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Experiences with
Mast cell activation syndrome (MCAS)
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Does RLS ever go away? One week off patch and no issues
I was diagnosed with RLS about 2 years ago and I’ve been on 1mg Neupro since then, after trying another med that didn’t help. Recently I ran out of patches and had a struggle reaching my doctor for a new prescription and then another struggle getting a coupon for a rebate. Long story short, I haven’
I was diagnosed with RLS about 2 years ago and I’ve been on 1mg Neupro since then, after trying another med that didn’t help. Recently I ran out of patches and had a struggle reaching my doctor for a new prescription and then another struggle getting a coupon for a rebate. Long story short, I haven’
Discopage
in
Restless Legs Syndrome
3 years ago
Neupro vs Pregabalin
Tomorrow I take my last .25 tab of Ropinirole. My neurologist is switching me from Gabapentin to Pegabalin which I welcome. I had a welness visit with my GP yesterday and she has messaged me about Neupro. I do not want to go through anything like coming off Ropinirole ever again. My question is which
Tomorrow I take my last .25 tab of Ropinirole. My neurologist is switching me from Gabapentin to Pegabalin which I welcome. I had a welness visit with my GP yesterday and she has messaged me about Neupro. I do not want to go through anything like coming off Ropinirole ever again. My question is which
B534967
in
Restless Legs Syndrome
3 years ago
Fibromyalgia vs Chronic Fatigue
Can anyone help me with identifying the differences between Fibromyalgia and Chronic Fatigue Syndrome? Are they the same thing? Can you have both? Thank You
Can anyone help me with identifying the differences between Fibromyalgia and Chronic Fatigue Syndrome? Are they the same thing? Can you have both? Thank You
Fizzwizz35
in
Fibromyalgia Action UK
3 years ago
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Horizant Advice Please
I had my first dose last night and had a horrendous night, twitching and little sleep. How many days should I take it, before I give it up completely? I wouldn't say it was an allergic reaction, but just not the one I was hoping to get. The doctor told me to stop the Gabepentin cold turkey, which I did
I had my first dose last night and had a horrendous night, twitching and little sleep. How many days should I take it, before I give it up completely? I wouldn't say it was an allergic reaction, but just not the one I was hoping to get. The doctor told me to stop the Gabepentin cold turkey, which I did
Rwall
in
Restless Legs Syndrome
3 years ago
Antidepressants
I have been diagnosed with chronic fatigue/fibromyalgia. Can someone recommend an antidepressant that won’t affect my restless legs but will help with the chronic fatigue/pain and could you say whether this is a sedating antidepressant or an energizing antidepressant. They want to put me on amitriptyline
I have been diagnosed with chronic fatigue/fibromyalgia. Can someone recommend an antidepressant that won’t affect my restless legs but will help with the chronic fatigue/pain and could you say whether this is a sedating antidepressant or an energizing antidepressant. They want to put me on amitriptyline
Mum007
in
Restless Legs Syndrome
3 years ago
Clonidine for hyper pots anyone else?
Hello just looking for some advice on clonidine tablet they started me low as I react to all sorts with
mast
cell
activation
syndrome
. It doesn't seem to be helping at all .I found my mood is horrible .
Hello just looking for some advice on clonidine tablet they started me low as I react to all sorts with
mast
cell
activation
syndrome
. It doesn't seem to be helping at all .I found my mood is horrible .
Merkat90
in
High Blood Pressure Support
4 years ago
Journey update: LVV/GCA, tocilizumab and exercise
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
I have been diagnosed with LVV/GCA beginning of February (though MRI/MRA and PET/CT were not fully conclusive). With the help of Tocilizumab I now arrived at 12.5 mg prednisolone per day. I know that this is a very fast taper but it worked well until now and from now on the steps will become much smaller
DeepThought2
in
PMRGCAuk
3 years ago
Covid vaccine & PMR
Having had my vaccine today, I asked the nurse if my antibodies would produce equally as well as someone who didn’t have autoimmune issues. She said probably not but the only way to find out that would be to have an antibody test after the 2nd vaccine. I have thyroid issues, hashimotos, and PMR, has
Having had my vaccine today, I asked the nurse if my antibodies would produce equally as well as someone who didn’t have autoimmune issues. She said probably not but the only way to find out that would be to have an antibody test after the 2nd vaccine. I have thyroid issues, hashimotos, and PMR, has
Daisy1624
in
PMRGCAuk
3 years ago
Ropinirole withdrawal experience?
