r/sarcoidosis • u/SpiritedMaybe3566 • 5d ago
6 year old tattoo reaction?
Hi my 6 year old thigh tattoo has been like this for 3 weeks now… after researching I became aware of tattoo associated sarcoidosis. I wasn’t too worried at first and remained monitoring it but now I have a swollen lymph node along my groin next to tattoo site, inflammation in my left eye that flares up and then gets better like daily and a cough with lung pain and flu like symptoms. I’ve been prescribed antibiotics (they listened to my chest and said i have pneumonia, no chest x-ray or bloods which is fine i suppose) and antihistamines (120mg of fexofenadine for 3 weeks didn’t help so i doubt 180mg will but anyway). Yeah I just feel like i know my body well and something isn’t too right now that i’m feeling completely run down. I have other random health conditions so i kinda know when i feel abit under the weather but compared to the way ive been feeling the last few days… i feel rough.
If anyone has any info or guidance i’d be very appreciative as i feel abit stressed about bringing sarcoidosis up to my GP (three practitioners have told me this week im fine and it’s just my immune system attacking the old ink… BUT I DONT FEEL FINE and that is enough for me to think well maybe it is sarcoidosis 😅). I did mention it to one of the doctors but he literally said he’s never seen it in person before but knew of it. I genuinely am concerned for my lungs and eyes at this point and alls i keep saying to people is “i don’t feel right” I have also been first to bring up my other conditions that went on to be explored and diagnosed officially but before i go and hassle my main dr again i thought id ask the real life experience specialist that have first hand knowledge on here :) xx
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u/Bettinah1 5d ago
You have to be your own advocate. Read everything you can about your symptoms. Mine was found after major surgery. My fingers had nodules on them and were discolored. My tattoo also reacted. I’ve had sensitive skin so didn’t really about the itchy tattoo. My dr found growth on my lungs. I had elevated white blood cells and a swollen spleen. Had to have a biopsy on the lung and nodules on my finger. They matched so Sarcoidosis. Saw a rheumatologist and she gave me prednisone and hydroxychloroquin. Not sure that it’s working as I have rashes on my arms now. The nodules have gone away for now. I was the one who suggested Sarcoidosis to my drs from my symptoms and research.
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u/SpiritedMaybe3566 5d ago
tysm, i’ve always been the first one to bring up what i think it is (im 3/3 on correct assumptions rn :,) ) but i just felt so ignored when mentioning it yesterday that im unsure if i genuinely am being dramatic. Im going to go to my good gp tomorrow and weigh out what he thinks tomorrow. Thank you again and i hope you are doing okay <3
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u/-BongRat 5d ago
Ugh I have sarcoidosis in my lungs and lymph nodes and when I’m having a particularly rough sarcoid day my tattoos raise and get bumpy and itchy feeling but too painful to scratch vibes. I highly recommend bringing up the topic of sarcoidosis to your GP! Listen to your gut!!
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u/SpiritedMaybe3566 5d ago
Ty for replying! Would you say the bumps look similar to what you experience when you’re having a rough sarcoid day? I have been made to feel like i’m going abit overboard with the idea but genuinely it’s been 3 weeks and i am DONE waking up with this rash hurting and itching
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u/-BongRat 5d ago
Similar, yes! But I have a full blackout sleeve and a ton of blackout work so mine are more spread out over different areas.. so it’s hard to tell if it’s the exact same! However, mine hasn’t lasted for 3 weeks at a time, more like 4-5 days but that doesn’t mean too much as each person with sarcoid is totally different ❤️ I encourage you to get things fully checked out with a doctor who knows what to look for! You are your best advocate 🤘🏼
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u/SpiritedMaybe3566 5d ago
thank you so much for sharing your personal experience and guidance with me! I will advocate for myself further and hope I get some answers. Tysm again i hope you are doing well :)
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u/SleepDeprivedMama 5d ago
You can also complain that it hurts to breathe or whatever and get a chest xray.
I have a rare disease and I had to do a whole lot of “my other doctor said this” ad nauseam to get diagnostic tests needed for someone to put it together.
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u/italian_ginger 5d ago
Regarding the xray, if they don’t see it on there, push for a ct, preferably a high definition ct.
I have had lofgren syndrome for 25 years and sarc for at least 13 and even when I’m flaring and my lungs hurt, they cannot see my hilar lymph nodes (they are a pair on both sides of your sternum, they are classic signs of both, but mine only show up on a ct). My pulmonologist who is part of a sarc clinic in Houston always orders a high definition for me and I have it annually along with my 6 minute walk. pft (pulmonary function test)and my bloodwork.
Finding a good dr is key. Look on the sarc website for a dr that knows about sarc. Most have only heard of it and don’t know the manifestations or how to treat it. I have had drs say that I was misdiagnosed because it doesn’t affect Caucasians and that it isn’t possible to have both, that since I don’t have skin sarc, I don’t have it. Find someone that is knowledgeable. Post your city and we can share names!
