I have Ankylosing Spondylitis. Is it better to quit flying?

[king8888]

I am 30 years old co-pilot and I fly with low cost airline for 6 years.
I was diagnosed Ankylosing Spondylitis in February and currently on a sick-leave. My doctor advised me to sleep early and take good rest.
But it is impossible to behave that way. Because my schedule is 3-4 days flying and 2 or 4 sectors a day without overnight. And then I got like 2 day-off. Each day, my duty time is about 10-12 hour. Some flight duration is very long ( report time is 5PM and on-choke time is 5 AM)

I know my medical class will not be limited by AS. But is it better for me to stop flying and live like normal people? I don't want to keep flying and in the next ten year I found my condition worsen and can't live like normal people or even loss my flying license when I turn 40s.It will be even worse.

[Bearcat]

Ehhh are you for real? Get a life.:ugh:

I was diagnosed with AS 30 yrs ago, HLA B27 poss etc. I've suffered back pain for years on end......my sac joints are fusing these days which is very painful.

I have taken NSAID's for years and today there are medicines that are very proactive at managing AS.

I'm a long haul capt with close to 15000hrs. If I can do it, so can you.....get on with it mate, see a proper consultant to put you on a correct medicine dosage and off you go.

AS responds well to exercise like cycling , hill walking.....keep active.

[gingernut]

The natural history can be variable. Not an expert, but would have thought your licence prospects would be govenrned by how well you function.

[grounder]

king8888,

See a rheumatologist as soon as possible. There are some amazing new drugs out there to treat AS. Get onto them if you can to slow the spread of the disease.

Also have a read of the following website, it may answer some questions you have.

Link (http://www.kickas.org/)

[Old Akro]

I was diagnosed with AS about 10 years ago. Not an issue at all. You just need to face up to taking the drugs regularly and keeping exercised. Pilates is good. NSAID's are good, but depending on country will get the attention of your aviation medical examiner because of the cardiac and stomach risk. TNF - alfa inhibitors are better and safer if they work for you. Find a good rheumatologist that you like. You are going to have a long term relationship with him.

[king8888]

Thanks everyone !

[Qwikstop]

AS was thought to have contributed to this fatal accident by limiting the pilot's ability to perform an effective lookout.

AAIB report (http://www.aaib.gov.uk/sites/aaib/publications/formal_reports/5_2010_g_byxr_and_g_ckht.cfm)

[stickandrudderman]

I've had it for over 20 years.
I play squash regularly and that definitely helps.
However, a couple of years ago (I'm 48) it started to get worse and I was struggling with severe pain and loss of mobility.
My GP put me onto some new meds (salazopyrin) and my life has been transformed. I didn't realise how much discomfort I'd been putting up with for so long until, overnight, the pain was gone.
So, don't let it get you down but DO make sure that your medical professionals are giving you the best treatment.
I'm not a professional pilot but if I was I think I would try to work S/H rather than L/H so as to increase the need for moving around rather than sitting on my arse for long periods.

[iwrbf]

king8888,

I can only second what was written here.

Don't let yourself down, there are much worse diseases out there... Not to ridicule AS, but one can live with it (most can...)

- Get away from red meat
- Check for Gluten intolerance
- Check for Histamine intolerance
- Check all specialized Practitioners until you've found one that medicates you perfectly
- Get a good physiotherapist and finally
- Train, train, train, train your *blush* off

[Old Akro]

Salazopyrin is an old drug. I used to be on it and a cocktail of NSAID's - chiefly Celebrex. Salazopyrin is likely to be part of a mix, and not used on its own. Like most drugs used for AS, it was developed for another reason but found to be beneficial for AS. It also takes many weeks to achieve equilibrium in your body (something like 10 from memory), so some patience is required before judging it.

AS is quite an individual thing. You need to find what works. Some years ago I moved the TNF alfa inhibitors (I take Enbrel, but there are others). These are pretty expensive drugs and I presume the availability varies by country. In Australia it took me 3 years to qualify. But I now have nearly normal mobility. Salazopyrin has (from memory - check the drug information) a stomach bleeding risk. This can be mitigated with anti ulcer medications. NSAID's have a higher cardiac risk. All drugs have downsides, you just need to be aware & manage the risks. Personally, if it were a choice, I'd accept a shorter life for normal mobility now. Properly managed AS should not stop you doing anything. But you need a good rheumatologist with whom you have a good relationship and you need to work at flexibility - stretching & pilates.

I'm not going to bother reading the AAIB report, but I'm pretty confident that any contemporary rheumatologist would deny the AS link to inability to look out. If for no other reason than for most people it primarily affects the lower back. It smacks of lazy investigation to me.

One of the main issues with having AS is that its poorly understood both in the general community and by most medico's.

