I posted earlier as a young man (23 years old) who developed temporal arteritis in mid March 2015 after working at a power plant from January 2015 through March 2015. I was a chemical engineer working at this power plant and performed daily chemical analysis of an amine-based organic solvent in an on-site lab. I most likely inhaled some of the solvent at my work since I had to breathe inside the lab, but took precautions (face mask, gloves, etc). Could the fact that I developed GCA at such a young age suggest that my exposure to chemicals at work was a possible significant contributing factor to the onset of my illness?
1. Does anyone know of any person (or himself or herself) that caught GCA after exposure to a chemical (possibly through work or at home)?
2. Does anyone know of any ongoing research (and where is this research) focused at identifying a relationship between chemical exposure and the onset of vasculitis such as GCA? Is this research well documented and substantially proven?
3. Has anyone had or heard of anyone getting genetic testing for any genes that may predispose someone to vasculitis such as GCA? If so, what are the genes and what types of testing are available? Is there any research focused on finding treatments for GCA based on genetics (such as specific protein suppression therapy)? I just cannot believe there are no other current staple treatments for GCA other than prednisone therapy, which has far too many side effects in my opinion. Heck, if there are no other viable treatments besides prednisone, I'll find one!
GCA is more common in people with a Scandinavian genetic history - but not exclusively so. It is a vasculitis which is most likely due to an underlying autoimmune disorder which leads to the body's immune system being unable to recognise your body as self and so attacks the tissues by mistake causing to inflammation and reduced blood flow because the lumen of the vessels is narrowed.
I don't know of any specific research relating to chemical exposure but it is fairly much accepted that a range of factors may contribute to overloading the immune system leading to its malfunction - infections, environmental (which would cover chemical exposure), stress, age, genes and many other things. Not enough is yet known about any autoimmune disorders and their causes to be able to say much with certainty. Unfortunately that is often the case with medicine.
At present it is known that pred provides a known and effective means of reducing the inflammation - which makes for a lot of ethical considerations when it comes to finding other ways of managing it. You cannot try another drug on its own and leave the patient at risk of going blind so it must always be in combination with pred, looking to find out if you can stop the pred faster - but some people take longer to recover than others and that complicates matters to. It is a very rare disease so doing large scale research on other drugs is difficult because you need relatively large numbers to do the statistics. There is not yet even a reliable way of diagnosing it with 100% certainty in every patient or any way of monitoring the progression/effectiveness of the treatment.
Research is expensive (it needs funds, lots of money) and in the case of GCA and PMR there is still lot of basic research to be done - the exact mechanism isn't yet known and until that is known it is difficult to look for a cure. Things are a lot better than they were even 10 years ago - there are support charities like this one and quite a bit of research going on.
Exposure to chemicals may have been a factor, as GCA is caused/activated? when your auto immune systems goes awry for some reason.
Can't help with other questions, and if you can find something else that works as well as Pred without the side effects, and is just a cheap you'll be a very popular and rich young man! Good luck with that one.
You've no doubt consulted Dr Google - there seems to be a fair amount of information about vasculitis and chemicals so you may well find out from searching the literature where research is being conducted. Good luck! please let us know how you get on. Certainly you can point out to your doctors that there is a lot of evidence that chemical exposure can trigger certain types of vasculitis. Do you know if anyone else in your workplace has suffered from unusual symptoms, not necessarily the same as yours?
Regarding prednisone and its close relatives, I too am shocked that there hasn't been more research to find something safer - even tweaking prednisone to make it more closely resemble the actual human hormones it is replacing? But maybe there has been and they don't work?
There are other corticosteroids - but prednisone/prednisolone/methyl prednisolone are the ones that act over about 24 hours so you get away with one dose a day. Others are shorter-acting so you'd need 3 doses a day, others hang about in the body for longer so potentially have more side-effects.
If they change the structure of a drug it has to undergo long and very expensive testing again to see if it works - and it could have worse side effects at the end. Then the REAL rate of side effects is found once it is released onto the market (at a far higher price) and used in real populations of sick people. It isn't unusual for a new "wonder drug" to be quietly withdrawn or its use restricted because the gilt wears off and the feet of clay show through.
The one sure fact with pred and co is that, after 60 years, they have been VERY well tested over many years in many millions of patients and there aren't very many nasty surprises in store. And they work very reliably even if they DO have some unpleasant side effects - but so does sugar.