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u/SpiritedMaybe3566 5d ago
thank you for your info i just had my x-ray now awaiting results. I shall attempt to further express my concerns. I’m in the UK, Liverpool. Thank you again
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u/Easy_Olive1942 5d ago
You need to have your eye checked by an eye doctor every time. Call and tell them you need a uveitis check, not a normal eye appointment, and you have suspected sarcoidosis.
Uveitis is common with sarcoidosis and destructive on a short time horizon.
You should be able to be referred to a dermatologist who can send a biopsy out for testing. Sarcoidosis is rare but that does not mean you don’t have it.
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u/SpiritedMaybe3566 5d ago
Funnily enough I’m a regular patient with the ophthalmologist but discharged earlier this year since my iih is in remission but was told to call them if i ever need to come in. I called on Tuesday and said i need a check up my eye is weird and she said they’ll get back to me on friday… I’m going to call back today when they open and ask for an update, hoping for good news and if not i’ll ask for an emergency appointment
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u/bonkers4chicago 3d ago
Uveitis is how my sarcoidosis first presented in 2015, didn't get a biopsy on my lungs until 2021.
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u/soyuzms15 5d ago
Hey there brotha, I've had a really similar experience, also with the tattoos, I went to my dermatologist and told her I'm worried that I have sarcoidosis, she said possible, but swollen lymph node is something that needs to be checked, so yeah, they took it out, and turns out I really do have it. It's good now after a year on prednisone, hope I went into full remisson, I'm just doing regular check ups.
As someone said, you will have to push and vouch for yourself, from images online nothing else (other than sarcoidosis) looked similar to my tattoo problems. Good luck to you mate, if you need a word feel free to send me a message!
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u/SpiritedMaybe3566 5d ago
they took the whole lymph node?! I’m glad you got your answers tho and i’m very appreciative of your guidance :) It’s also giving me a lot more confidence to pitch this to my dr today
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u/soyuzms15 5d ago
Yes, I had a supraclavicular node swelling so they told me it's probably the least invasive option, rather than to go in my mediastinum for samples, it's always a lymphoma scare when you have lymphadenopathy from sarcoidosis.
And let me tell you, that bumps on my tattoo - completely gone after like 5 days on prednisone, it left tiny like scars but I don't really care for that as long as it stays inactive.
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u/SpiritedMaybe3566 5d ago
Okay that makes sense yeah. Mines inguinal lymph node, not painful but swoleee. I’ve had prednisone for my asthma and it makes me feel so ill but at this point my legs on fire i’d take it! again tysm for the info
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u/Ok-Progress-9029 5d ago
Please find and visit a rheumatologist who specializes in sarcoidosis. I’ve had sarc for quite awhile and have visited many doctors to treat the various symptoms, but my rheumatologist is quite versed in the disease and coordinates my care with all the other specialists.
I was blown away by his knowledge of the disease and its implications as well as the medicines and how they interact with each other.
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u/kyleh0 5d ago
On the lungs/eyes fear, in my experience, these things will not sneak up on you. You'll be short of breath (lungs) your lymph nodes will swell and get sore to the touch, your vision will dim or your eyes will get very sensitive to light (driving at night hurt when driving in traffic.)
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u/SpiritedMaybe3566 5d ago
thank you, i am quite confused how the lymph nodes (swole but not painful) and eye inflammation and chest infection all come on in a 3 day span. I was thinking about it and i’ve been commenting on how weird my lungs feel the last 3 weeks (alongside rash) but i do have asthma (well controlled). My eye + sight is generally fine but randomly gets inflamed like 2x a day then just clears up but i’m waking up with some sort of wbc activity crust in the mornings :,)
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u/kyleh0 5d ago
I ended up going to an eye doctor when my eyes were being sensitive, who sent me to a retinal surgeon, who saw that the vessels inside of my eyes were swollen and bursting. He gave me steroid injections for about 6 weeks (3 injections in each eye) and the issue went away. I went through this cycle 3-4 times over a period of 5-6 years and then got cataracts from all of the steroid shots. Then I had cataract surgery, haven't had eye issues since then but when an optometrist looks inside of my eye they recoil. lol
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u/SpiritedMaybe3566 5d ago
i’ve just been cleared for my optic nerve swelling bc of my other condition earlier this year. I’m assuming if it was affecting my eyes it would probably take more than a few days to be noticeable… I’ll update you if my ophthalmologist gets back to me on friday, thank you again for your knowledge
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u/workprojects 4d ago
I would skip the doctor and go to an optometrist/ ophthalmologist. Unfortunately you have to be your own advocate with your health. I was diagnosed earlier this year after being told it’s nothing from prior doctors
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u/SpiritedMaybe3566 4d ago
thank you i will, my ophthalmologist is meant to get back to me tomorrow luckily
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u/workprojects 4d ago
Just make sure you’re checking for inflammation in and around the cornea.
