Hello Warriors! Just to share my journey on the starting blocks for a GCA run.
Having had arthritis symptoms (pains in the back) since I was 12 years old and having had a good active living since that time I'm now, 55 years later, facing Horton's disease and a GCA.
It began in april 2020 with Horton symptoms (headaches, ears, unable to open the mouth to full extend, neck stiffness etc...) .
A 40mg of Prednisone during 5 days then I began tapering it down to not extend it over 20 days. Symptoms vanished and I was happy not to be on steroid any more. Symptoms still present were the Pseudo rheumatoid arthritis including neck stiffness, pain in both shoulders and tiredness. Temporal arteries not painful, no headache.
By end of July I was on GCA with a flare : heavy pains in the intestine and back which lasted 5-10 minutes every 1-2 hours for one day. Then the next day I had a fever up to 39.5 celsius. The day after I was red all over the body and finally face and hand fingers swelling while being red like a lobster. Again back on Prednisone 40mg and Tocilizumab 162ml once a week.
I'm now on the 20th day on Prednisone (lowering from 40mg to 25).
Meanwhile I studied all possible causes of such a nasty disease. The causes are not known. Immunity is the "reason" behind it.
I can't believe an immune system evolving over 100'000 years can be so defective as to start self eating the cells just because it went crazy. Bodies along time survived plagues never seen today. Even Covid19 is just an aperitif versus past history plagues.
For me the Corticoids and Antibody drug are just a hose to stop the fire. Then the causes behind it are to be found and cured.
So far I found some relationship which makes some sense: the immune system tries to get rid of something in the body.
It may be: parasitic (yeast, candida, virus, bacteria etc...) or chemical (heavy metal such as teeth amalgam, pesticids....) or food poisoning. A cleansing / detox could be the long term solution to the body condition.
My question: has anyone followed such a protocol to detox while being on steroid for GCA ?
Thank you for being there, looking forward to share with you any successes.
I am very new to this disease and know nothing! Following you to see the responses. Good luck, I think we need it 😉
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I'll write down any success in fighting GCA and how/what I did. Currently aside allopathetic (joking!) medicine I'm taking Uncaria Tomentosa (cats claw), glucosamin+chondroitin, harpagophytum and Curcuma daily. Add to this 2 to 5 Grams of C vitamin, D3 and calcium+magnesium daily plus other vitamins as needed. (Needed is when I feel my body needs it, B, A, E vitamins. Also Niacin (not niacinamid)) and probiotics.
Most notable effect is bowel moves and changes in bowel which bring a better feeling of well being. Back+bowel pains disapeared.
Those natural products are addressing overall health of the body. I'm on the 22th day on corticoid drug (Prednisone currently at 20mg/day) and Tocilizumab once a week self injection. I don't intent to stay for long on those drugs but not prompting a flare of inflammation again. I want to find another way and will have soon to start detox and dig into the heavy metal poisoning subject.
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Good luck. My drug regime is slightly different. 90mg prednisilone is the main antagonist. I tend to try and obtain nutrients I need from diet, but historically have been taking vitamin D (Northern European) wand glucosamine, on the basis it doesn’t do any harm. I have become much more aware though of the interactions of my drugs and diet.
Being a creature of habit and very much aware of how I am likely to metabolise nutrients differently. On that basis, I take my 18 tabs with breakfast of weetabjx (fibre and b vits + no sugar or salt) unsweetened yogurt (calcium) banana (potassium) grapes (more fibre and sugar) - I like the combination. Yesterday I ate eggs instead with some toast. Not a mistake, but the regular breakfast seems to allow the drugs to absorb more slowly and perhaps more importantly provides a slower release. Yesterday the drugs cut in much quicker and whilst I was not in pain, I had sensations later akin to when I was on a lower dosage of steroids.
We are all different, have different lives and the wonder of this site is that we can share our experiences to determine what experiences others have. What works for them.
I wish you well with your journey. I have a biopsy on Friday and intake one day at a time. Whilst the relief of no longer being in pain is dissipating, the memory of the experience hasn’t. Sharing with you and others is vital and offers so much more holistically than anything available online.
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Thank you for sharing your experience. I'll definitely have got to change my eating habits! Cut away sugar totally... Prednisone makes me greeding for food, nervous and excited plus cutting my sleep time down to average 6 hours/night while I was a full 8 hours sleeper. I'm on 20mg.... plus tocilizumab.
