Humira and other Inflammatory drugs

[189Chester]

Hello,

I have been taking Humira for 12 years. I have been wanting to cut down or get off it, but Drs kept pushing me to stay on it. Quietly, I started taking it every 3 weeks but only a small amount, I would insert needle, count 2 then withdraw it. After a few months I noticed that my body was coping well with the reduction. At my last hospital visit it was suggested I have a 3 month break to see how would get on. I immediately contacted a homeopath who has prepared a remedy containing the vibration of Humira, so my system can cope with withdraw symptoms. l have also embarked on the Ketogenic diet which takes out all carbs and sugar. (worth taking a look at it).

I have also been following the book ' CURE ARTHRITIS THE DRUG FREE WAY' by Margaret Hills, she was a nurse riddled with RA. I soak my hands and feet daily in Epsom Salts, and take Cider Vinegar, gagged at molasses so not taking that. (The Miracle of Cider Vinegar) book is also informative

.I enjoy a ginger and turmeric latte every morning. (recipe on web) Helps reduce inflammation. All these combined together are helping.

After the first 3 -4 weeks of this doing all of this I was in agony, but had to sit it out. I am 9 weeks on and the swelling in my hands,feet an knees have reduced considerably .It's going to take time, I know.

Whatever condition we are facing, drugs/medication will not cure it. We have to make changes within ourselves our body has the ability to heal. Diet has a lot to answer for, although many medics refuse to accept this. There is a lot of info out there to help.

Medication dis-empowers us and makes us reliable on something outside ourselves. We are amazing beings and can heal, it just takes time.

There is also an agenda to get us all on medication of some kind or another, but that is another issue and perhaps not suitable to enter into.

Best wishes to all

[Allsopp]

Hi Chester,

Hope you're having a good day.

My wife was recently diagnosed with RA and we've found that we can control the way her RA behaves on a day to day basis with diet and supplementation.

We can't make her completely pain free, but we can massively reduce the pain she feels.

We've also noticed that she suffers symptoms in specific areas of her body when she eats specific foods...

For example...

If she eats Shellfish her hands will swell up badly and hurt very severely.

If she eats Chocolate within 1 hour she experiences an intense pain in her neck.

Eating totally clean for 1-2 days avoiding Dairy, Gluten and Sugar completely gets rid of these symptoms.

She always tends to have pain in her feet, but we can control the symptoms in every other area of her body with food and supplementation.

Have you found any similar trends to this?

We actually created a database where we record the food we eat one day and then how her body reacts the next day. We've already learned so much in such a short space of time.

She has been suffering from RA Symptoms for 6 months, but has not currently started any medication. We are awaiting to start medication next week.

[189Chester in reply to Allsopp]

Hi,

In answer to your reply:

Most shell fish are toxic, they feed and live on the sea floor digesting the faeces of other fish. Acidic to the human body.

The recommended chocolate to eat is 70/85% dark and only in small amounts.

Jason Vale,s book ' Chocolate Busting' gives an insight into what chocolate contains.

Stay away from anything Low sugar, Diet free, and much more as most things these days contain a very dangerous sweetener 'ASPARTAME'. It is in most foods and drinks even some supplements. There is a lot of info about this on the web and also WDDTY (What doctors don't tell you)Good Supplement Guide.

Avoid using/anything that has been in a microwave. The radiation used has a devastating effect on our blood cells, changes DNA, and much more.

If you look at labels on everything you will notice that PALM OIL is an ingredient. It changes gene activity, liver function, and is associated with fatty liver disease.

SOYA is also now an ingredient in bread and much more. Is it GM?

These are just a few things to perhaps look into. It's a mine field out there, lots of make-believe food. I could go on for hours on this but hope this is enough at this time.

Traditional Acupuncture is a good supportive therapy. It must be administered by someone who has trained at a proper college with the initials Lic.Ac somewhere in their letters. You can only get that if training has been for 3 years at an accredited Acupuncture College. Not a 3 week-end course jobby! What they call Western Acupuncture?

There is a theory that the body is the best friend we have and that any discomfort is the body's language. Also the body does not cause the problem, we cause the problem over many ears and the body gives us feedback. Medication only suppresses the symptoms.

The 5 main causes of disease are: what we eat/drink, our thinking and emotions, life style ,environment and congenital. It will be in there somewhere.

Regards

Chester

[Lucy11 in reply to 189Chester]

While I whole heartily believe that diet influences our wellness as well as emotional health I must draw the line that medication only suppresses the symptoms of our disease.

That just isn't true and it's written time and time again on this forum.

