Newbie here, hello! Does anyone know much about autoimmune conditions being triggered by medical implant, namely titanium nickel cardiac device ICD? My health has gradually gone downhill since I had one fitted in 2017, and I am suffering with fatigue, joint pain, chest pains, flare ups of malaise and pain,kidney issues, headaches, skin reactions...had a positive ANA of 1.80 homogeneous pattern and eGFR 85, plus low Hb to name but a few. I already had various allergies and sensitivity, asthma, hayfever so I guess I was ripe for some kind of reaction!! I have found some research papers and GP supportive so far, but how can I prove or link the implant to the autoimmune response? Will they remove the device if it is obvious that's the cause or an I insist on it being removed on a hunch based on all the coincidence? Will the lupus or lupus type disorder ease or go away upon removal?Any words greatly received...
Autoimmune caused by metal implant in body? - LUPUS UK
Autoimmune caused by metal implant in body?
I have a titanium nickel pfo closure device. I felt initially much better after it was done while on both plavix and aspirin therapy. Then in June I was switched to warfarin and plavix without the low dose aspirin and started having muscle cramps, fatique, hip and wrist pain but my antibodies were dropping all the same. They actually have disappeared now and I had high positive Antiphospholipid antibodies along with lupus markers prior to the device.
A few weeks ago, due to excessive bruising, my team decided to switch me off plavix and onto low dose aspirin with my warfarin and I just told my husband I feel great again! No muscle cramping or hip pain and the constant tinnitus I had experienced for most of the last six months is gone. I do not know if the plavix was at fault or if maybe the aspirin is helping my joints but I seem to think plavix might be an issue for me.
Are you on clopidogrel or aspirin?
Since I had my dental implants inserted in 2017 I have been having an autoimmune disease, not sure if there is a connection, but I have a strong feeling that is very much possible.
I have seen many doctors but no one could tell me that is definitely the implants were cauising me all my symptoms. I have been reffered to Estman Dental Hospital in London, due to my pain in a natural tooth next to the implant, but the doctors there also arent sure if the implants are the cause of the pain in my ntural tooth or in my reumatic desease.
Would be helpfull to have some answers to my questions but so far no luck!
best,
Thank you for replies... interesting and helpful. No, not on any medication but have long term nerve issues, visual snow and tinnitus from antidepressants. Found some further information on links, Inc a paper from late 2019 on metal implants, inc dental, that can be linked to autoimmune issues. Found a case study on a woman wh had a titanium chin implant and eventually developed lupus like autoimmune condition! Implant was removed and symptoms eventually disappeared. Dick Van Dyke apparently spoke openly about problems relating to affects of his implants and issues with health, and had them removed. I'm aware of mesh issues...highly qualified medical colleague had vaginal mesh and is now disabled by fibromyalgia and possible autoimmune. I am convinced if a link and I trust my body and the messages it is telling me. After all, we are the experts on ourselves and know how we feel best? I will try to link...
For seven years, actor Dick Van Dyke suffered with pounding headaches, chronic fatigue, insomnia, and neurological symptoms. Doctors were at a loss; an MRI, a spinal tap, and other tests were all normal. Van Dyke finally resorted to a plea on Twitter: “‘ ‘Anyone got any ideas?’ “. It turned out that dental implants that replaced missing teeth were causing his symptoms. The root of the implants were titanium, a metal that is biocompatible for most people.
Although titanium is generally considered safe, one study showed that patients had severe health problems after receiving dental implants. Medical issues included neurological problems, depression, and chronic fatigue syndrome. Once the implants were removed, the patients’ health improved dramatically.
Studies have also found that implanted titanium can cause abnormal cells to form, which could precede the beginning of oral cancer. Two articles published in the Journal of the American Dental Association indicated that dental implants either caused or aggravated oral cancers.
I assume titanium as they are the main material for true implants, the kind that are screwed directly into the jaw. I used to work as a dental nurse!!
