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Experiences with
Mast cell activation syndrome (MCAS)
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Finally prescribed Methadone, amazing results.
Hi all. I live on the West Coast of Canada and have suffered from RLS since earliest childhood. This past year I was put back onto Levodopa, as I had augmented on everything else available, and they decided to try an old treatment I hadn’t used in twenty years, It actually worked if I used it throughout
Hi all. I live on the West Coast of Canada and have suffered from RLS since earliest childhood. This past year I was put back onto Levodopa, as I had augmented on everything else available, and they decided to try an old treatment I hadn’t used in twenty years, It actually worked if I used it throughout
serengazer
in
Restless Legs Syndrome
3 years ago
Can I quote you?
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
Hey experts … PMRpro, DorsetLady et al, My local Member of Parliament has just visited me to get information to put to our Federal Health Minister in an attempt to get an exemption so that I can have my allocation of tocilizumab extended, or indeed get the drug made available as it is for RA. Among
LemonZest11
in
PMRGCAuk
3 years ago
Researchers report third case of HIV remission after stem cell transplant using umbilical cord blood
A US woman has become the third known person who's gone into HIV remission, and the first mixed-race woman, thanks to a transplant of stem cells from umbilical cord blood, according to research presented at a conference Tuesday. https://edition.cnn.com/2022/02/15/health/hiv-third-person-remission/index.html
A US woman has become the third known person who's gone into HIV remission, and the first mixed-race woman, thanks to a transplant of stem cells from umbilical cord blood, according to research presented at a conference Tuesday. https://edition.cnn.com/2022/02/15/health/hiv-third-person-remission/index.html
Farooqji
in
Cure Parkinson's
3 years ago
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RLS-STOPED TAKING MEDS
i have stopped taking my rls meds. ropinirole for around 2 months. it took around 8 months to slowly get off ropinirole. my rls still shows up, but only when i lay down at night to go asleep.i toss and turn for about 4 to 5 hrs before rls stops. i average about 3 hrs of sleep. this still better than
i have stopped taking my rls meds. ropinirole for around 2 months. it took around 8 months to slowly get off ropinirole. my rls still shows up, but only when i lay down at night to go asleep.i toss and turn for about 4 to 5 hrs before rls stops. i average about 3 hrs of sleep. this still better than
help3
in
Restless Legs Syndrome
3 years ago
My ongoing RLS battle
This is a follow up to my post “Life After Ropinirole”. Shortly after I posted my body decided it had had too many opioiods and I became more sick than I had ever gotten on opioids before. It came on suddenly without warning. No chance to make any changes to prevent it. The nausea was so very intense
This is a follow up to my post “Life After Ropinirole”. Shortly after I posted my body decided it had had too many opioiods and I became more sick than I had ever gotten on opioids before. It came on suddenly without warning. No chance to make any changes to prevent it. The nausea was so very intense
Birdland
in
Restless Legs Syndrome
3 years ago
Is this possibly GCA again?
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
I am looking for some advice please. I was diagnosed with PMR 4four years ago and this was followed by Giant Cell Arteritis. I was given 60 mgs Prenisolone and gradually tapered down. Unfortunately I had a flare a few months later and I was not given appropriate advice and the sight in my left eye
pamela4215
in
PMRGCAuk
3 years ago
Pred sick day rules.
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
I'm currently on 2mg of Pred and weekly Tocilizumab and doing Ok as far as PMR and GCA symptoms go. However I've caught the dratted cold that's doing the rounds and wonder whether this means I should increase the Pred in line with the Sick Day Rules leaflet. I'm only using Paracetamol for the cold so
PastelsinArt
in
PMRGCAuk
3 years ago
Supplement Nichi Glucan appears safe and may be worth a PD trial - I would welcome any feedback on the linked documents.
A trial was done involving children with Autism Spectrum Disorder (ASD). However, the research paper makes a fairly good case (IMHO) for running a similar trial with PD patients. Beneficial reconstitution of gut microbiota and control of alpha-synuclein and curli-amyloids-producing enterobacteria,
A trial was done involving children with Autism Spectrum Disorder (ASD). However, the research paper makes a fairly good case (IMHO) for running a similar trial with PD patients. Beneficial reconstitution of gut microbiota and control of alpha-synuclein and curli-amyloids-producing enterobacteria,
jeffreyn
in
Cure Parkinson's
3 years ago
Cord blood donation Northern Ireland
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Does anyone know much about this? I’m very early on in pregnancy but heard about this years ago when beother in law had to have a stem cell transplant. I’m not sure if it’s available in Northern Ireland. Does it have to be donated or can it be froze for possible future use for child?
Babytwinkle
in
Pregnancy and Parenting Support
3 years ago
WARWICK's Latest Update on his POST ASCT journey thus far...