If you are on 90mg of Pred I suppose you started not long ago. True enough we are all different.
I was very afraid of biospy and refused it. Instead they did a Doppler exam of the arteries. Luckily arteries are not in a too bad condition. My arteries are not hardened yet. Though it was inflammation present and thick arteries walls, it was still soft.
I was diagnosed with GCA January 2016. In the beginning I read everything related to GCA. I still follow several autoimmune websites and podcasts. Here’s the thing, this GCA has it’s own mind. There is not a cure. However, you can help yourself by following a clean, low carb diet. Also, get fresh air and exercise to match your energy level. AVOID stress! GCA does dissipate and there are things to learn along the way. Visit this site frequently, in my opinion it is your best support. Feel free to PM me. I really wish you the best
Thank you for sharing your experience. I do think the diet, exercise, stress are keys to real healing. Seems to me the immune system tries to fight something pathogenic in a last attempt to get rid of something which was present since long time but never solved yet.
**Edited by administrator to remove potentially misleading information and links.**
Wow, you've been through a lot. My friend who is a nutritionist swears by detox doing a day of not eating every other day. Not sure my body could cope with that though. My tummy growls at me if I'm a bit late getting my lunch. However, we sleep all night without eating, so to get up and try not to eat that day and eat the following probably makes sense. It is all about our immune systems that causes disease if it's not working properly. I started with PMR and went on to get GCA after reducing from 15 mg to 8 mg. Put on 40 mg for 2 weeks then reducing by 10 mg. Once I reached 20mg I've only reduced by 1 mg every 2 weeks. If I manage to get to 10 mg with no probs I will continue to reduce by 1 mg but stay on that for a month. The steroids are now playing havoc with my body. Terrible mood swings, eyes feel dreadful, nails and hair, weight gain increased hunger, to name but a few.
I didn't realise that GCA was called Hortons disease.
Take care and hope you get on top of everything.
best wishes
Anne
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Hello Staplehurst,
Thank you for sharing. In my view PMR doesn't cure anything. It is suppressing the natural inflammation reaction of the immune system. The real cause behind GCA and Athritis is yet unknown in the medical world. They say your immune system went crazy.
As far as I know it goes like this (personal observation and researches, I'm not a medical doctor)
1) our environment is chemical and polluted.
1b) stress level in society today is high and can't be fight.
2) our bodies accumulate radiations, chemicals, viruses, bacteria and various compounds, thanks to a polluted environment and food.
3) along our lives it can handle some of those and you stay in acceptable health.
4) nevertheless some parts of the body get unsuspected inflammation at low level.
5) time is passing and one day you feel arthritis symptoms. Later on it develop in various immune system disorder and diseases which are called Arthritis, Rheumatoid Arthritis, Horton (temporal arteritis), GCA (general central arteritis), Diabete, Alzheimer, Parkinson just to name a few.
Horton disease is a variation/manifestation of GCA. Horton is just temporal arteries inflamation which can lead to lose sight. Must be adressed before losing the sight.
So paralleling the medical protocol I try to find a way to handle the very cause of arthritis which leads to GCA. As no one know the very cause behind it, we are left alone to search and try.
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Hi again, you seem very well read. Interesting what you've been saying. I contracted bacterial meningitis back in 1994, I was only 47. Complete negligence on GP's part and hospital too. I lost the sight in my left eye, so have to be ultra careful should GCA kick in again.
Stress in my humble opinion plays a huge part in causing illnesses.
My husband and I are a right pair, as he has type 1 diabetes and suffering after twenty years of having it with chronic kidney disease.
I just hope as I reduce the steroids I won't get a flare up...so far so good !!
Not eating carbs is so hard for me and I also enjoy my choccy.
Never drunk or smoked, so that's a bonus. I've also only put on 7lbs in weight since starting the steroids back in Dec 2019, so trying to be careful.
At 73 not nice having to go without a little of what I fancy.
Anne
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Hi Anne, I understand and share the stress factor. I did a bowel cleansing ten years ago using that protocol (Anderson, California, I'm living in Switzerland) ariseandshine.com/
Much benefit I did get from that. Though he says in his book stress is the most important factor. And I'll have to do it again. As I'm a gourmand ...
At 67 it is not nice either to go without some of the pleasure of life!
Dear poor guy ! (Joke on myself...)
