Where do I start??

Bones, joints and muscles
1

Hello Everyonel, I'm very new to all this so please bare with me if I ramble on - I don't really know where to start.

I am a 31 year old female from the uk and 4 months ago I was diagnosed with A.S. Its been a pretty miserable and lonely few months as no one seems to understand how I feel. Isn't it such a difficult thing to explain? One day I can walk and live a fairly normal life - and the next I may be unable to do, well anything really.

I have had lower back pains for a few years now, and was repeatedly told by the GP that I had slipped a disc. I took all the medications the GP gave me such as painkillers and anti inflammatory meds, I spent hundreds, if not thousands of pounds seeing a chiropractor, went for all my physiotherapy appointments and continued doing the exercises assigned to me to help me with my "slipped disc". But I never seemed to get better. I was stuck on the floor for days at a time, not being able to meet my basic human needs such as getting to the bathroom or being able to cook. My partner would try to help me move but every time he went to lift me, my body would scream in pain and I would beg for him to leave me. One weekend it was so bad I was taken to our local A&E department, where the doctors told me to walk off the pain and take some over the counter painkillers. I begged the doctors at the hospital to give me a MRI, but this fell on deaf ears. A few days later I saw a different GP who said I hadn't slipped a disc and I had dislocated my SI joint. She said she could feel the dislocation and tried to manipulate the dislocation back in. I was sent on my merry way with more painkillers and more of an uncertainty as to what was wrong with me. As the weeks went on my neck, hands and knees were starting to get painful, again with regular visits to the GP. At last, months later I got referred to the Rheumatology team and after a MRI scan, blood tests and Xrays I got my diagnosis.

I'm still waiting to try the Anti TNF drugs, hopefully in the next month or so I will start. But I have so many questions and I don't know where to start. Not just about the drugs but about EVERYTHING.

Will I ever feel 'normal' again?

Would the manipulation from the Chiropractor have made things worse?

If the drugs work how long will it take for them to start?

I seem to be constantly 'flared' lately, does anyone else suffer for weeks at a time?

How do I stop the night sweats?

How do you walk/stretch/exercise when the flare up is so bad you have to walk with crutches or crawl everywhere? (If that's even possible).

I hope I haven't bored you, and I hope that I have explained things well enough for you to understand what a long, confused road I have had and its one that still seems to be ahead of me.

I could really use some advise if anyone out there could help?!

Yours Thankfully,

Flo.

2

Hi Flo, AS can really be a bitch can't it. I was told that the pain etc stopped after about 20 years and just left you with whatever deformities you had at that stage. Not there yet but I was told about 10 years ago that I would spend my later life in a wheelchair .( i was diagnosed late, 56 and am now 70) I moved to a warmer climate just over 5 years ago and things became noticeably easier but about 12/18 months ago it all kicked of again big time.I struggled to stand up etc. My doctor has now put me on Feliben (steroid) patches)and I am able to walk o.k. and do gentle exercises. Just have to avoid bending wrong and lifting and twisting sharply.So I have an almost normal life.( apart from the side effects of Feliben like constipation etc)

At one time a Doctor had me on Steroids and they worked well for me but my current Doc does not like Steroids, says they would make my bones soft. The beauty of the Steroids was that I had no side effects.

So to answer some of your questions , while life may never be the same it can be quite liveable and enjoyable.

Regards to exercise, I would suggest you do as much gentle exercise as possible, your Doc should be able to advise on this or there is help on the net.

I would expect drugs to start working quite quickly, probably within a week or even quicker depending on the drug.

You will have times when it is awful but you should also get easier times so chin up and look forward to the better times.

3

HI Trevor,

Thank you so much for your reply. And yes I totally agree with you - it is a full on bitch some days!!

I'm sorry to hear that your new doctor doesn't like steriods, although saying that my mum has been on them for 24 years and she has all sorts of problems due to the length of time she has taken them.

It would seem to me that its always a case of weighing up the options. for example the steriods or anti TNF therapy. If I start those injections then it looks like my immune system will take a beating. Its all pros and cons.

I'm pleased to hear that you are able to live quite normally. Its nice to know its not all doom and gloom.

Ive been taking regular Hydrotherapy classes and trying to stretch daily if I'm able. Do you have any thoughts on a TENNS machine? Just interested to know if it has helped anyone?!

