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Experiences with
Sjogren-Larsson syndrome
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Noobie
Hello, my name is Rachel, I’ve been lurking here for a red months and thought I say hello and ask for some advice please. I have been on Ropinirole for a while now but my RLS has started to get worse, which from reading here is a common issue. Recently have have been taking Magnesium supplements with
Hello, my name is Rachel, I’ve been lurking here for a red months and thought I say hello and ask for some advice please. I have been on Ropinirole for a while now but my RLS has started to get worse, which from reading here is a common issue. Recently have have been taking Magnesium supplements with
Rachelp1
in
Restless Legs Syndrome
5 years ago
Pulmonary fibrosis
My sister in-law has RA but was diagnosed with pulmonary fibrosis this past September. Has anyone else experienced this and what course of action was taken. My SIL is on oxygen 24/7 and is on a lung transplant list. Anyone have similar issues?
My sister in-law has RA but was diagnosed with pulmonary fibrosis this past September. Has anyone else experienced this and what course of action was taken. My SIL is on oxygen 24/7 and is on a lung transplant list. Anyone have similar issues?
Cburkhard2
in
NRAS
5 years ago
DIL vs SLE - Anti Histone Antibody
Hi everyone, Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online. As some of you know, I have a bit of a weird storyline that led to my diagnosis
Hi everyone, Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online. As some of you know, I have a bit of a weird storyline that led to my diagnosis
katidid
in
LUPUS UK
5 years ago
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GCA
Hi, another newbie. Had mild pain in temples for around 8 days and been to hospital for bloods. They think could be GCA and have prescribed 50mg steroid which I will get to tomorrow. Biopsy is TBC Bit scared to be honest. I’m 46yr male usually fit and healthy? Any feedback would be greatly appreciated
Hi, another newbie. Had mild pain in temples for around 8 days and been to hospital for bloods. They think could be GCA and have prescribed 50mg steroid which I will get to tomorrow. Biopsy is TBC Bit scared to be honest. I’m 46yr male usually fit and healthy? Any feedback would be greatly appreciated
Jc554
in
PMRGCAuk
5 years ago
Very high beta hcg after BFP - sensitive post
Hi, I'm very concerned about my beta hcg levels. I've transferred 2 embryos, both blastocists, genetically tested. I'm today at 5w5d and got a scan to check the embryos. We could see one viable embryo and his heartbeat ❤ However, I've never seen such high hcg levels for a single pregnancy before: 11dp5dt
Hi, I'm very concerned about my beta hcg levels. I've transferred 2 embryos, both blastocists, genetically tested. I'm today at 5w5d and got a scan to check the embryos. We could see one viable embryo and his heartbeat ❤ However, I've never seen such high hcg levels for a single pregnancy before: 11dp5dt
catwerner
in
Fertility Network UK
5 years ago
Cutting back on Requip
When I started RLS only happened at night, now its all day long. Im suppose to take Requip 1mg four times daily. Also Gabapentin 300mg 3yimes a day. Problem is I seem to need it every 3 hours or I am miserable. Can I cut the Requip in half so I dont run out? If I take 1of each pill when I go to bed
When I started RLS only happened at night, now its all day long. Im suppose to take Requip 1mg four times daily. Also Gabapentin 300mg 3yimes a day. Problem is I seem to need it every 3 hours or I am miserable. Can I cut the Requip in half so I dont run out? If I take 1of each pill when I go to bed
kate819
in
Restless Legs Syndrome
5 years ago
Plaquenil and dry mouth
Plaquenil is helping some of my lupus and mctd symptoms, but it seemed to trigger dry mouth. I need to have glass of water to sip on in the middle of the night. Has anybody else experienced this side effect of plaquenil? Or could it possibly be Sjögrens?
Plaquenil is helping some of my lupus and mctd symptoms, but it seemed to trigger dry mouth. I need to have glass of water to sip on in the middle of the night. Has anybody else experienced this side effect of plaquenil? Or could it possibly be Sjögrens?
loopy4me
in
LUPUS UK
5 years ago
Ivf journal?
