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United States APS Doctor Specialist List
I had one thrombosis event (CRVO) in May 2022 and then was diagnosed with APS shortly thereafter. I have only been on aspirin, which was input from an ophthalmologist, a hematologist, and a vascular specialist. Now the hematologist wants me to go on Warfarin. I have concluded that this hematologist
I had one thrombosis event (CRVO) in May 2022 and then was diagnosed with APS shortly thereafter. I have only been on aspirin, which was input from an ophthalmologist, a hematologist, and a vascular specialist. Now the hematologist wants me to go on Warfarin. I have concluded that this hematologist
baldboy67
in
Hughes Syndrome APS Forum
11 months ago
lower back, sacroiliac joint maybe? hips affected. can you help me wait?
hello! hopefully i can describe clearly and succinctly what is going on... not always easy for me. my lower back has rumbled at me since i was a young person with cute swayback to fierce sciatica working on an assembly line in my 20s to not moving enough while playing music hunched over a fiddle and
hello! hopefully i can describe clearly and succinctly what is going on... not always easy for me. my lower back has rumbled at me since i was a young person with cute swayback to fierce sciatica working on an assembly line in my 20s to not moving enough while playing music hunched over a fiddle and
hazmatrec
in
Pain Concern
11 months ago
Besremi clinical trial opportunity
I've was diagnosed with Jak2+ ET in March, though the BMB report stated they couldn't exclude pre-fibrotic myelofibrosis as a possible differential. It's been a bit of a crazy ride, but am now under the care of an MPN specialist (what a difference a specialist makes!) My symptoms include fatigue, headaches
I've was diagnosed with Jak2+ ET in March, though the BMB report stated they couldn't exclude pre-fibrotic myelofibrosis as a possible differential. It's been a bit of a crazy ride, but am now under the care of an MPN specialist (what a difference a specialist makes!) My symptoms include fatigue, headaches
WRLM
in
MPN Voice
11 months ago
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BRVO and AF
In 2017 at 72 I was diagnosed with a Branch retinal vein occlusion, high BP and my first episode of AF which was reverted by a potassium shot into my tummy in the A&E department at 3 am. Since then, on 60mg Edoxaban, 2.5mg Bisoprolol fumerate, 20mg Lisinopril, and 4 weekly injections of Eylea into
In 2017 at 72 I was diagnosed with a Branch retinal vein occlusion, high BP and my first episode of AF which was reverted by a potassium shot into my tummy in the A&E department at 3 am. Since then, on 60mg Edoxaban, 2.5mg Bisoprolol fumerate, 20mg Lisinopril, and 4 weekly injections of Eylea into
Hidden
in
Atrial Fibrillation Support
11 months ago
Vensection
I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons as my hemocrit slightly high, does this happen with E.T? I asked hematologist if this means I have progressed to P.V and she told me no but it can vary going from E T to PV. They don't actually tell you much, I am only on
I have had E.T Jak 2 positive for over 3 year now, I have now had 4 venesectlons as my hemocrit slightly high, does this happen with E.T? I asked hematologist if this means I have progressed to P.V and she told me no but it can vary going from E T to PV. They don't actually tell you much, I am only on
doglover49
in
MPN Voice
11 months ago
Lupus & Sjogrens with Rituximab Infusions
Good Morning, I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)just had double Infusion 2 weeks apart. Also on 5mg maint steroids and Mepacrine also Helliocare photosensitivity tablets, blood pressure tablets, folic acid calcichew, Asprin. I had a really bad time this year with photosensitivity
Good Morning, I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)just had double Infusion 2 weeks apart. Also on 5mg maint steroids and Mepacrine also Helliocare photosensitivity tablets, blood pressure tablets, folic acid calcichew, Asprin. I had a really bad time this year with photosensitivity
Haired
in
LUPUS UK
11 months ago
Laparoscopic Surgery and PV
I am 67 years old and have had PV for 3 years. I am on 1,000 mg Hydroxyurea and one low dose aspirin per day. I have to have laparoscopic surgery to remove my ovaries. I am very concerned because of the higher risks of blood clots or excessive bleeding that I have read about for people with PV during
I am 67 years old and have had PV for 3 years. I am on 1,000 mg Hydroxyurea and one low dose aspirin per day. I have to have laparoscopic surgery to remove my ovaries. I am very concerned because of the higher risks of blood clots or excessive bleeding that I have read about for people with PV during
Sheena2020
in
MPN Voice
1 year ago
Is My Resting Heart Rate Too Low?