The research on vitamin D is evolving rapidly at the moment. But it looks like most of the population is vitamin D deficient and it looks like vitamin D levels have an effect on the efficacy of drugs. So, I take vitamin D as well. I may do some good, it may not. But it certainly won't hurt.

I'm an engineer, not a doctor. But I like to understand what I take and I have a great rheumatologist who points me to papers to read. So, there are many caveats to my suggestions. Read the drug information, look on the net and above all talk with your rheumatologist.

[stickandrudderman]

Salazopyrin is likely to be part of a mix, and not used on its own.


There was indeed a trial period where I was overdosed and monitored for signs of negative reaction.
Now I use it exclusively and it certainly works for me.
My "overnight" relief was from Diclofenac straight into the lower intestine to get the inflammation under control.

I have drastically reduced my wheat intake but, since my symptoms quickly return if i forget my meds, I think the wheat has only a moderate effect.

[Brian 48nav]

I don't wish to be contentious but limited neck movement is a very common symptom for AS sufferers, including me - this was certainly a major factor in the unfortunate collision between an RAF Tutor and a civilian glider.

King8888 - don't give up flying yet! It may be forced on you one day if you are unable to pass your Class 1 medical. This happened to me in 2000, aged 53, and I was medically retired from my job as an ATCO at LHR.

NASS ( the UK AS society) has constantly denied a link between diet and AS. For what it's worth I have found that anything that upsets my stomach triggers an AS 'flare' and vice versa. I am one of the 15% of the population who can not take 'normal' NSAIDs because of stomach bleeding and possible ulceration. I have found the newer COX2 NSAIDs to be less harmful to my stomach but I still take a stomach protector tablet ( Omeprazole) as well.

I also take a good probiotic every day as well as Aloe Vera liquid and avoid cow's milk products as much as possible. I do not eat meat but am unsure if this has any benefit re AS - it's just a personal choice.

I cycle as much as possible but it does exacerbate neck pain, as does swimming. Avoid contact sports - the risk of damage to fused bones makes it not worth it!

Long haul flying will be difficult, unless you can get up and stretch every hour or so. I find sitting for any period longer than 30 minutes quite painful.

Hope this helps, PM if you need any further advice.

Good luck with the career!

[Old Akro]

I presume that both the RAF Tutor and the sailplane have either 4 or 5 point harnesses. These in them selves are pretty limiting for head movement. I'm still skeptical that properly treated AS will be the limiting factor rather than the belts and (in the case of the sailplane) reclined seat position.

I'll stand corrected, but NSAID's really treat the symptoms rather than deal with the issue. AS is an auto-immune disease, so TNF-Alfa inhibitors are the better thing because they act at a molecular level in the joint, rather than reducing inflammation that results from the joint degradation. It is currently thought (but I don't believe proven) that TNF-A inhibitors arrest the joint degradation.

All NSAID's have both stomach & cardiac risk - it just varies depending on dosage & brand (actual drug). In my (researched but non medical opinion) all NSAID's should be taken with meals and with an ulcer prophylactic drug. TNF-A inhibitors have none of these side effects. At least the FAA & Australian CASA are a more relaxed about the aviation medical implications of TNF-A inhibitors than NSAID's. I was the first Australian pilot be be on a TNF-A inhibitor and got put through the mill a bit. But with the help of a very good DAME, my Rheumatologist and some of his friends at the Mayo clinic, it seems to have settled down. In the US, the FAA does not even require notification that you are on TNF-A inhibitors. The FAA medical examiner manual is available online, as is the Australian one.

The Mayo clinic has good information sheets and the US Ankylosing Spondylitis foundation is particularly good.

When I was first diagnosed there were still examples of guys needing prism glasses to look between there legs and walk backwards due to spine curvature. There were also recommendations about wearing tags so that in the event of accidents it would warn people that you had AS and may have brittle bones. All this has gone now. The drugs are getting better & better.

In my experience, general practitioners (and even some Rheumatologists) are not fluent with AS. I was my GP's first AS diagnosis and even now she only has 2 AS patients. So, I think you need to do some of your own reading so you can shop around a bit for a good rheumatologist.

A common side effect of AS is restless legs syndrome and its this that can cause me discomfort on long flights (as a passenger - I fly pistons). This is thought to be because the nerve impulse travels along the outer layer of the nerve rather than in it. This can be treated episodically with other drugs.

Some of what I've said is wrong - I just don't know which bits. Jump online and do some reading. Depending on your level of interest there are some good medical papers. The drug sites themselves can be informative too. Moderate to Severe Plaque Psoriasis and Rheumatoid Arthritis Treatment - Enbrel® (etanercept) (http://www.enbrel.com) is one example, its what I've been on for about 4 years. There are a handful of other drugs in the same class. In Australia its horrifically expensive if you cannot qualify for government support. It took me 3 years to achieve this - although I think the process is easier now, which may be an indication that the drug is cheaper now.

