I have Ankylosing Spondylitis (AS) or Seronegative Spondyloarthropathy. Suffering for 7 years now. Disease progression is very fast. In that time, been diagnosed with SI joints fused and obliterated, L5S1 Disc Hernia, Degenerative Disc Disease, Cervical Spondylosis, Meniere's Disease, enthesitis, peripheral arthritis and osteo arthritis ( both left and right body), Benign Prostatic Hyperplasia and Prostatitis with Erectile Dysfunction, Haemorrhagic Pineal Gland Cyst, Hiatus Hernia and Diverticulums, SSS Sick Sinus Syndrome, peripheral oedema, On DDD pace maker, Inappropriate Sinus Tachycardia with plenty of unexplained and abnormal ECG's , Lung Fibrosis secondary to AS ( breathing problems) on oxygen, multiple PVC episodes, Dysautonomia, Hypovolaemia and latest diagnosis of Multiple System Atrophy. Majority of the symptoms seemed to be kept at bay in cold and lower pressure climate but most of the time it's hot and humid weather here in malaysia, which only makes matters worse...
NOW, for now, i am barely abled to stand and walk for long and feeling tired most of the day with hundreds of fainting episodes a month. My eldest daughter at 9 has been diagnosed with Inappropriate Sinus Tachycardia and now at 13 started to show polyarthritic problems. My eldest sister is also down but mildly and only been recently diagnosed as AS. My cousins and aunties and mother has SLE but i suspect the main culprit is AS. With the very limited research and (funding) in Malaysia on this (even at the top most University Hospital i am being treated at..), and seeing this disease is not going away down my bloodline and seeing i have 5 small girls and a boy, i need help from anyone to get me through this or at least slow down the progression of this horrible disease. It took 7 years for me to get diagnosed and since i have complete records of my problems and seeing this is a multi-disciplinary problem, i wonder if anyone had come across such a problem as these?
i have run out of options with the Hospital i am being treated at right now. I am on a cocktail of drugs including testosterone and enbrel jabs monthly. The Doctors are only treating me symptomatically and i have to do more in order to maintain my own autonomy and i am getting flushed out and fatigued and dont know how much longer before i get completely bedridden. I am looking for some information on this and would appreciate any feedback. Thank you.
HLA-B27 gene has to do the inability of the immune system to recognize pathogens in about 2% of people who have this gene.
You might be one of them.
HLA B27 is found in 90% of patients with ankylosing spondylitis.
There's suspicion that there are contributing factors in acivating this gene,
leading to AS or other conditions.
An anti-inflammatory diet and certain herbal anti-inflammatories which unlike many anti-inflaamatory drugs won't inhibit the enzymic activity of COX (COX2 inhibitors are linked to increased vascular events, might be helpful.
I have come across- in an unoficial capacity- fine researchers and Doctors in Singapore, where it seems that the quality of medical & health care services is the highest in that region.
You may benefit from seeking out a very knowledgeable Holistic or Naturpopathic Doctor there, as Allopathic medicine has very little to offer to you in terms of improvement.
I was at work when I posted earlier and after re-reading my reply
I noticed that among a few spelling errors, there was a paragraph that should read as follows:
"An anti-inflammatory diet and certain herbal anti-inflammatories which unlike many anti-inflammatory drugs won't inhibit the enzymic activity of COX (COX2 inhibitors are linked to increased vascular events), might be helpful. "
Also I would like to note the fact that 10% who do not have the HLA-B27
and still get AS, MUST have other causative factors.
In murine studies, breeding mice with this gene, but kept in a controlled sterile environment, do not develop AS until they get infected with the pathogens normally associated with AS: Campylobacter, Salmonella,
Clostridium, Klebsiella Pneumoniae (this one seems to be more common)
and others. I have some references to some older studies , should you like to check them out for more details. Just let me know.
Wishing you well.
