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PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
9 months ago
When would you move heavy metal chelation in long COVID patients?
When would you move heavy metal chelation in long COVID patients? Answered by Dr. Jess Armine https://youtu.be/fzl173G_Hf0?si=ZAL16cYlEehQUVWN For information on LDN, go to https://linktr.ee/ldnrt Our webinars and training courses can be purchased from https://www.ldnrtevents.com/collections/webinars-and-training-courses
When would you move heavy metal chelation in long COVID patients? Answered by Dr. Jess Armine https://youtu.be/fzl173G_Hf0?si=ZAL16cYlEehQUVWN For information on LDN, go to https://linktr.ee/ldnrt Our webinars and training courses can be purchased from https://www.ldnrtevents.com/collections/webinars-and-training-courses
Shewulf
Administrator
in
LDN Research Trust
3 months ago
PIC - Punctate Inner Choroidopathy
Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others
Hi. I have just received a diagnosis for the above condition. I understand it’s extremely rare and would like to hear about other people’s experiences. I’m literally just on the journey and have had the first of 3 ‘rescue’ injections to prevent further sight loss. Would be good to connect with others
Rome2023
in
Macular Society
9 months ago
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shingles
I havnt posted for ages mainly because I’m generally very fit and well and do vast amounts of excercise but hoping for some possible explanations. Diagnosed 01/18 aged 71 now I had shingles 12 yrs ago but wasn’t very ill with it I arranged my first shingles jab for end Sept 23 No side effects but
I havnt posted for ages mainly because I’m generally very fit and well and do vast amounts of excercise but hoping for some possible explanations. Diagnosed 01/18 aged 71 now I had shingles 12 yrs ago but wasn’t very ill with it I arranged my first shingles jab for end Sept 23 No side effects but
Coffeejenny
in
CLL Support
6 months ago
small eyey
I don’t look like my eyes are normal size but the consultant says they are small, not deep and short ??? Says cataract op would be difficult when the time comes . Says further laser surgery not possible. has anyone else been told this ? I worries me for the future
I don’t look like my eyes are normal size but the consultant says they are small, not deep and short ??? Says cataract op would be difficult when the time comes . Says further laser surgery not possible. has anyone else been told this ? I worries me for the future
Sufitzy
in
Glaucoma UK
9 months ago
What is an ICM?
An Insertable Cardiac Monitor (ICM) is a small thin device that is inserted under the skin on your breastbone to record the activity of your heart. It can remain in place for up to 3 years. The device will capture and record 'episodes'. The recorded data will be collated and assessed and help to diagnose
An Insertable Cardiac Monitor (ICM) is a small thin device that is inserted under the skin on your breastbone to record the activity of your heart. It can remain in place for up to 3 years. The device will capture and record 'episodes'. The recorded data will be collated and assessed and help to diagnose
TracyAdmin
ArrhythmiaAlliance
in
Heart Rhythm Disorders Support
6 months ago
Post COVID fatigue
Just noticed that my last post 9 months ago was about me having COVID which I got over pretty quickly. Had it again two weeks ago and this time totally zonked. Got fuzzy head and headaches, upset stomach, funny taste in mouth and shattered. Sleeping ok and eating ok going nowhere near alcohol. Just wondered
Just noticed that my last post 9 months ago was about me having COVID which I got over pretty quickly. Had it again two weeks ago and this time totally zonked. Got fuzzy head and headaches, upset stomach, funny taste in mouth and shattered. Sleeping ok and eating ok going nowhere near alcohol. Just wondered
Noddy66
in
Asthma Community Forum
3 months ago
Sezary Syndrome.
After many months of fighting a complete body rash, I was visually diagnose with Sezary Syndome and had to discontinue my CLL treatment with Venetoclax, only did 8 months out of 24 months due to the rash condition. Is there anyone with knowledge of this or was there any previous postings? I greatly
After many months of fighting a complete body rash, I was visually diagnose with Sezary Syndome and had to discontinue my CLL treatment with Venetoclax, only did 8 months out of 24 months due to the rash condition. Is there anyone with knowledge of this or was there any previous postings? I greatly
Champlain
in
CLL Support
6 months ago
Covid Testing Kits
Hi, am I eligible for free Covid Testing kits. Had PMRG for 18 years Thx Tony L
Hi, am I eligible for free Covid Testing kits. Had PMRG for 18 years Thx Tony L
KCRoyals
in
PMRGCAuk
3 months ago
Colds and covid jabs
I have recently come down with a cold. It isnt too bad but I am coughing quite a bit. My covid jab is due this Thursday 3rd and my flu jab a week later. I am wondering if I should change the covid date (I dont want to have the flue and Covid jabs done on the same day). As the cold symptoms began last
I have recently come down with a cold. It isnt too bad but I am coughing quite a bit. My covid jab is due this Thursday 3rd and my flu jab a week later. I am wondering if I should change the covid date (I dont want to have the flue and Covid jabs done on the same day). As the cold symptoms began last
Cutes
in
NRAS
2 days ago
shingles vaccine
As anyone had the shingles vaccine and how was you ??? I am on Benepali weekly hopefully I will be ok
As anyone had the shingles vaccine and how was you ??? I am on Benepali weekly hopefully I will be ok
Soundofmusic52
in
NRAS
4 days ago
chicken pox
my granddaughter has chicken pox , the older two have been vaccinated so hopefully won’t get it , how safe is it to see them ? Anyone done this , I’m on 3mg pred and had chicken pox as a child . Any advice welcome doc wasn’t very helpful .
my granddaughter has chicken pox , the older two have been vaccinated so hopefully won’t get it , how safe is it to see them ? Anyone done this , I’m on 3mg pred and had chicken pox as a child . Any advice welcome doc wasn’t very helpful .
