May 2002. Thought it would be a good idea to stop smoking and get healthier – though I wasn’t in bad health, there was nothing wrong with me. The NHS was offering smoking cessation courses and I was prescribed Zyban. The course of Zyban was to last 2 months. By day three I didn’t want to smoke any more, amazing stuff. By week two I had a horrible pain out of nowhere in my right ankle, by week three the ankle was terribly swollen and hot and I could barely put it down – or pick it up – or sleep because the weight of the sheet on my ankle was unbearable.
I was asked a number of questions at the end of the smoking cessation course – one of which was “Have you had or do you have any pain or stiffness in your joints?” – I had and questioned the reason for asking only to be told “Oh standard questions”. Like hell they were. That is the last time I’ll be used as a guinea pig for a pharmaceutical company.
The zyban patient information leaflet at that time said nothing about joint issues, now I notice that it says:- quote
“Musculoskeletal - Infrequent were leg cramps and twitching. Also observed were arthritis and muscle rigidity/fever/rhabdomyolysis, and muscle weakness” http://www.drugs.com/sfx/zyban-side-effects.html
I stopped taking zyban after four weeks. Thank you GlaxoSmithKline for destroying my quality of life over the last 9 years – may you all rot in hell.
My first rheumatologist could barely be bothered to speak, such a self important man. He put me on sulfasalazine for a couple of years which did nothing much accept put my body under stress as it tried to get rid of the synthetic crap – more efficacy is gained from simple, cheap and natural MSM.
I got a new rheumatologist around 2006/7, he’s a nice bloke, friendly, has time for his patients but is unfortunately either brain-washed by the pharmaceutical companies or gets a huge backhander every time he manages to get someone new onto the poison that is methotrexate. Methotrexate is a DMARD he told me, it will stop further damage to your ankle joint from the inflammation and it is the drug used for psoriasis. And yes that’s what it’s supposed to do. Arthritis Research UK, to name one in many, states that this is so; “Methotrexate is a type of drug known as a disease-modifying anti-rheumatic drug, or DMARD. These drugs have the effect of dampening down the underlying disease process, rather than simply treating symptoms. Methotrexate reduces the activity of the immune system” and it must certainly do that because I’ve had three boils while being on it – normally I don’t even suffer from colds. In fact I still don’t suffer from colds but it reduced something in my immune system along with the normal functioning of my brain. Unfortunately it never did reduce the inflammation that has caused damage to my joint.
So I took the tablets, I slowly declined mentally and physically, the rash drove me nuts and I had frequent flare ups of the arthritis which caused a great deal of pain and many nights awake. As time went on and the dosage increased I started to sleep as often as possible, sometimes falling asleep at my desk at work. Hard going when you have a business to run. It crossed my fuddled brain occasionally that it seemed silly taking this drug when i was still having pain like I was; still there were days where I couldn’t walk at all. Sometimes, if we were to plan a holiday, I also requested a cortisone injection so that I could have a pain holiday too. They were pretty good, they allowed me have a break from the pain but you can only have so many of those.
Then we went to London on a reward trip with one of my suppliers earlier this year. We went by coach unfortunately because when the flare up kicked in and left me almost breathless with pain, pain that would not lessen regardless of the amount I overdosed on Arcoxia or Solpadol 30/500, I had no way of getting home. We had to hire a car to get home in the end because I could not be around all those people while I was in so much pain. That was the last straw for me. I started to read everything I could on autoimmune diseases, methotrexate and most importantly – anti-inflammatory foods.
I was astounded when I read on one site “Methotrexate is not a disease-modifying antirheumatic drug in psoriatic arthritis, despite how well it works in psoriasis, according to Dr. Christopher T. Ritchlin. Methotrexate is the most widely used drug in the world for psoriatic arthritis (PsA), based on almost no supporting evidence.” http://www.internalmedicinenews.com/specialty-focus/rheumatology-immunology/single-article-page/psoriatic-arthritis-evidence-lacking-for-widespread-methotrexate-use.html this profit destroying report remains unpublished apparently although it was presented at the annual meeting of the American College of Rheumatology in 2010 (See below for details).