I am currently 1 week into this activity dropping 0.25 MG every 2 weeks (planned) & have been getting RLS augmentation back from 13:00 until bedtime now each day. The plan is to wait for these symptoms to subside then make the next 0.25 MG drop. Any experience as to how long this first stage takes as
I am currently 1 week into this activity dropping 0.25 MG every 2 weeks (planned) & have been getting RLS augmentation back from 13:00 until bedtime now each day. The plan is to wait for these symptoms to subside then make the next 0.25 MG drop. Any experience as to how long this first stage takes as
joepublic
in
Restless Legs Syndrome
3 years ago
What does "High" mean really?
If I have antibodies flagged as "high" on a blood test which are associated with Sjogren's (Anti-SS-B), Polymyositis (Anti-Jo-1) and SLE (Ribosomal P), does that mean I have all three autoimmune diseases? I was originally confirmed with Lupus. I'm relatively new to all this & these labs were 1/7/21
If I have antibodies flagged as "high" on a blood test which are associated with Sjogren's (Anti-SS-B), Polymyositis (Anti-Jo-1) and SLE (Ribosomal P), does that mean I have all three autoimmune diseases? I was originally confirmed with Lupus. I'm relatively new to all this & these labs were 1/7/21
MotorCityGirl
in
LUPUS UK
3 years ago
Electrifying leg/foot cramps worse! Is this a sign of augmentation from Ropinirole?
Does anyone experience electrifying cramps from the hips all the way to the feet and toes? Been on one mg of Ropinirole for about 2 years. I have to "walk" during the day when sitting computer for the fippin urgency to move my legs. This worsens in the evenings so sitting down to watch a TV show is not
Does anyone experience electrifying cramps from the hips all the way to the feet and toes? Been on one mg of Ropinirole for about 2 years. I have to "walk" during the day when sitting computer for the fippin urgency to move my legs. This worsens in the evenings so sitting down to watch a TV show is not
Write4u
in
Restless Legs Syndrome
3 years ago
Can buprenophine help with rls
So, because i am an addict the oxycodone was unsuccessful, I took all the 2 weeks pills in about 4 days then bought street morphine sulphate (susbitol) to get through the rest of the 10 days, well it didn't take long to build up an 800mg a day habit, I took one 200mg tablet over the last 19 hrs I am
So, because i am an addict the oxycodone was unsuccessful, I took all the 2 weeks pills in about 4 days then bought street morphine sulphate (susbitol) to get through the rest of the 10 days, well it didn't take long to build up an 800mg a day habit, I took one 200mg tablet over the last 19 hrs I am
velosolex
in
Restless Legs Syndrome
3 years ago
Advice please: has anyone here who has implanted a euploid embryo after PGS got a positive combined screening test for Down Syndrome?
Hi all, Looking for similar experiences here, hope you ladies don’t mind. So our little euploid embryo (our last one!), which we had PGS tested last year, is now unbelievably 14 weeks! I need to pinch myself everyday - it has been an emotional roller coaster every week! Last week when we had our dating
Hi all, Looking for similar experiences here, hope you ladies don’t mind. So our little euploid embryo (our last one!), which we had PGS tested last year, is now unbelievably 14 weeks! I need to pinch myself everyday - it has been an emotional roller coaster every week! Last week when we had our dating
Bettyjoy
in
Fertility Network UK
3 years ago
Polyhydramnios at 20 weeks?
