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SCT Journey update No.5
Hi to everyone who reads this, Just thought I’d let you know that am finally in Addenbrookes hospital having chemo as we speak. Had a Hickman line fitted last week. Am on Day 6, had dose of fludara and campath. Been just on fludara until today and was coping well, no side effects. Campath is slightly
Hi to everyone who reads this, Just thought I’d let you know that am finally in Addenbrookes hospital having chemo as we speak. Had a Hickman line fitted last week. Am on Day 6, had dose of fludara and campath. Been just on fludara until today and was coping well, no side effects. Campath is slightly
LFCLove
in
MPN Voice
5 days ago
Going to dentist
I'd like to know how people with tinnitus/hyperacusis cope at dental visits plseAsking for my hubby who hasn't been dentist for over a year and needs to go but is so anxious about any noise that may trigger a noise level. He can wear headphones but the hyperacusis will still be exacerbated. Any advice
I'd like to know how people with tinnitus/hyperacusis cope at dental visits plseAsking for my hubby who hasn't been dentist for over a year and needs to go but is so anxious about any noise that may trigger a noise level. He can wear headphones but the hyperacusis will still be exacerbated. Any advice
Spinach123
in
Tinnitus UK
20 days ago
5FU/CAL, any experience? (5 fluorouracil/calcipotriene)
Just wondering if anyone has had treatment for actinic keratosis on the nose or face? I just started treatment for multiple AK's on the nose with FU/CAL cream (5FU-Calcipotriene compound) I have read that it activates lymphocytes and wondering if anyone using this compound has experienced any changes
Just wondering if anyone has had treatment for actinic keratosis on the nose or face? I just started treatment for multiple AK's on the nose with FU/CAL cream (5FU-Calcipotriene compound) I have read that it activates lymphocytes and wondering if anyone using this compound has experienced any changes
Meatloaf9
in
MPN Voice
21 days ago
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Colomycin v Promixin
I have been on Colomycin nebuliser for many, many years which I obtained from our local hospital. Now my consultant has decided for me to obtain the prescription from my GP surgery. But when I collected the meds from my local pharmacy they had dispensed Promixin instead. Anyone else had this problem
I have been on Colomycin nebuliser for many, many years which I obtained from our local hospital. Now my consultant has decided for me to obtain the prescription from my GP surgery. But when I collected the meds from my local pharmacy they had dispensed Promixin instead. Anyone else had this problem
PAP48
in
Lung Conditions Community Forum
23 days ago
What you can do.
HI 1 make a tool box to hold your information. Buy a big book called Fibromyalgia & Chronic Myofascial Pain Syndrome a survival manual Devin Starlanyl M.D. Mary Ellen Copeland, M. S.,M.A This book will help you. Oh by the way the tool box you make is in the mind. I live in the US the last
HI 1 make a tool box to hold your information. Buy a big book called Fibromyalgia & Chronic Myofascial Pain Syndrome a survival manual Devin Starlanyl M.D. Mary Ellen Copeland, M. S.,M.A This book will help you. Oh by the way the tool box you make is in the mind. I live in the US the last
dellydog
in
Fibromyalgia Action UK
1 month ago
It's mortar and pestle time - Ginkgo update
Holland & Barrett have discontinued 30mg Ginkgo tablets, leaving 60mg and 120mg on the shelf. No more convenience for a 3 x 30mg dose. I tried a 120 but the increase in tinnitus which happens for me on dose day was uncomfortable so I won't be doing that again. It looks like more is not necessarily better
Holland & Barrett have discontinued 30mg Ginkgo tablets, leaving 60mg and 120mg on the shelf. No more convenience for a 3 x 30mg dose. I tried a 120 but the increase in tinnitus which happens for me on dose day was uncomfortable so I won't be doing that again. It looks like more is not necessarily better
Ray200
in
Tinnitus UK
2 months ago
Bronchoscopie advice
Hello everyone I was recently due to have a bronchoscopie but cancelled at the last minute. I was told that I would have a local anesthetic in my nose and that they would be working on my lungs for 15 minutes. The idea of someone playing around in my lungs for 15 minutes whilst I was awake was very
Hello everyone I was recently due to have a bronchoscopie but cancelled at the last minute. I was told that I would have a local anesthetic in my nose and that they would be working on my lungs for 15 minutes. The idea of someone playing around in my lungs for 15 minutes whilst I was awake was very
Wibble28
in
Lung Conditions Community Forum
2 months ago
Pip help
Hi lovely people I have a question i am waiting on a decision for pip and have just found out my Dr has diagnosed me with fibromyalgia amongst other ting do I need to tell pip now This is me not my husband 🫣 Thanks in advance ☺️
Hi lovely people I have a question i am waiting on a decision for pip and have just found out my Dr has diagnosed me with fibromyalgia amongst other ting do I need to tell pip now This is me not my husband 🫣 Thanks in advance ☺️
Suzeinwoody
in
Fibromyalgia Action UK
3 months ago
I've finally reached a milestone
I quit teaching due to hyperacusis. The classroom was the only place that used to keep me going in that job. So I finished last week and started doing a couple of days at my new job this week. Day two in the office and I managed all day with no hearing protection.Its a small quiet office with only a
I quit teaching due to hyperacusis. The classroom was the only place that used to keep me going in that job. So I finished last week and started doing a couple of days at my new job this week. Day two in the office and I managed all day with no hearing protection.Its a small quiet office with only a
daverussell
in
Tinnitus UK
4 months ago
Next instalment