Titanium is very biosimilar to our bodies and considered safer than the nickel. Before my aso procedure the cardiologist did test me for nickel allergies. Do/did you ever react to metal snaps on clothing? Serum Nickel levels are very elevated in tests 24hours, 1 month and at peeking at 3 months post implants in children but than within 12 months they dropped to pre implantation levels. Why did you have the device implanted?
Interesting! I had device implant in 2017.. Medtronic ICD. Have had keloid scarring and cysts form round the incision site and gradual onset of chronic fatigue, illness, worsening of asthma, pain and abnormal bloods. I react to many things topically and have various allergies and sensitivity, and read in the major paper that many who developed AA type issues had preexisting allergies and history of reaction. I have never been tested for metal allergy and this was not discussed prior to surgery.
My husband is employed by medtronic and was involved with that product's development, so I hope I will try to be impartial, lol. My ASO is made by a competitor.
You could ask to be tested for metal allergies before looking into removal and alternative surgery.
Oh how funny!! I have the two lead version, and was really happy to have it as have long QT 2/3! My husband has a pfo closure, unsuccessful treatment for migraine! Thanks for your words-i am keen to look into nickel and titanium allergy testing but ever hopeful the cardiac hospital clinic can help as cannot afford private fees. Already have confirmed allergies to various animals, grasses etc...
My pfo with an atrial septal aneurysm was found during a stroke workup and my migraines with aura have not happen in the year post closure. I have had headaches from time to time but no more scintillating scotomas! I hope it lasts.
You could test yourself kind of. Nickel is used in zippers, bra fasteners and jean snaps and titanium is in jewelry. Those with severe allergy will find rashes upon skin contact with the metals often.
Wow, you have had quite a journey!! My husband's migraine affliction has been ongoing since aged 4!!! He has ehlers danlos so we strongly suspect link due to vascular issues and postural and joint complications. He has had almost every drug, clinical trial, injection, device.... currently has new injectable, Imuratab or something like that, plus triptans and a cephaly device! Good point about testing in skin! I get itchy with most things and don't wear jewellery, skin is often red or reacting to something...so topical responses might show too even though I suspect might be only internal? I was looking at blood tests and needle aspiration/cell collection!
titanium
Thank you PawPad for the information, I have read also a lot about the autoimmune response after the dental impalnts work. somes studies do show evidence of it, but the doctors wouldnt consider to take it seriously? at least in my case..
I have mentioned my suggestions to my reumatologist
and dental surgeon but no one gave me any certainties in their answers.
I would consider to remove the implants if at least one medical professional said yes, as I have 3 front imlants...and once these removed I woudnt have any upper tooth!
I do believe there is more to it but sometimes those in the profession are not keen for any adverse or negative press that may impact on patient numbers...I'm not suggesting a cover up whatsoever, yet I do feel that there can be a bias towards some evidence and not others to suit, and sometimes a lack of awareness of the many empirical studies out there that are pointing to an issue may be apparent. Did you see my post about Dick Van Dyke...plus there are some good research paper if you dig. There are some studies which show that titanium is not 100% perfect, but what is! I am keen to get myself tested for titanium and nickel response or allergy...
That's right I have seen your comments regarding Dick Van Dyke.
I also would like to have a test for the titanium allergy, just wondering what doctor can request such test. My gp said no to my question.
will be seeing in London clinic in March.will try to get more information about the subject.
im also alergic to hair dying..thank you your advices
Yes, that is my hunch...I've only had ANA test so far which was 1.80 homogeneous pattern, but also have widespread joint pain, lowered kidney function, pleura region pain, iffy haem bloods, petichae, random fevers and red flush in face to name a few!
Thank you for your post, v helpful
I'm am well aware there are and that is true but there is still a case and evidence for adverse reactions, no matter how small the %. My point is, I suspect I am one of the unlucky few who has potentially reacted due to predisposition to allergy. Statistically, titanium is very safe and well tolerated but I'm only interested in finding out why I am so unwell and all the clues are pointing towards my implant and the materials it is constructed of. I am spending time reading and researching many academic papers to gather some evidence ready for my next clinical appointment, although I remain hopeful that they will heed my individual experience and reported symptoms 😊next blood test will be the double stranded...