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee members), underwent his Allogenic Stem Cell Transplant (ASCT) journey. While his condition is deemed a success, the journey itself remains ongoing w/
socrates_8
in
MPN Voice
3 years ago
Thyroid and sticky blood tests
I am hoping someone can give me some help and information regarding these tests which my clinic have recommended before our next transfer. A little bit of my story so far. I have had 6 transfers, transfer number 4 gave us our little girl. My last transfer ended in a MMC at 8 weeks, not sure of the reason
I am hoping someone can give me some help and information regarding these tests which my clinic have recommended before our next transfer. A little bit of my story so far. I have had 6 transfers, transfer number 4 gave us our little girl. My last transfer ended in a MMC at 8 weeks, not sure of the reason
emmaemma5
in
Fertility Network UK
3 years ago
10 Years With CLL: Two Trials & Lifesaving CAR T-Cell Therapy
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
I rarely cross post to Patient Power but today there is a story by a fellow CLL patient I have known for many years as DebinOz. She is one of the few I know of with a more aggressive form of CLL than mine. And I think she has more air miles than my 750,000 with United. Len - See: https://patientpower.info
lankisterguy
Volunteer
in
CLL Support
3 years ago
From pramipexole and buprenorphine to what?
Hello, I am looking for any advice on withdrawing in my unique circumstance, i.e. how to drop more pramipexole and what to take when buprenorphine is withdrawn in two months time. 10 years RLS with massive augmentation, been at the point of wanting to top myself prior to trialing Targin (oxycodone with
Hello, I am looking for any advice on withdrawing in my unique circumstance, i.e. how to drop more pramipexole and what to take when buprenorphine is withdrawn in two months time. 10 years RLS with massive augmentation, been at the point of wanting to top myself prior to trialing Targin (oxycodone with
ChickenTwisty
in
Restless Legs Syndrome
3 years ago
Assistance with Potential misdiagnosis.
Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions
Hi All, I was unsure where to turn and you guys are my last hope! In July 2020 I was diagnosed with MS ( Multiple Sclerosis ) due to having some numbness and tingling in legs and foot and cognitive problems ( forgetful and thinking issues ) and extreme fatigue. I then had an MRI which revealed lesions
smileysammi
in
Pernicious Anaemia Society
3 years ago
JCVI advice recommending a fourth Covid jab for LVV-GCA patients on Tocilizumab?
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
I have been on (self-injected) Ro Actemra (Tocilizumab) since July 2019 for LVV-GCA, and it enabled me to cease all other medications (mainly the dreadful Prednisolone) over the course of the first 9 months.( All of my blood results have been totally normal from 2 weeks after starting Tocilizumab and
Suzita76
in
PMRGCAuk
3 years ago
Happy to be here!
With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here. In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments
With everything that's been going on with my lung disease over the past few years, I often forget just how fortunate I am to still be here. In September 2003 I was diagnosed with chronic myeloid leukaemia at the age of 18. I was totally blindsided and the future looked bleak. The amazing treatments
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
3 years ago
Anyone tried a homeopath
My mum has suffered with rls for about 10 years. She's tried ropinerole, pamiprexole, skin patches, gabapentin and pregablin. All of this gave her relief at first and then symptoms returned. Next the doctor gave her topiremade, with this her rls went away however she had really bad depression symptoms
My mum has suffered with rls for about 10 years. She's tried ropinerole, pamiprexole, skin patches, gabapentin and pregablin. All of this gave her relief at first and then symptoms returned. Next the doctor gave her topiremade, with this her rls went away however she had really bad depression symptoms
Bejwo50
in
Restless Legs Syndrome
3 years ago
Is there any advantage to putting off increasing my gabapentin?
Up until about 6 weeks ago the 1500 gabapentin that I take completely controlled my restless legs. Then about once a week I got restless legs. I have exercises that I do that take about 10 minutes that allows me to go back to bed without symptoms. It seems pretty obvious to me that I will eventually
Up until about 6 weeks ago the 1500 gabapentin that I take completely controlled my restless legs. Then about once a week I got restless legs. I have exercises that I do that take about 10 minutes that allows me to go back to bed without symptoms. It seems pretty obvious to me that I will eventually
SueJohnson
in
Restless Legs Syndrome
3 years ago
Coming off Apixaban
I have been on Apixaban 5mg twice a day for 6 months now due to me having a pulmonary embolism due to being bed bound with covid. I’m due to come off my medication today as my doctor insist I not longer need treatment. I’m very nervous to stop taking the tablets and what effects it will have on my body
I have been on Apixaban 5mg twice a day for 6 months now due to me having a pulmonary embolism due to being bed bound with covid. I’m due to come off my medication today as my doctor insist I not longer need treatment. I’m very nervous to stop taking the tablets and what effects it will have on my body
Ladyshnappz
in
Hughes Syndrome APS Forum
3 years ago
Life expectancy with MF
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Hello, all. I was diagnosed with post ET MF in 2019, after having been diagnosed with ET jak 2 in 2008. In 2019, I had my second BMB where it was confirmed I had progressed to MF, intermediate 1. I had a third BMB last September to determine whether I was a candidate for a bone marrow transplant. At
Cja1956
in
MPN Voice
3 years ago
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