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Mast cell activation syndrome (MCAS)
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A bit lost and looking for help
Hello everyone, I am not new here but have not posted before. Firstly, thanks for this great resource I dip in and out all the time. A little background, roughly 6 years ago diagnosed borderline hypo, been taking 50 levo since then with blood test indicating no increase needed. Roll on to last Spring
Hello everyone, I am not new here but have not posted before. Firstly, thanks for this great resource I dip in and out all the time. A little background, roughly 6 years ago diagnosed borderline hypo, been taking 50 levo since then with blood test indicating no increase needed. Roll on to last Spring
Pippydoo
in
Thyroid UK
3 years ago
Venetoclax and Stelara
Hello everyone, hope all is well? Just putting it out there if anyone has been on Venetoclax for their CLL and Stelara for Ulcerative Colitis at the sametime? Or can anyone recommend medication for Ulcerative Colitis while taking Venetoclax?
Hello everyone, hope all is well? Just putting it out there if anyone has been on Venetoclax for their CLL and Stelara for Ulcerative Colitis at the sametime? Or can anyone recommend medication for Ulcerative Colitis while taking Venetoclax?
Driverps1
in
CLL Support
3 years ago
INF+ ATO Study, "A knockout combination for MPN stem cells"
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
Some have likely seen this study. I looked into it some more today and realize it's a neat pre-clinical result. This is just FYI right now but it's an example of potential good things to come. (I just noticed Manouche posted on this last year, anyway maybe some new details here) "JAK2V617F myeloproliferative
EPguy
in
MPN Voice
3 years ago
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Alex TLC Digital Community Weekend
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
Hidden
Partner
in
Leukodystrophy Support
3 years ago
12 week scan. High risk for Edward's and Patau's syndromes. Any positive stories?
Hello, I had my 12 week scan (at 13 weeks) on Monday. The Nuchal Translucency was high 6.4 mm and combined with the blood test our risk of Down Syndrome is low 1:10000 but our risk of Patau's or Edward's is as high as it could be 1:2. I am 37 years old, so I realise I am at increased risk. Has anyone
Hello, I had my 12 week scan (at 13 weeks) on Monday. The Nuchal Translucency was high 6.4 mm and combined with the blood test our risk of Down Syndrome is low 1:10000 but our risk of Patau's or Edward's is as high as it could be 1:2. I am 37 years old, so I realise I am at increased risk. Has anyone
AracLl
in
Fertility Network UK
3 years ago
Gastrointestinal inflammation with PMR
Hi, I am getting rather worried as I have developed gastrointestinal inflammation. I have polymyalgia rheumatica & have been taking prednisolone since Aug 2020 starting at 15mg & now tapered to 6mg. Anyone else haven’t have had the same problem?
Hi, I am getting rather worried as I have developed gastrointestinal inflammation. I have polymyalgia rheumatica & have been taking prednisolone since Aug 2020 starting at 15mg & now tapered to 6mg. Anyone else haven’t have had the same problem?
Hidden
in
PMRGCAuk
3 years ago
New to forum
New here! I get extremely restless achy heavy legs in the evenings particularly if I am tired. The only thing I have found that eases it is going to my bed and lying down. Is this a circulation thing more than restless legs I wonder?
New here! I get extremely restless achy heavy legs in the evenings particularly if I am tired. The only thing I have found that eases it is going to my bed and lying down. Is this a circulation thing more than restless legs I wonder?
Hellsbells12345
in
Restless Legs Syndrome
3 years ago
8+4 Late Dose of Progynova
Hi everyone, I'm currently 8 weeks 4 days pregnant, and due to my incompetent GP surgery mucking up my prescription, I have taken my progynova nearly 6 hours late today. Has anyone else done this before and their pregnancy has continued ok? I contacted my clinic, but their response was "We cannot say
Hi everyone, I'm currently 8 weeks 4 days pregnant, and due to my incompetent GP surgery mucking up my prescription, I have taken my progynova nearly 6 hours late today. Has anyone else done this before and their pregnancy has continued ok? I contacted my clinic, but their response was "We cannot say
JustJennay28
in
Fertility Network UK
3 years ago
Why the moaning about Ropinirole?
