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Mast cell activation syndrome (MCAS)
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Moving on from a Tracheostomy
Sorry - another question from me. As it was a slightly different topic, I thought I'd start a new thread. My dad has had a trachy now for just over two weeks, following two weeks fully sedated on a ventilator due to pneumonia. He is much improved and breathing unaided for 36 hours so far. He is also
Sorry - another question from me. As it was a slightly different topic, I thought I'd start a new thread. My dad has had a trachy now for just over two weeks, following two weeks fully sedated on a ventilator due to pneumonia. He is much improved and breathing unaided for 36 hours so far. He is also
Pookyal
in
ICUsteps
1 year ago
RLS - Suboxone - PLMD
I have had RLS for years. Last year I weaned off ropinirole. In doing so, the doctor prescribed opioids. When I started Suboxone, I developed PLMD. Has anyone had this happen with Suboxone? Did nothave PLM before.
I have had RLS for years. Last year I weaned off ropinirole. In doing so, the doctor prescribed opioids. When I started Suboxone, I developed PLMD. Has anyone had this happen with Suboxone? Did nothave PLM before.
DogBella
in
Restless Legs Syndrome
1 year ago
Fantastic Book for PMR and GCA
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who
Andymegv
in
PMRGCAuk
1 year ago
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Weaning off Ropinirole
I am currently in the process of Ropinirole withdrawal. I was on 3mg per day having started on .5mg. My legs had started to play up as early as 11am in the morning, and I guess I was augmenting. My GP has put on Gabapentin 200mg at night and am reducing the Ropinirole by 0.25 each week. At the
I am currently in the process of Ropinirole withdrawal. I was on 3mg per day having started on .5mg. My legs had started to play up as early as 11am in the morning, and I guess I was augmenting. My GP has put on Gabapentin 200mg at night and am reducing the Ropinirole by 0.25 each week. At the
mickeyrose
in
Restless Legs Syndrome
1 year ago
Lactobacillus reuteri , Mucuna Pruriens , and magnesium malate to treat RLS
Hello, Newbie to the forum wondering if Mucuna Pruriens is used by people on this forum? Magnesium Malate , which helps the iron cross the BBB? And Lactobacillus Reuteri? (Recommended for RLS by Dr. Will Davis)
Hello, Newbie to the forum wondering if Mucuna Pruriens is used by people on this forum? Magnesium Malate , which helps the iron cross the BBB? And Lactobacillus Reuteri? (Recommended for RLS by Dr. Will Davis)
Little_apple
in
Restless Legs Syndrome
1 year ago
Hello. I’m new here.
Hello RLS forum. I’m new here. I’m already learning a lot from reading your posts and responses. I could quickly tell that it is mostly women on this forum. It is a kinder and gentler place than the Parkinson’s forum with predominately older men. What a relief! I have anxiety which is greatly worsened
Hello RLS forum. I’m new here. I’m already learning a lot from reading your posts and responses. I could quickly tell that it is mostly women on this forum. It is a kinder and gentler place than the Parkinson’s forum with predominately older men. What a relief! I have anxiety which is greatly worsened
Little_apple
in
Restless Legs Syndrome
1 year ago
Milk thistle - anything to be aware of?
A recent blood panel came back with slightly raised liver enzymes (marginally above the range), for reasons I am looking into. I have read about the benefits of milk thistle supplementation with respect to helping with both liver and thyroid matters. On the whole, the consensus seems to be that it
A recent blood panel came back with slightly raised liver enzymes (marginally above the range), for reasons I am looking into. I have read about the benefits of milk thistle supplementation with respect to helping with both liver and thyroid matters. On the whole, the consensus seems to be that it
JonnyA
in
Thyroid UK
1 year ago
PMR News from Med page 1.10.23
Rheumatology > General Rheumatology JAK Inhibitor Promising for Polymyalgia Rheumatica — Oral drug seen as safer than chronic, high-dose steroids by John Gever, Contributing Writer, MedPage Today January 9, 2023 Share on Facebook. Opens in a new tab or window Share on Twitter. Opens in a new tab or
Rheumatology > General Rheumatology JAK Inhibitor Promising for Polymyalgia Rheumatica — Oral drug seen as safer than chronic, high-dose steroids by John Gever, Contributing Writer, MedPage Today January 9, 2023 Share on Facebook. Opens in a new tab or window Share on Twitter. Opens in a new tab or
JanetGarrettN
in
PMRGCAuk
1 year ago
Can Divine Intervention Change Your Genotype?
Reports of sickle cell cures/genotype change by divine intervention have become too many to ignore. _SICKLE CELL NEWS_ ventured to investigate: and it turned out easier to pass a camel through the eye of a needle than find anyone cured of sickle cell by Faith! https://selar.co/lor8 We interviewed
Reports of sickle cell cures/genotype change by divine intervention have become too many to ignore. _SICKLE CELL NEWS_ ventured to investigate: and it turned out easier to pass a camel through the eye of a needle than find anyone cured of sickle cell by Faith! https://selar.co/lor8 We interviewed
sicklecellnews
in
Sickle Cell Society
1 year ago
Steroid sparing agents
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with
Janeval
in
PMRGCAuk
1 year ago
Hypermobility/HEDS recommendation?