Thanks for the reply and you're right. I get rather forgetful nowadays that i forgot to mention that i tested sputum in Dec 2012 and the result was positive for Klebsiella Pneumonia and Haemophillus Influenza but negative for HLA - B27 hence Seronegative Spondyloarthropathy. Just did a Ct scan Angiogram, result Calcium score is 0 , means likelyhood of having Coronary Artery Disease is very low but plenty of Arrhythmias, unfortunately..., due to Sick Sinus... .
Without medications, i'd be crawling in pain. That's how bad things are right now. My medications are Neurontin ( gabapentin) 1200 mg daily, Carbamazepine for tonic clonic seizure, Enbrel Injection 50mg weekly, Testosterone 1 injection monthly, Ivabradine 10mg daily, Fludrocortisone 50 mcg daily, Sulfasalazine 2 tablets daily, Furosemide two tablets per week for lung congestion - breathing problems and oedema, Tramadol Prn, Lexapro 10mg daily, Xanax once daily, Prevacid ( Lansoprazole) 30 mg daily, Potassium chloride 600 mg prn, Cinnarizine 3 tablets daily, Betaserc 16mg 2 x daily for Meniere's Disease, Xatral for BPH and Prostatitis, Folic Acid daily, Neurobion Forte, Nasal Spray for allergic rhinitis and sinusitis, Bisacodyl twice daily for chronic constipation, Metoprolol 50 mg prn for vaso vagal disease ( tachy - bradycardia and hyper - hypotension ), Gaviscon for Hiatus Hernia.
These medications work very well for me. I'd also like to share here that Enbrel works to slow progression of AS as well as significant reduction of ECG abnormalities. Unfortunately, since Enbrel is very expensive here, i can only afford to take an injection once a month rather than the weekly prescription given. I've got a ton of symptoms for all the 13 confirmed Diseases but majority are kept at bay also by taking the meds.
Let me know if you have any more info on this. I appreciate the guidance you've given . Thanks again.
Well, your plethora of prescribed medications is a concern.
---It seems from a fast look , that a comprehensive assessment
of these is absolutely necessary, in regards to:
1. Proven need and function.
2. Risk/benefit analysis
3. Drug interactions
4. Safer and/or natural alternatives
5. Long term implications
--- Enbrel is a biologic, with immunosuppressive properties and it works as
a Tumor Necrosis Factor inhibitor.
It is very expensive everywhere in the world.
I have come up with a substitute, a nutritional and supplementary protocol,
designed to address the inflammatory damaging effects of TNF, but without the immunosuppressive effects of biologics.
Of course, it would be unethical to suggest that people take this, instead
of biologics, however, anyone interested in it, for educational purposes,
I will be glad to forward it in a PM.
---- It seems that you have notable neuroendocrine dysregulation*, which is very challenging for most doctors, even Endocrinologists to address properly. You may want to research the Kalish Method for this and I believe there's at least one MD in Singapore who is trained in this field.
Not sure in your country, but you can make inquiries through the
Kalish Institute website.
* All this stemming from various factors, but most suspect is chronic stress and lowered immune function.
---Also you may have a variant of AS & Reactive Arthritis combo, with the probable causes( low grade Klebsiella Pneumoniae and/or Haemophillus Influenza infections) still unaddressed or rather only partially addressed.
---Look into deficiencies, specifically TISSUE magnesium-NOT serum levels
omega-3 ( DHA, EPA levels) and B12 (methylcobalamin, which is the only one which crosses the BBB). Methylcobalamin is not in the Neurobion list of ingredients. Instead you get a much cheaper form of B12, Cyanocobalamin, with possible toxic effects ( potassium chloride intake or from free potassium molecules in your body+ cyanide
part of cyanocobalmin intake --> potassium cyanide, toxicity is rare in the short run, but long term effects ???) and also b.c of the Prevacid intake, your intrinsic factor necessary for B12 absorption, is lowered, as it needs ample gastric acid.
Look into Inorganic Mercury exposure , most commonly from mercury amalgam dental fillings and vaccines, which accumulates in the BBB ,
thus causing a chronic deficiency of B12 and other issues.