Oldoaktree
in
PMRGCAuk
8 days ago
Now negative for Covid, is it okay to go back to last Prep dose immediately (7 days Sick Day Rule of 10mg extra)and when to restart taper?
I had Covid last week so followed Sick Day Rule of upping my 10mg Pred dose to 20mg (took 2nd 10mg in evening for 7 days). Tested negative today and feel much better, just a little bit coldy still. It wasn't a severe attack by any means (I'd actually had my Covid spring booster jab in late May so was
I had Covid last week so followed Sick Day Rule of upping my 10mg Pred dose to 20mg (took 2nd 10mg in evening for 7 days). Tested negative today and feel much better, just a little bit coldy still. It wasn't a severe attack by any means (I'd actually had my Covid spring booster jab in late May so was
Preposterous
in
PMRGCAuk
3 months ago
Hashi symptoms still or tired/dry eyes?
Hey everyone, Still on my journey to "optimal" health and lab's whilst having Hashimoto's. Diagnosed 18 month ago. I have a strange one for you, or, not so strange, right now I'm not sure. So, currently on 162.5mcg of Levo and 10 mcg of Lio. I would say symptom wise I am feeling the best I have in
Hey everyone, Still on my journey to "optimal" health and lab's whilst having Hashimoto's. Diagnosed 18 month ago. I have a strange one for you, or, not so strange, right now I'm not sure. So, currently on 162.5mcg of Levo and 10 mcg of Lio. I would say symptom wise I am feeling the best I have in
dexterholland91
in
Thyroid UK
9 months ago
Hi, new to this page/forum, looking for information and advice.
Have been on PAS page and Thyroid UK page for a few years but just thought I'd be greedy and join yourselves too. Have been having increasing levels of pain and discomfort for years but just told lose weight, take brufen. Last few years have been awful , eventually got a referral to Rheumatology. Bloods
Have been on PAS page and Thyroid UK page for a few years but just thought I'd be greedy and join yourselves too. Have been having increasing levels of pain and discomfort for years but just told lose weight, take brufen. Last few years have been awful , eventually got a referral to Rheumatology. Bloods
Polo22
in
NRAS
3 months ago
No reaction
Had my pneumonia and shingles jabs last Tuesday and so far no reaction, only a sore arm for a day. Covid and flu jabs in a couple of weeks time, hope for the same outcome.
Had my pneumonia and shingles jabs last Tuesday and so far no reaction, only a sore arm for a day. Covid and flu jabs in a couple of weeks time, hope for the same outcome.
camshall
in
PMRGCAuk
16 days ago
Covid chest tightness.
Hi guys I tested positive for covid 5 days ago after returning from a holiday in Italy and have been from time to time been experiencing shortness of breath and chest tightness. On a couple of occasions had to use my gtn spray. I do have heart history 2 heart attacks 7 stents and atrial fibrillation.
Hi guys I tested positive for covid 5 days ago after returning from a holiday in Italy and have been from time to time been experiencing shortness of breath and chest tightness. On a couple of occasions had to use my gtn spray. I do have heart history 2 heart attacks 7 stents and atrial fibrillation.
graemeparsons
in
British Heart Foundation
3 months ago
Abs Lymphs going up after shingles
We saw the doctor for the first time after having shingles. Before shingles his Abs. Lymphs were 2.3 1000/mm3. Now 5 months later it is 3.5 1000/mm3. The Dr. was concerned. We were surprised that he started talking ( not now) about starting treatment. He stated that studies have shown it is better
We saw the doctor for the first time after having shingles. Before shingles his Abs. Lymphs were 2.3 1000/mm3. Now 5 months later it is 3.5 1000/mm3. The Dr. was concerned. We were surprised that he started talking ( not now) about starting treatment. He stated that studies have shown it is better
Pinhead1
in
CLL Support
18 days ago
How long should a patient be on LDN if they have long COVID?
How long should a patient be on LDN if they have long COVID? Answered by Dr. Jess Armine For information on LDN, go to https://linktr.ee/ldnrt Our webinars and training courses can be purchased from https://www.ldnrtevents.com/collections/webinars-and-training-courses We have a list of LDN Q
How long should a patient be on LDN if they have long COVID? Answered by Dr. Jess Armine For information on LDN, go to https://linktr.ee/ldnrt Our webinars and training courses can be purchased from https://www.ldnrtevents.com/collections/webinars-and-training-courses We have a list of LDN Q
Shewulf
Administrator
in
LDN Research Trust
3 months ago
Steroid injection into Kiloid Scars
I have a dermatology appointment on Saturday (yes an NHS appointment on a Saturday) to review treatment of kiloid scars. I think one of the options suggested may be direct steroid injections into the scars themselves. I have had PMR for 9 years and have at last got stable on 7 mg prednisolone daily
I have a dermatology appointment on Saturday (yes an NHS appointment on a Saturday) to review treatment of kiloid scars. I think one of the options suggested may be direct steroid injections into the scars themselves. I have had PMR for 9 years and have at last got stable on 7 mg prednisolone daily
scrambledegg
in
PMRGCAuk
3 months ago
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