I think that you like me are now coming across views from alternative health sources.
I think there may be some validity to the arguments.
Whether or not implants of any sort are causing problems for some we live in a very different world to that of our grandparents. We daily receive an ongoing assault from chemical sources in our foods, then there is pollution and various other unnatural things we do to our bodies.
Mercury is one of the most dangerous substances but routinely used in tooth fillings. Don't shoot the messenger but fluoride is a poison but its in toothpaste unless you look hard to buy a toothpaste without it.
Mercury is also in all of the lightbulbs these days. Who may have had Mercury exposure after breaking a lightbulb and cleaning it up without a hazmat suit?
We are eating high proportions of fake foods. None of these things individually will kill you but what is the compound effect?
Our lifestyle and the processes we are told are all safe may not be. Otherwise why do so many suffer from chronic conditions?
Excellent and informative post, thank you. Food for thought...
Hello there, I had a total hip replacement ( titanium) in March 2015, for severe osteoarthritis,aged 45. Within 6 months, I too developed severe joint pain in my hands elbows,knees,ankles,muscle pain, itching skin,dry mouth. My bloods were checked and I had a positive ANA and markers for systemic scleroderma CREST.
It’s been a long and lonely journey, but I definitely think that the hip surgery/ titanium prosthesis triggered a cascade of events, and I have gone from a fit healthy person to someone who is on a lot of immunosuppression, as well as other meds and it has affected my lungs, GI, bladder as well as my joints, therefore impacting my health.
I have asked medical staff many times about the surgery triggering this connective tissue disorder, which probably was lying dormant, but no doctor has ever agreed with me yet.
I'm so sorry to read this...what a horrendous experience for you. The worst part is not feeling acknowledged, dismissed even! It is a worry when there is evidence out there, and one expert can dismiss it without even reading the sources or leave you feeling misheard. We know our bodies best. A good doctor / professional will not be so black and white, but say hmmmm, let me research this, I am curious...as no-one is the expert on everything! Sadly, stress, pressure and funding issues restrict many in the NHS so they are tied to budgetary constraints, but some are just stuck and believe they are all-knowing and this can mean a total disregard. Some of the most amazing consultants I have worked with are the humblest, whereas I have experienced the other end of the spectrum with the dismissal...no, not possible, I know best as I have studied this speciality...yes, but they haven't studied the presenting individual! I have challenged a few in my time and even presented bundles of research papers and all my evidence to confront the attitude, and it has resulted in a great collaboration. I have learned to ask for copies of all lab reports and take them everywhere, which has been a game changer. AI as overnight hearing loss wonderfully and kindly wrote about above is rife and modern living with all of the chemicals and rubbish in everything cannot be ignored. The fact that is is still considered acceptable to use mercury in the NHS or anywhere is simply staggering...and that is just the tip of the chemical iceberg 😔
Correlation and causation are so hard to prove. But pregnancy, emotional and physical trauma are known precursors to autoimmune disease. So any mental or physical change to our bodies might cause your auto immune to attack what it does not recognize.
Very good point and one I am strongly aware of. Consider every possibility, starting with one with most evidence and be aware of confirmation bias...for me, the direct link between implant fitting and subsequent AI but...it could be a coincidence, it could be unrelated! I am just keen to find answers😊Off out to purchase a titanium piece of jewellery and wear it for a bit!! Worth a try....
Just like we do with medicine we should weigh the risk of the devise against its benefit. For me my pfo closure has improved my life. I have no more strokes, I have 100 percent oxygen saturation, no more scintilatiing scatoma, and no day time fatigue any more so if it did cause my preexisting condition to flare I still find it overall beneficial. It is all a balance. 
