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Webinar: Pegcetacoplan for Dry AMD

The first-ever treatment for dry age-related macular degeneration (AMD) will be the topic of our next My Macular and Me webinar. Pegcetacoplan, which will be known as Syfovre, was approved for use in the US in February to treat patients with late-stage dry AMD – often referred to as geographic atrophy
The first-ever treatment for dry age-related macular degeneration (AMD) will be the topic of our next My Macular and Me webinar. Pegcetacoplan, which will be known as Syfovre, was approved for use in the US in February to treat patients with late-stage dry AMD – often referred to as geographic atrophy
Carol_MacularSociety profile image
Carol_MacularSociety
Partnerin Macular Society
30 days ago

SharonY

Wondering if anyone has had dental extraction while on Actemra. I was told by my dentist that it affects the jaw and I would need to see a specialist since an extraction would be problematic? I am in the UK and have weekly Actemra injections. Thx
Wondering if anyone has had dental extraction while on Actemra. I was told by my dentist that it affects the jaw and I would need to see a specialist since an extraction would be problematic? I am in the UK and have weekly Actemra injections. Thx
SharonY profile image
SharonY
in PMRGCAuk
22 days ago

Nosebleeds and Apixaban

Some years ago I had occasional nose bleeds,usually in the winter and made worse by going into dry atmosphere and from one nostril only. Starting Saturday 6th May I had 5 quite heavy ones,including clots. I managed to see an actual doctor yesterday who diagnosed an infection so prescribed Naseptin cream
Some years ago I had occasional nose bleeds,usually in the winter and made worse by going into dry atmosphere and from one nostril only. Starting Saturday 6th May I had 5 quite heavy ones,including clots. I managed to see an actual doctor yesterday who diagnosed an infection so prescribed Naseptin cream
Camelia23 profile image
Camelia23
in AF Association
30 days ago
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Clonidine for hypertension

Hello, Does anyone have experience with taking clonidine for hypertension? My FWP has been experiencing fluctuating blood pressure (anything from 102/66 or lower to 180/90 or even 200/80 on occasions) and his cardiologist has been adjusting his meds but they don’t seem to be that effective. We
Hello, Does anyone have experience with taking clonidine for hypertension? My FWP has been experiencing fluctuating blood pressure (anything from 102/66 or lower to 180/90 or even 200/80 on occasions) and his cardiologist has been adjusting his meds but they don’t seem to be that effective. We
Peppa_pig profile image
Peppa_pig
in Cure Parkinson's
1 month ago

Actemra frequency query

Hi Everyone, I’m wondering if there is anyone on here who is managing their Actemra injection pen shots four-weekly? I’m interested to know why your shots are spaced out to 4 weekly (or more), and for how long and how successfully you are managing this. Thanks. 😘
Hi Everyone, I’m wondering if there is anyone on here who is managing their Actemra injection pen shots four-weekly? I’m interested to know why your shots are spaced out to 4 weekly (or more), and for how long and how successfully you are managing this. Thanks. 😘
LemonZest11 profile image
LemonZest11
in PMRGCAuk
1 month ago

Webinar: Charles Bonnet Syndrome Research

Our second My Macular and Me webinar of the month will welcome researchers from the Royal Holloway University of London who will discuss their latest research on Charles Bonnet Syndrome (CBS). Professor Robin Walker and his team are the first to study the effectiveness of recommended techniques to manage
Our second My Macular and Me webinar of the month will welcome researchers from the Royal Holloway University of London who will discuss their latest research on Charles Bonnet Syndrome (CBS). Professor Robin Walker and his team are the first to study the effectiveness of recommended techniques to manage
Carol_MacularSociety profile image
Carol_MacularSociety
Partnerin Macular Society
3 months ago

Stop Actemra for good?

I am down to 4.5 mg of Prednisone. Started at 15 a couple of years ago. Have had about a year of monthly Actemra infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion
I am down to 4.5 mg of Prednisone. Started at 15 a couple of years ago. Have had about a year of monthly Actemra infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion
Greytree profile image
Greytree
in PMRGCAuk
2 months ago

Medication change prior to surgery?

