Experiences with

Vascular conditions

Has anyone got any experience of managing fatigue during palliative care? My mum is struggling so much with fatigue and we are getting conflicting advice. She is on a blood thinner (Apixaban) after a blood clot which has now cleared. Her oncologist wants her to have a steroid (Dexamethasone) and has

Most mornings I experience anxiety upon waking up. Quite often I experience anxiety in my dreams. however, this clears within about an hour as I take 1mg Lorazepam first thing. I feel okay, anxiety-wise, for the rest of the day. Would switching my Lorazepam to bed time prevent my anxiety problem? (

I've been taking Rivaroxaban for over 5 years and continue to notice some bleeding of the gums when brushing my teeth and when blowing my nose 3-4 hours after taking it. I have spoken to my GP who seemed generally unconcerned and mentioned the option of changing to Apixaban. I've also noticed that I'm

Good morning everyone. I recently posted another post. And was telling you guys in that post that I was going to go get checked out. A quick little reminder I was diagnosed in November of 2018 with a dvt and pe. I've been taking warfarin since then. I started having some knee pain around June and didn't

Hello everyone. I am new here, but I am not new to living with aps. I've had it now for almost 6yrs and I continue to read about it and try to learn. I was diagnosed with a dvt in my leg and after be admitted into the hospital they found i had a pulmonary embolism as well. Very scary stuff. I read that

Hi all, I am just putting this out there to see what people’s opinions are of a recent request I made for a GP to visit. My husband is end stage CBD and familial FTD. I choose to care for him at home, he needs all care but is still aware of me and still watches TV. Last week he was very drowsy and we

hi all, any recommendations please for Raynauds hands with painful tissue scarring? I’ve had it quite badly this year and have succumbed to being medicated this coming winter. I feel like I’m only a few showers away from a digital ulcer as the scarring is quite bad and tender. (Also read a few posts

In 5 years of taking Apixaban 5mgs twice a day, I have never had any evidence of unusual bleeding. No bruising beyond expected, no nosebleeds after blowing my nose, no bleeding after having blood taken. I took warfarin before Apixaban and I had all of those with warfarin. So I wonder whether I may be

After my latest rheumatologist telephone appointment, he suggested that I had an iloprost infusion for my Raynauds as for some reason, I seem to be feeling the cold much more just lately. I was wondering if anyone had had this treatment and if it helped any, any side effects & what I should expect. 😊

Hi Looking for travel insurance for trip.to Guernsey in June 2025,it has been a while since we left the UK for a holiday . Has anyone got a recommendation? I had an ablation June 2022, 98% successful. I am still on flecanide and apixaban to maintain. Husband has well controlled type 2 diabetes and

Hello, I am at the start of my journey having been diagnosed with ET, (CalcR), on 15th August this year. I commenced hydroxycarbamide 500mgs daily on 17th September. My first bloods were done on 24th October with my 1s f/u appt with the haematologist consultant today. My platelets have fallen very

Hi all has anyone experienced this, was diagnosed with it following chest pains which I thought GP thought was my heart , thankfully my Heart is fine and turns out to be this instead... Anyone else experienced it, any advice greatly received.

I found these charts on a John Mandrola blog a couple of years back & took screenshots. I came across them last night when I was clearing up my photos folder & thought others might find them of interest, particularly those people worried about stopping an anticoagulant for a few days for surgery or a

Hi everyone! Does CoQ10 or NAD+ interfere with Hydroxyurea and aspirin? Love this group.

Abstract Myeloproliferative neoplasms (MPN) are blood cancers that appear after acquiring a driver mutation in a hematopoietic stem cell. These hematological malignancies result in the overproduction of mature blood cells and, if not treated, induce a risk of cardiovascular events and thrombosis. Pegylated

I went yesterday for another CT scan and although there has been no change in the size, both surgeons agreed that because of my GCA and family history, that they (and I), feel a better outcome would involve surgery. So I am scheduled for open heart surgery at the end of January. Even though I am

hi...haven't posted in a while. Confused. Last year sited emphesyma this year didn't but " new areas of subsegmental mucus plugging" ( what do I do for that)? And " mildly dilated pulmonary artery suggesting pulmonary hypertension". In past they also noted bronchioecstasis and hyper inflated lungs.Can

Hi I have Raynaud's as a consequence of scleroderma. Still having tests to pin down whether any of my internal organs are affected. For the last 15 months I have had an ulcer on one of my fingers which is refusing to heal. Today my consultant prescribed sildenafil to hopefully accelerate the healing

Was first dx with pmr (2018) and given lots of prednisone. Then gca was added with infusions of actemra. The prednisone was making me feel better. Nodules in my lungs were growing and in Sept of 23, I had a bronchoscopy and granulomas showed up. So gpa was dx. Now on rituxin, still on 7mg prednisone

Good morning all! I have a question. Does anyone else experience sporadic air intake. It happens sporadically throughout my day. It occurred to me to try to find an answer as it's happened several times this morning while at work. It reminds me of when a child can't catch their breath from a crying