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Under Investigation
Hi all. In August whilst on holiday in Spain i noticed that my temporal artery was swollen and pulsating. No other symptoms. It gradually went down over a few days but I went to see my GP when I got home and she put it down to hot country, lots of walking. Last week it happened again, only difference
Hi all. In August whilst on holiday in Spain i noticed that my temporal artery was swollen and pulsating. No other symptoms. It gradually went down over a few days but I went to see my GP when I got home and she put it down to hot country, lots of walking. Last week it happened again, only difference
AllieOcean
in
PMRGCAuk
1 day ago
ulcer
I have the start of a lower leg ulcer has any one help to cure it
I have the start of a lower leg ulcer has any one help to cure it
potplants
in
Pain Concern
3 days ago
Finished C25K post hip replacement
Hello again all, took me 4 months to complete the programme as had to repeat a few but my hip all good albeit slower than I was but can’t believe I am now able to run a 5k. I celebrated by doing a local parkrun this week, my first one in two years!felt so good. I also took part as a research participant
Hello again all, took me 4 months to complete the programme as had to repeat a few but my hip all good albeit slower than I was but can’t believe I am now able to run a 5k. I celebrated by doing a local parkrun this week, my first one in two years!felt so good. I also took part as a research participant
RufSpk24
in
Couch to 5K
3 days ago
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Hi everyone,
Rang up my cancer specialist nurses to ask about my full body scan results as of 5 weeks ago now. The nurse told me I would be contacted if there was a problem. I said surely they let you know if all is clear? She said 'No only if a problem.' She was rather vague. The next day I had a letter to give
Rang up my cancer specialist nurses to ask about my full body scan results as of 5 weeks ago now. The nurse told me I would be contacted if there was a problem. I said surely they let you know if all is clear? She said 'No only if a problem.' She was rather vague. The next day I had a letter to give
Curry777
in
CLL Support
5 days ago
Long haul travel
I'm flying to Thailand in January from the UK and staying for three weeks. I've got the insurance sorted and booked in at the gp travel clinic in November for any jabs I might need. I'd be very grateful for any tips about long haul travel and particularly the flight. My consultant said I don't need
I'm flying to Thailand in January from the UK and staying for three weeks. I've got the insurance sorted and booked in at the gp travel clinic in November for any jabs I might need. I'd be very grateful for any tips about long haul travel and particularly the flight. My consultant said I don't need
EdwinaJ
in
MPN Voice
7 days ago
Xarelto and anxiety
hey there I would just like to share my experience in case someone else is going through it. I started Xarelto 2021 and had to change it 2024 because my anxiety got really really bad. My hematologist tried to keep me in it and question that it wasn’t the medicine. Along side that main issue that was
hey there I would just like to share my experience in case someone else is going through it. I started Xarelto 2021 and had to change it 2024 because my anxiety got really really bad. My hematologist tried to keep me in it and question that it wasn’t the medicine. Along side that main issue that was
Cya1117
in
Anticoagulation Support
12 days ago
Low dose of prednisolone
On August 20th I reduced my prednisolone from 2mg to 1mg. Around September 16th had bad pain in my back and joints. Bending my knees is very painful. Visited hospital on 19th for an echocardiogram and found it difficult to move to the left on the bed for the examination and had to get a taxi home
On August 20th I reduced my prednisolone from 2mg to 1mg. Around September 16th had bad pain in my back and joints. Bending my knees is very painful. Visited hospital on 19th for an echocardiogram and found it difficult to move to the left on the bed for the examination and had to get a taxi home
bluepuddy1
in
PMRGCAuk
12 days ago
Hydroxycarbamide induced lupus anticoagulant
Is anyone who is knowledgeable know if taking Hydroxycarbamide over 10 years is one of the medications that can cause lupus anticoagulant? I’ve read that certain medications can cause this but don’t know if HU is one of them. Alsi, do all of the drugs used for ET cause wbc to drop below button of
Is anyone who is knowledgeable know if taking Hydroxycarbamide over 10 years is one of the medications that can cause lupus anticoagulant? I’ve read that certain medications can cause this but don’t know if HU is one of them. Alsi, do all of the drugs used for ET cause wbc to drop below button of
130396
in
MPN Voice
12 days ago
Thoughts on alternate day dosage
I have PMR since 2018 but since have developed Vasculitis. As well as a 6-monthly infusion of Rituzimab I have been on a reducing regime of Prednisolone to 5mg daily. My consultant wants me to reduce to 5mg on alternate days. I would have thought 2.5mg daily would be more sensible. Thoughts please.