And another one “ Methotrexate does not appear to slow the progression of structural joint damage; a small study hinted that cyclosporine might be more effective in this capacity”. http://www.psoriasis-cure-now.org/psoriatic-arthritis-treatment/
All becomes clear. Methotrexate used in PsA patients merely modifies the symptoms - not the disease (the joint annihilating inflammation damage). This is why I have significant damage to the talar navicular joint in my right ankle. For at least four or five years I’ve been on a drug believing it to be stopping damage when it hasn’t been doing anything of the sort. In fact it wasn’t even positively modifying the symptoms – if anything it was making things worse. The rash was spreading, the pain was bad most days at some point or other, I had a constant limp. My right knee is turning inward because of the way I was walking. My right hip ached occasionally which was worrying. And all the while I had chronic inflammation – eating my ankle. More annoying still I suffered constant tiredness, confusion, lack of concentration, brain fog, inability to make decent decisions, hair loss. I found plenty of other people reporting the same adverse effects http://www.askapatient.com/viewrating.asp?drug=8085&name=METHOTREXATE%20SODIUM
What did I do? After the London episode I set about eliminating all processed junk food from my diet. I ate blended fruits and raw vegetables for a month with little meat, I had no appetite really anyway – sometimes I ate nothing for days. I took a course on nutrition too – turned out to be a government mandated Politically Correct course but from that I realised that diet was important because of certain chemical structures in carbs, proteins and fats and the damage caused by some carbohydrates and processed foods – the very things the “health” services were pushing (this was not stated in the course obviously, the course just got me interested and I did the rest of the research on the internet).
I bought supplements that are anti-inflammatory. It just seems logical that reducing the inflammatory response was necessary – Omega 3 has been shown to reduce C-reactive protein levels in the blood. It’s cheap and it makes no money for the pharmaceutical companies – that’s why it isn’t “prescribed” in my opinion. A lesson learned from all this is that whatever is said to be “Good for you” by the “Health professionals” must mean that the opposite is true – in my case that appears to be playing out really well. At the end of the day it’s all to do with chemistry, altering your body chemistry appears to be not so difficult.
My last dose of methotrexate was on 8th July 2011 – 5 months ago. Five months ago I couldn’t even walk the dog, uneven ground was an excruciating experience. Now I’m walking roughly two miles per night with my dog and I’ve actually run a couple of times but I don’t push that because I’m aware of the damage shown on the x-ray – the damage that the “DMARD” was supposed to stop happening.
I put canesten on the rash on my left foot – within four days it was clearing up and now you can’t even see where it was. Whether it was the canesten or coming off methotrexate or the diet I have no idea but it may be possible that I didn’t have psoriasis to begin with and it was a long long (six years) fungal infection?
There is talk now about having the talar navicular joint fused. I don’t have much range of motion in that joint as it is but losing the little I have will be annoying – although if the pain starts again I’ll be in the front of the queue to have it done. I’m also aware that there are options for this operation – there is apparently a screw that can be used that has a swivel type of arrangement whereby loss of motion can be avoided – as a tax payer and fully paid up member of good old England’s so-called health services – I want the jointed screw not the fixed one – if this procedure becomes necessary. I haven’t been told about the options re this operation – I found out for myself that there are options but of course they’re more expensive.
At present there is a little inflammation in the ankle, it’s warmer than the other one. The pain I do have is occasional – a mere dull ache compared to what I’m used to. I have had horrible pain in the right Achilles tendon for years since this started – the swelling there so bad that you couldn’t feel the tendon at all. Now that tendon aches occasionally, the swelling either minimal or none existent. I frequently had heel pain – sickening pain that kept me off my feet for days at a time, I haven’t had this for five months either.
