Ankylosing spondylitus - sore neck/knees

[andrewmacbeath]

Ankylosing spondylitus - Neck movement and inflamed knees and ankles

I am 31 years old and was diagnosed with AS a few years ago.

I have limited rotation in my neck and have tried everything except a witch doctor to improve the movement, could anyone suggest anything that worked for them or heard works?

Also I have been in a fair amount of pain throughout my body for a few years and in order to keep my job I have avoided any treatment. I have a young family and we are reliant on my job so I had to put that before my health. However it's got to the stage where I have had to start taking sulphasalazine to see if it helps, as I can no longer function without some sort of treatment. My knees and ankles are quite sore and I was wondering if anyone had any suggestions to reduce inflammation/pain in these areas? Will sulphasalazine help with this? I have been taking the tablets for a few weeks now.

Would really appreciate any help.

Thanks

Andrew

[Glyn612]

HI Andrew, I have inflammatory arthritis and was on Sulphsalazine for about 18 months. I noticed an initial improvement but after a while they weren't very effective so I'm now on MTX (methothrexate), but haven't been on them long enough yet to see any effect. Are you taking any anti-inflammatory drugs (NSAIDs)? I've been taking meloxicam for years now and don't think I could function without them. If you're not, then ask the doctor about it. A short course of steroids helped me through a very painful period recently but they are only prescribed short-term. I have a painful ankle and I find wrapping an ice pad around it helps. You can buy gel pads from Boots which you can either put into the microwave to warm up or in the freezer to use as ice pads. I also have painful knees - again, ice pads may help, but physiotherapy to improve the muscles around the knee joints is also helpful. If you haven't been referred for physio then again ask the doctor about it. Sorry if you've already tried all of the above, but if not I hope some of it helps your pain.

[andrewmacbeath in reply to Glyn612]

Thanks very much, I will give that ice pads a try. I am taking Ibruphen, 2 per day, they seem to dampen down the pain a good bit. I have been referred to the physio so hopefully that makes a difference. I am hopeful Sulphasalazine works, if not I can give MTX a try. thanks again for your help

[Glyn612 in reply to andrewmacbeath]

Sorry I forgot to say yesterday that sulphasalazine takes between 6 weeks and 3 months usually to take effect so hopefully it'll kick in for you soon. If the ibuprofen works for you then I'd definitely consider an anti-inflammatory drug - there are lots out there but the one that worked best for me was meloxicam. You take one a day and they have a cumulative effect, in that the longer you take them the more effect they are. Perhaps your doctor has already suggested this (and if he/she hasn't then I'd suggest they've been a bit remiss to say the least) but if not then it's worth mentioning it. Good luck.

[andrewmacbeath in reply to Glyn612]

Been on the sulphasalazine for 3 weeks now so will hopefully see the difference soon. Ibuprofen makes a big difference in pain and mobility and I will definitely suggest meloxicam to my Doctor. My local GP told me initially my lack of mobility was old age/wear and tear, at the time I was only 27 so I told her that was highly unlikely, lol. I told her the problem had been persistent for almost a year and she told me to come back in two weeks. I went private and was diagnosed within a week having had an mri and various consultations. I am now seeing proper specialist Doctors so hopefully they will see me okay. Many thanks for your advice, will give it a try.

[Elphabafromcornwall]

Hello, it is a difficult situation to be in - especially with a family and financial commitments. I can honestly say that I now manage work very well working part time (2 and a half days a week) when I worked full time I could not cope, my fatigue was bad and my pain levels too high to ignore. I worked in a support role in a secondary school at the time and could barely manage to get from one side of the site to the other. I now have a blue badge which allows me to park near my work place and I am so much better. I take methotraxate as the sulphasalazine made me feel really ill. Hope you feel better soon. As a positive note to you (I have RA) my first cousin had Ankylosing spondylitus diagnosed at 16 and went into a 10 year remission in her 20's. Keep the faith. Dawn

[andrewmacbeath in reply to Elphabafromcornwall]

That's great, hopefully mine goes into remission and the meds make a difference, failing that I can try MTX and hopefully see similar results to yourself. Many thanks for your help.

[dazzlebandit]

You do have to take care of you to function! I lived in pain for 10 years and let it make me not want to live anymore before I sought treatment! I started on Sulfa but it did not help. Then went to MTX and had a lot of improvement. My real life saver is Prednisone though!! I do know how bad these meds are for all of us but I lived in complete agony for long enough that I refuse to look back! I cannot understand a job that would not want you to take care of you ether!