I have PMR since 2018 but since have developed Vasculitis. As well as a 6-monthly infusion of Rituzimab I have been on a reducing regime of Prednisolone to 5mg daily. My consultant wants me to reduce to 5mg on alternate days. I would have thought 2.5mg daily would be more sensible. Thoughts please.
HamishPMR
in
PMRGCAuk
15 days ago
Lupron cost!!!
LEUPROLIDE ACETATE INJECTION (45mg) 6 Month Description/Modifier Billing Code J9217 Provider billed the plan $35,367.50 Total cost (amount the plan approved) $1,896.00 Your share $379.20 🤨 20% HORMONAL CHEMOTHERAPY ADMINISTRATION $0 🤡
LEUPROLIDE ACETATE INJECTION (45mg) 6 Month Description/Modifier Billing Code J9217 Provider billed the plan $35,367.50 Total cost (amount the plan approved) $1,896.00 Your share $379.20 🤨 20% HORMONAL CHEMOTHERAPY ADMINISTRATION $0 🤡
Still_in_shock
in
Advanced Prostate Cancer
15 days ago
Urologist Wants to switch from Firmagon & Nubeqa to Lupron with Nubeqa
The urologist started with first injection of Firmagon with Nubeqa and before the end of 28 days wants to switch from Firmagon to Lupron with Nubeqa. I was under impression that Firmagon is better at getting the job done than Lupron? Why switch?
The urologist started with first injection of Firmagon with Nubeqa and before the end of 28 days wants to switch from Firmagon to Lupron with Nubeqa. I was under impression that Firmagon is better at getting the job done than Lupron? Why switch?
Rcole727
in
Advanced Prostate Cancer
16 days ago
Problems with ankles ….
I was diagnosed with Scleroderma in 2008 although like many others I think it was well established before my diagnosis. I have had excellent treatment from Dr Lanyon at QMC Nottingham . I have a development which I find worrying so thought I would ask the forum. My ankles have become troublesome
I was diagnosed with Scleroderma in 2008 although like many others I think it was well established before my diagnosis. I have had excellent treatment from Dr Lanyon at QMC Nottingham . I have a development which I find worrying so thought I would ask the forum. My ankles have become troublesome
creditcrunchie
in
Scleroderma & Raynaud's UK (SRUK)
19 days ago
Problems with ankles ….
I was diagnosed with Scleroderma in 2008 although like many others I think it was well established before my diagnosis. I have had excellent treatment from Dr Lanyon at QMC Nottingham . I have a development which I find worrying so thought I would ask the forum. My ankles have become troublesome
I was diagnosed with Scleroderma in 2008 although like many others I think it was well established before my diagnosis. I have had excellent treatment from Dr Lanyon at QMC Nottingham . I have a development which I find worrying so thought I would ask the forum. My ankles have become troublesome
creditcrunchie
in
Scleroderma & Raynaud's UK (SRUK)
19 days ago
Thursday's Thoughts
For many after diagnosis we worry if any new pain or symptom means we are getting sicker - that our PBC is now causing new things to happen to us - or worse, our PBC is progressing. I know from my own experience having PBC that we tend to blame anything 'new' on our PBC - or we wonder if our PBC is
For many after diagnosis we worry if any new pain or symptom means we are getting sicker - that our PBC is now causing new things to happen to us - or worse, our PBC is progressing. I know from my own experience having PBC that we tend to blame anything 'new' on our PBC - or we wonder if our PBC is
DonnaBoll
Administrator
in
PBC Foundation
19 days ago
GCA Training in Scanning at Leeds
I took part in this training yesterday as a volunteer 'patient'. It was interesting seeing how different doctors managed, or had difficulty, practicing scanning on me. I was lucky that the tutor in my room was Prof Dasgupta. 3 trainees at a time and 3 groups over 1.5 hours, quite intensive. I picked
I took part in this training yesterday as a volunteer 'patient'. It was interesting seeing how different doctors managed, or had difficulty, practicing scanning on me. I was lucky that the tutor in my room was Prof Dasgupta. 3 trainees at a time and 3 groups over 1.5 hours, quite intensive. I picked
PastelsinArt
in
PMRGCAuk
19 days ago
Inherited APS ?
