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Experiences with
Mast cell activation syndrome (MCAS)
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Silicone bracelet
I bought a red silicone steroid dependent bracelet which arrived yesterday. And then I learned that I'm allergic to silicone! Anyone who wants it, pleas PM me.
I bought a red silicone steroid dependent bracelet which arrived yesterday. And then I learned that I'm allergic to silicone! Anyone who wants it, pleas PM me.
ChrisinNam
in
PMRGCAuk
3 years ago
Tocilizumab treatment?
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
A friend of mine recently suggested that I try the monoclonal antibody tocilizumab as a treatment for my PMR. My questions are as follows: Has tocilizumab brought anyone into remission and for how long? On balance, is treatment with tocilizumab preferable to the prednisone that I'm taking now? What is
Ozark
in
PMRGCAuk
3 years ago
Albuterol
Hi, Does albuterol sulfate impact RLS? I was prescribed it for COVID but I am always nervous.
Hi, Does albuterol sulfate impact RLS? I was prescribed it for COVID but I am always nervous.
Megamania
in
Restless Legs Syndrome
3 years ago
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Update on cataract op and Flecainide
I posted recently about a comment my surgeon made after my first cataract op when he said that Flecainide had made the first op slightly more awkward than normal. Today I had my second review and asked him for more detail. He said that Flecainide makes the central black part of the eye 'floppy' and
I posted recently about a comment my surgeon made after my first cataract op when he said that Flecainide had made the first op slightly more awkward than normal. Today I had my second review and asked him for more detail. He said that Flecainide makes the central black part of the eye 'floppy' and
Finvola
in
AF Association
3 years ago
New here—coming off ropinirole
Found this forum at 4am…you all know the drill! Diagnosed with RLS through a sleep study (performed because of insomnia and shallow sleep/frequent wakes) Jan 2020. Doc (who I am no longer seeing) prescribed 4mg of ropinirole daily, which I now know is a bonkers dose to start with. Once I figured out
Found this forum at 4am…you all know the drill! Diagnosed with RLS through a sleep study (performed because of insomnia and shallow sleep/frequent wakes) Jan 2020. Doc (who I am no longer seeing) prescribed 4mg of ropinirole daily, which I now know is a bonkers dose to start with. Once I figured out
Frustrated-RLS
in
Restless Legs Syndrome
3 years ago
Pramipexole & RLS
Hi, I have had RLS for a very long time, over 25 years I am 72 now, I worked as a printer on night shift for40 years, I am retired now I do not sleep much at night with my legs and arms on the move, I have found over the years when my RLS gets really bad, to get up and do something physical, no way can
Hi, I have had RLS for a very long time, over 25 years I am 72 now, I worked as a printer on night shift for40 years, I am retired now I do not sleep much at night with my legs and arms on the move, I have found over the years when my RLS gets really bad, to get up and do something physical, no way can
Barrylegs
in
Restless Legs Syndrome
3 years ago
Roactemra Tocilizumab - lab out of stock - advice needed please.
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Some of you may remember that I am taking Tocilizumab injections (only) regularly for GCA. Not long ago, others in my situation wrote saying that they had been warned that it was going to run out for a while due to the same drug being used world wide for covid patients. This has happened here in France
Frenchduck
in
PMRGCAuk
3 years ago
Medication review
I have decided to ask my GP for a medication review after having too many nights with horrendous rls and concerns about the amount of medication I take and the suspicious that my surgery practice hands out tablets like smarties. I would appreciate any advice I could say to my GP over a telephone consultation
I have decided to ask my GP for a medication review after having too many nights with horrendous rls and concerns about the amount of medication I take and the suspicious that my surgery practice hands out tablets like smarties. I would appreciate any advice I could say to my GP over a telephone consultation
Hoochybaby
in
Restless Legs Syndrome
3 years ago
Eustachian tube disfunction and Sjogren's? Anyone have this and any useful tips on dealing with it?