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What symptoms are you experiencing with being on Pred. The latest for me is some of my fingers on both hands are swollen. I've just been told that this can be a symptom of Covid...do hope not been so very carefulfor the past 5 months.
Horton's disease is the old-fashioned name for GCA, there is plenty of reliable work to be found in the medical listerature and the reliable management approach is corticosteroids which quickly reduce the inflammation that may stop the blood flow to the optic nerve. In the last few years tocilizumab, a monoclonal antibody, has been found to lead to the burning out of the autoimmune process involving IL-6 which causes a large proportion of the inflammation and so the dose of pred can be reduced much ore quickly. Unfortunately there are 2 other mechanisms involved in about half of patients that tocilizumab has no effect on so half of patients still require some pred although considerably less.
GCA is NOT an arthritis - it does not affect joints. It is a vasculitis, affecting blood vessels, almost always arteries. The clue is in the name: giant cell arteritis.
Thank you for the infos. No GCA is not arthritis and I never confused both. Tough both are inflamatory disease due to immune system disorder for an unknown cause. Seems that GCA is also commonly associated with polymyalgia rheumatica.
May it be that those inflammatory diseases affecting joints and/or arteries on peoples over 50 have a common cause?
Is there any studies done to discover what is the problem behind it?
Why have I had sporadics pains in my back since 12 years old without any health problems during my life until now ? I never went to an hospital or doctor until now!
May it be a cumulative of pathogens over time?
As we know corticoids suppress the immune system and create on a long term the very illness we try to cure. Just reading the secondary unwanted effects of long term use of cortisone is a crazy way to heal.
If I don't take cortisone soon or later I'll have cerebrovascular accident, heart failure, atheroma, aneurysm, blood clots, loss of vision etc...
If I use cortisone for a long enough time I'll die from the same plus diabetes and a lot of unwanted effects including loss of vision.
If I use Tocilizumab for a long time I may have liver injuries, no defense against microbial infections, turbeculosis etc....
Tocilizumab isn't used for long and you should be closely monitored while using it and it doesn't destroy the immune system entirely. Nor does it cause tuberculosis - what may happen is that a pre-existing TB infection may be revived - it is one of the things you should have been checked for before starting it and if there was a risk according to the tests you should be on appropriate antibiotics. And you should have been counselled in those risks before starting it.
There is little evidence that long term use of steroids causes all that - it does have them all listed as some of the 80+ adverse effects but no-one gets them all and many get next to none. Plenty of people on the forum have not gained weight or developed steroid induced diabetes - cutting carbs helps that a lot. I've been on pred for 11 years - no sign of any of the things you mention. Not even cataracts - which nowadays are curable with a simple operation which is done every day for many patients who have never taken pred. They develop with age - pred may speed them up.
Instead of seeing things and jumping to the conclusion that that will apply to you, sit back and read more carefully. Most of us were pretty healthy pre-PMR or GCA. I have had back problems much of my life - various reasons but many people do - uneven length legs, poor back muscle condition, all sorts of things. I did Pilates and found strengthening my core muscles made a great difference.
Sorry - you listed arthritides and vasculitides together, it wasn't clear there is a difference. I don't just reply to you - I also reply for anyone coming to read the thread later who may not know things.
I had the TB test and all blood, urine tests to negative except CRP up to >100. Liver & kidneys in good order. Plus TEP scan. Thanks for clarifying the TB versus Tocilizumab.
I'm not fighting the protocol my immunolmogist set in place. I'm really wanting to discover the cause behind those auto-immune illnesses. I was wondering if not simply a modern life induced disease. Junk food, additives, pollution, parasitosis etc.... That you partly cleared up with life span explanation.
Still I'm not totally convinced that old age only is creating the condition.
I'll have a look at the Pilates method, thanks for the info, very useful!
"Junk food, additives, pollution, parasitosis" - none of them applied early last century. They still had people going blind or having strokes due to GCA.
GCA - Giant Cell Arteritis!.. and arthritis does not lead to GCA.
Yes they both involve inflammation but -
Arthritis is an inflammation of the joints. It can affect one joint or multiple joints. There are more than 100 different types of arthritis, with different causes and treatment methods. Two of the most common types are osteoarthritis (OA) and rheumatoid arthritis (RA).
The symptoms of arthritis usually develop over time, but they may also appear suddenly. Arthritis is most commonly seen in adults over the age of 65, but it can also develop in children, teens, and younger adults. Arthritis is more common in women than men and in people who are overweight.
