Experiences with

Alna

Hi all Basically I am looking for some advice and experiences from those who are both medicated and unmedicated. I got diagnosed with lupus dec 2023. Following a summer where I must of been experiencing a flare. A lot of skin issues/rashes, mouth/nose sores, hair loss, eye problems, positive ANA and

Hi all Basically I am looking for some advice and experiences from those who are both medicated and unmedicated. I got diagnosed with lupus dec 2023. Following a summer where I must of been experiencing a flare. A lot of skin issues/rashes, mouth/nose sores, hair loss, eye problems, positive ANA and

Hi all, 6 months ago my ANA test result was 1:2560 and the same test result last week was 1:320. This seems like a massive difference / improvement to my untrained brain but my rheumatologist was very vague about it. Can anyone shed any light on what it means? Thanks

Good morning everyone 😊 I had rituximab last in spring 2020 (my first ever) and this last winter I've had a flare up of my symptoms. Some of my symptoms are quite painful, such as my hands/fingers and knees and a rash on my face, neck, arm, toes. My SLEDAI was rated as 10 when I was in clinic and I've

My inflammation is a stubborn arse. I was at 19 on 20mg and Dr told me to taper. I got to 10 mg and my marker went to 34. Now he is pushing Actemra, although I’ve had cancer, and I have diverticulosis. My ESR has always been normal. I’ve had 2 positive ANA tests as well. It’s so weird that as

Hi, I have a Rheumatology appointment soon following a bad case of chilblains which I've had for nearly 2 months on my toes and heels, now ending up with brown think skin developing on some toes which the GP thought looked necrotic at the time, and all toes are usually purple/black looking now. I take

Hi, I am struggling a little since I was diagnosed with scleroderma last year and looking for a little bit of advice. My story behind the diagnosis was due to routine bloods showing I had extremely low ferritin levels causing iron defiency anaemia, which led to iron infusions and emergency endoscopy

Has anyone had this, or know someone who developed a rash that just never went away and won't disappear with topical treatment? It's blanching, flat, smooth to touch (no scaliness at all), doesn't itch, hurt or burn. Several rashes are spread around mostly on my back, bottom, and thighs, largest is 3cm

diagnosed conditions: Sero negative rheumatoid arthritis since 13 years old - carpal tunnel syndrome - reynauds’s - malignant melanoma x 2 (2015 & 2023), ischemic stroke (2023) GP blood results in October 24 indicative of SLE and Sjögren’s - rheumatologist refused to see me - upon pressure from GP

hi all! So I’ve had some joint pain issues for a few years and thought I might have EDS. I saw a physiotherapist who requested a blood sample from my GP to test for some possible inflammation. I was ANA positive but ENA negative. My GP then referred me to a rheumatologist who I saw today he confirmed

Hey all!!!!! I was diagnosed with lupus in November 2023 in Sri Lanka after consulting three rheumatology specialists. They confirmed the diagnosis, and I was prescribed medications, including methylprednisolone, methotrexate, and hydroxychloroquine. Recently, I moved to the UK and started consulting

Hey all!!!!! I was diagnosed with lupus in November 2023 in Sri Lanka after consulting three rheumatology specialists. They confirmed the diagnosis, and I was prescribed medications, including methylprednisolone, methotrexate, and hydroxychloroquine. Recently, I moved to the UK and started consulting

Spoke to gp today, she refuses to send me to rheumatology as I don't have a rash!! Says it's requirement. I told her not everyone gets a rash she said 80% do I said what if I'm the 20%? Told her I'm fed up of this hurting everyday, just come out a 3 week bad flare of horrendous joint pain, mouth ulcers

The rest of my test results were posted this morning on my blood lab report. The ANA SCREEN , IFA , w/REFL TITTER and Pattern were Positive. ANA TITTER high at 1:320 Nuclear Nucleolar pattern scleroderma , polymyositis , and Sjögren’s syndrome ANA TITER low 1:40

Hi I wasHi I'm new here looking for advice please 🙏 Was diagnosed with fibromyalgia in October by neurologist. However I've had joint pains evry day and stiffness worsening, ulcers in my mouth recurring to point I can't eat because of the pain. Dr ordered bloods 3 weeks ago and was ANA positive 1.100

I’ve suffered from knee, bilateral hip, and ankle pain for a few years. Lately the hip pain radiates laterally down my leg to my ankles. Sometimes it takes me a few to be able to walk when I wake up. I have had the full Lupus Work up by labs. A year ago. I have positive ANA and 2/3 positive Anticardiolipin

I have tested positive for ANA and ds-DNA several times but always negative for ENA through NHS. I paid for a private blood test that gave me a titre 1:320 and speckled pattern but my rheumatologist refuses to see me again after fibromyalgia diagnosis. This year I paid to be seen by a private dermatologist

so I went to the rheumatologist today. after explaining aches , skin changes , other little symptoms like putting edema , headaches and such .. he does a physical exam on my , looks at hyper mobility but tells me I don’t meet criteria for fibromyalgia… which I didn’t think I would anyways lol. examines

Well, yesterday’s visit didn’t go as expected. My GP seems to think my positive ANA & positive AMA relate to 2 separate issues. So I’ve been referred to rheumatology for my ANA, (lupus) now also gastroenterologist for my AMA (liver). On top of that I now wear a 24 hr BP monitor as my blood pressure was

Good Morning all, Hope you are all well. I am currently experiencing Sjögren symptoms, Dry eyes ,nasal passage , mouth and other areas, outside of eyes skin very dry,cracked and sore. I went to the optician who said my eyes were very dry and advised drops and heat packs, also to go to Dr for diagnosis