A.S my story

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Hi All, I'm nearly 41 female and have A.S, Crohn's Colitis, Secondary Arthritis, Fibromyalgia, Probable Lymphoedema of the face, breast calcification, Iritis (not confirmed), Depression and mild OCD, think I'm just greedy lol.

I had an industrial accident in 1993 prolapsed disc, ever since my 20's I have suffered with back pain. I was diagnosed with Fibromyalgia in 2003/4 (worked on the point system), A.S (HLAB27 positive x-rays & scans) I have fusion in the left and right sac joint and in the thoracic area 2005. Crohn's Colitis (colonoscopy and endoscopy) 2009. Secondary Arthritis (affecting peripheral joints, hands etc) 2011. Breast calcification & Lymphoedema this year, life has been interesting to say the least.....

I've been reading through your threads and it still amazes me how little the supposedly experts know about this condition and how to treat it. I have been on Diclofenac, Indometacin, Sulphasalazine, Prednisolone, Steroid injections, Asacol, Mesalazine, Humira, Methotrexate and now been told that there is no further treatment as the other drugs have been not effective or too many side effects, these are just to relieve the symptoms of the A.S, the only one left is Infliximab and that has been taken off the NICE list in my area (think it is a post code lottery again). Painkillers well I've been on all of them except Sativex (this is a synthetic version of cannabis on prescription). They told me I have had the Crohn's Colitis as long as I have had the A.S it was the painkillers that was masking it..... now it comes to light that I can't get on with anything opiate based which is pretty much all pain killers or the others just give me side effects and no relief......

Over the years the A.S has got progressively worse as I was advised on my diagnosis "Oh it's not a death sentence" they just forgot to say it would be a life one! With no cure!

I have always had inflammation in my knees but not too painful, lower back is always sore and tender to touch, limited movement, with burst of severe pain on certain movements. Upper spine I have bone growth along the ribcage where my bra has rubbed so I was told I had to wear no wire bra's (great I so want knee warmers lol). I have difficulty breathing, expanding the ribcage so have taught myself to breath through my stomach, it affects my shoulders and neck and again severe pain in the upper part of my body so again limited movement. I use to be a size 12 and 5'4 half now size 6 (can fit in children's clothes) and 5'2 now. I feel like I'm half the woman I use to be lmao if I had one lol...

If I can help anyone on here please feel free to message me about anything, I have battled with this on my own for the last four years after my partner left me because he wanted children and given what I have...well I think it speaks for itself.

Katherine x

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10 Replies

  • Posted

    Hi Katherine, I have a similar story, thanks for sharing it. I just wanted to say you are very brave and I am so sorry that you are on your own. I am lucky as I have a family and supportive husband, it makes all the difference.

    I joined the Arthritis Care site and forum a few months ago, as a lonely and tired old gal. I also peep at Pain Support discussion forum too and it makes me feel I am not alone.

    They have been great and I really enoy the input from everyone. I've only recently been looking here too.

    If you feel like it have a look at them.

    Just wanted to say, hang in there, you are a strong person, take care of yourself. Fanny Jane.

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  • Posted

    Hi Catherine - strewth, you do have a right plateful. And none of the medications have done any good for you. Bet the anti-TNF did the number on causing the lymphoma - can happen with the anti-TNF meds.

    I have AS; IBD; Costochondritis - and enthesisis of the rib cage; Sjogren's; Raynaud's; peripheral arthritis - all big joints plus feet and hands. Have a replacement hemi-arthroplasty in left shoulder (surgery that never should have been done!) I also have a vile spondy neck with an osteophyte that crunches into my aesophagus causing dysphagia and dysphonia (lubly-jubly!) . Psoriasis - three different types, but all very mild, and mainly effecting feet and hands and scalp. Now throw in glaucoma, spiking hypertension and a couple of TIAs and voila, what a picture...

    I take very few meds, at all. Low dose Naltrexone is my main med - see lowdosenaltrexone.org and ldnresearchtrust.org and ldners.org. LDN takes care of my spinal inflammation and, in the main, my IBD (recent trials at UC Davis, America, have shown LDN to be a viable treatment for Crohn's). I also follow a low starch diet - that is staying away from starchy foods...