I’m wondering if it is a good idea to increase my prednisone dose ahead of cataract surgery next week?. It’s expected to be a routine and ‘non invasive ‘ procedure but all the same sure to be hard body. I’m on 6mg prednisone and started at 60mg for GCA just over four years ago. I’ve been in the care
I’m wondering if it is a good idea to increase my prednisone dose ahead of cataract surgery next week?. It’s expected to be a routine and ‘non invasive ‘ procedure but all the same sure to be hard body. I’m on 6mg prednisone and started at 60mg for GCA just over four years ago. I’ve been in the care
bright-horizon profile image
bright-horizon
in PMRGCAuk
3 months ago

Prednisolone and cataract operation

I have been on long term prednisolone For GCA & PMR since 2014.Since 2020 I have been on 2mg each day and instructed to stay at 2mg for the rest of my life as a maintenance dose( 86 years old In September Last Tuesday Feb.28th I had a cataract operation pleased to say all went well Should I have
I have been on long term prednisolone For GCA & PMR since 2014.Since 2020 I have been on 2mg each day and instructed to stay at 2mg for the rest of my life as a maintenance dose( 86 years old In September Last Tuesday Feb.28th I had a cataract operation pleased to say all went well Should I have
saunders123 profile image
saunders123
in PMRGCAuk
3 months ago

Advice for self-injecting.

Hello, I am going to experiment with self injecting. Have ordered this off amazon.de: Pascoe® Vitamin B12 Depot Injectopaz 1500 μg 10 x 1 ml Ingredients: 1 ampoule 1 ml contains: active ingredient: hydroxocobalamine acetate 1500 μg. Other ingredients: sodium chloride, water for injection purposes
Hello, I am going to experiment with self injecting. Have ordered this off amazon.de: Pascoe® Vitamin B12 Depot Injectopaz 1500 μg 10 x 1 ml Ingredients: 1 ampoule 1 ml contains: active ingredient: hydroxocobalamine acetate 1500 μg. Other ingredients: sodium chloride, water for injection purposes
DocAJB profile image
DocAJB
in Pernicious Anaemia Society
4 months ago

PREDNISONE TAPERING WITH ACTEMRA

This is my second time with GCA- I tapered prednisone slowly over the last 5 years without Actemra. My TAB was negative, but was treated for GCA/PMR. Last summer (after being completely off prednisone) I had several amaurosis fugax incidences, as well as jaw and ear pain). A positive temporal biopsy
This is my second time with GCA- I tapered prednisone slowly over the last 5 years without Actemra. My TAB was negative, but was treated for GCA/PMR. Last summer (after being completely off prednisone) I had several amaurosis fugax incidences, as well as jaw and ear pain). A positive temporal biopsy
Pamk1949 profile image
Pamk1949
in PMRGCAuk
4 months ago

osteopenia worse, im on enoxaparin/ lovenox any thoughts on vitk2?

I had repeat dexascan says my hips are getting worse, anyone on enoxaparin/lovenox taking vit k2 for “calcium to bone absorption”? Docs are talking about fosamex, etc, but I would rather do vitamins if possible. Not looking for medical advice but would like to know if others with APS are taking it
I had repeat dexascan says my hips are getting worse, anyone on enoxaparin/lovenox taking vit k2 for “calcium to bone absorption”? Docs are talking about fosamex, etc, but I would rather do vitamins if possible. Not looking for medical advice but would like to know if others with APS are taking it
Wittycjt profile image
Wittycjt
in Hughes Syndrome APS Forum
5 months ago

steroid injections

has anybody had triamcinolone injection for macular oedema. I am having a cataract op in 3 weeks time and I will be having this injection around the eye at the same time. I think it is also called Kenalog
has anybody had triamcinolone injection for macular oedema. I am having a cataract op in 3 weeks time and I will be having this injection around the eye at the same time. I think it is also called Kenalog
Koalajane profile image
Koalajane
in Macular Society
5 months ago

Anybody Know Anything About "Nicotinamide Adenine Dinucleotide" (NAD+) Supplement?

