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Mast cell activation syndrome (MCAS)
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Flare
PMR, FIBRO, GCA I went down from 2mg Rayos (Prednisone) to 1mg Rayos. Wow...burning pain in buttocks, painful stiff hips, mood swings, extreme fatigue. I went back up to 2mg Rayos. Everything has gotten better except for extreme fatigue. So frustrating...now I am back to chair yoga trying to improve
PMR, FIBRO, GCA I went down from 2mg Rayos (Prednisone) to 1mg Rayos. Wow...burning pain in buttocks, painful stiff hips, mood swings, extreme fatigue. I went back up to 2mg Rayos. Everything has gotten better except for extreme fatigue. So frustrating...now I am back to chair yoga trying to improve
Dream21
in
PMRGCAuk
5 years ago
Advice please
Hi everyone , sorry not been here a while again , but been feeling absolutely dreadful with symptoms still . Have got results from last blood test from medichecks. CRP HS 3.22mg/L range <5 FERRITIN 117 ug/L range 13 - 150 FOLATE 9.86 ug /L range > 3.89 VIT
Hi everyone , sorry not been here a while again , but been feeling absolutely dreadful with symptoms still . Have got results from last blood test from medichecks. CRP HS 3.22mg/L range <5 FERRITIN 117 ug/L range 13 - 150 FOLATE 9.86 ug /L range > 3.89 VIT
Sweetpea1157
in
Thyroid UK
5 years ago
Garlic and whole wheat bread are helpful
I noticed that my wife's spaghetti sauce seemed to help my RLS. After a few weeks I realized that it was the garlic in the sauce that seems to make a difference. Garlic alone will not get me safely through the night, but when combined with 24mg of codeine, 1.5mg of ropinirole, and 200mg of gapapentin
I noticed that my wife's spaghetti sauce seemed to help my RLS. After a few weeks I realized that it was the garlic in the sauce that seems to make a difference. Garlic alone will not get me safely through the night, but when combined with 24mg of codeine, 1.5mg of ropinirole, and 200mg of gapapentin
davidadill
in
Restless Legs Syndrome
5 years ago
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Magnesium supplement for RLS
I have a couple of questions regarding the above: My functional doctor recommended Magnesium Malate at bedtime for RLS, however, I have seen a few comments on here saying that it shouldn't be taken within 2 hours of medications for RLS (I currently take ropinirole and gabapentin) and I take these between
I have a couple of questions regarding the above: My functional doctor recommended Magnesium Malate at bedtime for RLS, however, I have seen a few comments on here saying that it shouldn't be taken within 2 hours of medications for RLS (I currently take ropinirole and gabapentin) and I take these between
YodaDog
in
Restless Legs Syndrome
5 years ago
Troponin levels elevated
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Hi all. I am new here and might need guidance where to post. My back ground is... diagnosed with leukaemia last year, had aggressive chemo and a stem cell transplant. Today I saw a cardiology doctor... which Is why I am now posting here. My heart has aged due to my treatment. Echo heart test was ok
Jalola
in
British Heart Foundation
5 years ago
Bone Marrow Transplant.
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Hello fam! Im looking for info from anyone who has had a bone marrow transplant! Provided I have a viable doner I’m in line to get one. Not going to lie I’ve got all types of mixed emotions! The tough part is being told this procedure will take 3 months to complete. I will have to travel to Boston
Seifert_09
in
AMN EASIER
5 years ago
Parents Advisory Board
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
So many factors no answers
I started with symptoms of RLS when I was pregnant with my daughter, but thought it was due to being off work where I was on my feet 50-60 hours a week. It went away for years and slowly came back over the next few years. I was finally diagnosed in 2004 and put on ropinirole. Boy did that help. but then
I started with symptoms of RLS when I was pregnant with my daughter, but thought it was due to being off work where I was on my feet 50-60 hours a week. It went away for years and slowly came back over the next few years. I was finally diagnosed in 2004 and put on ropinirole. Boy did that help. but then
crazylegs1963
in
Restless Legs Syndrome
5 years ago
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tiss
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tissue Disease. She suffered over two years before being prescribed LDN (Low Dose Naltrexone). Her quality of life went from a 2 to 9.5 out of 10. Her latest scans
Mary from the UK describes her combination of problems including Sjögren’s Syndrome, Non-Hodgkins Lymphoma, Lupus, and Mixed Connective Tissue Disease. She suffered over two years before being prescribed LDN (Low Dose Naltrexone). Her quality of life went from a 2 to 9.5 out of 10. Her latest scans
liveurlife
Volunteer
in
LDN Research Trust
5 years ago
Prolia medication or Similar and dental treatment
Prolia: I broke a tooth last week and my Dentist said the tooth needs to come out but he didn't want the responsability if the gum didn't heal due to me having prolia injections. I checked with my GP yesterday and she confirmed that they advise not to have any dental work. I have a referral to see an
Prolia: I broke a tooth last week and my Dentist said the tooth needs to come out but he didn't want the responsability if the gum didn't heal due to me having prolia injections. I checked with my GP yesterday and she confirmed that they advise not to have any dental work. I have a referral to see an
Angels-delight
in
NRAS
5 years ago
Update on previous post but cannot find it 🙄
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Update MRI shows no new stroke so going with a flare up of gca. Back up to 20 mg pred daily and feeling loads better. My consultant is going to start me on tocilizumab soon just waiting for appointment. Weird symptoms for a flare and she's still suspicious of tia but hey as she keeps telling me I'm