DMARDS and Biologics are disease modifying anti Rhurmatic drugs. If your disease is caught early enough and you're lucky enough to find ones that works for you they can significantly slow the progression of your disease and in some cases halt the progression ( i.e, bone erosions and cartilage loss which can lead to surgery, etc...)

You will rarely see photos now of serious deformity as was once the case for severe RA.

Also, all the doctors I've spoken to want to try to lower the amount of drugs their patients take or even stop a Biologic but hesitate as the clinical research has proven time and time again the majority of people end up back on them and sometimes in a worse state than before.

[Lucy11 in reply to 189Chester]

Curious what you think of the little ones who developed JIA or type 1 diabetes, for instance? Surly they didn't cause their disease to develop as they didn't have many years to create their dis-ease?

[helixhelix in reply to Allsopp]

Do be aware that with this sneaky disease even when no obvious pain it can cause damage. But another advantage of watching your diet I've found is that I tolerate the drugs with no side effects. Although since I eat such an anti-inflammatory diet my inflammation markers are always low, but luckily my rheumy looks at me and my joints and not the blood test results.

[Simba1992]

Hello 189Chester,

Many of the things you touch upon are things that I have been processing. I would however very much like to hear more about your history and what made you decide on getting off Humira? Twelve years is a long time, did you have adverse effects of the med? Were you on dmards before Humira? Are you seropositive or negative?Hope I am not too intrusive, trying so hard to understand and thankful for all experiences with trying to control RA.

[Lucy11 in reply to Simba1992]

Hi Simba-

One thing I'd like to add to your question is the fact that there are some of us who are anti CCP positive but RF negative. There seems to be a discrepancy of what constitutes sero positive.

Most of the doctors I have spoken to and research I've done strongly points to anti CCP as being sero positive. I believe many doctors in the U.K. will say the sero positive distinction is for RF only because it was the first antibody to be recognized but later research has shown that anti CCP is much more indicative of RA

What's more is that most people who test positive for anti CCP also test positive for RF (not the reverse)

I only add this as it may be confusing and not 100% clear when you ask someone if they are sero positive or negative.

[Simba1992 in reply to Lucy11]

Thank you Lucy, yes much more important is whether you are CCP possitive and RF positive. If you are RF negative with positive CCP it does differentiate you from the sero positives. Sero negatives, more often than positives have negative reactions to dmards. In fact many researchers of the opinion that there is still alot to learn about seronegatives. Those with positive RF and negative CCP again may not have RA at all, even though a small % do.

[Lucy11 in reply to Simba1992]

RF negative and anti CCP positive differentiates between those who are sero positive, how so? And this is from you assuming that sero positive is only labeled thus if you test positive for RF?

My Rheumatologist considers me sero positive and rheumatologists at John Hopkins and the Cleveland Clinic would also classify me as sero positive and I am RF negative and anti CCP positive.

[Simba1992 in reply to Lucy11]

I think there are differences in how you express the results among doctors. The main and most important is the CCP it gives you a most reliable indication of RA whereas a positive RF is not as reliable and can be seen in other illnesses. Positive RF with positive CCP seem to differ as a group from negative RF and positive CCP, as well as from the group with negative RF and negative CCP.

[Lucy11 in reply to Simba1992]

I get that Simba. I understand the most important is anti CCP and know that RF can be positive in other diseases whereas anti CCP not so much.

I was asking about specific differences in only testing positive for anti CCP.

You see, you seem to ask people if they are sero positive without specifying if they are positive for both or only positive for anti CCP. This leads to confusion as someone who is not RF positive but is positive for anti CCP will be sero negative to you and for many doctors this is sero positive.

If you're trying to understand and connect dots or make comparisons might it not be better to find out which specific antibody they test positive for?

[Simba1992 in reply to Lucy11]

For me and the way seropositive and seronegative is interpreted by the doctors I have seen, only refers to the RF. Often the CCP is not even taken. Yes Lucy it probably would be clearer to specify the antibody since there seems to be different interpretations.😊

[189Chester in reply to Simba1992]

Hello Simba 1992,

I decided to come off Humira because 12 yrs is a long time. Although I have no obvious side effects, I don't know what is going on inside. Suppression of the immune system long term is not good. I believe it is now time for me to take responsibility for myself and make a changes. I strongly believe that given the right conditions, the body will heal it's self. This is a big step to take but if I don't try I will never know.

I have never believed the diagnosis I was given, but as others have said, the Drs. don't listen.

In classic text especially The Yellow Emperor ( Traditional Acupuncture) and Toa the main causes of disease are: what we eat and drink. There is a lot of make believe food out there which is causing health problems.

Our thinking/emotions, negative thinking and emotions have an adverse effect on our organs creating disease in the body.