Somebody told me they were taking NAD+. I was surprised you could even by NAD+. I thought everybody took NAD precursors (NA, NR) but I see Amazon sells NAD+ https://www.amazon.com/Liposomal-Supplement-Absorption-Nicotinamide-Alternative/dp/B09V6X1PWM?source=ps-sl-shoppingads-lpcontext&ref_=fplfs&smid
Somebody told me they were taking NAD+. I was surprised you could even by NAD+. I thought everybody took NAD precursors (NA, NR) but I see Amazon sells NAD+ https://www.amazon.com/Liposomal-Supplement-Absorption-Nicotinamide-Alternative/dp/B09V6X1PWM?source=ps-sl-shoppingads-lpcontext&ref_=fplfs&smid
Bolt_Upright profile image
Bolt_Upright
in Cure Parkinson's
4 months ago

Understanding BMB

Hi, Reading other members' interpretations of their BMB reports has led me to look at mine more closely, and would value your input. I had my second one over a year ago and was told like my first one everything was fine - no fibrosis. I have PV and take Rux. I didn't question it. However, In the Trephine
Hi, Reading other members' interpretations of their BMB reports has led me to look at mine more closely, and would value your input. I had my second one over a year ago and was told like my first one everything was fine - no fibrosis. I have PV and take Rux. I didn't question it. However, In the Trephine
JP1952 profile image
JP1952
in MPN Voice
4 months ago

Thought of the day - B12 paradox

Like many aspects of life that we're all trying to grapple with, good health comes from a very fine balance. There is no 'one way' to do things, but a sweet spot in the middle. And I believe it's the same with diet, in particular B12. B12 is a regulator of homocysteine. Low B12 is a driver for high
Like many aspects of life that we're all trying to grapple with, good health comes from a very fine balance. There is no 'one way' to do things, but a sweet spot in the middle. And I believe it's the same with diet, in particular B12. B12 is a regulator of homocysteine. Low B12 is a driver for high
Pickle500 profile image
Pickle500
in Pernicious Anaemia Society
5 months ago

When do you stop Actemra

I have had four infusions of Actemra. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
I have had four infusions of Actemra. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
Plains profile image
Plains
in PMRGCAuk
5 months ago

Anyone been converted to a DOAC from Wafarin

Has anyone who is triple antibody positive being converted to the newer Anticoagulants known as DOAC such any of the following medications dabigatran (Pradaxa), rivaroxaban (Xarelto), apixaban (Eliquis), edoxaban (Savaysa), and betrixaban (Bevyxxa) If you have, are you satisfied and would you say its
Has anyone who is triple antibody positive being converted to the newer Anticoagulants known as DOAC such any of the following medications dabigatran (Pradaxa), rivaroxaban (Xarelto), apixaban (Eliquis), edoxaban (Savaysa), and betrixaban (Bevyxxa) If you have, are you satisfied and would you say its
nmousdic profile image
nmousdic
in Hughes Syndrome APS Forum
5 months ago

Actemra

Actemra shots, specifically the Epi-Pen....still having problems injecting...have to push hard until I feel needle pierce skin....this morning I felt medicine drip down my leg, but some went in because I had blood and a pin hole in my leg. Don't know if i should do another or just wait until next week
Actemra shots, specifically the Epi-Pen....still having problems injecting...have to push hard until I feel needle pierce skin....this morning I felt medicine drip down my leg, but some went in because I had blood and a pin hole in my leg. Don't know if i should do another or just wait until next week
Joseph14612 profile image
Joseph14612
in PMRGCAuk
5 months ago

A week since my first cataract op.

Hello All, Not been on line a lot as not long had one cataract sorted. Next one due at the end of January. Was asked to stop apixaban 3 days before with no problems. All quite easy and no problems - apart from my wanting to rub my eyes when tired - which is quite often. Wife doing all the drops and
Hello All, Not been on line a lot as not long had one cataract sorted. Next one due at the end of January. Was asked to stop apixaban 3 days before with no problems. All quite easy and no problems - apart from my wanting to rub my eyes when tired - which is quite often. Wife doing all the drops and
Desanthony profile image
Desanthony
in AF Association
6 months ago
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