Before I start my next task, either proofreading or, dread the thought, cleaning the car, here`s the next instalment. Chris. One of mum's best friends from childhood was, without a doubt, Lydia, a confident who in later life became Aunty Lyds to all of us. Their friendship through their teenage years
Before I start my next task, either proofreading or, dread the thought, cleaning the car, here`s the next instalment. Chris. One of mum's best friends from childhood was, without a doubt, Lydia, a confident who in later life became Aunty Lyds to all of us. Their friendship through their teenage years
LissacFrance
in
Lung Conditions Community Forum
5 months ago
Impact of brief CBT on chronic pain and anxiety
Hello, My name is Audrey and I am a student at Pepperdine University. I am doing a research study about the impact of brief Cognitive Behavioral Therapy on people with chronic pain and anxiety. I would appreciate it if you could take a few minutes to complete both parts. It will also expose you to a
Hello, My name is Audrey and I am a student at Pepperdine University. I am doing a research study about the impact of brief Cognitive Behavioral Therapy on people with chronic pain and anxiety. I would appreciate it if you could take a few minutes to complete both parts. It will also expose you to a
audreycosta
in
Pain Concern
5 months ago
Patients with higher apolipoprotein A-I levels at greater risk for giant cell arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
https://www.healio.com/news/rheumatology/20240315/patients-with-higher-apolipoprotein-ai-levels-at-greater-risk-for-giant-cell-arteritis
perceptual63
in
PMRGCAuk
5 months ago
Aortitis
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
I was diagnosed with non cranial Giant Cell Arteritis in September last year. So far I haven't managed to find anyone else with this condition because most people have the temporal version with the headaches.Mine is Aortitis which apparently is rare. I'd love to share experiences with someone else
Dance62
in
PMRGCAuk
6 months ago
PMR and brachial neuritis
It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different
It looks like I have developed a fairly rare condition called Parsonage-Turner syndrome (PTS), also called brachial neuritis. It started with terrible pain in the shoulder, so initially I thought it would appear in the other shoulder and be the beginning of a PMR relapse. But it is taking a different
dmart7
in
PMRGCAuk
6 months ago
Question to the collective
As mentioned previously, I was diagnosed (Prof H/Sheffield) as having the SCA7 version of Ataxia in 2014. I was put on a tablet,( DANTROLENE) that has been gradually increased from 1 X 25mg capsule to the current 3 X 25mg Just had a phone call about some physio I saw last year, and it was then kind
As mentioned previously, I was diagnosed (Prof H/Sheffield) as having the SCA7 version of Ataxia in 2014. I was put on a tablet,( DANTROLENE) that has been gradually increased from 1 X 25mg capsule to the current 3 X 25mg Just had a phone call about some physio I saw last year, and it was then kind
Butcherpete
in
Ataxia UK
6 months ago
Hi I’m dory10. I was diagnosed inDec2019 but had it for 27 years. I fall over a lot now I’m having tests to find out why.
I fell down stairs expecting my 3rd child at 37 weeks . She was fine a genius infact but I was left in muscle spasms and so much pain. I was told I was so close to being a paraplegic. I put up with all the little things that went wrong, I was fortunate not to be paraplegic. In 2016 I had a minor car
I fell down stairs expecting my 3rd child at 37 weeks . She was fine a genius infact but I was left in muscle spasms and so much pain. I was told I was so close to being a paraplegic. I put up with all the little things that went wrong, I was fortunate not to be paraplegic. In 2016 I had a minor car
Dory10
in
Fibromyalgia Action UK
6 months ago
Loss of voice!
Anybody with asthma + bronchiectasis combo ever suffer with total loss of voice? Ihave the odd croaky days, but it doesn't last long, now I've lost my voice ccompletely.....had loads of hot drinks, nothing working. Tips please!! Thanks.
Anybody with asthma + bronchiectasis combo ever suffer with total loss of voice? Ihave the odd croaky days, but it doesn't last long, now I've lost my voice ccompletely.....had loads of hot drinks, nothing working. Tips please!! Thanks.
Tiggertheterrier
in
Asthma Community Forum
6 months ago
Pseudomonas colonised.
Morning all, l have been on nebulised Colomycin since last August. Although it has kept infections at bay, l am more breathless than l used to be and energy levels are very low. I have told that l will be on this medication for a long time as my lungs are very badly damaged. I cannot walk any length
Morning all, l have been on nebulised Colomycin since last August. Although it has kept infections at bay, l am more breathless than l used to be and energy levels are very low. I have told that l will be on this medication for a long time as my lungs are very badly damaged. I cannot walk any length
falcon68
in
Lung Conditions Community Forum
6 months ago
Getting bombarded with ads for RA treatment Honey bee venom cream?.
Amazing too good to be true claims for this but there seems to be a few bits of research on it being anti inflammatory. Anyone tried it ? Still taking the meds....
Amazing too good to be true claims for this but there seems to be a few bits of research on it being anti inflammatory. Anyone tried it ? Still taking the meds....
welsh12
in
NRAS
7 months ago
MGUS and PMR/GCA
If true, this is a little unsettling... MGUS can be a precursor to Multiple Myeloma. Quote from article: "A study of United States veterans suggested that subjects with autoimmune conditions where autoantibodies are detectable are at increased risk of developing MGUS [46]. Furthermore, a recent
If true, this is a little unsettling... MGUS can be a precursor to Multiple Myeloma. Quote from article: "A study of United States veterans suggested that subjects with autoimmune conditions where autoantibodies are detectable are at increased risk of developing MGUS [46]. Furthermore, a recent
kp60
in
PMRGCAuk
7 months ago
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