T O P
Tazila

I wouldn’t say that lupus is the easiest to diagnose since the average diagnosis time is about 6 years. Lupus also mimics other autoimmune Disorders so by purely focusing on lupus, you may miss something that it’s mimicking if you do have it especially if you are thinking that you have multiple issues. Bloodwork alone won’t always diagnose lupus. The only issues on my bloodwork has been high ESR and CRP, low vitamin D, and meh kidney function, but I have a psoriatic arthritis and lupus diagnosis due to all of the symptoms the Dr could physically see with regards to my bloodwork. The AVISE test can be very helpful. It’s amazing you can order tests online, I feel that many Rheum’s might be taken back (negatively) if a patient came in within six months of seeing them and starter demanding tests but each one is different.


[deleted]

If you have most of the antibodies then i think there’s a good chance. I’m pretty sure if they think hard enough that they can literally find it in my bloods


phillygeekgirl

Above, Tazilla said: *Lupus also mimics other autoimmune Disorders so **by purely focusing on lupus, you may miss something that it’s mimicking** if you do have it especially if you are thinking that you have multiple issues.* I cannot emphasize this enough. Your focus is too narrow. It's entirely possible that it is **not** lupus, and by insisting that it **is** lupus and only focusing on that, you could be missing out on what's actually going on.


[deleted]

I’m lost tho. I just need some treatment. My legs are slightly tingly now and like feel like vibrating


Tazila

Many autoimmune treatments overlap. My sister has psoriatic arthritis yet she has taken plaquinil, methotrexate, and sulfasalazine, which is also prescribed for lupus and considered a type of holy trinity of autoimmune treatment combos. She started with plaq, then they added sulfa to support the plaq, then MTX, then as they upped her MTX, they lowered and stopped her plaq. It’s a process, but many treatments overlap, you shouldn’t be held back on treatments due to a lack of diagnosis because there are very very few lupus -only- treatments, and those are biologics. Everything else can cover a broad umbrella. I’m curious what treatment you’re expecting, you’ve only been on plaqinel for almost 3 months. That is a basic starter, the meds will increase with the symptoms, not the diagnosis, if the meds increase because of your bloodwork it’ll be because they can see flares happening in your bloodwork. Please talk to your doctor, and understand that a diagnosis does not lead to more medication in all cases of your symptoms don’t support it. There are people who’s symptoms support more meds that don’t even have concrete diagnosis yet, but their symptoms are undeniable. Also note that the coombs test is mostly research based associating it with SLE, and the connection is 22% in some studies. As a note if you search Coombs on this lupus Reddit you will find that you’re the only persons who has mentioned it, which I would assume means that this isn’t a normal lupus related test. Look into the diagnostic criteria of Australia. Talk to your doctor.


throwaway13022022

Exactly. They actually can’t use aggressive treatment at first, unless there is an obvious need for it like obvious signs of organ damage. They always start with a mild treatment to make sure the patient tolerates it. They then can increase treatment if needed. Plaquenil takes around 6-7 months to work. More aggressive treatment come with side effect or becoming resistant to the treatments (like steroids) it’s better to avoid anything that isn’t 100% necessary. Another example (not lupus related but one diagnosis I have) my doctor was initially reluctant to put me on metformin. I convinced her to let me try it. She tried me on the lowest dose and short-release. Once she knew I tolerated it and it actually helped me, she upped my dosage and put me on extended release. This is how it works with any chronic disease management. The doctors’ goal is long-term management, including making sure patients tolerate medication. There’s no magic pill. If they start doing aggressive treatments with no sign of organ damage etc, they can lose their practicing licence. They are not allowed to go ham with heavy meds, surgery etc. If a patient was to experience negative consequences they could get sued and lose their licence. Doctors err on the side of caution.


throwaway13022022

What tests do you think you haven’t had? Might be good to start with tests you have had as I’m sure your doctors would’ve done quite a few. Not to mention, your symptoms you mention could be explained by UCTD. Unless they see something really specific or organ damage, they are unlikely to change the treatment or the diagnosis. Coombs test is okay but really if your red blood cell count is fine it’s probably not much out of range. Coombs test won’t be a smoking gun for you to try stronger treatment. Aggressive treatment is mostly for signs of organ damage. Organ damage is the main concern and generally the main reason heavy treatments are used in autoimmune disease. They will not give you stronger treatment for fatigue because you haven’t really even been on plaquenil for 4 months. It takes 6-7 months to see effects. The stronger treatment has a lot of side effects and could make you quite sick. Probably lot of nausea, vomiting, pain, risk of serious illness and Infections. You’ve also said in another post you are probably underweight (48kg) so this could make you even more underweight if it affects your ability to keep food down. They are not gonna give that because someone has fatigue. They are not allowed to play around with strong meds. Do you think they can give someone aggressive treatment because of fatigue? They can lose their licence. Not to mention, such medications are not really effective for fatigue. One reason cos such medication causes fatigue etc. Even when not in a flare, fatigue is pretty constant and is often treated through lifestyle choices. Resting, eating well, gentle exercise etc. If your doctors detect lifestyle factors could contribute to symptoms such as fatigue without clinical evidence of something else happening, they are more likely to recommend lifestyle changes before medical treatment. All patients start on lowest dose meds as the body needs to get used to the medication. Taking higher doses of meds in a short space of time won’t actually help your body.