Life style; is it in balance?. Family time, job time, exercise, diet, and relaxation/meditation.

Environment, where we live and lastly constitution, what we are born with. These last 2 we have little control over.

There has to be a huge element in self belief. Only the individual can make changes, make life more bearable.

I hope this is of some benefit to you.

Recommended reading 'The power of Now' Eckhart Tolle.

Best wishes

Chester

[Simba1992 in reply to 189Chester]

Thank you for your reply. You said you never believed the diagnosis. On what facts was the diagnose given? Why didn't you believe it? Did you start with Humira right away, without going through the dmards?

[helixhelix]

The diet question is often covered here so won't add more. But I disagree that there is an agenda to get us all on medication. The NHS would dearly like to reduce its drug bill and get us all off medication, and persuade us not to ask for it. Unfortunately GPs are so overstretched, and many patients so reluctant to take responsibility for their own health, that GPs have to resort to a short cut of writing prescriptions.

[ruth_p in reply to helixhelix]

Exactly helix!

[dwsurquhart]

You have to wonder if your doctors are sponsored by Humira producers. Why else would they be pushing you to keep taking it. Maybe ask them for a less expensive biosimilar?

My take on it is that you will feel good for a couple months because so much of it is in your system. As with all of these heavy drugs they take time to build up and a long time to leave your body.

I hope you have done your research on diets and such. A diet without carbs does not provide your brain with any energy (remember the Atkins diet) no carbs just fat. Supposed to help people lose weight. Just gave people clogged arteries and no energy.

I do agree with anti inflammatory foods. However, just having ginger and tumeric tea is a long way off from a biologic. I am not pro biologic, however I to am on a biologic. I wish I was not but such is life.

Please do not put all your faith in fad type diets, they may be good in the short term but in the long run not so much.

Just my 2cents

Scott

[Simba1992 in reply to dwsurquhart]

There are fad type diets and there are science based diets. Fads are like a russian roulette but the diets carefully devaloped to decrease inflammation and giving you nutrient dense food is quite a different thing. Dr. Terry Wahls diet is one of the most dependable ones for AI. A diet like this can be seen as a treatment method, that as effect when it is meticulously followed, just like med treatments.

A diet without carbs does not help your body to metabolize fat and protien and in fact longterm causes hypoglycemia, adrenal fatigue and high cortisol, keeping your organism in a state of constant stress. The Keto diet can be used as a short-term treatment in special situations but not ongoing.

A vegan or vegetarian diet does not sufficiently address the need for fat for thyroid and other hormonal functions which often lead to hypothyroidism. And so on.

[Hidden]

Inspiring post. Thank you

[AARA]

Hi Everyone,

In many ways I am all in favor of trying to take responsibility for your own health.

I consider diet is very important and that alternative therapies can be very effective for many health problems,

BUT this is RA we are all dealing with and for me it can be disasterously destructive in a matter of a few weeks, so I feel the need to advise caution, especially for those of us who are unlucky enough to need biologicals and lucky enough to be the 15-20% of NHS patients to be offered them.

After almost 2 years of symptoms I was finally diagnosed in 2006, by which time my wrists had been totally fused for 6 months, not by operations, but by the disease. By the end of 2009 I had had both hips and both knees replaced and was told I needed both shoulders and both elbows replaced.

Every time they replaced a joint I was taken off my Leflunomide for 7 weeks. In just 7 weeks the RA totally destroyed another couple of joints it was so destructive.

Now after over a decade of treatment I am usually on Tocilzumab (Actemra). The blood results are wonderful, but the side effects are truly awful. Recently I have had some of the best weeks I have had in years, because I have been taken off my Biological and the side effects have subsided. I am off my Tocilzumab only because I have several ongoing long term infections. I have been advised that I cannot have any form of DMARTs until the infections have cleared up.

The last time I was taken off my medication was when I had a chest infection for 7 week. This caused a flare up which resulted in severe loss of both spine and neck movement and I can no longer bend my thumb on my dominant hand. I also lost more ankle movement.

I am terrified I get another similar Flare Up before the infections are sorted out and it is considered safe for me to have my treatment restarted.

We are all individuals and our experiences of RA are all very different. I wish it was possible to control my RA with a combination of diet and gentle alternative therapy, but my version is far too aggressive. I live in hopes of finding a treatment which is effective in controlling the disease AND has no negative side effects, but to date this is just a dream for me.

Please be very cautious before you consider abandoning your medication without the blessing of your Consultant. For some of us RA is truly crippling especially when the initial diagnosis and effective treatment are delayed.

I hope your experience of RA is less destructive than mine has been.

AARA