Hi, I’ve posted previously about my many symptoms & disappointing medical apts.
Last week for the first time in 7 years a rheumatologist finally said, I think it’s lupus!
My ANA is 1:320 homogeneous, my double strand is negative ( 16) however I have rash especially after sun exposure,
Raynaurds, freezing cold all the time, chilblains, mouth ulcers, dry tongue, dry skin, fatigue!! The worse symptom by far, memory loss, hair loss at the front of hairline is a new one? About the size of a 10p coin?
Muscle aches, MRI of hips showed an osteoma in femoral neck? Swollen lymph nodes.... the list goes on 😆 also spasms in lips & eyes & my lower lip is always a bit ‘fuzzy feeling’? I don’t really know how to describe it?
I’m booked in again in 4 weeks for more tests
But the doctor was still quite dismissive & said oh it’s fine we’ll start you on hydroxy & then you can carry on with life??
Any advice please from users of this medication & any more questions etc that people think I should be asking please??
Many thanks
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Frenchfancy
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Hydroxy is the foundation if you like of treatment I've been on it for 4 years now.eye tests are essential you must get them tested before you start it and every year as hydroxy can cause a rare condition called retinal toxicity. High Street opticians can do an OCT test. Some hospitals do the Cambridge colour test but this doesn't appear to be offered very often 🤷♀️Hydroxy may help with some symptoms but it takes months to work 2 months to start to work 6 months for full effect.
Side effects for me were headaches and Nausea which lasted about 4 weeks. Good luck .kind regards SML x
You have struggled for a long time. You almost seem like a textbook case of how patients go years being worked up and watched and then finally there is enough evidence to know there is an autoimmune disease. I wondered if things were going to change after the GP diagnosed the synovitis in your hands.
You sort of knew the fibromyalgia diagnosis was not explaining all of your symptoms. Good you stayed on top of things and communicated new symptoms.
It may be hard to take it all in. Seven years is a long time. Such an emotionally hard thing about these diseases.
Best of luck. Hoping your treatment gets you to feeling much better.
Hi Frenchfancy, congrats on getting a diagnosis! What a painful 7 years you have been through. (My diagnosis took 8 years, so well done to you!)
Hydroxy can help with a range of symptoms…mine is chiefly helping with skin sores and rashes, no benefit to joint pain or fatigue yet, however, it’s only been a few months. I haven’t hit the 6-month ‘full potency’ point yet.
In terms of ‘carrying on with life…’ well, some can, some do to a limited degree, and some cannot. We are all unique, and the experience of lupus is unique from person to person. See how you go. But also don’t be afraid to ask your doctor some Plan B questions, like ‘If hydroxy doesn’t work, what are some other options?’ It helps to have all the available information. All the best 💛🌻🌈
Hello.I started on Hydroxy. I had side effects more or less straight away with my eyes being very painfull and heavy feeling ,so stopped treatment immediately.
I would ask the Doctor about Hydroxy,if there are any alternatives.
That's amazing that you have finally got a diagnoses. Can I ask what you did in the 7 years? Did you just continue to go back to the GP and ask to be re-tested? What does the ANA results have to be before they take you seriously. I have also been diagnosed with fibromyalgia and FND, but the symptoms of both are really all the symptoms of lupus.
I'm new to all this and would really appreciate any help anyone has to give.
Hi mymittens.you may be better doing your own post about this.it took 5 years for me to get a diagnosis and I just kept going in and out of hospital with breathing issues and around drs and my gp until I finally got a referral to Rheumatology in 2018.ANA can be tricky as some won't see you without a positive DS-dna result.whilst most with lupus have positive ANA a percentage of the population are positive without having lupus.blood results can also flit between positive and negative.they need to look at the whole of you not just lab results on paper.for me as well as joint pain,morning stiffness etc it was my kidneys that flagged up issues and lupus was confirmed by a kidney biopsy on 2018.there is an 11 point criteria you may find helpful and keep a diary of symptoms and pics of rashes,mouth sores etc. Best wishes SML X
It sounded as if you were asking help from all of us. Each case is different. Lots of people start out with a diagnosis of fibromyalgia or chronic fatigue with a positive ANA. Then, over time, more symptoms develop. In Frenchfancy’s case, her GP noted swollen joints in her hands. He was alert, knew her history and sent her back to the rheumatologist. So unfortunate the way these illnesses develop slowly sometimes.
Could you tell us your symptoms and bloodwork? It is always a constellation of symptoms and other features that leads to a diagnosis. So the question isn’t just how high the ANA needs to be.
I can hear you have struggled with these two diagnoses.
My contribution.when I was feeling dismissed in the face of a compelling clinical picture was to ask the Rheumatologist to say WHY !!!!! Do you say I haven’t got lupus .
Hydroxy is often used as an initial treatment whilst they do more tests and see how you react. I started on that and then methotrexate was added at the next visit three months later.
Here is a link to the lupus uk site page on treatments
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Update... change in diagnosis... 
Change of diagnosis 😲
osteopenia diagnosis
How do I get a diagnosis?
Diagnosis update for you all nearly a year on
