28 yr old with AS - diagnosis to treatment is taking so long

Posted , 7 users are following.

hi all, 

i have been suffering with hip and groin pain for over 10 years and like most people I was fobbed off by my as having a 'weak core' and told I needed physio. I was extremely active for those ten years, used to be in the gym 6 days a week and even ran half marathons. In the last year my symptoms got worse with extreme groin/hip pain which my GP put down to a strained muscle. It eventually got so bad that I was in agony in both my legs and hips and could not walk without clinging on to the walls or furniture so I took myself to A&E. The Drs couldn't believe I had been getting around and actually asked me in bewilderment how I had been getting to work or just managing to leave the house? I was unable to lift my legs off the floor, under examination. I admitted was hospitalised for 4 days in December and put on steroids 60mg which worked instantly and was told I would get an apt with a Rheumatologist in January to discus treatment, I didn't actually get one until March and by this point I had tapered off my steroids and the pain had started to come back. I was told that anti TNF would be the best option for me, however I had to wait 2 months due to the NICE guidance. It's now June and I'm still waiting, I'm currently on methotrexate (makes me exhausted and very depressed) and sulfasalizine, though my rheumy told me they were unlikely to work. I'm now in constant pain and can't get around without a cane, I've also had to move back to Yorkshire with my parents (I live and work in London) as I have no one to help me in London (I live alone) and often need help getting dressed/getting shopping etc. I'm so frustrated I was diagnosed in December and I still waiting for treatment. 

I wanted to know if any one else has had extreme groin pain with AS.  It feels like my muscles are being ripped to shreds some days, and I have no strength in my legs and have to pick them up and lift them with my arms  to get into bed - is this normal with AS? My rheumy says my hip is damaged, so maybe it's due to this?

i asked for a cortisone injection into the hip, but I'd had a needle aspiration in my hip to draw fluid whilst in hospital which showed infection So my rheumy is scared to give me one in case I get septic arthritis

I just want to be able to be active again and get my life back on track, and would love some support. 

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13 Replies

  • Posted

    Hi Linsey I have had as for 15 yrs it's very painful I also had a very bad motorcycle accident at the age of 18 I broke pelvis , both wrist nose and dislocated my shoulder and hip but they put me back together I was in traction for 6 weeks I'm now severely in pain with nerve damage not to sure what It is its in the buttarck do you have any problems with this? Many thanks Paul
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  • Posted

    Ow and I am on anti tnf ,embreal it is extremely effective but as with all medication side effects are not nice but the benefits are better
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    • Posted

      Hi Paul.

      Sorry to hear about your accident, that sounds awful, but sounds like you're very lucky to be here!

      I'm waiting anti TNf, I will try anything to get my normal life back! At the moment the pain just seems to be getting worse.

      I do get pain in my right buttock, which I know is common with AS, but I can't seem to find anyone else who gets the terrible groin/thigh pain. Even when I stop moving, my thighs throb with the pain and feel very inflamed, I have to swing my legs round in order to walk as stretching my inner thighs is so painful.

      I guess I just need to put up with it until I start the anti TNF, and then hopefully I will be back to my old self and be able to get around!

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    • Posted

      I really hope it works for you because if I wasn't on it I would be bed bound if they offer you it my advice would be to take it do you know it's £100 per week so my advice is to get it it's helpful to me nice to speak with you GB you
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  • Posted

    Hi Linsey,

    I am sorry to hear about all the pain you have been going thru. The two things that got me off the cane is Gabapentin and Mobic! Without those two things I couldn't walk good either. I still have hip, buttock, leg and back pain but not as bad as I did. I also had deep tissue massage, which is painful and he could massage my hips cause it was way too painful but it dis help my back a bit and my legs as well. Just something to think about. I couldn't take methotrexate either as it gave me severe cold sores. I am currently waiting to take my Humira once my sores are gone I can start taking the shots again. I sure hope you find some relief soon.

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    • Posted

      Hi Tina I see your on gabapentin how do you feel mentally on them ? Because I was given 300 mg to take 3 times a day omg I took one lucky I was at home I fell asleep for 2 hrs I think and woke up didn't no where I was and my arms were moving uncontrollably just lucky I wasn't driving 😅

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    • Posted

      Hi Paul,

      Oh boy that sounds like a lot of Gabapentin. I only take mine once a day and I am supposed to take it twice a day but I am afraid to cause I don't want to get more tired than I already am. I have never had what you speak of happen to me but everyone reacts differently to meds too. My guess is that you were put on too much to start off with. I would ask your dr if you can back off and start slower. How was your pain level on that much?

