Experiences with

Vascular conditions

I am on warfarin and metoprolol for occasional afib bouts these past 5 years,,,recently my warfarin was increased to get a 2.5-3.5 range weekly due to emboli found on my lead pacemaker wire,,,meanwhile,,after 8 weeks at this level,,,I experienced sudden total hearing loss as well as bleeding in my left

I’m totally confused and starving. My doctor told me no vitamin K no dairy no grain. I don’t know what to eat. Vitamin K is in everything!! As of now I’m just on aspirin not Walfin, From what I read I can have 90 mg of vitamin K a day on Wafrin I can’t find anything on aspirin. I don’t know how

I was diagnosed with GCA/PMR in 2017. I had a very slow taper of prednisone since, and now have been off for almost exactly one year. Last month I started to get temporary vision losses ( due to bending over in Yoga). My neuro opthamologist said eyes looked good, and that positional vision loss might

My lumbar spine has major problems. The neurosurgeon wants me to have a major lumbar fusion surgery in the near future. She says it isn't her place to talk me into doing the surgery so it is my choice if I want to "gamble" by delaying the surgery much longer. The surgeon wanted to know what I was taking

Hello everyone, I’m hoping for some advice on dealing with Erythromelalgia. I’m currently self diagnosed but based on my symptoms and it being more common in people with MPN’s I think it’s a given. My hands always have large red patches on the outside of my palms but this doesn’t cause me much trouble

So I have an AF episode about once a month. My worry is my left calf aches a bit today and is a bit swollen. My ankle is also swollen but it squire often like that when it’s warm because of my weight. When I walk there is no pain in my leg and it snot hot or cold to touch. No veins showing through

Hi everyone, I read with interest many of the posts about AF that are similar to my issues and that is seems food is a trigger but mort interestingly I think chemicals in the food. I stopped all alcohol that didn’t seem to help. I eat organic and non GMO exclusively but when I eat at certain restaurants

I take Rivaroxaban and have done so for a couple of years without problem following a pulmonary embolism . My dose was increased to 20mg in December last year when I developed persistent AFib. It is only in the last 2 weeks that I have started to have a problem with a bleeding gum, it’s always in the

My wife has been diagnosed with atrial fibrillation. The diagnosis was made from pulse-rate readings and one ECG taken when she had to undergo two major emergency operations to clear a blocked bowel/GI tract. We are very concerned that the diagnosis is wrong and that having to take Apixaban is a dangerous

Hi all Thanks for taking the team to read on…. As I’ve mentioned in my previous ‘newbie’ post I’m in limbo somewhat as I have what feels like an ever growing list of CTD signs but I’m waiting on my latest blood results and dates for various investigations my rheumatologist has requested. Yet another

Following on from my recent posts had to have scan at hospital this morning,no DVT but have a ruptured Bakers Cyst still not nice to have but better than aDVT,still very painful although I've never heard of it.

Hi there. I've recently been referred to see a Pulmonary Hypertension Consultant (by my Cardiologist, due to signs in the Echo it could be intermediate probability of PH). The appointment with the Pulmonary Hypertension isn't until September (due to NHS waiting times). My question for the group is,

Hello, I am 78, have ET and on Droxia, with platelets in low 600 range. My hematologist insists that I should continue with daily baby aspirin despite USPSTF report of April 26, 2002 suggesting that it may be reasonable to consider discontinuing aspirin use around age 75 years due to little benefit.

Hydrea is still considered by many practitioners as the first choice therapy for ET and PV: Patients treated with HU had a significantly higher risk of developing all second malignancies.. https://onlinelibrary.wiley.com/doi/10.1111/ejh.12787 And https://pubmed.ncbi.nlm.nih.gov/24778065/ This again

Hi has anyone had a dvt diagnosed in the arm and what has their experience been ? Thank you ....most appreciate your responses xxx

I have been on Rivaroxaban for a number of years due to Afib. Just had blood test and my ESR is 60 CRP Normal so GP has added Predisolone to my daily intake. I am certainly worried about interactions and wondered if anyone also on this combination or any experience/thoughts. Thanks

I know that we have very different experiences with our ILD. I had a look on an American PH news site and see that they have been testing an oral spray which has given quite favourable results for PF sufferers. Wonder how long it will take for UK to get it! Here is an extract from the article. It would

Morning, I have a very painful shoulder joint condition which is preventing me carrying on normal life and sleeping. I had a scan yesterday, and was told the best treatment would be to have an ultrasound guided steroid injection. I really want to go for it, but have read that perhaps I shouldn’t S I

Hi all I have ET Jak2+ at 8% platelets 415 diagnosed 2020 and have been taking Hydrea plus aspirin daily. Recently due to side effects of Hydrea my consultant said I could come off the Hydrea for 3 months to see how I felt and then consider retaking it or other options. So have been off Hydrea for

I have vasculitis ANCA and even when in remission have really chronic fatigue, is there anyone else that suffers with this while in remission? I thought it would stop while in remission but it hasn't