Hi there. Thanks for taking the time to read my post. I posted on the EDS forum but it’s not very active and no response yet. I have recently been diagnosed with PoTs and have fibromyalgia and erythromelalgia. I’m in the watch and wait category I believe for auto immune inc lupus but at my recent autonomics
Hi there. Thanks for taking the time to read my post. I posted on the EDS forum but it’s not very active and no response yet. I have recently been diagnosed with PoTs and have fibromyalgia and erythromelalgia. I’m in the watch and wait category I believe for auto immune inc lupus but at my recent autonomics
Winter_night
in
LUPUS UK
1 year ago
struggling with feelings when people announce pregnancy
Me and my partner have been trying for over a year. We are at the stage where we have been referred to a fertility specialist and waiting blood tests and sperm analysis results. Everytime someone I am close to announces they are pregnant I take it really bad which my partner doesn’t understand why. One
Me and my partner have been trying for over a year. We are at the stage where we have been referred to a fertility specialist and waiting blood tests and sperm analysis results. Everytime someone I am close to announces they are pregnant I take it really bad which my partner doesn’t understand why. One
Watsy
in
Fertility Network UK
1 year ago
Recommendations for an EDS specialist in London?
Hi there. Thanks for taking the time to read my post. I have recently been diagnosed with PoTs and I also have fibromyalgia and erythromelalgia. At my recent autonomics appointment my hyperflexible joints were mentioned and I was asked if I'd been assessed for hypermobile EDS. I would like to find someone
Hi there. Thanks for taking the time to read my post. I have recently been diagnosed with PoTs and I also have fibromyalgia and erythromelalgia. At my recent autonomics appointment my hyperflexible joints were mentioned and I was asked if I'd been assessed for hypermobile EDS. I would like to find someone
Winter_night
in
Ehlers-Danlos Support UK
1 year ago
Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after hematopoietic stem cell transplant (HSCT), according to results of a study published in the Blood. “TP53 mutations have been associated with poor
PhysAssist
in
MPN Voice
1 year ago
recommendations for high cholesterol med please
I stopped taking my cholesterol meds in November, just tested again and it's now 371. For RLS I'm now on gabapentin (100mg) and .5mg requip (need to transition off). My RLS is the best it's been in years! However, my doc wants me to continue to take the pravastatin (80mg) for the high cholesterol
I stopped taking my cholesterol meds in November, just tested again and it's now 371. For RLS I'm now on gabapentin (100mg) and .5mg requip (need to transition off). My RLS is the best it's been in years! However, my doc wants me to continue to take the pravastatin (80mg) for the high cholesterol
RLSNona
in
Restless Legs Syndrome
1 year ago
Collagen
Hello all. I've been puzzled by one question for a while already... When looking to buy face cream for example I keep stumbling across wrinkle-reducing skin care products which promise great results through the use of added collagen. Having scleroderma, which is essentially an overproduction of collagen
Hello all. I've been puzzled by one question for a while already... When looking to buy face cream for example I keep stumbling across wrinkle-reducing skin care products which promise great results through the use of added collagen. Having scleroderma, which is essentially an overproduction of collagen
hunkyd0ry
in
Scleroderma & Raynaud's UK (SRUK)
1 year ago
While I remember….
While I was sharing a four bay ward post hip replacement, two ladies - who had a total knee replacement and the other a half knee replacement - told me that although, like me, they had a spinal block plus sedation they both could hear the sawing and hammering and what the surgeons were saying…. but
While I was sharing a four bay ward post hip replacement, two ladies - who had a total knee replacement and the other a half knee replacement - told me that although, like me, they had a spinal block plus sedation they both could hear the sawing and hammering and what the surgeons were saying…. but
JGBH
in
NRAS
1 year ago
Getting older with ss
I'm in my 40's now and I have fewer pain crisis then I had when I was younger. You'd think things would get easier because of this but it isn't. Now I'm dealing with a lot of health problems that sickle cell caused or exacerbated. Like heart problems (which I take meds for), a bad hip (which I had replaced
I'm in my 40's now and I have fewer pain crisis then I had when I was younger. You'd think things would get easier because of this but it isn't. Now I'm dealing with a lot of health problems that sickle cell caused or exacerbated. Like heart problems (which I take meds for), a bad hip (which I had replaced
SociallyUrban
in
Sickle Cell Society
1 year ago
RLS and antidepressants
I’d be grateful for advice on this, as I feel I would benefit from an antidepressant. I’ve had RLS for decades, getting gradually more of a nuisance in the last 10 years or so, and have taken Codeine 30mg for several years, which helps to an extent, sometimes! I know antidepressants make RLS worse. I
I’d be grateful for advice on this, as I feel I would benefit from an antidepressant. I’ve had RLS for decades, getting gradually more of a nuisance in the last 10 years or so, and have taken Codeine 30mg for several years, which helps to an extent, sometimes! I know antidepressants make RLS worse. I
Embroiderer
in
Restless Legs Syndrome
1 year ago
Bone marrow transplant possibility and leriglitazone update
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
An update to which I had previously posted; ,I went to London and met Doctor Robin Lachmann. He is going to start me on the drug soon then I will need to go bk to London after being on it for 4 weeks so they can tweak the dosage. He views this more of a temporary solution though and I think has concerns
JShough
in
AMN EASIER
1 year ago
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