[andrewmacbeath in reply to dazzlebandit]

Yeah I work offshore and I get an annual medical (thorough) and they basically told me if I was on meds I would be out a job. With three young kids and a big mortgage I had to reduce my outgoings by downsizing house, smaller car etc before starting any meds. The work is more concerned with insurance liability unfortunately than employee health. Not everyone agreed with putting my job before my health but when your talking about losing your house and not being able to support your family it was a clear decision for me.

A lot of people here are saying MTX is the way to go, so that will hopefully make a difference for me if no joy with Sulphasalazine.

Thanks a lot for your help, much appreciated.

[dazzlebandit in reply to andrewmacbeath]

I completely understand!! My husband is the "bread winner" and self employed. our insurance doesn't cover anything so I just never wanted to be the reason that our rates went up or the reason for medical bills or med bills, ect.! That is what took me so long to get help! Good luck - I ma glad that you can focus on getting a better quality of life!!

[Hidden]

You may want to investigate whether you meet the criteria for biologic treatment. I have Psoriatic Arthritis which belongs to the same family of diseases as AS and Humira is the only thing that has provided consistent improvement so far. That would be 'consistent and wonderful' improvement. At your age, with your responsibilities, push for the most effective treatment possible.

I must admit I don't understand why you felt you had to avoid treatment in order to keep your job. Plenty of people on much more 'aggressive' treatment than Sulfasalazine live very active and productive lives. I would have thought that focusing on your health would be the very best thing you could do for both you and your family and shouldn't impact on your ability to work. The disease might well impact on that, however, unless you get it well and truly under control.

[andrewmacbeath in reply to Hidden]

Thanks for that. I was considered for biological treatment but due to my work I could not start the treatment. Yeah I work offshore and I get an annual medical (thorough) and they basically told me if I was on meds I would be out a job. With three young kids and a big mortgage I had to reduce my outgoings by downsizing house, smaller car etc before starting any meds. The work is more concerned with insurance liability unfortunately than employee health. Not everyone agreed with putting my job before my health but when your talking about losing your house and not being able to support your family it was a clear decision for me.

I have got the house and that sorted now so if I get sacked its not a disaster, lol. I am now focused on my health and hopefully can get a bit better. Thanks for your help.

[Hidden in reply to andrewmacbeath]

That's a really interesting situation. Pretty dreadful really - not sure my brain's really in gear but I'd have thought you'd be more of an insurance liability with uncontrolled AS than with meds given some of the things that could happen to your spine. Don't want to scare you but there are risks and it sounds as if you are now ready to take a long, cool look at the whole shebang. It is so good to hear that you are now focused on your health and what you've achieved is pretty amazing in the circumstances.

[andrewmacbeath in reply to Hidden]

You are right, I would have thought meds would have been better for my employer but they never agreed. Had to fight to keep my job at the time. Now I am 100 % focused on doing the right thing health wise, so all should be good. Thanks again for your help, much appreciated.

[earthwitch]

Exercise, exercise and exercise - but the right kind. Check out the downloadable exercises (and app) on the National Ankylosing Spondylitis Society website nass.co.uk/ Its also well worth joining NASS - doesn't cost a lot and you get a great magazine as well.

Sulfasalazine does help some folk with AS, but unlike RA, DMARDs don't actually function in the same disease-modifying way with AS. First line treatment is almost always NSAIDs, and once you have gone through those (to the point where you don't get enough relief or can't tolerate them any more) then the next step in the protocol should be anti-tnfs. Unfortunately in the NHS they seem to want to stall off use of anti-tnfs as long as possible, so will often want you to try either MTX or SSZ first. If it doesn't do anything, or do enough for you once you have built up to the full dose (which will take around 3 months) then definitely talk to your rheumatologist about antitnfs. The NASS phone advice line can also give you more advice and you can download info sheets from their website too. They will also let you know about any exercise support groups in your area. Daily stretching exercises and staying active are just so incredibly important with AS, which as you will know gets aggravated by inactivity.

Also think about joining one of the international AS forums as well - either the spondylitis association of america, or kickAS - both are much bigger forums, and give great information and support for anyone at any stage of the diagnosis or treatment journey for AS. This group is great for british-relevant support, but you can't beat the expertise on the specific AS forums.

[andrewmacbeath in reply to earthwitch]

Thanks very much. That information is very helpful and I will join NASS and the forums you mentioned.

I was looking for any information that would help and I really appreciate you taking the time to provide that information.

I will hopefully make good progress with controlling the AS.

Many thanks

Andrew

[Claudiaboscamp]

Sulfasalazine didn't work at all, switched to naproxen 500mg 2x day, works much better,most days, not today my pain is awfull, but it generally makes me feel better, a lot worse for you in the long run,