Experiences with

Alna

Hi there, I was diagnosed with PBC just over two years ago, which was such a shock to me me as I had no idea about this condition (only visited doctor for a routine check-up 😧!!) Have been on Urso ( 2 years) but my ALP and GGT are still high!! Had biopsy and fibroscan 10.1 Specialist says I am

Hi all just looking for some advice if possible please. Has anyone had lupus diagnosed without a positive ana ? I have all the symptoms aside from swelling but the rheumatologist has now diagnosed fibromyalgia due to no positive ana. My liver enzymes have been raised since 2014 and I've been having symptoms

My ANA was negative but asking biopsy was positive for interface dermatitis ???? the skin doctor said possibly cutaneous lupus. Is it possible to have it on skin only and not in the blood?

I've given it a good try with the HCQ, no doubt it works as well, but for me with lupus brain damage, traumatic brain injury and a previous brain haemorrhage setting off seizures last year, as many of you know, the HCQ is unfortunately causing too many seizures by reducing my seizure threshold. After

The kind of "Lift" I'm referring to is the type that you could do with if you have had a night of Afib or disturbed sleep. Sometimes this can leave me a bit jaded and having a daytime nap is not always an option or an answer for that matter. Although I was told not to take "Alka-Seltzer XS, it was never

I am ANA positive plus Ds DNA (May be spelled wrong !) also pretty severe Raynauds. I also have what appears to be a Malar Rash.My Rheumy has referred me to dermatology but the wait time is incredibly long/ Have any of you sought a private Dermatologist ? I feel my treatment/care plan is at a standstill

Hello, All! Yesterday had my first in-person visit with my rheumatologist in a year and a half. I handed him a 3- page synopsis of all my joint and related issues (only because I would kick myself later for having forgotten certain points!), and had an alarming number of vials of blood drawn. Most

Hi, i have had fibromyalgia for 6 years now however i have now started to experience swelling of toes and hands and suffering pain in arm, shoulder and collar bone with pins and needles in my right arm consistently now since Christmas day. I have had Rheumatoid tests run which have come back clear however

I had the Astrazeneca in March, & have has a scary time with serious adverse reactions. I'm now seeing a brilliant homeopath & my energy levles were so low he gave me a thyroid remedy, it improved them, he stopped it as levels were good, then they slumped again...So I'm back on his thyroid remedies &

Hi There, Hoping there may be someone in this group that may unfortunately be in a similar situation and can shed some light on what’s going on I’m a 26yo female, I have been experiencing a combination of strange neurological and pain symptoms for the last few years which I have never had previously

Hi 👋 Just putting this out there to see if my anyone can relate to my symptoms. I’ve had various symptoms over the last 2 years, I won’t bore you with all of them but….digestive/stomach issues, fatigue, swollen lymph nodes in my neck, severe headaches/migraines, achy jaw/cheek bones, facial flushing

Hi Can anyone help explain what the result below means? And how do you address a positive antinuclear antibody result when having IVF? - is it blood thinners or steroids or something else? Antinuclear antibodies - Positive - Titre 1:80, Nuclear dots Thank you xx

Hello, I’m at my wits end now with my diagnosis journey. I am sick of doctors looking at me like Im some kind of hypochondriac and dismissing all of my symptoms, telling me there is nothing wrong with me when quite clearly there is. My only assumption is that I just haven’t found the right consultant

Does Interferon Alfa 2a (Pegasus) cost $1000 for 180mcg/ml ?? Without insurance?

I’ve been months without any symptoms of PBC. No fatigue or joint pain. No brain fog at all! Back to normal before this ever came up. Then this past week after my son had the stomach flu and I had several sleepless nights and BAM!!My symptoms are back. I haven’t been diagnosed Bc I declined the liver

Hi all, I’m on peginterferon Alfa-2a for ET and a few weeks ago my dose was increased to 180mg. The hospital pharmacy deliver my medication and I can only assume they’ve ran out of 180mg syringes as I’ve been sent about 8 boxes of 90mg pre filled syringes meaning I’m expected to do 2 injections after

Hi everyone, I spoke to my rheumatologist yesterday and had a very odd conversation with him, although he’s quite pleased with my progress re GCA he now wants me to start on a treatment used for lupus, apparently I have very high levels of antibodies, ANA positive, I thought high levels was a good thing

Just wondering if anyone has a negative ana but still has scleroderma? My hands have started showing symptoms but my ana test a couple months ago was negative..

I’ve recently had a letter saying I’ve had a weakly Positive ANA blood test result with an anticentromere pattern. Does anyone know what this means. I’ve not got my appointment until 24th December when I go back to see the rheumatologist. Any help or advice would be really appreciated in lots of pain

Hello, I'm new here. I have an appointment with rheumatology on Saturday, and would love some advice on how to prepare for it fully. I've been referred because a recurrent miscarriage clinic picked up a positive ANA test- the repeat test was also positive (a weak positive.) I have struggled with joint