Hi First time poster here. I am 62 had an angioplasty following a heart attack last month, with a single stent being fitted. I was reasonably fit through walking beforehand, and have been enjoying daily walks since the procedure, gradually building up my range on the flat, so I am very pleased at what
Hi First time poster here. I am 62 had an angioplasty following a heart attack last month, with a single stent being fitted. I was reasonably fit through walking beforehand, and have been enjoying daily walks since the procedure, gradually building up my range on the flat, so I am very pleased at what
Bhunabhoy
in
British Heart Foundation
1 year ago
Statins
I am in my 70s and discovered to have heart issues at a pre opp assessment for a bowel op. Cardiologist put me on Ramipril, Bisoprolol and a Statin prior to having an MRI and CT Scan. It appears I have a mild systolic murmur and an artery less that 50% blocked. Aspirin now added to medication.I am finding
I am in my 70s and discovered to have heart issues at a pre opp assessment for a bowel op. Cardiologist put me on Ramipril, Bisoprolol and a Statin prior to having an MRI and CT Scan. It appears I have a mild systolic murmur and an artery less that 50% blocked. Aspirin now added to medication.I am finding
Beanlover
in
British Heart Foundation
1 year ago
A List for Newly Diagnosed that My Wife did in 2022 please add to list if anything is missed or wrong or needs updating. TIA
I have to pack, moving trucks coming in AM…and Rest… She shared this on a farce book group page. This List Is Not Complete Please feel free to Message Chat Us with your Email as items on the listing example: ie: were deleted / removed by a healthunlocked admin. The original post keeps getting modified
I have to pack, moving trucks coming in AM…and Rest… She shared this on a farce book group page. This List Is Not Complete Please feel free to Message Chat Us with your Email as items on the listing example: ie: were deleted / removed by a healthunlocked admin. The original post keeps getting modified
Shorehousejam
in
Advanced Prostate Cancer
1 year ago
Avoid prescribing desiccated (natural) thyroid extract
The NHS England Specialist Pharmacy Service advice re desiccated thyroid has been updated. Doesn't make much difference! But in case you are interested or need to know, it is linked below. Note that it does NOT say desiccated thyroid
cannot
prescribed. It still contains this bizarre sentence
The NHS England Specialist Pharmacy Service advice re desiccated thyroid has been updated. Doesn't make much difference! But in case you are interested or need to know, it is linked below. Note that it does NOT say desiccated thyroid
cannot
prescribed. It still contains this bizarre sentence
helvella
Thyroid UK
in
Thyroid UK
1 year ago
more about stopping aspirin temporarily
saw my cardiologist yesterday. He took me off bisoprolol — said my heart rate was too slow — and Ticagrelor. Have stopped both, with trepidation re the bisoprolol. He also said he was not keen on me stopping aspirin as he didn’t want my stents to clog up. I pointed out that the advice on this forum was
saw my cardiologist yesterday. He took me off bisoprolol — said my heart rate was too slow — and Ticagrelor. Have stopped both, with trepidation re the bisoprolol. He also said he was not keen on me stopping aspirin as he didn’t want my stents to clog up. I pointed out that the advice on this forum was
Harefieldfan
in
British Heart Foundation
1 year ago
ET and pregnancy
Hello, this is my first post so hello to everyone. I'm 36 years old. Last September, I was diagnosed with the JAK2v617f mutation. I am 28 weeks pregnant and take 150 mg of aspirin a day. Are there any contraindications to giving birth by cesarean section? I have conflicting information from the gynecologist
Hello, this is my first post so hello to everyone. I'm 36 years old. Last September, I was diagnosed with the JAK2v617f mutation. I am 28 weeks pregnant and take 150 mg of aspirin a day. Are there any contraindications to giving birth by cesarean section? I have conflicting information from the gynecologist
bunia8891
in
MPN Voice
1 year ago
medication review and a question
hi all! following advice of my cardiac nurse my meds were reviewed by my GP. I am now on coated Asprin instead of the dispersable one, Bisoprolol 1.25 stopped due to low heart rate and commenced on Propranolol 10mg twice a day to help with the physical symptoms of anxiety. I was on these before my
hi all! following advice of my cardiac nurse my meds were reviewed by my GP. I am now on coated Asprin instead of the dispersable one, Bisoprolol 1.25 stopped due to low heart rate and commenced on Propranolol 10mg twice a day to help with the physical symptoms of anxiety. I was on these before my
Winimops
in
British Heart Foundation
1 year ago
angina
hello I have been getting throat and chest pain when walking . Just been to the dr she said I have angina and given me a spray don’t know how to use it and told to buy aspirin . She will refer me back to the cardiologist. No advice and I was in shock to ask should I stop doing everything until the
hello I have been getting throat and chest pain when walking . Just been to the dr she said I have angina and given me a spray don’t know how to use it and told to buy aspirin . She will refer me back to the cardiologist. No advice and I was in shock to ask should I stop doing everything until the
Mar321
in
British Heart Foundation
1 year ago
Am I at a higher risk from Covid ?
