug-addicted population? Has anyone had personal experience
Hi. Can anyone weigh in on their experience or knowledge of the advantages or disadvantages of the different formulations of buprenorphine? I understand there is a risk of severe tooth decay with the sublingual formulation but is that only in the drug-addicted population? Has anyone had personal experience
Doctorplacebo
in
Restless Legs Syndrome
10 months ago
choosing between Create or Kings for over 40s low AMH low morphology need help with wobble
hi everyone I am new here and have found your posts super useful. I am still on the wobble whether to even start IVF at all as I know myself I am the personality of if I start it I’ll likely not want to get off it until 6 cycles which would be hugely devastating going through all the let downs ! we
hi everyone I am new here and have found your posts super useful. I am still on the wobble whether to even start IVF at all as I know myself I am the personality of if I start it I’ll likely not want to get off it until 6 cycles which would be hugely devastating going through all the let downs ! we
RarePlant
in
Fertility Network UK
1 year ago
Euthyroid Sick Syndrome
Hi everyone, Just wondering if anyone has been diagnosed with Euthyroid Sick Syndrome or thinks they may have it? I am now beginning to think that my problems are due to this and not Hypothyroidism. Am thinking of getting a reverse T3 test but it's quite expensive.This cannot be treated with meds so
Hi everyone, Just wondering if anyone has been diagnosed with Euthyroid Sick Syndrome or thinks they may have it? I am now beginning to think that my problems are due to this and not Hypothyroidism. Am thinking of getting a reverse T3 test but it's quite expensive.This cannot be treated with meds so
Sooty101
in
Thyroid UK
10 months ago
Restless Pain syndrom
I never knew how little information and interest there was about RLS until I found this site. I mean rls has very severe pain and as a result I use to loose sleep every single night and had to try and catch up the following day. With a family and job that is impossible to. I went to a sleep study
I never knew how little information and interest there was about RLS until I found this site. I mean rls has very severe pain and as a result I use to loose sleep every single night and had to try and catch up the following day. With a family and job that is impossible to. I went to a sleep study
shaughnna
in
Restless Legs Syndrome
10 months ago
Pain spec letter
This is what the pain specialist sent to my dr when I asked about subutex for restless legs and nerve pain.....I have very severe restless legs and heard thus was good for it. I'm just speechless....all i was on was 200mcgs of buprenorphine and the targin 5mgs twice a day.
This is what the pain specialist sent to my dr when I asked about subutex for restless legs and nerve pain.....I have very severe restless legs and heard thus was good for it. I'm just speechless....all i was on was 200mcgs of buprenorphine and the targin 5mgs twice a day.
Hidden
in
Restless Legs Syndrome
10 months ago
opioid not working at all
Hi, I’m after some advice after years of Ropinirole use I have recently changed to Shortec 5mg Oxycodone. I have slowly increased the amount to the maximum recommended of 20mg per night which I take an hour before bed. Two months in I have never been so exhausted, I’m regularly falling asleep from
Hi, I’m after some advice after years of Ropinirole use I have recently changed to Shortec 5mg Oxycodone. I have slowly increased the amount to the maximum recommended of 20mg per night which I take an hour before bed. Two months in I have never been so exhausted, I’m regularly falling asleep from
Allatonce
in
Restless Legs Syndrome
10 months ago
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