[deleted]

It’s would be impacting my brain. Idk if it’s lupus or not. My legs have started to be tingly and occasionally a vibrating sensation will happen


throwaway13022022

Autoimmune brain disorders(including lupus brain involvement) are very rare. But if this was occurring, the most common features would be seizures and psychosis. Unless you’re having seizures or something, or they can see brain inflammation on your scans, not much evidence of brain involvement.


[deleted]

Well that’s not good. My brain is damaged from childhood complications. I’m 22 now. It would be likely it can be affected


throwaway13022022

Sorry but your brain being damaged doesn’t mean you are more susceptible to an autoimmune disease attacking your brain from what i’m aware. You may have an autoimmune disease but being sick can make the brain damage more apparent


SnooMacaroons3823

If this is a new symptom, you need to discuss it with a doctor ASAP. There are many other diseases (some serious) that would need to be ruled out.


[deleted]

I don’t even keep track of symptoms anymore. I am just sick


MCASPOTShEDS

Have you looked into MCAS at all?


[deleted]

No. What’s it about?


MCASPOTShEDS

Well it matches just about all of your symptoms, but it's way more rare than lupus so you may not have it. You can learn more about it at /r/MCAS Edit: MCAS tends to co-occur with Ehlers Danlos syndrome and POTS, so if you don't see a symptom you have listed under MCAS be sure to check the symptoms of Ehlers Danlos and POTS @ /r/EhlersDanlos and /r/POTS


[deleted]

Thanks. I’ll see


MCASPOTShEDS

Since I know how hard it can be to click the right links and find information sometimes I copied some of the symptoms out for you: POTS: High blood pressure/low blood pressure. High/low heart rate; racing heart rate. Chest pain. Dizziness/lightheadedness especially in standing up, prolonged standing in one position, or long walks. Fainting or near-fainting. Exhaustion/fatigue. Abdominal pain and bloating, nausea. Temperature deregulation (hot or cold). Nervous, jittery feeling. Forgetfulness and trouble focusing (brain fog). Blurred vision. Headaches and body pain/aches (may feel flu-like); neck pain. Insomnia and frequent awakenings from sleep, chest pain and racing heart rate during sleep, excessive sweating. Shakiness/tremors especially with adrenaline surges. Discoloration of feet and hands. Exercise intolerance. Excessive or lack of sweating. Diarrhea and/or constipation. MCAS: skin: itching, flushing, hives, sweating, swelling, rash eyes: irritation, itching, watering nose: itching, running mouth and throat: itching, swelling in your tongue or lips, swelling in your throat lungs: trouble breathing, wheezing heart and blood vessels: low blood pressure, rapid heart rate stomach and intestines: cramping, nausea, diarrhea, abdominal pain nervous system: headache, confusion, fatigue Eller Danlos: swallow difficulties and sluggish stomach and large bowel, causing nausea, vomiting, acid reflux, bloating, pain, and absorption and food intolerance concerns; autonomic disturbances of heart rate and blood pressure, bowel and bladder function, and temperature regulation; anxiety, depression, and phobias; and organ / systemic inflammation related to mast cell activation. And remember that while it's possible to just have just one or two, most people have all 3 together. Good luck and I hope you find some answers soon.


[deleted]

Thank you


sneakpeekbot

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phillygeekgirl

The [pinned comment in the weekly thread](https://reddit.com/r/lupus/comments/widf8a/weekly_suspected_lupus_thread_week_of_august_07/) has a list of blood tests used to diagnose lupus.


[deleted]

Oh thanks. I’m ordering Coombs test just forgot what else. In Australia they think if you don’t have dsdna and ena, you don’t have lupus. Silly I know. My bloods speak for themselves but I’m gonna find something else to make it stand out a bit more


MissDaisy01

It took me about 11 years to get an RA diagnosis and about 2 years later my lupus diagnosis. It was a long haul. Today, I take Plaquenil and that’s it. Rhupus is considered a rare disorder which is probably why it took so long. I do have RA and Lupus antibodies which helped with my diagnosis.


[deleted]

Omg. You’d think they’d do more based on the decreasing lymphocytes


MissDaisy01

This is a normal outcome of lupus. Most doctors don't worry too much about lymphocytes as they do about neutrophils. I'm very happy using Plaquenil, as it works, and it's pretty neutral about side effects. The only thing you have to be careful of is the plaquenil causing retinal damage. It's pretty rare and the best way to detect is by going for regular eye exams which I do. Getting a diagnosis is often a long diagnosis. I thought I had lupus for many years based on symptoms as I was photosensitive, had a Malar rash, leukopenia, was anemic one time and had two mildly positive ANAs. All those things fit the box for lupus. I was diagnosed with Rheumatoid Arthritis as I had the markers for that. Later I was tested for anti-DSDNA and came up positive for that too. This took a long time and a doctor willing to think out of the box. I was then diagnosed with lupus. In fairness, Rhupus (technically autoimmune overlap syndrome) is pretty rare. Approximately 1 percent of the RA population will have both lupus and RA. I'm sure this is more than you wanted to know. Wishing you all the best.


[deleted]

I only have ANA antibody. So annoying


MissDaisy01

Not every lupus patient will have anti-dsdna. It's fairly common but not 100 percent. A good analogy is not every RA patient will have anti-CCP and RF. Most will have one or the other. You can be diagnosed for RA without either and that's called seronegative RA. My sister was like that for a very long time. She has now tested positive for both.