Hi, Ive seen on MPN voice and here that people with an MPN are at a higher risk from Covid. I have ET which is currently being treated with Pegasys and Aspirin. Am I classed as vulnerable? There is an option at work to have a special risk assessment if i am. I didnt ask my consultant and now wont see
Hi, Ive seen on MPN voice and here that people with an MPN are at a higher risk from Covid. I have ET which is currently being treated with Pegasys and Aspirin. Am I classed as vulnerable? There is an option at work to have a special risk assessment if i am. I didnt ask my consultant and now wont see
Scarlett500
in
MPN Voice
1 year ago
Anyone else with consistently rising neutrophils?
My neutrophils have steadily risen from 67 to 78.2% over one year while my lymphocytes have decreased from 17.2 to 12.1%. My overall WBC went from 9 to 11.4. I’m going to bring this up at my next appointment, but thought I’d see if anyone here has had similar numbers. Platelets are at 731. Hematocrit
My neutrophils have steadily risen from 67 to 78.2% over one year while my lymphocytes have decreased from 17.2 to 12.1%. My overall WBC went from 9 to 11.4. I’m going to bring this up at my next appointment, but thought I’d see if anyone here has had similar numbers. Platelets are at 731. Hematocrit
Lena70
in
MPN Voice
1 year ago
Medication
I had a heart attack just overt 12 month s ago. I've been told by my GP to only stop tricagrelor. I don't have high blood pressure or high cholesterol but l still have to take Bisoporol, Rampiril, aspirin and Antrorvastatin l just don't understand why l still need to be taking them. Does that mean l
I had a heart attack just overt 12 month s ago. I've been told by my GP to only stop tricagrelor. I don't have high blood pressure or high cholesterol but l still have to take Bisoporol, Rampiril, aspirin and Antrorvastatin l just don't understand why l still need to be taking them. Does that mean l
Monkey1269
in
British Heart Foundation
1 year ago
Is there a dr at Ninewells who deals with APS?
In Dec 2020 I had what was thought to be a TIA. I mentioned to the stroke nurse that I had tested positive before for lupus anticoagulant and my rheumatologist at the time put me on aspirin. I was told to stop HRT in order to do this. It wasn’t checked again. The stroke nurse prescribed Clopidogrel
In Dec 2020 I had what was thought to be a TIA. I mentioned to the stroke nurse that I had tested positive before for lupus anticoagulant and my rheumatologist at the time put me on aspirin. I was told to stop HRT in order to do this. It wasn’t checked again. The stroke nurse prescribed Clopidogrel
roony13
in
Hughes Syndrome APS Forum
1 year ago
Result, jabs.menopause
Hi all Had my next appointment my platelet count 758 going stay On aspirin 2 day for now next appointment 6 weeks , had my flu/covid jab 2 weeks ago , at moment flu of cold ,cough but it is this time of year , more of a women question not had period 4 months now doctors did me blood test got appointment
Hi all Had my next appointment my platelet count 758 going stay On aspirin 2 day for now next appointment 6 weeks , had my flu/covid jab 2 weeks ago , at moment flu of cold ,cough but it is this time of year , more of a women question not had period 4 months now doctors did me blood test got appointment
Jody00
in
MPN Voice
1 year ago
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