This might be a really random post, but I’ve just suffered my first chemical pregnancy which was completely heartbreaking. I’ve ordered the Zita West’s guide to fertility and have read almost a third this evening, which I have found really helped. I really want to change my mindset and my attitude
This might be a really random post, but I’ve just suffered my first chemical pregnancy which was completely heartbreaking. I’ve ordered the Zita West’s guide to fertility and have read almost a third this evening, which I have found really helped. I really want to change my mindset and my attitude
Laura2020
in
Fertility Network UK
5 years ago
Pregabalin update
Hello and seasons greetings I’ve not posted on here for a while but thought I would end 2019 on a positive note. (For me anyway.) Anybody reading my back story will know the horrors of my experience of augmentation with ropinirole, followed by a tolerance of Tramadol. I moved onto Pregabalin 150mg
Hello and seasons greetings I’ve not posted on here for a while but thought I would end 2019 on a positive note. (For me anyway.) Anybody reading my back story will know the horrors of my experience of augmentation with ropinirole, followed by a tolerance of Tramadol. I moved onto Pregabalin 150mg
Pam34
in
Restless Legs Syndrome
5 years ago
Does Plaquenil Hydroxychloroquine) help with Sjorgens
I was recently diagnosed with Sjogrens, my rheumatologist prescribed Plaquenil (Hydroxychloroquine) I read some studies that seem to suggest that there is no evidence Plaquenil helps with Sjogrens like it does with Lupus. I'm now doubting whether or not to take it. Has Plaquenil helped your Sjogrens?
I was recently diagnosed with Sjogrens, my rheumatologist prescribed Plaquenil (Hydroxychloroquine) I read some studies that seem to suggest that there is no evidence Plaquenil helps with Sjogrens like it does with Lupus. I'm now doubting whether or not to take it. Has Plaquenil helped your Sjogrens?
Miamigirl305
in
The Australian Sjögren's Syndrome Association
5 years ago
Sjogrens
My blood tests were negative for sjogrens. My doctor said the lip biosy was unnecessary but I pushed him to order it. I'm glad I did because the lip biospy was positive for Sjogrens. My rheumatologist confirmed the diagnosis and now put me on plaquenil.
My blood tests were negative for sjogrens. My doctor said the lip biosy was unnecessary but I pushed him to order it. I'm glad I did because the lip biospy was positive for Sjogrens. My rheumatologist confirmed the diagnosis and now put me on plaquenil.
Miamigirl305
in
Hughes Syndrome APS Forum
5 years ago
Strange coffee relief
It’s been quite sometime since I’ve posted. I went through hell to wean off of the 0.75mg dose of pramipexole. Managed to stay off for approximately 2 months. After sleep deprivation and some embarrassing and dangerous episodes of sleep walking I started back on pramipexole 0.25mg. I have managed
It’s been quite sometime since I’ve posted. I went through hell to wean off of the 0.75mg dose of pramipexole. Managed to stay off for approximately 2 months. After sleep deprivation and some embarrassing and dangerous episodes of sleep walking I started back on pramipexole 0.25mg. I have managed
Moonpen
in
Restless Legs Syndrome
5 years ago
LETS GET YOU WELL no more RSL
These are the words Dr Glen Brooks used in NYC when he reached across the table and held my hand . And that is exactly what he did . I popped the tiny little wafer under my tongue . I go to sleep in under 3 minutes it is not a sleeping pill. No increase in dosage It also helps people with anxiety and
These are the words Dr Glen Brooks used in NYC when he reached across the table and held my hand . And that is exactly what he did . I popped the tiny little wafer under my tongue . I go to sleep in under 3 minutes it is not a sleeping pill. No increase in dosage It also helps people with anxiety and
Shumbah
in
Restless Legs Syndrome
5 years ago
Antidepressants and tirosint absorption
Does escitalopram or any antidepressant in general affects tirosint absorption in persons without thyroid?
