Ankylosing Spondylitis both ends of the s... - Arthritis Action

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Ankylosing Spondylitis both ends of the spine

Hermes123 profile image
4 Replies

Dose any one else suffer from this and to be told by your G.P. there is nothing else we can do for you, due to the fact your on the maximum amount of pain relief drugs already.

I am riddled with Arthritis in every joint, recently had an ex-ray on my right hip, thinking I needed an hip replacement, when I visited my G.P. for the result, He said I have some good news and some bad news, the good news is you do not require a hip replacement, the bad news is you have Ankylosing spondylitis at the base of your spine and due the maximum pain relief drugs your already on, there is nothing more I can do for you. already have it in the neck and shoulder area for a number of years now. I feel spaced out on tiredness and a job to think. is anyone in a similar position if so what do you do.

Bobscott.

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Geonome profile image
Geonome

Have you seen a rheumatologist? Have you tried a biologic medication, which is commonly prescribed for ankylosing spondylitis? Biologic medication is usually prescribed to treat the underlying inflammation which will result in a reduced need for pain medication. Biologics can only be prescribed by a rheumatologist, in Canada anyway.

Hermes123 profile image
Hermes123 in reply toGeonome

Geonome, Thank you for your reply, no to date not seen a rheumatologist but think this has to be the next step, what annoys me is we are suppose to be the patient and the GP. if they cannot provide an answer, to send you to the next stage at least for a discussion on ones situation. Not sorry there is nothing no one can do for you, if a patient does not ask the right question instead of the other way round. I know in the USA. and Canada there are far a head of the treatment offered in the UK. A friend of mine who's daughter works in a skeletal clinic in the States, asked if i knew of a Lenova Id. it sends high frequency to the brain. All beyond me I'm afraid, Biologics never heard of it. but I'm very grateful for the enlightenment. Hermes.

Geonome profile image
Geonome in reply toHermes123

Hi, Hermes.

To add to my previous reply:

If you have not seen a rheumatologist yet, I would ask my GP for an urgent referral. If it's possible in your country, I would see one privately if I had to. The rheumatologist, in my opinion, is the key to successful treatment. I would also do an internet search on treatment for ankylosing spondylitis, and arm myself with knowledge about the condition and the possible treatments. There are other treatments available, besides just pain control. The biologic treatment is the 3rd line of treatment. First I would expect the dr to try anti-inflammatories, and it sounds as if you've tried them, unsuccessfully. Next they try what is known as a DMARD (disease-modifying anti-rheumatic drug), like methotrexate, imuran, or leflunomide, or similar. If these drugs don't work, they may add a biologic. At least, this is what happened to me over the past 30 years, and my arthritis is treated similarly to ankylosing spondylitis. I now take a biologic (one injection every 2 weeks-Humira). I've been on a biologic for 6 years now, and do my own injections. I sometimes wish that I had started these medications earlier, as my neck is now fused from the chronic inflammation. Oh well, live and learn. At least it doesn't hurt any more.

To encourage you, I want to let you know that my pain is well-controlled, I have not had any joint replacements, I take an occasional Tylenol for back or knee pain, but I'm healthier than I've been in a long time.

Best of luck to you! And yes, the doctor is supposed to know these things, but you often need to be your own advocate to make sure you get appropriate medical care. It's too bad, but that's the way it is.

Geonome

Hermes123 profile image
Hermes123 in reply toGeonome

Geonome, I wish you had been around when I retired some fifteen years ago, someone who has been there done it and come through the other side. As for private health care I have none and cannot afford in, when working I spent all spare money on every type of conceivable treatment available at the time, so I could keep working, despite the general perception retirees are all wealthy living the good life, at Age UK. club I attend the number of people living on a comfortable pensions is very low indeed. If one owns one's property then that suck away any spare cash one might have chasing bill after bill. So unfortunately we have to rely on good old NHS. sometimes like flogging a dead horse. But I do take on board where you are coming from with sound advise, I cannot get a decent night sleep if it's not the neck and shoulders, its like last night right hip bone down to knee cap terrific pain, having to give a real hard massage for which I don't have the strength to rub. Recently had wrist and elbow operation which made things worse, hands joints hurt trying to get my prescription out of the burst packaging, strangulation feeling around my left wrist like a tighten elastic band ankles and feet give away when walking, apart from a walking stick people would think there was nothing wrong with me, except regulars who look at my face and say your in a lot of pain today. Hermes123.

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