Hello All, wondering if you can help me? I have SLE & Sjogren's. Have had the dry eyes for several years and now in the past few months developed a dry mouth and blocked left ear & nostril. Also have tingling & numbness on the left side of the face which is being investigated - maybe trigreminal neuralgia
Hello All, wondering if you can help me? I have SLE & Sjogren's. Have had the dry eyes for several years and now in the past few months developed a dry mouth and blocked left ear & nostril. Also have tingling & numbness on the left side of the face which is being investigated - maybe trigreminal neuralgia
gemim
in
LUPUS UK
3 years ago
First Stem Cell Transplant Appointment done
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Thanks to everyone who replied to my first post on this. My husband and I stayed over in Southampton and we got home today. To my great relief, the consultant was extremely approachable and excellent at explaining things. I didn't ask all of my questions as these initial discussions are being done over
Otterfield
in
MPN Voice
3 years ago
Study shows low or undetectable immune response to double COVID-19 vaccination in patients with impaired immune systems
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
The first data from the ongoing OCTAVE (Observational Cohort Trial-T-cells Antibodies and Vaccine Efficacy in SARS-CoV-2) study show that a significant proportion of clinically at-risk patients with certain immunocompromised or immunosuppressed conditions mount a low or undetectable immune response after
2greys
in
Lung Conditions Community Forum
3 years ago
Tramadol
Would like to hear about anyone’s experience with Tramadol. I have had Zero luck with all the regular meds for rls. I just have so many side effects. I was having some luck with Tramadol and would only take if rls got real bad, but the last time it GAVE me restless legs! Not only that but it made
Would like to hear about anyone’s experience with Tramadol. I have had Zero luck with all the regular meds for rls. I just have so many side effects. I was having some luck with Tramadol and would only take if rls got real bad, but the last time it GAVE me restless legs! Not only that but it made
Nosleepatall
in
Restless Legs Syndrome
3 years ago
Why my Dr is reducing my pain medication which is effecting my quality of life
I am 45 I got diagnosed with a degenerative disease of my lumbar spine in July 2011. I also have lymphoedema. To cut a long story short I have been through hell and high water to get put on a medication plan to help with my conditions. I am still taking my medication but I am in chronic pain. The problems
I am 45 I got diagnosed with a degenerative disease of my lumbar spine in July 2011. I also have lymphoedema. To cut a long story short I have been through hell and high water to get put on a medication plan to help with my conditions. I am still taking my medication but I am in chronic pain. The problems
Daz75
in
Pain Concern
3 years ago
Why my Dr is reducing my medication which is effecting my quality of life
I am 45 I got diagnosed with a degenerative disease of my lumbar spine in July 2011. I also have lymphoedema. To cut a long story short I have been through hell and high water to get put on a medication plan to help with my conditions. I am still taking my medication but I am in chronic pain. The problems
I am 45 I got diagnosed with a degenerative disease of my lumbar spine in July 2011. I also have lymphoedema. To cut a long story short I have been through hell and high water to get put on a medication plan to help with my conditions. I am still taking my medication but I am in chronic pain. The problems
Daz75
in
Action on Pain
3 years ago
First Appointment re Stem Cell Transplant
This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment. I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the
This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment. I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the
Otterfield
in
MPN Voice
3 years ago
Anyone have face vibrations on lyrica
I was on 1500 mg gabapentin and just switched to 250 mg of lyrica which is 1/6 the gabapentin which worked. But now I have face vibrations and then restless legs. It don't understand why that amount of lyrica doesn't work when it is the equivalent of the 1500 mg of gabapentin that does.
I was on 1500 mg gabapentin and just switched to 250 mg of lyrica which is 1/6 the gabapentin which worked. But now I have face vibrations and then restless legs. It don't understand why that amount of lyrica doesn't work when it is the equivalent of the 1500 mg of gabapentin that does.
SueJohnson
in
Restless Legs Syndrome
3 years ago
Why Am I Taking Butyrate?
A lot of us take a number of supplements. This thread is to make the case for Butyric Acid - Butyrate. I started taking it because some guy on another forum said Niacin and Butyrate "cured" his Parkinson's, and then later I noticed he was self diagnosed. This does not mean he was wrong. So please, anybody
A lot of us take a number of supplements. This thread is to make the case for Butyric Acid - Butyrate. I started taking it because some guy on another forum said Niacin and Butyrate "cured" his Parkinson's, and then later I noticed he was self diagnosed. This does not mean he was wrong. So please, anybody
Bolt_Upright
in
Cure Parkinson's
3 years ago
Who should receive a 3rd COVID-19 dose according to the CDC
I just received this email from Tufts Medical Center in Boston, Massachusetts and it's another confirmation as to who is really immunocompromised. I hope this helps some members of this forum who are on higher doses of Pred. "Patient Update - Dear Tufts Medical Center and Tufts Children’s Hospital Community
I just received this email from Tufts Medical Center in Boston, Massachusetts and it's another confirmation as to who is really immunocompromised. I hope this helps some members of this forum who are on higher doses of Pred. "Patient Update - Dear Tufts Medical Center and Tufts Children’s Hospital Community
kulina
in
PMRGCAuk
3 years ago
SIBO and Elevated Liver Enzymes
I have had gastro issues the last two months after using a proton pump inhibitor in May and was finally diagnosed with SIBO on Monday. My GI started me on Rifaximin and Neomycin last night. She did a liver function panel test before I started on the antibiotics and the AST was 52 and the ALT was 73.
I have had gastro issues the last two months after using a proton pump inhibitor in May and was finally diagnosed with SIBO on Monday. My GI started me on Rifaximin and Neomycin last night. She did a liver function panel test before I started on the antibiotics and the AST was 52 and the ALT was 73.
Pain12345
in
Pernicious Anaemia Society
3 years ago
Sensitive post- a bit hope for recurring miscarriages viability scan done ✅
Some might know me I've been here nearly 7 years! Wish I'd found the site earlier into our journey. We endeared a long 7 year struggle due to a huge delay in my endometriosis 3 surgeries and a chemical pregnancy. But happily we had our daughter Francesca in June 2019. The pregnancy was full of anxiety
Some might know me I've been here nearly 7 years! Wish I'd found the site earlier into our journey. We endeared a long 7 year struggle due to a huge delay in my endometriosis 3 surgeries and a chemical pregnancy. But happily we had our daughter Francesca in June 2019. The pregnancy was full of anxiety
Jess1981
in
Fertility Network UK
3 years ago
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