Only twice in the last five months I’ve been fine then stood and haven’t been able to walk, this was a regular occurrence previously which could keep me off my feet for an hour or all day – the few times it has happened since July I’ve been a few minutes then I could “walk it off”. Morning stiffness is still apparent but the pain that goes with it is mild. The area of pain is now where I would expect it to be given the damage to the joint, it was all over the ankle before and sometimes down the side of my foot – I could feel it moving around. I had favourite areas of pain because some I could manage to walk with. Twice this year, while on methotrexate, 25mg dose, I had flares in my ankle, shoulder, elbow and wrist – that was frightening. More regular were flares just in my ankle. Right now as I sit typing this I have absolutely no pain at all and that will stay the same all day now. My pain is now easily 95% less than it was while on the “DMARD” methotrexate.
My rheumatologist wrote to my doctor after last weeks visit “She seems to be doing well in herself and feels better since stopping methotrexate. She is also convinced that the ankle pain and restriction is better since stopping the medication. I am not convinced that she is better off methotrexate”. Is he saying that he doesn’t believe me? He thinks I’m wrong about feeling better in all ways? Bizarre! He has now requested an MRI and has suggested referral to a foot surgeon (to correct the damage that I shouldn’t have if methotrexate had acted as a DMARD in PsA).
Report to the American College of Rheumatology re methotrexate inefficacy in PsA
The relevant excerpt is shown below – the entire report can be found at: http://www.rheumatology.org/education/annual/FinalAbstract2010.pdf
This section is on page S277.
From http://www.musculoskeletalnetwork.com/display/article/1145622/1854186
"Of note, the number of swollen joints and acute phase reactants (erythrocyte sedimentation rate [ESR] and C-reactive protein [CRP] level) did not differ between the groups [MTX and placebo]. Concerns remain about the relatively low dose of MTX, the oligoarticular pattern (median joint count, 5), and the possibility that the study may not have been adequately powered. However, the lack of a decline in swollen joint count or acute phase reactants in the treatment group strongly suggests that MTX is not a disease-modifying agent in PsA".
My CRP, ESR, ALT and Platelet levels while on methotrexate in January, March and May 2011 and, after throwing the poison in the bin in July, my result in August 2011
|
CRP |
ESR |
ALT (Liver function) |
Platelets |
14/01/11 |
1.8 |
1.72 |
8 |
455 |
25/03/11 |
2.1 |
1.72 |
7 |
464 |
24/05/11 |
2.2 |
1.7 |
12 |
480 |
08/07/11 |
Last dose of methotrexate, the rest thrown in the bin |
|||
12/08/11 |
1.4 |
1.64 |
5 |
374 |
So from that last test my inflammation was lower without MTX, my liver was happier and I had a reduced likelihood of thrombosis due to a reduction in platelets (good to see as thrombosis is in my family history). I’ll stick to pineapples and spinach I think.
I would like another blood test to see where things stand now, that will be really interesting.
This is a letter I'm working on, not really sure where it's going at the moment. My specialist is completely unaware of relatively recent findings re methotrexate, as is my doctor who is actually on methotrexate! I feel they should be informed. I'm also feeling a strong urge to visit a solicitor/lawyer. I am so ANGRY I can barely leave this alone now - I've lost 9 years to pain and misery, I've missed valuable time with my kids because of pain and inability to walk and in the last year I spent most of my time sleeping or grouching around in a pit of despair as the pain chewed on me and ragged me mercilessly. I am not a happy bunny at all - mainly annoyed with myself for allowing someone else to be responsible for my health and not taking control of it myself sooner.
I hope this is informative and not distressing to those of you on methotrexate, I'm sorry if it worries you but you wont necessarily have the same experience with it that I've had. I didn't realise what effect it was having on my mind because it crept up on me slowly, it wasn't until I read other people's experiences that the pieces fell into place. I was actually more annoyed about the depression/brain fog etc than I was the possible liver damage and pain and increased risk of thrombosis and God knows what else. I like being able to think and somebody is going to be in trouble because I can now.