GCA is the most common form of vasculitis, and at a Vasculitis Symposium this year it was reported that no clear infectious agent has so far been found as a trigger so it remains of unknown origin but possibly caused by something in the environment. The UK appears to have the highest incidence. It was further reported that as far as who gets vasculitis, and why, is concerned, it is believed we can be genetically predisposed. Certain causes such as Herpes, Hepatitis, Streptococcus and Parvo Virus have been ruled out, although it is thought that treatment for Gout (Allopurinol) could be a possible trigger in some. It was further believed that the strongest link is silica which is present in soil, although even then it was believed that the link was not very strong.
Meanwhile, Prednisolone/Prednisone remains the most tried and tested treatment, and we are awaiting results of a large trial with a drug called Toxilizumab on patients diagnosed with GCA and on Prednisolone.
activIm in agreement with environmental causes, along with over exposure to electromagnetic activity. Studies on overexposure to electromagnetic activity have shown enlargements of cell macrophages - as well as giant macrophages , after these exposures.
There is a hospital in Hemel Hempstead(and I don't know where you live) called The Breakspear. It is a hospital for environmental medicine.The only one like it in the UK.
It is privately run but people do get sent there and there is occasional funding for patients. When I was there for a different reason several years ago, there were several male patients who had inhaled toxic material in planes or paint sprayers etc.
Can I suggest you loo at their website and see if there are any helpful ideas etc there?
I have been doing a lot of reading on GCA due to my recent diagnosis and certainly am not very knowledgeable but have found some interesting things. One is a paper potentially linking GCA to the varicella virus (virus that causes Chicken Pox/Shingles). You can find that if you google it. As well, I have gone to a physician here in Canada who has trained in both Western and Eastern medicine and has glowing reviews. His theories (which are very controversial) are that the body is attacking either an infectious agent, a food sensitivity or a heavy metal. He has a number of tests/treatments that he uses which unfortunately are listed under Quackwatch so it is really hard to know if they will be of any use. I also found some papers linking GCA to the aluminum in vaccines. I think until we understand what triggers the onset of GCA the treatment will probably not improve. The current therapies focus on suppressing the immune response are bodies make to the perceived threat/trigger rather than looking for the threat and removing it. If what you were exposed to had a heavy metal component then you may be able to be tested for heavy metals and have chelating therapy to remove it (again very controversial and listed on Quackwatch). Good luck with your research and be sure to report back to us.
I can speak a bit to your question about genetic risk for GCA. I am fortunate to live in Florida only 20 miles from one of only three branches of the well known Mayo Clinic in the US. I was diagnosed there in 2011 at the age of 63 with PMR and in 2012 with GCA. The rheumatologist diagnosing the PMR was being very thorough and explaining everything because he was mentoring two other doctors throughout my appointment. He asked about family members and I told him my sister had been diagnosed with "reactive arthritis" another autoimmune disease and that testing showed she had a genetic risk for autoimmune disease. My rheumatologist ordered blood testing done on-site that same day. Mayo is wonderful that way. The test for the gene in question, HLA B27, was done with a blood draw along with the draw for testing inflammatory markers. It was positive for the gene as it had been for my sister. The rheumy explained that at least one of my parents also had to have the gene and each sibling had a 50% chance of getting it. (Another sister later asked for testing and she was negative for that gene type.) As with all genetic testing results, they now say it only represents greater risk, NOT certainty that a condition will occur. A rheumatology nurse at Mayo in Florida told me that Mayo in Rochester, Minnesota encountered at least 3 times as much PMR/GCA as the one in FL, and that may be attributable to a higher percentage of Scandinavian descendants in that part of the country.
My rheumatologist also spoke of a "biologic" therapy being tried with some success for chronic PMR/GCA. Tocilizumab TCZ (also known as Actemra) intended for Rheumatoid Arthritis is also being tested for PMR/GCA. My rheumy encouraged me to get the temporal biopsy in case it proved I had GCA so that I might be an approved candidate for that or other new drugs trials if I ever wanted to be. My temporal biopsy, done on both sides in the same appointment, did not confirm the disease.
I wish you great success is finding more about alternatives to prednisone or perhaps a more natural formulation of prednisone as HeronNS pondered in a reply to your post. Your youth is in your favor for searching in ways we, your elders, may not be familiar with. Young entrepreneurs organize many types of fund-raising on the Internet these days, and perhaps that type of thing can be applied to fund-raising for research or offering a research prize -- something that historically has produced wonderful solutions to "unsolvable" problems. Also since you are an engineer, I encourage you to use your talent for examining, recording and analyzing and apply it to every step of your journey with your condition.
Best wishes to you. While we wouldn't wish any young person to have this condition, you have some power to bring more focus to a condition I feel is too often ignored as it is viewed as something that only plagues the elderly.
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