    For breakthrough pain I use Remedeine, my med of choice: Paracetomal + codeine. But very very rarely have to take. Codeine is of course an opioide, so mebbe not suitable for you.

    I do stretching exercises, check NASS for this - and try and locate your nearest NASS group: National Ankylosing Spondylitis Society - worth taking out a membership. They are most supportive and Nass groups run exercise evenings etc - many of which are attached to local hospitals. Also know, that the

    Royal Rheumatology Hospital at Bath, the MIN, runs10 day residential physiotherapy courses at the hospital. You can check out the details on line. Just HOPE that they will be able to continue to run these courses, it would be such a huge loss to the spondy world if these were cut due to NHS cuts! I attend physiotherapy and exercise classes. Has been most beneficial. Physio is trying to keep my straighter: kyphosis and adult scoliosis - have lost just over 4" in height.

    Will also suggest checking into one of the very best support groups going: www.kickas.org. Superb. An international group. Support all the way. Really friendly. I have learnt so much from them - especially about diet, low starch and no starch diet (LDN/NSD). I have made some good friends on KA - all be it some at rather a distance!

    Hope this has helped some. Remember there IS good support out there.

    (Sorry about the formatting - trying to get the hang of the format style, all I seem to get is weird end line breaks! OK. 'Think' I now have it sussed. Hmmmmm!!)

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  • Posted

    Hi Franny Jane,

    Thanks for your post, like you say it is nice to know that we're not alone in this battle. I would also say it is good to meet other women with the same condition as I've only ever met men and as we know our body's are built slightly differently so we do experience different aspects of this condition and then some....

    Also those forums look interesting so will be having a peak at those so thanks for that as well.....and as for being brave, I'm a little force to be reckoned with lol, no matter what they throw at me :-)

    thank you so much.....

    Katherine x

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  • Posted

    Hi Molly,

    Thanks for all the info and it sounds like you have your fare share of it. Yes they think the Humira caused the supposed Lymphoedema but I'm still being tested for that as they are saying that there is neuropathy now, just more joy lol....

    I did try and join the local NASS group but it was very small and only consisted of old men so really wasn't interested how it affected them if you catch my drift. I was having ultra sound treatment and found that quite beneficial, they wouldn't give me any further Physio and they told me that the NHS wouldn't pay for any more than I think it was 8/10 sessions of the ultra sound. I do exercise on a daily basis it's a mixture of pilates and yoga which I have developed myself, I also sing alot as I find this helps with the expansion of the ribcage and keeps it moving, not sure whether my neighbours are impressed but no complaints as yet lol.....

    Funny enough just before I received your post I had a Rheumy appt and spoke to them about LDN, I have heard of this as I do like to do a bit of research myself and are on other forums but as I was told by the Consultant they don't use that drug. So my question is if you are U.K based how did you manage to get this drug prescribed? I also spoke to my Pharmacist which in my book has been better than most of the G.P's that I have seen and was told that in the U.K it is only licensed for the use of addicts and even in the States there is no firm evidence that this drug is effective for this condition. Don't get me wrong, I would love there to be something else but I got told in the consultation that they won't even try the Infliximab on me now especially because of what my Dermatologist has said about the Humira.....

    Thank you

    Katherine x

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  • Posted

    Hi Catherine - LDN is available. There are a few doctors 'in the UK' who do prescribe LDN for their patients. For those who are slow in coming forward, there are other doctors who will prescribe, so long as you have a confirmed diagnosis. At the moment LDN continues to be an orphan drug. But, there is the distinct possibility that this will change. Please check out the LDN sites I put up for you. Through those sites is information as to pharmacies who dispense LDN in the correct format (UK refers) and gives links to doctors who will prescribe. In addition, LDN is available over the internet - but is expensive. Just makes me angry that some persons are obliged to take this route!