[Brian 48nav]

Lots of good stuff there Old Akro; re Anti-TNF, when it was first introduced here in UK I believe it cost £9,000 per annum for treatment, so not every Primary Care Trust would allow the treatment - and you had to have already been on a course of disease modifying drugs such as Methotrexate.

As I like a drink or two I turned down the latter, finding that the benefits of alcohol out-weighed the thought of weekly liver function tests. Incidentally my eldest son was prescribed Methotrexate to help with his psoriasis (another HLA B27 link), and found it caused severe depression - not a good thing for a test pilot to have!

King 8888; if you are not in a good scheme already, find an outfit that offers a good Loss of Licence Compensation Scheme so that should the worst happen 20 years or so 'down the road' you get a decent pension.

[gingernut]

The LFT monitoring regime does eventually drop in frequency when on methotrexate once everything's settled. I'd question the reasoning behind weekly LFT's.

And to be honest, we're measuring LFT's more often, for various other reason's, (eg starting a statin.) As a clinician, I'm sometimes a little unsure as to what to do with the results if they come back outside the parameter's of what's deemed "normal."

I'm not exactly sure of the link between enjoying a drink, and deranged LFT's, (unless the liver damage has passed the brink.)

Doctors (and nurses) love performing these bloomin' tests, often without thinkong through the consequences:)

[Brian 48nav]

At the time my rheumatologist suggested Methotrexate he claimed alcohol would be a 'no no'. This was also before the introduction of COX2 NSAIDs. I'd also not done well with sulphasalazine and steroids, so for a period painkillers like co-proxamol were my only safe option.

My LFTs remain well within limits, thankfully!

Old Akro

Strangely, NASS in UK has only just offered 'dog tags' for sufferers to wear - it is still thought that in the event of an accident, paramedics etc should be aware of the extra care needed handling a patient with possible fusion in the spine. In fact when I had my appendix removed a few years ago the anaesthetist came to see me before the op', having noticed that my notes showed I had AS, to check the mobility of my neck.

[212man]

I'm not going to bother reading the AAIB report, but I'm pretty confident that any contemporary rheumatologist would deny the AS link to inability to look out. If for no other reason than for most people it primarily affects the lower back. It smacks of lazy investigation to me.

Not as lazy as not being bothered to read the report of the death of a young air cadet on a pleasure flight :ugh::ugh::ugh:

Nevertheless, we know that the spinal disease was progressive from 1970 onwards, and by the mid-1970’s, he had virtually no residual spinal movement, and although I have not seen a radiograph from that time, we do know that clinically he had very little neck movement, and the post mortem clearly described total fusion of the cervical vertebrae.

[Old Akro]

212man. Get off my back.

I did read actually read the report, such that it is. I have discussed it with some doctors. They are all sceptical that someone deemed fit to fly would have neck movement limited to that extent. And my point still remains that I have a suspicion that full harnesses and reclined seating position was more limiting than the AS.

Anyway, this thread is to support a guy newly diagnosed with AS. We have the drugs available now that should prevent a newly diagnosed AS sufferer to ever have fused cervical vertebrae.

[Brian 48nav]

Sorry, I should have given you this information before - google nass.co.uk and you will find loads of useful information, including a guide that can be downloaded and a section for newly diagnosed sufferers.

It is possible that your own country has a society/club for AS sufferers - I can find out the address if you give me your location.

[Bearcat]

My sac joints fused now.....lot of pain. Docs want me on TNF a drugs which is self injecting. I think the medical authorities would have me grounded using this gear.

Steroid injections into lower spine plus use of Celebrex is my chosen path. All other movements re neck use etc no probs. plus loads of walking cycling, hill climbing give me great relief plus a hot water bottle on my lower back ever nite.

[stickandrudderman]

I guess I must have a very mild dose as with the salazopyrin I feel fitter than I did when I was 20. I do feel for anyone in pain and urge you to get the right treatment as you may not have to suffer as long as I did.

[Bearcat]

I just dropped 200 lids seeing a consultant rheumatologist the other day.....a lot of these guys run scarred when they hear the CAA will be poking their noses in the door and will be the final arbitrator to the course of drugs taking re Licence/ career etc.


Why u using this?

Sulfasalazine belongs to the class of medications called anti-inflammatories. It is used to treat inflammatory bowel disease such as ulcerative colitis, distal ulcerative colitis proctitis, and Crohn's disease. It helps control symptoms by reducing inflammation in the bowel. The enteric-coated tablets can be used to treat rheumatoid arthritis when treatment with other medications has not helped. It may take 1 to 2 months before you see any results.

Me on this stuff

What is Celebrex?



Celebrex (celecoxib) belongs to a group of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs). It works by reducing hormones that cause inflammation and pain in the body.