Whereas GCA -
Giant cell arteritis is an inflammation of the lining of your arteries. Most often, it affects the arteries in your head, especially those in your temples. For this reason, giant cell arteritis is sometimes called temporal arteritis.
Giant cell arteritis frequently causes headaches, scalp tenderness, jaw pain and vision problems. Untreated, it can lead to blindness.
Prompt treatment with corticosteroid medications usually relieves symptoms of giant cell arteritis and might prevent loss of vision. You'll likely begin to feel better within days of starting treatment. But even with treatment, relapses are common.
If you really do have GCA then the best thing you can do for now is stop messing about with your medication and concentrate on that first of all. Otherwise you run the risk of irreversible loss of vision. Taking tapers of steroids over a few days is not the way to manage GCA - it is a chronic condition and even using tocilizumab you will need pred for at least 6 to 12 months and possibly longer.
I'm sure you have read all sorts of things about de-tox, in most cases it is non-scientific woo that is merely aiming to empty your bank balance into someone elses! Nature not only developed an immune system over thousands of year - it also created an inbuilt de-tox system which we know as the liver and kidneys. They do a very good job.
"Immunity is the "reason" behind it" - GCA has nothing to do with immunity, it is caused by something called "autoimmunity" - where the immune system malfunctions and, for some reason, is unable to recognise the body as "self" so attacks it as if it were an invading virus or bacterium. It is only one of hundreds of conditions including lupus, all forms of inflammatory arthritis, Type 1 diabetes, inflammatory bowel diseas and more. The research so far doesn't indicate there is a single trigger, it is the cumulation of insults to a normally working immune system which can have many forms, as you rightly say including the stress of modern living but that stress may come in many forms including infections and trauma or even aging. GCA was first officially described in 1890 - but there are indications it was present and recognised much earlier than that. Long before some of the reason you mention were present in daily life.
The primary reason it is increasing today is because people are living longer - the vast majority of cases are seen in over 50s and in 1900 the average male life expectancy was under 45 - people died before they developed so many autoimmune disorders including, in this case, GCA and PMR. People died of plagues, injuries and many other causes because of the state of medicine and poverty - and wars.
And I'm also sure I'm not alone in wanting to say that regarding yourself as a "warrior" and "fighting a battle" may not be the best way to approach chronic illness of any sort. I'm not saying you should give in - but there are a lot better ways to utilise the energy in living well with GCA and/or PMR. Many people on this forum will say that they noticed a difference the day they accepted they were on a journey that required some degree of acknowledgement of a changed normal. Fighting and kicking against pred and GCA won't help you "win" anything - GCA and PMR have their own rules and little you can do will change them. What you may be lucky in finding is an approach that mitigates the bad aspects - there is a role for diet and lifestyle changes. Whether all those supplements will make any difference to your health I don't know - and do remember that more is not always better with some, I'm sure they will lighten your wallet!
Be grateful you have access to tocilizumab and take each day as it comes. I wish you all the best
Nevertheless I'm not accepting the illness and will never accept it. Accepting and being happy about a condition is not the way I see life. Better die then.
Scientific world has also proven recently not being exempt of interest's conflicts.
I'm discovering the way it is treated and that way gives results. The price in terms of health risk is not for free. As said my immunologist: "in the old time we treated with cortisone and the people finally died from cortisone. Today we have antibody tech."
As long as there is a possibility to better understand the cause of GCA, the dream being to find the very cause of it, I'll not stop my search.
Acceptance is not being happy about a situation, nor is it a sign of weakness - which you seem to imply.
Acceptance is just that - and it's part of living, and you need to accept to move on.
Many of us on here have lost spouses/partners - and we have accepted that, we may not like it, but we have to accept it and move on..... in your world should we die as well?
"Acceptance is a willful and courageous action. It’s an active dialogue, there is nothing passive about it. It’s not a fleeting thought. It’s a hard commitment, and that’s why it’s so difficult. You can’t fake acceptance; your mind won’t let you. "
I also intend to remove the two last amalgams I have. Then a cleansing/detox + check for candidosis or parasitic infestation. I'm pretty sure there is a way out of it.
In the bowel cleansing I did years ago, herbs including anti-parasitic (cloves, walnut tincture and artemisia) were the main ingredients along a strict diet avoiding any food creating acidic condition. It was very efficient and the results were amazing. Meanwhile I'll have a look at Humaworm products.
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