Are you in a support group for your ankylosing spondylitis?

Hello 

I suffer from Ankylosing Spondilitis affecting my whole body (it's like rock in a kettle building up on my joints), diagnosed in early 2002. My diagnosis of Ankylosing Spondylitis came about during an operation on my right wrist for a condition called Peritendinitis Crepitans, (inflammation of the sheath around a tendon, which was caused by friction or overuse, not by a trauma), the operation was to release the sheath from the ‘groove’ that the swollen sheath had worn in the Spondylitis. The operation itself was a complete success but the following months and indeed years of treatment for pain management have had its toll on my ‘inner self’ as well as my general health.

The first drug I was given for the A.S was called ‘Methotrexate’ which is a very potent drug, a member of the Chemotherapy family used in some Cancer treatments. This knocked my immune system for six. As a result, I would contract Thrush every 4-6 weeks for about 2 years, then a Chest infection a few times, Ear infections, severe Toothache. Then the last few years it has been Iritis, one or rarely both of my eyes would swell and get very sensitive to light (making night travel a No-No). At its worst I had 7 Injections under the top 3 or 4 layers of skin on my eyeball. No pain just irritation.

Now things have quietened down a bit, not so regular now. I take several painkillers and I have  been taking an anti Tnf drug called ‘Humira’ for several months, if your symptoms can't be controlled using painkillers or exercising and stretching, anti-tumour necrosis factor (TNF) medication may be recommended. TNF is a chemical produced by cells when tissue is inflamed. Anti-TNF medications are given by injection and work by preventing the effects of TNF, as well as reducing the inflammation in your joints caused by Ankylosing Spondylitis. Examples of anti-TNF medication include: Adalimumab: Humira and Etanercept; Embrel. Since taking this concoction of painkillers and Humira my overall pain levels have improved by around 40%, giving me a better ‘quality of health’, I still have my good days and very dark days but Hey Ho, get on and make the most of it, you only get one life? Without treatment the worst-case scenario is ‘fused back’ and in a wheel chair.

Impact on daily life
I love fishing, alas I don’t manage to go as much as I used to 16 years ago, but I do get out 3 or 4 times a year, my other passion is ‘water colour’ painting but again not as much as I used too. I’ve only painted 6 in the last 15 years. I can’t sit for long periods and paint, just a half an hour here and half an hour there, so paintings take quite a while to complete. My DIY has gone and now it’s DBS, (done by someone), I used to revel in building kitchen units or book shelves or literally anything in wood, yep bowls an’ all, but now that’s impossible.

My family and friends have accepted the ‘now’ me as the ‘norm’, they can’t or won’t remember me as the happy go lucky son of a so and so that I used to be. My life has changed immensely but you just learn to accept ‘your lot’ and make the most of the life you have. Take a leaf out of my book on life, ‘don’t let the b******ds beat you’, ‘think and stay positive’.

The nearest support group to me is in Bath about 20 miles door to door, so that doesn't work very well with other commitments, GP, Hospital visits etc, etc. So I just get on and make the most of life and live every day as best as I can and be grateful that I can still write articles for you?

Take Care

Richard

Thanks for sharing your experience Richard . My brother was recently diagnose with Ankylosing Spondylitis which we don't know anything about this disease .I don't know if this is a serious condition and if it is serious problem where can we get support? Thanks 

Jos

Hi Jos

Ankylosing Spondilits is  degenerative disease, which usually affects the spine, hips, shoulders and neck. If it is not treated will leave you with serious mobility issues, the spine MAY fuse together in certain parts or indeed the whole spine. Look at the RNHRD Hospital (Royal National Hospital for Rheumatic Dieseaes) IN BATH website. It is world renouned for it's diagnosis and treatment of AS and other arthritis complaints. It is the best hospital in the world, you'll get no better treatment anywhere else.   Look at the Carenity section on As, it is most helpful. I am away from home until late tomorrow, once back I'll be able to get back to you with more details etc.  Good luck. 

@cutejas02‍  Thanks for this information @richard0804‍ :)

Hi Jos  As promised please find the link for the RNHRD in Bath. cut and paste into your browser and you will find a huge assortment of therapies and treatments which are available to patients suffering from A.S.

/our-services/rheumatology/clinical-services/outpatient-therapy

If your brother is looking for specialist treatment tell him to ask his GP for a referral to the hospital. There is accommodation around but rather expensive in Bath, but if he likes I will meet him from our local station and take him to the hospital for his appointment, then I he want's too he could stay over night with my wife and I and go home the following day?  If he's feeling too tired to go home? It's just an idea, because it can knock the stuffing out of you. A genuine offer from a fellow sufferer.

Good Luck Jos    Take Care  Richard

@richard0804  @cutejas02‍  what a lovely offer Richard, you are a very kind soul with an amazing heart. 

Hi Josrphine and Thanks Richard for your information and sharing all these. My brother and other sister went to Hospital today and  the consultant recommended a treatment together with physio and especial nurse to look after my brother. Once evrything in place I will post it here. Initially the GP prescribed Methotrexate but the rheumatologist consultant said to my brother that he is going to have a regular  injection.We will wait and see what happens next. All the best. 

Joe 

Jos

@cutejas02 

Thanks for keeping me in the loop.

Your brother was probably prescribed 5 or 10 mg of Methotrexate to start ( building up to the 10 mg over a couple of weeks). I take a Folic Acid tablet on a Saturday then my Methotrexate on a Sunday, you MUST take a Folic Acid tablet FIRST. I also take Naproxen and Tramadol, 1 (Naproxen) to bring down the level of inflammation in my blood and the other (Tramadol) is a very strong painkiller. You may in time be offered a group of drugs called 'Biologics' these need to be funded by your local Health Authority? Biologic drugs are used for treatment of numerous diseases and conditions, and are the most advanced therapies available. Early symptoms of ankylosing spondylitis can be very deceptive, as stiffness and pain in the low back can be seen in many other conditions.

Very intense Physiotherapy is often offered to run alongside your medical intervention, this is to help to increase movement and reduce inflammation in the affected areas. I found this approach to be most helpful until a regime of medical and physical treatments were finally agreed.

My Consultant Mr Raj Sengupta at the RNHRD in Bath is the 'Top man in his field' of rheumatology, he is very involved in the research and development of therapies to help Arthritis sufferers. I don't know where you live but I am sure that your consultant will do what is best for your treatment.

Good Luck Dear friend.

Richard.

@JosephineO 

Oh Josephine , Josephine, Josephine. Do you have a replacement back and set of hips in your pocket that I can have Please?????

I am suffering from a really 'intense' flare up with my AS, it came on Tuesday morning in the early hours. I put it down to the long drive, Monday, back from holiday in Combe Martin, North Devon, nearly 3 hours due to traffic.  I must not complain really because we had yet again a really enjoyable holiday where the weather was very good to us as usual. We had rain  on 2 occasions, during the night or early morning, so lucky? What is they say?? 'The sun shines on the righteous' We were certainly lucky, plenty of exercise for me, more for the wife and little dog  Toby. Just rest and 'Keep taking the tablets'...lol....lol

Chat soon. Kindest Regards

Richard