      Best Wishes-Tina

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    • Posted

      I can't really remember if it killed the pain I wasn't mentally right for a day or so after im on anti tnf embreal at the moment but my next delivery is from another company must be cheaper I think thanks for your reply

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  • Posted

    Hi linsey

    Im a 27 yo male with identical symptoms that started 10 years ago and significantly exacerbated the past few years. After a positive diagnosis ive had a week of mris seen an orthopedic surgeon and a rheumatologist with the end result of her recommending humira. Which i must say regardless of the debilitating pain ans immobility that i experience daily i would prefer that, than the possibility of experiencing side effects that are way worse in my opinion. Just the way i am and think. I would much rather to be offered symptomatic treatment like pain medication\muscle relaxors for when im brave enough to attenpt to perform any phtsical activity or attempt to get back in shape. AS diagnosis prevalence has greatly increased in recent years which i assume is driven by the pharma company that pushes ans makes this expensice drug. I also think the risk to reward ratio is much more benefitial with a standard pain med as opposed to a biologic that has a lot of negative effects associated with it and may not give you the results youd like. Just my thoughta i plan to discuss with my doc after a few long months of appointments and long hard thinking ha hope this helps you know your not alone and would be interested to know how humira goes if you decide that route!

    Best wishes - michael

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  • Posted

    Michael,

      Just my 2 cents on this.  Lets not confuse "potential" side effects with side effects.  I have tried several of the biologic drugs (humira, simponi, remicade).  I never saw a side effect from taking the drugs except for an allergic reaction to remicade which forced me to stop taking it.  But an allergic reaction can happen to just about any drug and is not specific to the biologics.  And at the risk of beating a dead horse on this issue, I will say again that my wife has been on remicade for over 13 years with magnificent results and no significant side effects for her rheumatoid arthritis.  

    Now, in the spirit of full disclosure I have to say that I did have a weird side effect from the biologics but it was while weaning off the drug rather than while taking it.  I had what the doctors referred to as a lupus-like reaction while weaning off the simponi.  I experienced swelling and redness in my wrist joint which was not typical to me but a dose pack of prednisone put that away rather easily.  I'm not trying to minimize the potential side effects of these powerful drugs but if it is the right drug for you then you can see miraculous results and the cost/benefit analysis is overwhelmingly in favor of taking it.  To me the most serious side effects that I saw is that it really didn't help me to any great degree at all.  And if that is the case then obviously you can't justify the significant cost.  Again, I realize that these are powerful drugs but in the right situation that is exactly what we need and I think that many of us would kill for the type of relief that my wife saw from hers.

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  • Posted

    Linsey,

    Dont worry I feel your pain. If it helps you to relate I am 26 years old living In Australia. Similar circumstance to you in that multiple physio's were clueless, a chiro whom I had spent thousands on after several years (I started trying to seek treatment at 19 after playing sport nearly everyday and having to abruptly stop but of course didnt know what was wrong with me). Chiro did an xray on my hips and said they are out of whack, throwing my whole body off (thanks idiot).

    In my early twenties the buttocks pain shifted to the front of my hips, at some points I have no idea how I got to work in the city (City) walking from the station barely being able to move my leg in EXTREME pain.. Like someone was shoving a knife into my hip bone (front side) every second.

    anyway I was finally diganosed, had a cortisone shot in my hip about 3 years ago, didnt kick in for two weeks and boy even though my back still killed, just the relief of that was wowsa's.

    In summary I took NSAIDS (celebrex a bit and mostly mobic 15mg) which was a god send but I still couldnt really do much exercise on them but at least could live life relatively normal seeing friends / getting to work etc.

    Start of last year started Enbrel and WOW, there is still stiffness but compared to before I am like a new human. I can go out, I have more a less stopped talking NSAIDS although still do when my diet is naughty.

    Anyway I am on the enrel now and played 11 a side outdoor soccer this year for the first time in about 9 years.. what a god send.

    Dont give up bro (or sis?). I am working for a big bank in Australia now and can exercise almost 100% now.

    I would rather live my life like this with the risk, then constantly being down and knowing I can't excercise or go out with mates etc.

    Cheers,

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    • Posted

      Thanks Tim! (It's sis by the way).

      I actually finally got on Humira six weeks ago and have felt a massive difference! I can now walk around without much pain, and back in London and back at work and feel like I've been given my life back!

      I still have hip pain, and I'm waiting to see an orthopaedic surgeon, as my consultant thinks I will likely need hip surgery, but in so much better!

      The only thing I have found is that I still get the chronic fatigue, so I have to work from home one day a week and have a day off the commute. I've had no side effects from the drugs, so would recommend them to anyone!

      Hope you're getting on ok and are back to your sporting best! I'm hopefully going to start back at my spinning classes next week, wish me luck! X

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