Hi everyone, I hope you are having the best day you can! I have APS, being Lupus Anticoagulant Positive. As some of you will remember, the day we moved back home on the 3/6/23 (after the post-fire refurb) my husband had a stroke. Luckily not a serious stroke. He was hospitalised and off work a while
Hi everyone, I hope you are having the best day you can! I have APS, being Lupus Anticoagulant Positive. As some of you will remember, the day we moved back home on the 3/6/23 (after the post-fire refurb) my husband had a stroke. Luckily not a serious stroke. He was hospitalised and off work a while
WendyWoo50
in
Hughes Syndrome APS Forum
20 days ago
How were you diagnosed with Scleroderma?
I have recently been diagnosed with systemic scleroderma. My consultant seems to have based his diagnosis solely on my blood being tested positive for SCL70 antibodies and the fact I have Reynauds with a digital ulcer. I was expecting a rather more comprehensive set of tests plus evidence of the progress
I have recently been diagnosed with systemic scleroderma. My consultant seems to have based his diagnosis solely on my blood being tested positive for SCL70 antibodies and the fact I have Reynauds with a digital ulcer. I was expecting a rather more comprehensive set of tests plus evidence of the progress
Greetwell
in
Scleroderma & Raynaud's UK (SRUK)
25 days ago
Rivaroxaban (Xarelto) vs apixaban
I recently posted about problems dealing with the side effects of apixaban, mainly lightheadedness and dizziness. I saw my cardiologist today and he changed it to rivaroxaban 20 mg once a day. In reading about the side effects of this drug, I see that it causes "serious bleeding" among other things,
I recently posted about problems dealing with the side effects of apixaban, mainly lightheadedness and dizziness. I saw my cardiologist today and he changed it to rivaroxaban 20 mg once a day. In reading about the side effects of this drug, I see that it causes "serious bleeding" among other things,
Calypso76
in
Atrial Fibrillation Support
27 days ago
GCA Diagnosis, Arm/Leg Vasculitis?
Hello, I was diagnosed with GCA this past April in the emergency room. I was experiencing lightening jolts of pain on the right side of my head and had very high inflammation markers. I am trying to taper my prednisone and am currently on 27.5 mg and 15 mg methotrexate weekly. My concern is that my
Hello, I was diagnosed with GCA this past April in the emergency room. I was experiencing lightening jolts of pain on the right side of my head and had very high inflammation markers. I am trying to taper my prednisone and am currently on 27.5 mg and 15 mg methotrexate weekly. My concern is that my
Moaningxcat
in
Vasculitis UK
28 days ago
Apparent flare...
Regular hospital appointment a couple of weeks back; feeling fine; gave a blood sample (always difficult getting blood from me, so not a comfortable experience. Left feeling quite chirpy only to get a call from the rheumatologist to say my inflammation markers were high so I needed to get my GP practice
Regular hospital appointment a couple of weeks back; feeling fine; gave a blood sample (always difficult getting blood from me, so not a comfortable experience. Left feeling quite chirpy only to get a call from the rheumatologist to say my inflammation markers were high so I needed to get my GP practice
Gladys911
in
PMRGCAuk
28 days ago
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