    I have a pvt doctor who prescribes for me. Have been on for a number of years - coming up five years now. Stuff is superb. No side effects. Some people do get vivid dreams from LDN but me? am still waiting Au contraire. UC Davis has shown that LDN has a good response from patients with Crohn's. Problem with LDN is that it is a very cheap drug, really not worth the attention to bring to market by the big drug companies - they don't want 'cheap drugs'. Much prefer to push the horrifically expensive anti-TNF biiologics, and all the rest. But. 'A' small pharmacy company has purchased the LDN lock, stock and barrel from Dr Bihari's estate with the object of bringing LDN to market. There is a lot of relevant 'good' LDN use - has a very strong track record. But as we are discussing on kickAS, reckon the price will skyrocket just as soon as the FDA gives clearance for alternative use...Ho-Hum! But that won't be for a long time yet: 10 years? maybe even 15 yrs! (Do dive into KA - a fantastic group, basically all spondys and all with different AS problems. They have truly been my life saver. You can lurk in the background, read all the posts. See what gives. When you feel like it, join. It's free. (Took me several months to pluck up courage to join. Everyone seemed to know each other sooooo well, felt like I was 'butting in'? What a dumbo! A truly utterly supportive friendly group with a huge wealth of knowledge.) You'll find the 'Alternatives' forum there and the 'Diet' forum - and a good exercise forum as well.

    As for NASS. Visit the website. They have excellent stretching routines. Can also purchase the DVD - but think this may require membership. Also check out the various NASS local associations. NASS has changed a whole lot recently - new director. She is doing an excellent job. Heavens, they are even talking about treating via low/no starch diet...!! That IS a turn up for the books! They also post up the latest research papers. Most pertinent. Saves a whole lot of searching, finding out what EULAR are up to (European Union League Against Rheumatism - naff name!) Sadly, the NASS forum is still pretty hopeless. But see IF they have a viable meeting group near you and IF exercise classes are run, aqua exerciuse classes etc etc. You can contact em direct. Debbie is the lass you want. Most helpful.

    Also check out Spondylitis Association America. They have an excellent website AND a full coverage of exercises on-line, free. And same as with NASS, many research papers are also posted up on the SAA website. Well worth checking out as they have some very good information and papers to get dug into.

    Stay well away from the biologics - thank goodness I am unable to take em either! Have a pre-skin cancer condition and those biologics can cause full blown skin cancer! And I aint gonna go there! NSAIDs *will eventually rip out yr guts. Even with a gut protector, long term, they are 'lethal'. Only know of a handful of spondys who have notbeen so damaged by NSAIDs - and there are 'many' monoigrraphs/research papers published on the effects of NSAIDs and the gut - see EULAR. OH yes. KickAS has an vigorousl y updated 'spongylitis research' section - anyone coming across new spondy info puts up the paper. And this includes from those actually working in the health area. It's all good information - especially on the genes link.

    Of course there is no cure. As is management only, with a health care 'team'. One needs to do one's own research as well. Keep up to date and be proactive. That way, will be doing the 'best' for 'oneself'.

    Hope this has helped - take care - go well -

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  • Posted

    And i thought i had it bad. Hi new here had AS since 19 now 44. My back is bent over very bad. Spine totally fused ridged. Lots of pain every day been on diclofenac for 25 years + codine 8 a day plus diazapan and still alive just. Have breathing probs pinched nerves the lot. Been offered Anti Tnf thought it might be life changing but reading posts on here has made me think. Have not started Anti tnf yet but been excepted for it. What should i do ? Does any one have any thoughts.? Thanks John.
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  • Posted

    Hi Molly, just wanted to thank you for all the information, I will be looking into that over the next couple of months and hopefully come back to you with my progress x

    And John, I also was dubious at first with the Anti-TNF treatment and to be honest with every medication they have put me on. I have heard alot of success story's for this particular medication which in my opinion was designed for the likes of us. I was unfortunate that it didn't work for me but that does not mean it will not work for you, we are all different and what works for one may not work for another. I did get some relief from this drug, be it only short lived. If they are offering it to you I would go for it.....and if you do keep us posted...

    Best regards

    Katherine x

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  • Posted

    Hi i had my first Humira injection on Friday at 2pm by 4pm i felt better than i have for years. The next day better again. Today Sunday walked my dog for a mile at least. I have not taken any co-codamol today and feel so good. I was taking eight a day up untill Friday. I hope its not short lived. I thought other people on here with AS would find this interesting. Love and peace to everyone. John.
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  • Posted

    Hi John

    That is fantastic news, really hope it keeps doing what it is doing :-) Sometimes I have heard that it does have an immediate effect and it is like a miracle cure. Don't want to alarm you but do be careful of peep's with any infections/viruses as you will be more prone to picking these up so keep safe and healthy....

    All the best

    Katherine x

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