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Posted 9/23/2022 4:49 PM (GMT 0)
Hi everyone, my story: have had chronic fatigue for years, Reynauds, arthritis, non specific chest pains, migraine, vertigo, chronic anaemia and low B12, and a host of smaller things I did not bother the Dr about such as nose and mouth sores, dramatic hair loss, sweats, swollen glands and a face rash. I had an awful attack of vertigo recently and the Dr wanted to do a few neurological tests, I toddled off to see him, I apologised for my cold hand during the 'squeeze my hands ' check and told him I was stressed and the Reynauds had kicked in, I then asked him how I could resolve my face rash which i thought was originally caused by mask wearing and had developed into Rosacea, he took one look at my face and said definitely not Rosacea we will do blood tests. My Ana was cause for 'concern,' I have no idea what it was and have been referred to a rheumatologist, current wait time 58 weeks.
I am already taking prescription drugs of a NSAID, iron, prochloperazine, sumatriptan, I self medicate with B12 capsules, Vit D ( I'm convinced I am a vampire cos the sun dislikes me).
I will be asking questions about small things that will not appear on Google.
Posted 9/23/2022 6:33 PM (GMT 0)
A positive ANA is not a Lupus dx, it could be a number of other things. However, a rheumatologist is absolutely the right Dr to see, and I am astonished at a 58 weeks wait time! That is insane. Where are you?

Finding a Lupus knowledgeable Dr - I suggest checking with the Lupus Org at https://www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

There is also a lot of other information on that website, as well as in the 'Lupus 101' thread here on Healing Well. Best wishes.
Posted 9/24/2022 4:00 PM (GMT 0)
Thank you for the reply, I am in Plymouth, UK. My poor hubby has a 3 year wait to get a plate removed from his arm, so 58 weeks is short lol.
Posted 10/2/2022 5:19 PM (GMT 0)
Hi,
New here. 64 years old. Just diagnosed by follow up blood work ordered by Rheumatologist as I have psoriatic arthritis. Positive for Ana test and then more followup tests that included antibody test which was positive. All other related tests are normal. I don't have most of the lupus symptoms. Only pain in hands - both psoriatic and osteo arthritic changes but not extreme. Sometimes I feel tired but that is a symptom of PSA. Dr. Is surprised at the blood work but prescribed hydroxychloraquin. I don't want to take it. Help.
Posted 10/2/2022 6:03 PM (GMT 0)
What are your concerns about taking it? It inhibits disease progression with very few risks or side effects. Just need an annual eye exam, which most folks over 55-60 should have anyway. Been taking it about 20 years with no issues. Glad to answer any questions you may have.
Posted 10/2/2022 10:01 PM (GMT 0)
Thanks. I am worried about the side effects that I read. I'm not convinced I have lupus so why take this drug without having more of the symptoms. Maybe Im a false positive.
Posted 10/4/2022 2:44 AM (GMT 0)
Jett456, Is there a particular side effect you have read about that you are concerned about? I have been dealing with Lupus and Lupus forums for a very ling time and haven't had anyone ever stop because of side effects, so I'm still wondering what your concern is and if I can help you with it.
Posted 10/4/2022 4:10 AM (GMT 0)
Cardio myopathy for one. There are a lot. It doesn't seem worth the risk if I don't have Lupus. My only symptoms are joint pain It's strange that I am positive for Ana and Antibidy test but none of the other tests. I'm going for a physical at the if the month and want to talk to my primary care doctor. Thanks for being there.🙏
Posted 10/4/2022 6:31 AM (GMT 0)

jett456 said...
Hi,
New here. 64 years old. Just diagnosed by follow up blood work ordered by Rheumatologist as I have psoriatic arthritis. Positive for Ana test and then more followup tests that included antibody test which was positive. All other related tests are normal. I don't have most of the lupus symptoms. Only pain in hands - both psoriatic and osteo arthritic changes but not extreme. Sometimes I feel tired but that is a symptom of PSA. Dr. Is surprised at the blood work but prescribed hydroxychloraquin. I don't want to take it. Help.

Are you on any meds for the psoriatic arthritis? Some of those medications can cause positive ANA test results. That doesn't mean you have lupus.

Even if you're NOT on any meds that can cause a positive ANA, a positive ANA by itself isn't enough to conclude it's lupus. You are right to be a little skeptical. Your rheumatologist should know that.

Lynwood has posted (in other threads?) a list of lupus symptoms. Several are required for a diagnosis.
Posted 10/4/2022 1:16 PM (GMT 0)
I am positive also for Anti ds dna test. I am only taking Montelukast for allergies, occasional alprazolam for help with sleep when anxious and vitamins including high dose of tumeric.
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