Wishing you well. smile

4

P.S How i'd love to love somewhere warmer than the wet, cold, damp uk.

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Sorry, no experience with any machine and yes ,I know I am very fortunate to be living in sunny Spain.There

is no doubt it helps a lot.

6

Hello Flo. sounds like we're in similar places. my consultant is reviewing my surgical history now as I've had a significant number of bowel interventions he thinks may be related. I'm on 3 weeks of prednisolone 10 mg then reducing over 9 weeks. Then he wants to consider methotrexate. Although I've read that it is of limited value.

Keep strong and read up on the carb free diet!

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Lucy, please let me know how you get on with the Prednisolone. I found it worked quite well for me a few years ago and am considering going back to it despite my Docs opinion of it. I not recall having any side effects

either.

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Good Morning folks,

I will have a look into that Lucy, Thanks for the advice. I hope the prednisolone works for you. I've not yet been offered steriods in tablet form. Although I have been told I can have steriod injections directly into my SI joints while in a CT scanner so they can get the exact areas. (worries me slightly as it could take many attempts, with what I'm guessing would be a BIG needle). This is subject to the anti TNF drugs not working.

Totally flared up today, I blame yesterdays antics in the hydro pool.

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steroid injections were amazing result! and mine without ultrasound guidance.

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steroid injections were amazing result! and mine without ultrasound guidance. I'm having a competition to guess how many scams I'm going to have. Most recent wrists and hands.

11

Hi Flo31,

Speaking from my son's experience. He was diagnosed with Juvenile AS at age 16 at Stanford Hospital Rheumatology in California. Like you, initially he was misdiagnosed by several healthcare providers at a different hospital. Following correct diagnosis, he was put on Prednisone in addition to other oral meds to quickly reduce his joint inflammation - the steroid regimen was a temporary measure, never intended to be permanent. Within 3 months he was on Enbrel, which knocked out his inflammation for 4.5 years, resulting in full mobility (excluding some diminished flexibility from previous joint damage). Now, he is using Humira in the injection pen form. Working well, so far!

Re exercise - again, my son's experience: when your meds stop your joint inflammation, you will have a reduction in pain, and then it will be possible for you to exercise without discomfort. Rheumatologists love exercise for their patients. Helps strengthen the body support system, and keeps the joints lubed and flexible. Good luck!

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Hi Flo,

I started getting symptoms when I was about 21 (now 27) and for several years before I started Humira I stopped being able to do almost all activity. As you say even walking was horrific when I had a flare up. My advice - if you can, keep walking through the pain. I remember taking over an hour to hobble to the station once as I was travelling to see a friend (walk used to take me 15mins), and thinking I would cancel the whole thing. But by the end of the day I was almost walking normally again. Don't know how typical this is.

In response to your specific questions:

Will I ever feel 'normal' again? Maybe. I started taking Humira at about 24. I mostly feel 'normal' now. I still stretch extensively every morning and evening, and throughout the day at work, which tends to attract notice, but I really don't find it an issue at all. I partake in all sports I want to. Whilst my Doctor doesn't recommend some of my activities (tumbling not advised it seems), since I've been more active my flexibility has massively improved. I'm now more flexible than I've ever been, and more flexible than most men my age. The Doctor has been amazed at the improvement. I hope if I continue to remain active I will never get fusion of my vertebrae, but only time will tell.

Would the manipulation from the Chiropractor have made things worse? Sorry don't know! I was steered away from chiropractors by my doctor as it wouldn't help and could cause harm, but don't really understand why.

If the drugs work how long will it take for them to start? My Humira started having an effect within a month or 2, and after a few months I noticed a staggering improvement. As an aside providing I can stay reasonably well rested I don't find myself getting ill any more than I used to, but clearly this will be mainly down to the individual and I know potentially the side effects can be pretty bad.

I seem to be constantly 'flared' lately, does anyone else suffer for weeks at a time? I used to. I still have times when the pain is worse but relative to how bad it used to be it almost isn't even worth mentioning

How do I stop the night sweats? Sorry never had these myself. However generally my sleep improved massively once I was on Humira, so hopefully you will see an improvement too.

Hope things improve for you, keep us posted on how you get on.