Celebrex is used to treat pain or inflammation caused by many conditions such as arthritis, ankylosing spondylitis, and menstrual pain. It is also used in the treatment of hereditary polyps in the colon

Celebrex may also be used for purposes not listed in this medication guide.

[stickandrudderman]

Why u using this?


Because:

I feel fitter than I did when I was 20

:ok:

[dirkdj]

I would suggest looking at Vitamin C in high doses, can't hurt anything.

Look for lots more under Orthomolecular medicine.

[Bearcat]

Quote:
Why u using this?
Because:

Quote:
I feel fitter than I did when I was 20


if it works for you, happy days. All drugs at this level are about reducing inflammation. I also go to bed everynight with a hot water bottle heating my S.Joints....gives immense relief.

[Sober Lark]

Ankylosing spondylitis is an inflammatory disease of the spinal ligaments and joints and is especially common in young men. The severity can vary from localised tenderness in the lower back to immobility of the entire spine and involvement in other parts of the body i.e. heart, eyes etc. Remissions and relapses occur, and it tends to become inactive over time, sometimes leaving some degree of deformity. Treatment is usually by medication and physiotherapy.

Classifications:

Mild - Mild or no deformaties, no disability, no continuous treatment required.

Moderate - Extensive joint involvement, limitation of movement, frequent or continuous therapy.

Severe - Chronic disease, severe symptoms or deformaty, frequent or prolonged disability.

If no other condition exists and there is no history of chronic disease or severe symptoms then no worries.

Mild with disease inactive should be no problem. With disease active could start creating problems.

[Bearcat]

Can someone advise what the position of medical JAA authorities re use of TNF A.? Im getting weary of constant pain in my sac joints and it's wearing me down sometimes.

[Tandemrotor]

Bringing this back to the top again.

I too am interested in the medical implications on my Class One medical of informing the CAA I have been offered anti TNF (Enbrel/Etanercept)

I have very mild AS symptoms, but am getting p££d off with the pain, (which diclofenac doesn't always seem to solve) and occasional iritis.

Will there be an 'introductory period' where I start the treatment but are required to remove myself from duty??

Any help or info gratefully received. Obviously my next step is to discuss this with my AME who knows I suffer with AS/iritis.

[stickandrudderman]

I only have a class 2 medical but the CAA have no problem with my treated AS.
Moving on from that though my pain-free period on Salazopyrin only lasted 18 months and I am now on a newly elevated dose to try and get it under control again. If it doesn't work my consultant will have to put me on TNF but since it costs the NHS £11000 per year they only do it when NSAIDS can be shown to be ineffective.

[Ulster]

Will there be an 'introductory period' where I start the treatment but are required to remove myself from duty??

It's a well-established general principle in aviation medicine that there should be a brief period of grounding when starting ANY new medication. Whilst side-effects may not be common in a particular drug, there is always the possibility of an unexpected individual reaction.

In a class 1 holder the CAA will certainly want to know about the use of this very new treatment.

Good luck ! :ok:

[Phororhacos]

from the CAA website... (Public domain, but not necessarily easily navigable)
see

Medication used for musculoskeletal conditions | Medical | Personal Licences and Training (http://www.caa.co.uk/default.aspx?catid=2499&pagetype=90&pageid=13832)

Cytokine modulators
Etanercept and adalimumab inhibit the activity of tumour necrosis factor alpha (TNF-α). These are the only medicines in this group that are acceptable for aeromedical certification at present. They are licensed for use in moderate to severe rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis when response to other disease modifying drugs has been inadequate. Flying can resumed (with an OML for Class 1 holders) provided symptoms are satisfactorily controlled, there are no significant musculoskeletal impairments and there are no significant side effects four weeks after initiation of treatment.

[Tandemrotor]

Pho.......

That's brilliant. Thank you. As you said, not easy to find.

[Phororhacos]

No problem Tandemrotor. I should have added that those are the UK rules. (I'm not sure from your location that you are UK.)

[Ulster]

(I'm not sure from your location that you are UK.)

Must admit that I'd wondered about "Nova" as well !

I suppose it could be Scotia, Vauxhall . . . . . . . or even Super !

OK, I'll see myself out ! :D

[Tandemrotor]

:)

Sorry chaps. Yes very much UK, Lincolnshire in fact. Nova was the name of the house I was living in when I registered

[cockney steve]

Nova was the name of the house I was living in when I registered

So, bit of a run-down pit in a "no-go" area, was it? :}

[Pilotmike5]

Thanks everyone !

I would love to discuss this with you. This has had a major impact on my life! Are you Facebook?

[stickandrudderman]

Why not have the discussion here so that others can benefit. I have been on TNF (Humira) for some three years now and I am completely symptom free, a fact that I celebrate every morning when I get out of bed and stand up straight. I have a class 2 with no issues.