Should I get second opinion? Rheumy not convinced.

[Nasty_Tony]

TLDR: Rheumy says I should not worry about ANA 320, positive histone antibodies, borderline DFS70 and low C4 because clinical symptoms are missing or mild. Should I still get second opinion few months later?

Whole story:

Couple years ago my ENT put me to sublingual allergy immunotheraphy based on my hay allergy and chronic sinus issues. Allergy immunotheraphy pill was Grazax (Grastek in USA). Soon after starting Grazax I got almost all possible side effects, red throat/pharynx, congestion, GERD etc. I took antihistamine everyday but only congestion went away, still got redness in mouth, GI issues couple times even quite severe diarrhea attacks etc.

After 5 months of Grazax my right side salivary glands inflamed, I started to feel facial tingling and burning spreading to left side of face. ENT checked my throat, salivary glands and sinuses, prescribed antibiotics for mild salivary gland infection and recommended PPIs for heartburns. Then I discontinued using Grazax.

Antibiotics cleared inflammation but face tingling/burning continued a bit milder. I even felt couple times trigeminal nerve shocks on left side face. Month after quitting Grazax my salivary glands and neck lymph nodes were ultrasounded but nothing found. Lymph nodes were just bit reactive as they should be because sublingual immunotheraphy affects body thru nodes.

After quitting Grazax salivary gland issues calmed, but never went completly off. Next I started abdominal pain, loose stools with undigested food etc. I guessed they are because of previous antibiotics and ongoing PPIs so I quit PPIs. 5 months after Grazax GI issues still continued and I also developed non bacterial prostatitis. ENT, GPs and urologist told just to relax and give body time to recover from Grazax. My anxiety was huge and one day my whole body started to tremor slightly. Went to neurologist who said my nerveous system is overactive and tremor is psychological thing. Neurologist still wanted to check my ANA because of my since child started sinus issues and family history of autoimmune conditions. Surprisingly my ANA was positive titre 1:1000. ENA panel showed anti-dna and histone antibodies.

Next I went to rheumatologist who thought I might have mild or starting Sjogrens triggered by Grazax immunotheraphy, even if my ENA profile is more (drug induced) Lupus like. He said my current symptoms and long history of sinus issues fits better Sjogrens. Rheumatologist wanted to wait few months and check ANA and ENA again. After 3 months ANA was 1:320 only histone antibodies present. Other blood tests and Schirmers test for tears were normal. Because I lack clear symptoms of autoimmune disease rheumatologist wanted to wait and see, he advised me to go gastroenterologist about GI issues and because of my family background (dad has IBD).

Gastro thought I have IBS because stool calpro, elastane and lower abdomen MRI were normal. Prostate was also normal sized. After few months I finally had gastroscopy and colonscopy after gastritis-like-episode. Stomach lining was slight red like watermelon pattern but no bleeding, GERD was found, but biopsies fine.

Colonscopy there was also redness and biopsies showed multiple Peyers patches on large intestines (usually they are found mostly small intestine). Rectum was also slighlty red with few apthous like lesions and hazy area which could be caused prep drink taken before examination. So no tumors, no polyps, no IBD related findings.

Gastro said that Peyers patches can be related to allergic reaction, but because there was over year quitting Grazax it might be cross allergic reaction to some food. Now I have been tested for 85 different food, grains, nuts and pollen, but only hay was positive like it should be.

Now I had again appointment with my rheumatologist who thinks I do not have autoimmune disease. ANA is 1:320, histone antibody still positive, DFS70 borderline. C4 a bit below range, C3 normal. Rheumy said that I should just wait and see how things develop in the future and maybe just focus GI issues which bother me most. But is this normal to just wait for more severe symptoms or should I get second opinion?

My current symptoms are quite mild, some appears all the time, some symptoms fluctuate but never goes 100% away:

-mild redness on cheeks and nose. I do have seborrhea.

-burping(*), heartburns.

-blood MCHC was bit high for 2 months, now normal

-hemoglobin fluctuate inside normal range.

-ANA borderline 1:320, histone antibody positive, DFS70 borderline.

-C4 complement is below range 0.11 g/l (range 0.12 - 0.34 g/l). C3 normal.