Pamela60
in
PMRGCAuk
5 years ago
Just checking in my fellow IVF peeps
I am currently on day 4 of 50units of Buserelin at the start of the 1st FET cycle. Have to go in for a baseline scan on day 2 of cycle and then probably down to 20 units of Buserelin and patches and GOD knows what else...I haven't got that far....add into the mix, I have been to see a functional medicine
I am currently on day 4 of 50units of Buserelin at the start of the 1st FET cycle. Have to go in for a baseline scan on day 2 of cycle and then probably down to 20 units of Buserelin and patches and GOD knows what else...I haven't got that far....add into the mix, I have been to see a functional medicine
Yammie1973
in
Fertility Network UK
5 years ago
Homeopathic Treatment
Progress Report on my Homeopathic Treatment. I would like to tell you how I am doing now, even though on my first report two month ago I was 'booed' out of the arena by many. I have been on 20 mg Prednison since March of this year and had extreme difficulties reducing. I received lots of advise from
Progress Report on my Homeopathic Treatment. I would like to tell you how I am doing now, even though on my first report two month ago I was 'booed' out of the arena by many. I have been on 20 mg Prednison since March of this year and had extreme difficulties reducing. I received lots of advise from
km5yx7
in
PMRGCAuk
5 years ago
Alendronate Shows Promise as Maintenance Therapy for Osteoporosis
Rheumatology Network Editorial Staff September 24, 2019 The bisphosphonate alendronate (Binosto and Fosamax) can effectively maintain the gains in bone mineral density achieved with a year-long course of denosumab treatment in 91 percent of 126 patients who participated in a randomized clinical trial
Rheumatology Network Editorial Staff September 24, 2019 The bisphosphonate alendronate (Binosto and Fosamax) can effectively maintain the gains in bone mineral density achieved with a year-long course of denosumab treatment in 91 percent of 126 patients who participated in a randomized clinical trial
lupus-support1
Administrator
in
Hughes Syndrome APS Forum
5 years ago
Getting off of Pramipexole
I was on .5 1-2x a day. Augmenting night and day, like being stung by a hundred bees. Got off of Pramipexole by getting 1st off of Tylenol, Ibuprofen, Zantac, Melatonin, all otc sleeping pills, all cold & allergy pills. Also I do take magnesium at night. 1ce a week Eszopiclone for sleep without problem
I was on .5 1-2x a day. Augmenting night and day, like being stung by a hundred bees. Got off of Pramipexole by getting 1st off of Tylenol, Ibuprofen, Zantac, Melatonin, all otc sleeping pills, all cold & allergy pills. Also I do take magnesium at night. 1ce a week Eszopiclone for sleep without problem
Arnida
in
Restless Legs Syndrome
5 years ago
Raising UK EDS-awareness: cause quite a of us 🦓s count a form of hypermobility among our comorbidities
Inquiry into treatment of Ehlers Danlos patients and its comorbidities
Ehlers-Danlos Syndromes (EDS) are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top
Inquiry into treatment of Ehlers Danlos patients and its comorbidities
Ehlers-Danlos Syndromes (EDS) are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top
Barnclown
in
LUPUS UK
5 years ago
Raising EDS awareness in the UK
Inquiry into treatment of Ehlers Danlos patients and its comorbidities
Ehlers-Danlos Syndromes (EDS) are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top
Inquiry into treatment of Ehlers Danlos patients and its comorbidities
Ehlers-Danlos Syndromes (EDS) are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top
Barnclown
in
Ehlers-Danlos Support UK
5 years ago
When will our luck ever change 😔
I apologise in advance for this doom and gloom story but I am sat here now feeling like everything is crumbling in on me and I need to get it out. My husband and I finally got pregnant on our second round of IVF after 3 years. IVF being our only option to get pregnant due to me having both my tubes
I apologise in advance for this doom and gloom story but I am sat here now feeling like everything is crumbling in on me and I need to get it out. My husband and I finally got pregnant on our second round of IVF after 3 years. IVF being our only option to get pregnant due to me having both my tubes
Dotty224
in
Fertility Network UK
5 years ago
Merster here finally with some clarity
I have been fighting rls for 3 yrs now. Sometimes contemplating what kind of soution suicide might be as nothing else was relieving the horrible insomnia and daily pain and nerve sensations it was producing. I was on a low dose pain management drug ms contin until heart surgery in 2015 and thought
I have been fighting rls for 3 yrs now. Sometimes contemplating what kind of soution suicide might be as nothing else was relieving the horrible insomnia and daily pain and nerve sensations it was producing. I was on a low dose pain management drug ms contin until heart surgery in 2015 and thought
Merster
in
Restless Legs Syndrome
5 years ago
Oesophageal Dilatation Questions
Hi all I have Limited cutaneous Systemic Sclerosis and have been experiencing swallowing difficulties, certain foods get stuck in my chest and will only go down with fluids. I am seeing a gastroenterologist on Tuesday about my problems (several at the moment). I’ve read a lot about Oesophageal Dilatation
Hi all I have Limited cutaneous Systemic Sclerosis and have been experiencing swallowing difficulties, certain foods get stuck in my chest and will only go down with fluids. I am seeing a gastroenterologist on Tuesday about my problems (several at the moment). I’ve read a lot about Oesophageal Dilatation
-missymoo
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
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