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Experiences with
Mast cell activation syndrome (MCAS)
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ET accelerated progression
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
Smdg
in
MPN Voice
2 years ago
Ropinirole
Hi there I am weaning down off Ropinirole and that is fine at the moment. Very gradual reduction However, I was started on Pregabalin about four months ago. I have suffered various side effects but most of them manageable until now. I take 2 tablets in the morning and was on 3 at night. I have
Hi there I am weaning down off Ropinirole and that is fine at the moment. Very gradual reduction However, I was started on Pregabalin about four months ago. I have suffered various side effects but most of them manageable until now. I take 2 tablets in the morning and was on 3 at night. I have
SilverEvie
in
Restless Legs Syndrome
2 years ago
I’ve been taking too much T3
please can someone help. I’m taking 50 mcg levo and 10 mcg lio (2x 5 mcg) daily. However I’ve just checked my meds and realised for the last month I’ve been taking 2 x 10 mcg per day T3. When I collected my prescription from the hospital I had a mix of 10 mcg and 5 mcg - I must have mixed them up.
please can someone help. I’m taking 50 mcg levo and 10 mcg lio (2x 5 mcg) daily. However I’ve just checked my meds and realised for the last month I’ve been taking 2 x 10 mcg per day T3. When I collected my prescription from the hospital I had a mix of 10 mcg and 5 mcg - I must have mixed them up.
Simba53
in
Thyroid UK
2 years ago
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Restless Legs Medication - Ropinirole and Gabapentin
I was diagnosed with Restless legs syndrome around 2012 and was prescribed ropinirole. I started on 0.5 mg increasing to 1 mg, and this worked for a while. A couple of years ago, my symptoms were getting worse and I was experiencing augmentation. I get the sensation in my wrists now, and my symptoms
I was diagnosed with Restless legs syndrome around 2012 and was prescribed ropinirole. I started on 0.5 mg increasing to 1 mg, and this worked for a while. A couple of years ago, my symptoms were getting worse and I was experiencing augmentation. I get the sensation in my wrists now, and my symptoms
Kissfan
in
Restless Legs Syndrome
2 years ago
Restless leg syndrome
Having suffered from RLS on and off since childhood it now starts in the morning and continues all day until I can take Ropinirole at nighttime. It seems little research is being done what can we do to persuade some scientist somewhere to take this on and relieve the pain and distress experienced
Having suffered from RLS on and off since childhood it now starts in the morning and continues all day until I can take Ropinirole at nighttime. It seems little research is being done what can we do to persuade some scientist somewhere to take this on and relieve the pain and distress experienced
Titbit
in
Restless Legs Syndrome
2 years ago
Off Tocilizumab after six months
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
redhouts
in
PMRGCAuk
2 years ago
any advice about extreme pain following a sigmoidoscopy
hello, I have been suffering for over 5years and kept getting sent away by GP who told me I was just old,I was in my 50s, extremely fit and healthy. Now Iam chronic,await a defecating proctogram and have to irrigate my bowel. I attended for a sigmoidoscopy which was very very painful,it felt like
hello, I have been suffering for over 5years and kept getting sent away by GP who told me I was just old,I was in my 50s, extremely fit and healthy. Now Iam chronic,await a defecating proctogram and have to irrigate my bowel. I attended for a sigmoidoscopy which was very very painful,it felt like
Nearlygaveup
in
Pelvic Pain Support Network
2 years ago
Going it alone but hit a snag
Hi all Since my post from June, after initially trying to increase the T3, I had massive heart palps and sweating, phone endo on 12th July who said to leave T3 at 2.5 mcg per day and leave levo at 91.07mcg per day. He informed me the symptons I was talking about, hip pain, muscle aches etc where not
Hi all Since my post from June, after initially trying to increase the T3, I had massive heart palps and sweating, phone endo on 12th July who said to leave T3 at 2.5 mcg per day and leave levo at 91.07mcg per day. He informed me the symptons I was talking about, hip pain, muscle aches etc where not
AleB
in
Thyroid UK
2 years ago
Parkinson
I now have Parkinson as well as restless legs ,am on Levodopa 100mg/5Omg at 11.OO am -3.00pm -7.OOpm -11.OOpm capsules only last 3-4 hours waken at 3.OOam in morning with restless legs on and off till getting up at 8.OOam for breakfast . Consultant phoning this week to see how I am getting on she will
I now have Parkinson as well as restless legs ,am on Levodopa 100mg/5Omg at 11.OO am -3.00pm -7.OOpm -11.OOpm capsules only last 3-4 hours waken at 3.OOam in morning with restless legs on and off till getting up at 8.OOam for breakfast . Consultant phoning this week to see how I am getting on she will
auldreekie18
in
Restless Legs Syndrome
2 years ago
experience with Buprenorphine
Greetings, I have been taking Buprenorphine for 5 weeks now and I am not exaggerating when I say it has changed my life. I have dealt with restless legs all my life. Everyone in my family had it, one of my brothers gave up on life because of it. I was taking Cabaser to treat it since about 2000.
Greetings, I have been taking Buprenorphine for 5 weeks now and I am not exaggerating when I say it has changed my life. I have dealt with restless legs all my life. Everyone in my family had it, one of my brothers gave up on life because of it. I was taking Cabaser to treat it since about 2000.