Interesting approach with jewelery. Im very sensitive to all metal when specifically if i try earrings. I tried titanium ones and at first reacted like to other metal bit then found one claiming having pure titanium without any impurities and I didn't have reaction! This i bought from Zen Lady from USA. See if you could find earrings with the type of titanium that was installed in your body. I dont think other type of jewelry will be good to test unless you brake a bit skin. I can wear gold necklace but not earrings for example
Very interesting reading, thank you. I worked as a dental nurse (qualified) in hospital setting and clinics from 1995 -1999 and again briefly in 2009, and can verify that they still used the mechanical blending machine which was filled with mercury liquid and powder alloy! Private patients were privy to the newer technologies of contained capsule amalgam but the vapour would still leak until the filling had set! As for the theories you put forward, it is definitely something I am looking into as well...until I get the metallurgy or whatever it might be called looked into, then I can investigate broader avenues. The very fact that I have a foreign body implanted, regardless of composition, might be cause for the AI response in my body, in line with what you mentioned re trauma response in the body. Predisposition to allergies is not helpful either. I have had a few surgical procedures but normally bits taken out, such as tonsils, gynae and gall bladder, and never had issues like this whatsoever. There is a suspicion that this big old lump of metal in my chest muscle might be causing my ill health, but I hear you loud and clear that it might not be the device itself but the process of surgical invasion. Thank you for your words, they are gratefully received!
Do you know that in past times hat makers used mercury as part of the hat making process.
The term mad as a hatter was due to them working with mercury.
I have read that there are very high levels of dentists committing suicide. Some say attributed to working with mercury.
Anyway, this thread is about implants. Just thought I would mention that.
Yes indeed!! The relaxed attitude towards handling the mercury in the dental practice was terrifying, certainly when I started as a trainee in 1995, but then again they were still gassing kids as a general anaesthetic without proper training or equipment compared to a hospital...health and safety was not a priority yet I was paranoid and wore mask, gloves and goggles to use the amalgam machine. One of the old school nurses told me she used to blend the amalgam by hand...bare hands!!! It is an important point you bring and quite relevant as heavy metals including those in fillings and vaccines come under the umbrella of the ASIA studies mentioned before alongside metal medical and dental implants..possible adverse and immunological response issues seem to be inclusive of all of these.
It almo might be surgery and stress due to surgery as well as antibiotics if you took them to prevent infection during surgery that possibly triggered an autoimmune response. Surgery with no implants of any sourts triggered my lupus. Having said this i still think it's worth investigating if metal is perpetuating the autoimmunity. Titanium is usually non reactive with the body but know knows, maybe you are reacting. I think it possible but it's more probable that just surgery triggered the autoimmunity...
Yes, all avenues certainly to be explored with this one - I have read some excellent papers from 2019 regarding lymph node biopsies in patients with titanium plates, and traces of it were detected and that particular patient was testing as a + reaction to the metal, and also had a lupus-like AI. There is a recognised condition called ASIA plus studies into Metallosis?
''Metallosis: A New Form of Autoimmune/Autoinflammatory Syndrome Induced by Adjuvants Syndrome (ASIA) - Published: 2019-02-25
Issue: Vol 6 No 3 (view)
Section: Articles
How to cite:
Vaz, R., Xavier, P., Brito, S., Dantas, J., Duque, S., Consciência, J., & Campos, L. (2019). Metallosis: A New Form of Autoimmune/Autoinflammatory Syndrome Induced by Adjuvants Syndrome (ASIA)?. European Journal of Case Reports in Internal Medicine, 6(3). doi.org/https://doi.org/10....