Does escitalopram or any antidepressant in general affects tirosint absorption in persons without thyroid?
Maramonro
in
Thyroid UK
5 years ago
Pred Hair (male) Head & Facial
I would like to point out to the Mods and others, that my post of OH's Christmas Beard was in no way a "Holiday Photo" and was posted some hours before the mods made the request re Decamber 22nd. In Aunty Bee's post I replied "No Christmas juper but OH is cultivating a Christmas Beard - obviouly not
I would like to point out to the Mods and others, that my post of OH's Christmas Beard was in no way a "Holiday Photo" and was posted some hours before the mods made the request re Decamber 22nd. In Aunty Bee's post I replied "No Christmas juper but OH is cultivating a Christmas Beard - obviouly not
Nuff1
in
PMRGCAuk
5 years ago
Trazodone, RLS, and pregnancy
Hi all! Hope everyone is well. I posted about my pregnancy and rls struggles a couple of days ago and just wanted to update and ask some questions and hear any experiences from you all. I went to see my OB and she prescribed me Trazodone 100mg to take as needed for sleep. Last night I took it for the
Hi all! Hope everyone is well. I posted about my pregnancy and rls struggles a couple of days ago and just wanted to update and ask some questions and hear any experiences from you all. I went to see my OB and she prescribed me Trazodone 100mg to take as needed for sleep. Last night I took it for the
Emmarielee
in
Restless Legs Syndrome
5 years ago
80 ice cold baths - UPDATE
Two months ago I started and tomorrow I will grit my teeth for the last time. I have managed one a day, occasionally two but not often 😳. They have become considerably colder as the weather gets frostier and so does my water tank in the attic!! I've made it, even though halfway I felt I couldn't go
Two months ago I started and tomorrow I will grit my teeth for the last time. I have managed one a day, occasionally two but not often 😳. They have become considerably colder as the weather gets frostier and so does my water tank in the attic!! I've made it, even though halfway I felt I couldn't go
Tuccatoo
in
Restless Legs Syndrome
5 years ago
Not the most pleasant of questions
I have cirrhosis and along with a multitude of other medication I take lactulose daily. Now as you may be aware one of the nice side effects of lactulose is flatulence, and I mean pretty much none stop. This is both embarrassing to me and irritating to my family, is there anything I can do? is it ok
I have cirrhosis and along with a multitude of other medication I take lactulose daily. Now as you may be aware one of the nice side effects of lactulose is flatulence, and I mean pretty much none stop. This is both embarrassing to me and irritating to my family, is there anything I can do? is it ok
Chris-harris
in
British Liver Trust
5 years ago
Gabapentin with Ropinirole
I have been through 2 different neurologists over the last 10 years, as they keep moving elsewhere. I ended up seeing a PA, who of all things, recommended that I continue with Ropinirole and drink more tonic water! You'd think that she would have read my charts and see that I've been through all the
I have been through 2 different neurologists over the last 10 years, as they keep moving elsewhere. I ended up seeing a PA, who of all things, recommended that I continue with Ropinirole and drink more tonic water! You'd think that she would have read my charts and see that I've been through all the
wcp2008
in
Restless Legs Syndrome
5 years ago
Friend took my story to his doctor
Friend of mine went to the doctors today he has struggled with RSL but never taken any meds , just all the natural alternatives hot water bottles , magnesium etc . Cutting a long story short he told the doctor my story and he was prescribed temgesic which is .2 or 200 micrograms of Buprenorphine straight
Friend of mine went to the doctors today he has struggled with RSL but never taken any meds , just all the natural alternatives hot water bottles , magnesium etc . Cutting a long story short he told the doctor my story and he was prescribed temgesic which is .2 or 200 micrograms of Buprenorphine straight
Shumbah
in
Restless Legs Syndrome
5 years ago
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