-right side facial burning(*)

-right corner of mouth burning and sometimes tingling(*) usually near salivary glands under tongue. Tongue also burns almost constanly.

-geographic tongue(*).

-prostatitis(*). This is now calmed a lot.

-dizziness.

-brain fog(*).

-some fatigue(*).

-sinus issues, green dry mucous.

-severe post nasal drip.

-cracking joints, almost all!joints. My joints are bit hypermobile. But now they crack even more.

-lumbar and SI joint pain right side. Could radiate to abdomen.

-abdominal pain(*) sharper pain lower right side.

-general IBS like symptoms like bloating are triggered by some foods mostly veggies and FODMAPs.

-face feels hot if stomach is upset(*).

-atopic skin.

-rectal pain time to time(*).

-hemorroids, some bright blood in stool time to time(*).

-tension neck and minor head ache(*).

-health anxiety.

-very mild tremor(*) especially when anxious.

-asthma-like condition since 2019.

-some muscle and joint pain no swelling.

-spinal disc issues for years.

-mouth ulcers and cuts. One day my uvula started to bleed after eating.

-throat red and small veins more visible inside cheecks, throat, gums, palate(*).

-possible leaky gut?(*).

-foamy urine over a year (*),no protein found 24h test or multiple dipstick tests

* = symptom appeared first time during or after Grazax.

Background: male 37yo, scandinavian. Sinusitis issues since a kid, mostly swollen membranes, throat issues, sinus FESS 2015, lumbar spine MRI 2019, neck MRI 2022.

Meds: Using nasal steroid sprays

Family history of IBD (dad).

[Tanitani]

If the symptoms are mild then your rheumatologist could try a mild therapy like plaquenil and see if that helps, if it help then you could deduct your symptoms are due to autoimmunity. I also suggest to try dealing w anxiety as that could complicate the symptoms and very much recovery. Body under atress cannot heal well. I could understand how super hard that would be in your situation but maybe visiting a therapist specialized in adjustment to a disease or some mild medication for anxiety could help. That could help you think more clearly and make proper decisions. If you have an opportunity to get a second opinion, why not? Can't hurt, hopefully.

[Nasty_Tony in reply to Tanitani]

At some point I tried nortriptyl for 3 weeks but I quit it because I was zombie-like and got one episode of really low blood sugars. Blood sugar tests are normal so I guess it was nortriptyl side effects. Have not seen actual therapist but that might be good. I’m already seeing psychofysiological physiotherapist who helps me to calm. I also have a lot structural issues on my body, like flat feet which clearly cause lower back issues then problems with back, so cycle is ready.

[KayHimm]

Frustrating but, yes, normal. I was on the “watch and wait and see” plan. It is a tough call - over- diagnosis has risks and under-diagnosis has risks. The important thing is to be monitored. You have a lot of issues that need to be addressed.

One question you could ask your doctors is what could be the risk and benefit of treating for presumed autoimmune disease. They should give you a straight answer.

Your question is a good one. They do use Plaquenil to prevent organ damage with lupus. Many patients with other autoimmune disease are on it too. I have UCTD and have never been on it. There are always risks.

Hope you get treatment soon.

K

[Nasty_Tony]

Yeah I’m kind a autoimmune mess but borderline mess so I’m not easy to diagnose😁 Most of my issues are slowly going somehow better direction. Rheumy said my case is really unusual and I react strongly to all immune system irritants. I even had horrible side effects from covid vaccines. I had mostly GI issues, like almost gastritis and it took always like 1-2 months to recover jabs.

[KayHimm in reply to Nasty_Tony]

Sounds like they get you. That’s actually a good thing. I am similar in that I have hyper-response nerves, an inflammatory aspect of neuropathy.

We all want to be out into a diagnostic box but that isn’t good either. The immune system is complicated and individual. Good rheumatologists do not rush to diagnosis. They can still treat symptoms. That is more important.

Message me if you want to talk share our triggers. So glad you are moving in a good direction.

[Nasty_Tony]

I really have thought my issues are somehow related to GI because my problems started with GI issues and still are mostly related to GI. I have read much about leaky gut theory and that matches greatly for my symptoms.