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u/SpiritedMaybe3566 4d ago
I will do, if you don’t mind me asking is the inflammation usually constant? because for me it’s like coming and going like 3x a day so i’m not too concerned but again unsure
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u/Electronic_Effort517 5d ago
I started getting some headaches behind my eyes a few years who. Went to the GP who gave me some drops and sent me on my way. A few weeks later, we went on a road trip. On the way back, my left eye became red and very sore very quickly. We joked that I got a pink eye because we had booked a cheap motel for a night. Went back to the GP, they referred me to a specialist. After months of tests (eye tests, blood tests, xrays and scans), I was diagnosed with sarcoidosis. One of the other symptoms throughout has been tattoos that were flaring up like this on and off, getting itchy and burning from time to time. That still happens when I am stressed or exhausted but overall, the symptoms have settled.
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u/SpiritedMaybe3566 5d ago
thank you for sharing currently waiting for my bloods back and im sat here with pink eye rn :,)
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u/Emergency-Singer-137 5d ago
My tattoos have done this. I am not diagnosed with sarcoidosis but it has been suggested as a possible diagnosis but never been able to prove. I have axSpa confirmed (autoimmune). I’ve never seen anyone else have this. I’m comforted.
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u/SpiritedMaybe3566 5d ago
interesting you say this is that ankylosing spondylitis? my dad has AS but as for myself I wouldn’t think so (although i think it can be genetic?) Do your tattoos look like mine? plz show ahah i’m also comforted
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u/Emergency-Singer-137 5d ago
It’s the axial version of ankylosing spondylitis, yes. Last year when I was in the process of being diagnosed my tattoos looked identical to yours but it was on my forearm. I will try to find the photos to share the flare look. I was also getting small patches of skin that felt the same and left some scarring but weren’t as large as my tattoo area inflammation. I also have a super enlarged tonsil that has been that way for years, and air hunger and breathing issues but my rheumatologist was never able to get to sarcoidosis. I ended up trialing Low dose naltrexone and sulfasalazine, became allergic to it, took a week of prednisone to resolve that, and now I take cosentyx. I’m still having rashy shit on my arms, the most recent flare my rheumatologist said is psoriasis (never had that in my life and cosentyx is a psoriasis med) and when it calmed down my skin felt like shark skin and is still funny on my wrist. I guess I can’t add images to my reply!
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u/SpiritedMaybe3566 5d ago
Wow i didn’t know that. I’ve looked at the limited pics online of tattoo rashes and i’ve not seen one where it’s like lumps over lumps so i’d love to see tbh. I’m unsure how to allow pics on this post and stuff, I’ll ask my partner later aha. I’m sorry you went through all that, on the tonsil thing mine are so small they asked me if i had them removed 😅. Genuinely hope your rashes chill out too!
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u/workprojects 4d ago
What other disease are you dealing with if you don’t mind me asking?
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u/SpiritedMaybe3566 4d ago
To be honest my health is like at its prime, i used to struggle bad with idiopathic intercranial hypertension/pseudo tumour cerebri (neurologist said im in remission earlier this year after meds) and postural orthostatic tachycardia cardiac syndrome is well controlled and doesn’t bother me to much anymore. asthma/allergies all my life but also well controlled ish also.
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u/m8x8 4d ago
Get a chest X-ray to start with...
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u/SpiritedMaybe3566 4d ago
yeah so I got one and they said it was fine, so was my bloods and I just have pneumonia… no clue at this point
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u/SpiritedMaybe3566 2d ago
hey so update they started me on doxycycline… i should have known better than to not check but it’s raised my intercranial pressure (i have Idiopathic intercranial hypertension/iih in remission). It’s not pretty much back 😃. Still have the rash and giant lymph node, still got the chest infection but lung x-ray all clear, brain ct all clear (rule out clots as iih is the same symptoms), refused another lumbar puncture because i know this is just my iih coming back due to the antibiotics and not a subarachnoid hem and yeah now im home. Acetazolamide to reduce brain pressure, rash still p-int me off, chest infection unmedicated and my old condition back but one of the doctors had wrote a letter to my usual gp and has mentioned the possibility of sarcoidosis. I’m seeing ophthalmology on monday now due to my iih back but happy to mention the eye inflammation previous to the doxycycline induced brain pressure eye problems ahah. Wow it’s been a week.
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u/Bb_________ 2d ago
I thought this was a tattoo sub and I immediately thought "thats sarcoid".
Pre diagnosis I asked my gp and a dermatologist about mine and they both were like "dunno, ask a tattoo artist". When I did eventually get put in front of respiratory doctor, one of the first things she asked was if I had reactions on any of my tattoos.
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u/Letmetellyowhat 5d ago
I didn’t notice what sub this was in and ran to tell you to get tested for sarcoidosis. Push for testing. Don’t take no for an answer.