Abstract
Autoimmune/autoinflammatory syndrome induced by adjuvants (ASIA) is a new entity in which exposure to an adjuvant triggers an aberrant autoimmune response. Metallosis is a rare condition characterized by the deposition and build-up of metal debris in the soft tissues of the body associated with metal-on-metal (MOM) prosthetic devices. It can present with local/systemic symptoms and signs due to a chronic inflammatory host response. The authors present the case of a 51-year-old woman with a 6-month history of systemic complaints due to intoxication with metal ions from hip metallosis. This case highlights the importance of follow-up and continuous monitoring of patients with a hip prosthesis. As this is a rare condition, a patient presenting with unspecific symptoms such as ASIA syndrome induced by metallosis requires a high level of clinical suspicion as the removal of the adjuvant can resolve the condition''
They had their implant removed and their symptoms all but disappeared. Biological stresses on the body from surgery are certainly a factor, but deep down I kinda hope it is the metal hence the keenness to follow this investigation first. If it isn;t the implant metals then I am less likely to be able to 'treat' it. If the implant is the cause, it can be removed...I know it is wishful thinking and I am not ruling out anything at this stage, but I am eager to find out if anyone has had similar experiences, and what process they went through to get it confirmed.
just to EDIT I am mindful that this particular piece is regarding hip implants and the shearing of metals, but the importance is that titanium in the body can potentially cause AI response. I just hope to get some answers soon - seeing cardiac specialist next week and will take all of my blood reports, and see if they are able to help with some kind of allergy testing, even if to rule out reaction to the implant metal
Hello I’m a newbie too. I had Lupus diagnosed 20 years ago which comes with all the usual autoimmune issues. To complicate matters 4 years ago I broke my ankle very badly and as a result I have a lot of metalwork.
I was convinced as the pain all around the metal work became unbearable over the past 2 years that the it was down to the metalwork and needed to be removed. For many reasons my surgeon did not want to remove it but then 6 months ago because the pain was not improving he said he would take it out. I panicked because this procedure came with many problems so I asked to speak to my rheumatologist before agreeing to the removal. I am lucky that I have a good relationship with my consultant and asked for help to make the decision. After many specialist scans she could definitely tell me that the metalwork was fine and that it was my autoimmune problems attacking the metalwork.
I was given 2 shots of steroids straight into the foots tendons followed by a depomedrone injection for all over benefit.
Amazingly the pain is so much better, still there but bearable so it was inflammation causing the pain. The plan is to repeat depo medrone every 4 months. I was told that removal of the metalwork would definitely not ease the pain.
Hoping this info. Helps so sorry it’s such a lengthy post.
Please don't apologise - your post makes for fascinating reading and may tap into something for someone somewhere. Sorry to hear that you had such a rough ride, but inspiring to read that the shots helped and that you have a good relationship with your medical team...that is so valuable! Have you had any allergy testing directly linked to the metals/materials used? I am aware that skin patch testing no advisable so I am looking into bloods and biopsies, so I am curious if others have undergone similar to get answers...wishing you all the best and hope you are getting some relief from the suffering you have endured.
I’ve not had allergy testing recently but irritation and allergy reactions come with the territory. I had a 3D scan done where I was injected with a radioactive isotope which showed that the inflammation was definitely not connected to the metal work but from the tendon sheaths. I was also told I would glow for 24 hours after the isotope!
Hi PawPad. When I worked with an allergist, we had a case just like yours. Lady became ill right after ICD implant and wanted to know if she was allergic. We patch tested her for metal allergies - where they put little sticky patches on your back for 2 days to see if you react. She did react a lot to nickel. We advised the ICD be removed but left it up to cardiologist as to what it could be replaced with. I don’t know if there are any nonmetal options and if the ICD is necessary for arrhythmia, it’s a hard place to be. You may really need the ICD so pros and cons should be weighted if you happen to be allergic.
Your picture sounds lupus like and I’d gather whatever you needed the ICD for is probably related to your overall picture. I don’t think removing the ICD will solve all of your problems but I do think it would be worth it to see an immunologist and allergist for an opinion on if you are allergic and what can be done about it.
I hope you find some answers soon. Please keep us up to date!
Wow...thank you!! I might have to ask you privately for a recommendation if I am unable to get anywhere via the NHS. I will certainly keep you updated...thank you so much for your input.
No problem. Happy to help. Feel free to message me at any time. Just a disclaimer, I live in the US so please excuse any ignorance on my part with regards to the inner workings of NHS and UK healthcare system.
Thank you to you across the big pond!
Let down again because blood tests all negative despite many symptoms!
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