On top of these suggestions, a master battle plan (Holistic/Naturpopathic)
needs to be implemented for long term improvement and wellness.
Let me know if you need details in anything, but please note that the above information is not intended to replace medical advice.
Thank you for the complete review and understanding / information on this matter. I have been looking for answers for years from the many different prof / doctors i'm seeing from 12 different specialties here in kuala lumpur. All i get is silence.
Sometimes, information alone is therapeutic. It helps to have an idea of whats bothering me in order for me to best take care of myself. Information is key for me right now.
I appreciate your help and advise on this matter and will check out the doctors as you have mentioned earlier . Thank you.
Hi, Are you doing daily stretching & exercises for your spine? I used to find gentle exercises in the pool helpful. I am Seronegative Inflammatory Arthritis & my spine is not good. I have a very ugly kyphosis to boot. :(
I did have some response to Remicade which is an infusion but I'm not sure if this would be any better cost wise where you are. I found Methotrexate very good as well & is one of the most common treatments. This is usually taken alongside the Enbrel in many countries. I can see your on Sulfasalazine which is sometimes effective but it may be time to consider a different DMD if it's not doing anything.
The pain is something you need to look at & if it doesn't adversely affect any of your other conditions then try a COX2 inhibitor like Celebrex. This may not be of use with your heart condition....I'm not sure.
If you have a Seronegative Spondyloarthropathy then theoretically you will not pass this onto your children as you are HLA B27 neg. I'm sure you are already aware that there are many forms of AS or Spondyloarthropathies & some people don't fit an exact kind of arthritis. I have been told I have RA, a Spa but really I have characteristics of both hence the label of Seronegative Inflammatory Arthritis. This is quite common.
At the moment I'm on a DMD called Rituximab but I have been on just about every other DMD available before this. The Rituximab made a huge difference to me so I can only suggest you keep searching. There are lots of cheaper DMD's out there that are available just on a general script. Just don't give up because there is always hope.
Hi, i would like to thank you for the information you've given me. Every little bit helps in my case. I am doing stretching exercises but i am down most days due to pulmonary oedema and te weather / very high humidity here makes it worse so much so that ihave to stay in an air conditioning evironment most days now. Heat and humidity not only congests my lungs, which acts like a sponge but it also triggers joint pains and abnormal heart electrical activity, mostly ectopics and palpitations,multiple syncopal attacks. In the air cond room, most symptoms are under control.
As for Enbrel, due to it being costly, i can afford to take a monthly instead of weekly jabs. I have been on/off /on methotrexate 2years back like my sister is on now, but had to discontinue due to increase in liver enzyme. I am given celebrex and tramadol for pain control but i don't take it as my doesn't hurt too bad if i move around but i take 1capsule of tramadol every fortnightly when i have chronic cervical neuropathic pain. I will make enquiries from my doctors on Rituximab and see if it works for me. I am off sulfasalazine now as i was hospitalised last week for Toxic Epidermal Necrolysis secondary to Carbamazepine, so i don't think i will continue with that. I'd be safer with cox-1 and cox-2 drug, i guess. Ultracet is quite good, 100mg aspirin works just as well to keep me light and reduce chest pains .
I understand the heat issues entirely. I also have MS & suffer from heat intolerance with this. I am in Australia which is hot so I am constantly running the air conditioner just to make it through another day.
The Rituximab is a costly drug but I don't pay for mine as I meet criteria to take this. I think it's about $28'000 to self fund. I don't know much about the health care in KL I'm sorry.
Just be careful taking too much Aspirin because it can have adverse effects on the stomach. This is what the COX2 is ultimately about.......avoiding damage to the stomach / GI tract.
You obviously have much going on with your health & I understand this will impact on you in many ways. Often docs just don't want to help you because even they struggle with people who have many health problems. I have found I often need to move onto a different doc when they can't keep up or they are disinterested. Ultimately this is your health & well being so you must move onto new docs if the ones you have are not helping you.