Has anyone had this? I’ve never seen someone have this so early before. It’s normally a lot later on in pregnancy! We have a referral to Fetal medicine tomorrow and I’m worried
Has anyone had this? I’ve never seen someone have this so early before. It’s normally a lot later on in pregnancy! We have a referral to Fetal medicine tomorrow and I’m worried
Starfruit1715
in
Pregnancy and Parenting Support
3 years ago
Looking for a little bit of hope
Hello everyone. I’m just looking for a little bit of hope. My first round of IVF failed, I didn’t even make it to two weeks - I miscarried at 5 days post transfer despite being maxed out on hormones. We had our remaining embryos tested and they had chromosomal abnormalities and had to be discarded. So
Hello everyone. I’m just looking for a little bit of hope. My first round of IVF failed, I didn’t even make it to two weeks - I miscarried at 5 days post transfer despite being maxed out on hormones. We had our remaining embryos tested and they had chromosomal abnormalities and had to be discarded. So
hertsicsi1
in
Fertility Network UK
4 years ago
eosinophilic fasciitis
Does anyone have experience of this condition? I've been told that it is a component in unclassified connective tissue disease - in other words, doctors aren't sure what it is that I have - I certainly have morphea and scleroderma plus this. Can anyone add any information on this? Has caused the skin
Does anyone have experience of this condition? I've been told that it is a component in unclassified connective tissue disease - in other words, doctors aren't sure what it is that I have - I certainly have morphea and scleroderma plus this. Can anyone add any information on this? Has caused the skin
knoppia
in
Scleroderma & Raynaud's UK (SRUK)
4 years ago
Advice Required Re: Test results in &Drs Appt monday
I have been underactive since Aug 2020. Levo increased gradually in 25mgs to present 100mg daily. Having bad side effects ie stomach cramps,constipation. Switched from Teva 8 weeks ago to Activis as couldn't cope. Cramps gone. But in last 3 weeks been having night sweats, nausea , fatigued. Coincidence
I have been underactive since Aug 2020. Levo increased gradually in 25mgs to present 100mg daily. Having bad side effects ie stomach cramps,constipation. Switched from Teva 8 weeks ago to Activis as couldn't cope. Cramps gone. But in last 3 weeks been having night sweats, nausea , fatigued. Coincidence
rick2525
in
Thyroid UK
3 years ago
Proferrin
Anyone heard of this ad I am searching for a iron supplements that cause the least sides. https://badgut.org/information-centre/product-reviews/proferrin-heme-iron-polypeptide/
Anyone heard of this ad I am searching for a iron supplements that cause the least sides. https://badgut.org/information-centre/product-reviews/proferrin-heme-iron-polypeptide/
WorkingProgress
in
Pernicious Anaemia Society
3 years ago
Gabapentin/Pregabalin - Who is actually finding this helps their RLS?
There has been a lot of advice on this Forum about A2B Ligands being first line of treatment (?) and I was thinking there must be a lot of people out there who were advised to come off DA's (slowly) and go onto these Ligands. Then I am reading a lot of posts of people whereby these Ligands stop working
There has been a lot of advice on this Forum about A2B Ligands being first line of treatment (?) and I was thinking there must be a lot of people out there who were advised to come off DA's (slowly) and go onto these Ligands. Then I am reading a lot of posts of people whereby these Ligands stop working
Felicity21
in
Restless Legs Syndrome
3 years ago
Onycholysis....
Onycholysis.... anyone else have this? I had this 6 months ago my thumbs are symmetrical in damage and now it's flared up on my left hand really bad. I'm wondering if I'm having a flare up or have rheumatoid arthritis as well as hashimotos..my little fingers swollen and painful. I'm taking multivitamins
Onycholysis.... anyone else have this? I had this 6 months ago my thumbs are symmetrical in damage and now it's flared up on my left hand really bad. I'm wondering if I'm having a flare up or have rheumatoid arthritis as well as hashimotos..my little fingers swollen and painful. I'm taking multivitamins
Gillybean129
in
Thyroid UK
4 years ago
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