Tim

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Hi flo hope your doing good 

I am 30 year old guy and have had a.s since I was 13 but wasn't diagnosed till I was 21 it can make you feel alone and no one understands what your going through. My a.s affects my neck shoulder upper and lower back and also my knees My rheumatologist has given me every drug over the years and none of them helped me at all until a year ago he put me on the anti tnf  injections enbrel etanercept 50mg one injection a week and it has changed my life I still might have the odd bad day but I can put up with the odd one or two bad days it has lowered my immune system but I can suffer getting the flu and that more often than I used to lol

I would definitely recommend people with a.s to ask their doctor about the anti tnf drugs 

If anyone wants to know anything about the anti tnf drugs drop me a message and I'll try and answer 

Sorry if some of it doesn't make sense first time on here and it's quite hard doing all this on the phone lolThanks all 

Jonathan-Luis 

       

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Hi Lucy, Methotrexate is a chemotherapy drug, which prevents cells from using folate to make DNA and RNA, which helps inhibit the growth of cancer cells that need these substances to make new cells. Methotrexate has been used extensively in rheumatoid arthritis, but there is no substantial evidence yet that it works for A.S. There are a lot of drugs and pain-killers that interfere with Methotrexate so I would not feel comfortable with it. Before I knew this I was on a low dose with this drug for a short while, and it did nothing for the AS. I'm not a good candidate for the Enbrel-like drugs and many others because I have secondary adrenal insufficiency and pancreatic enzyme defficiency. I found a cure using spiritual-hypnosis, but this approach is clearly not for everyone.

Cortisone (prednisone, steroids, etc) is a great cure-all drug, but it extracts calcium from the blood leading bone-mass loss and hence osteoporosis. Every drug it seems has its price, and finding the one with the best trade-off is a challenge given our individual physiology and sensitivity.

I wish you all well and hope you find a solution. 

15

Hi Flo,

My 21-year-old son has AS, initially diagonosed as JAS when he was 16. Since then, he has been on Enbrel (4.5 years), and now Humira, for about 1 year, after his system acclimated to the Enbrel - neutralized it - and it stopped working. Basically, on these injectables, he leads a pain-free, normal life. He bikes, swims, executes his college projects and work without inteference from his AK condition, thanks, currently, to the Humira. Would it be possible for you to try either of these meds, or don't you have access to them? That's the best info I can offer. I'm on the verge of leaving these discussions, so good luck with your treatment search. -JAS Mom

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Hi again all. Just an update. About 6 weeks ago a friend gave me some pills he recommended.I was fed up with the side effects I was getting from the morphine patches so cut down on morphine and started taking the se pills as well and still felt o.k. So I gradually dropped the morphine and after 2 weeks stopped it altogether.Had 3 nights with the shivers which I expect were withdrawal symptons but other than that it went o.k. A month later taking only the dl-Phenylalanine and I have just mild pain, no side effects and am feeling pretty good.

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I no how u feel its you thats suffering but in the end u just fink well leave me alone and let me suffer because people cant see the pain u can still feel it the constant aching and stifness not knowing wot to do for the best . Ive not been diaganosed yet but have been like this for years but seems to b getting worse now ! Had blood tedt and lumbar x ray so far all normal , which is good but dosnt explain ure pain !! I have all the symptons but who knows !! I jyst want to get back to work . At least u have been diaganosed and can start treatment ,, take each day at a time hope it worke fir u

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Hi flo31 my name is ricky and I know how you feel I to was misdiagnosed my doctor kept telling me I had just pulled a muscle in my back. That was untile I got uvilytis then I was told I had a.s  this might sound strange but I was over the moon. I was not a hypochondriac like my doctor thought I could see it in his eyes every time I went to see him.but I divert I was diagnosed with it in 1999 I have been on 2-3 different injection and am on humira now hope this helps.hope to corespondent with you again soon bye for now

 

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Hi we are in the process of moving to spain but I need to have Humira injections every 2 weeks, could you tell me how easy this would be.

20

Hi Jonathan

I am just about to start anti-TNF, can you please tell me if it worked? I have tried everything else for years now, and we are at the end of the road. I have heard amazing things about them, but obviously a little concerned about the risks. Are there any side effects? Thanks so much Rose x