Hiya, can I, politely, obviously- ask why people object so much to Ropinerole. For me it is a lifesaver. Literally cannot live without it. I know that I am addicted but so are people to Diet Coke and so on and so forth, there are many other medications with side effects which are necessary to maintain
Hiya, can I, politely, obviously- ask why people object so much to Ropinerole. For me it is a lifesaver. Literally cannot live without it. I know that I am addicted but so are people to Diet Coke and so on and so forth, there are many other medications with side effects which are necessary to maintain
Dane74
in
Restless Legs Syndrome
3 years ago
Are joint hypermobility syndrome and ehlers-danlos syndrome the same?
Question for those of you who might have both fibro and joint hypermobility! I was asked by someone to clarify if I had ehlers-danlos syndrome and wasn't quite sure and Google isn't helping me! A rheumatologist diagnosed me with joint hypermobility ages ago at the same time as fibro and didn't really
Question for those of you who might have both fibro and joint hypermobility! I was asked by someone to clarify if I had ehlers-danlos syndrome and wasn't quite sure and Google isn't helping me! A rheumatologist diagnosed me with joint hypermobility ages ago at the same time as fibro and didn't really
Lizardelle
in
Fibromyalgia Action UK
3 years ago
Intrinsic factor and parietal cell antibody positive but MMA normal is it PA?
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
Aumshantii
in
Pernicious Anaemia Society
3 years ago
Dry ears, eyes etc and Buckthorn Oil Capsules
I came across an article recently for dry eyes, ears etc. Has anyone taken Buckthorn Oil capsules for this? I have just purchased Omega7 which contains [i]Omega 3, 6, 7, 9 and Vit A (beta carotene) which maintains normal structure and function of the skin and mucous membranes, such as the eyes,
I came across an article recently for dry eyes, ears etc. Has anyone taken Buckthorn Oil capsules for this? I have just purchased Omega7 which contains [i]Omega 3, 6, 7, 9 and Vit A (beta carotene) which maintains normal structure and function of the skin and mucous membranes, such as the eyes,
Moggy1234
in
Pernicious Anaemia Society
3 years ago
Not functioning!
Since my last post, I have been trudging the never ending exhaustion and pain of trying to function as best I can. Now my body has decided enough is enough ... it's getting worse. I have had constant stabbing in my right adrenal (2 courses of antibiotics), CT scan of kidney/adrenals/bladder area, and
Since my last post, I have been trudging the never ending exhaustion and pain of trying to function as best I can. Now my body has decided enough is enough ... it's getting worse. I have had constant stabbing in my right adrenal (2 courses of antibiotics), CT scan of kidney/adrenals/bladder area, and
AleB
in
Thyroid UK
3 years ago
Looks like another missed miscarriage
So today I had a private scan at 8+1. Gestational sac was normal. Baby measured 4mm with a rather large yolk sac. The flickering of the heartbeat is visible on the screen but can’t be picked up on the machine. I can already imagine the outcome, I am measuring 2 weeks behind and with IVF it is impossible
So today I had a private scan at 8+1. Gestational sac was normal. Baby measured 4mm with a rather large yolk sac. The flickering of the heartbeat is visible on the screen but can’t be picked up on the machine. I can already imagine the outcome, I am measuring 2 weeks behind and with IVF it is impossible
FrancyItaly
in
Fertility Network UK
3 years ago
ICSI: 6th cycle failed
Hello all fighters, Just received bad news again and again. Today is day 5 and none of embryos made it to blastocyst. Egg collection: 18 and only 9 were MII, unfortunately 3 fertilised and the best we got today is 1 early cavitating grade 2. I’m 42 with AMH 2.4 and FSH around 4 but eggs are of bad quality