Nycsyd
in
Restless Legs Syndrome
2 years ago
I want a transplant but doctors won't give me one
I thought
Mast
Cell
Activation
Syndrome
might be causing it, but my liver did not respond to the medications used to treat MCAS. My liver enzymes fluctuate from being extremely high (like my alkaline phosphatase being 495) and being lower, but still abnormally elevated. They fluctuate at random.
I thought
Mast
Cell
Activation
Syndrome
might be causing it, but my liver did not respond to the medications used to treat MCAS. My liver enzymes fluctuate from being extremely high (like my alkaline phosphatase being 495) and being lower, but still abnormally elevated. They fluctuate at random.
jess_j
in
British Liver Trust
2 years ago
New to ropinirole
My first time at a new neurologist. He started me on ropinirole 0.25mg 1/day at 7pm. I take 600mg gabapentin at 5pm and 9pm. He convinced me that I don't have CMT but have RLS. My feet are rather numb, and my ankles and shins hurt occasionally. I believe this is peripheral neuropathy, but he did not
My first time at a new neurologist. He started me on ropinirole 0.25mg 1/day at 7pm. I take 600mg gabapentin at 5pm and 9pm. He convinced me that I don't have CMT but have RLS. My feet are rather numb, and my ankles and shins hurt occasionally. I believe this is peripheral neuropathy, but he did not
fishinphil1946
in
Restless Legs Syndrome
2 years ago
double or single transfer - help!
I’m about to do my 6th transfer and have been recommended a double transfer. I’m 38 five failed transfers, one was a miscarriage. Each time I had a single embryo transfer, other than my 4th which was a double. This will be my first frozen transfer, all previous were fresh. what’s everyone’s thoughts
I’m about to do my 6th transfer and have been recommended a double transfer. I’m 38 five failed transfers, one was a miscarriage. Each time I had a single embryo transfer, other than my 4th which was a double. This will be my first frozen transfer, all previous were fresh. what’s everyone’s thoughts
darkbuthappyplace
in
Fertility Network UK
2 years ago
tocilizumab after relapse
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Devoid
in
PMRGCAuk
2 years ago
Strange blood and balance and pmr?
First i have to say I am in PMR and GCA remission on no pred at the moment, touch wood. So why am I hear? i recently fell forward, a bit like a tree falling . i landed on concrete, nose first. glasses rim went into my forehead , nose went into concrete and broke. blood everywhere. it settled like
First i have to say I am in PMR and GCA remission on no pred at the moment, touch wood. So why am I hear? i recently fell forward, a bit like a tree falling . i landed on concrete, nose first. glasses rim went into my forehead , nose went into concrete and broke. blood everywhere. it settled like
doubtfully
in
PMRGCAuk
2 years ago
Percocet during Pramipexole Withdrawal
On Percocet 10mg at night to deal with augmentation from Pramipexole while waiting to get in to see a neurologist. What dose seems to work for people? Does it make you tired if you take it during the day? I’m experiencing Withdrawal during day now too.
On Percocet 10mg at night to deal with augmentation from Pramipexole while waiting to get in to see a neurologist. What dose seems to work for people? Does it make you tired if you take it during the day? I’m experiencing Withdrawal during day now too.
kturenne
in
Restless Legs Syndrome
2 years ago
Blood test results
Hi I have had a Medichecks blood test before having my Endo appointment next week. I’m on 50 mcg levothyroxine and 10 mcg Liothyronine (taken as 5 mcg twice daily). My TSH levels are low and TPA very high. Is this normal on combination therapy? While I feel better on this regime I cannot lose the
Hi I have had a Medichecks blood test before having my Endo appointment next week. I’m on 50 mcg levothyroxine and 10 mcg Liothyronine (taken as 5 mcg twice daily). My TSH levels are low and TPA very high. Is this normal on combination therapy? While I feel better on this regime I cannot lose the
Simba53
in
Thyroid UK
2 years ago
trying to be normal
So I’ve had restless legs syndrome for over 25 years and I had been on ropinirole at least that long. I was up to 3 mg an evening on the ropinerol and it was getting worse. when I was able to meet with a doctor here in California who is very familiar with restless leg syndrome.. I am now on oxycodone
So I’ve had restless legs syndrome for over 25 years and I had been on ropinirole at least that long. I was up to 3 mg an evening on the ropinerol and it was getting worse. when I was able to meet with a doctor here in California who is very familiar with restless leg syndrome.. I am now on oxycodone
Crazygrl
in
Restless Legs Syndrome
2 years ago
Request - Real time experience Reco for the best haematologists in Portugal please
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
2 years ago
Methadone RLS RESULTS
hello, i was curious I have refractory rls and even buphenorphine and Methadone don’t do much it’s so strange my body hates me lol Has anyone taken opiates and had them not to much for u? it’s so weird how some people it saves their life some people can’t handle side effects and others it does nothing
hello, i was curious I have refractory rls and even buphenorphine and Methadone don’t do much it’s so strange my body hates me lol Has anyone taken opiates and had them not to much for u? it’s so weird how some people it saves their life some people can’t handle side effects and others it does nothing
RC723
in
Restless Legs Syndrome
2 years ago
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