Hello all fighters, Just received bad news again and again. Today is day 5 and none of embryos made it to blastocyst. Egg collection: 18 and only 9 were MII, unfortunately 3 fertilised and the best we got today is 1 early cavitating grade 2. I’m 42 with AMH 2.4 and FSH around 4 but eggs are of bad quality
Exclusique
in
Fertility Network UK
3 years ago
Chronic osteomyelitis and systemic sclerosis
Hello everyone!! I have 2 questions related to systemic sclerosis and Raynaud's. 1. Does anyone with systemic sclerosis and Raynaud's phenomenon have a non-healing ulcer and chronic osteomyelitis in their feet? 2. Is there anyone with Raynud's phenomenon and systemic sclerosis who has cold hands and
Hello everyone!! I have 2 questions related to systemic sclerosis and Raynaud's. 1. Does anyone with systemic sclerosis and Raynaud's phenomenon have a non-healing ulcer and chronic osteomyelitis in their feet? 2. Is there anyone with Raynud's phenomenon and systemic sclerosis who has cold hands and
Lo1234
in
Scleroderma & Raynaud's UK (SRUK)
3 years ago
Paper on meds that help DA withdrawal
Hello, can anyone please point me to a paper that details the drugs that can assist with dopamine agonist withdrawal, so that I can share with my doctor? I am stepping down from ropinirole now (due to augmentation, of course) and it is horrible. My doctor, who doesn’t know a lot about RLS (but is open
Hello, can anyone please point me to a paper that details the drugs that can assist with dopamine agonist withdrawal, so that I can share with my doctor? I am stepping down from ropinirole now (due to augmentation, of course) and it is horrible. My doctor, who doesn’t know a lot about RLS (but is open
Frustrated-RLS
in
Restless Legs Syndrome
3 years ago
Plaquenil
Hi. I am AMA positive, pbc diagnosis. Chronic sinusitis and autoimmunehypothyroidism. Recent arthralgia and myalgia and raised crp, esr, and platelets for last 4 months. Rheumatologist feels it may be lupus, wegeners or sirgons. ANA , ANCA negative. On vimovo then arcoxia. They helped for a short
Hi. I am AMA positive, pbc diagnosis. Chronic sinusitis and autoimmunehypothyroidism. Recent arthralgia and myalgia and raised crp, esr, and platelets for last 4 months. Rheumatologist feels it may be lupus, wegeners or sirgons. ANA , ANCA negative. On vimovo then arcoxia. They helped for a short
Nellies47
in
Vasculitis UK
3 years ago
When to take Questran or Colestid powder
I am taking one sachet of Questran or Colestid powder (containing colestyramine or colestipol hydrochloride respectively) per day to control suspected bile acid malabsorption (I have a cooperative doctor - but I haven't been tested for BAM) and therefore IBS D - and with some success. My question is,
I am taking one sachet of Questran or Colestid powder (containing colestyramine or colestipol hydrochloride respectively) per day to control suspected bile acid malabsorption (I have a cooperative doctor - but I haven't been tested for BAM) and therefore IBS D - and with some success. My question is,
merve1
in
IBS Network
3 years ago
Post dental extraction
I had a molar removed yesterday afternoon due to severe pain and swelling. In my ignorant bliss I thought tooth out, pain and facial swelling will be gone, how wrong was I. Swelling worse and more widespread and pain is building back up. Has anyone suffered the same and found Prednisolone helped ?
I had a molar removed yesterday afternoon due to severe pain and swelling. In my ignorant bliss I thought tooth out, pain and facial swelling will be gone, how wrong was I. Swelling worse and more widespread and pain is building back up. Has anyone suffered the same and found Prednisolone helped ?
ParsnipSoup
in
PMRGCAuk
3 years ago
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