Looking for advise on AS/ Spondylitis arthropathy

Posted , 6 users are following.

Hi, recently I have been diagnosed with AS & potentially psoriatic arthritis. I'm 25 & as you can imagine heartbroken. 

Drs want to start me on biological treatments. After Naproxen brought on lesions which they deemed guttate psoriasis. Now here's my concerns and worries...

I'm from England so we do have a fantastic NHS system. However, I am in a bit of denial on my diagnosis and here's why..

I have suffered from no backpain or joint pain in the past,  the only time I suffered from knee pain was after a fall from a cross trainer( don't ask.. I'm a nightmare). One day I lifted something way beyond my capabilities, & pulled my back. (Or so I thought). I waited 3 weeks before going to see a doctor. In which then I was given a nurse practitioner who told me it was a muscle tear.. I went on paractemol, ibuprofen. No relief. Back to the drs. Then I was on co-codimol, nope. Codeine, nope. Dr then said I was most likely immune to codeine based tablets. Naproxen helped.. Then I got the lesions. I'm also on pregablin to help w the sciatic nerve that's flared up from the back pain.

I spent the best part of 2 months of weekly visits to the doctor. Until finally a locum dr sent me to a rhuemy. At the time I was in pain, sleep was terrible as I could hardly move in bed, sitting up or even getting out of bed. I struggled terribly. 

He explained my inflammatory markers were extremely high, also I had next to no iron in my system. Women are meant to have a level of 14.. I had level 3. My folic acid was also down. So I was given tablets to substitute. He then referred me to a dermo, who advised coming off Naproxen and finding another anti inflammatory. I stopped Naproxen and was given an MRI. Finally rhuemy gave me Extorcib (think that's how it's spelt). Since I began taking that, all my pain was gone. Literally vanished. I still take Pregablin and extorcib. Things have been going great, feel like me again.

I ended up seeing a specialist nurse as they sent a letter saying my symptoms were in keeping with spondylitis arthropathy. (But hang on? All my symptoms have gone? I feel fine.)  the nurse tried to give me Hurima but couldn't actually tell me what I had just that it could be "AS or Psoriastic arthritis.. Or it's just a back injury. But we don't know as we haven't had your MRI results back."

So I put my heels down. "You can't give me medication that I might not need?!"

She then referred me back to a rhuemy and asked them to tell me what was happening as soon as I got my MRI results..

Yesterday I get a phone call that wiped me out completely. My spine showed inflammation, & that my markers were high (now no bloods have been taken since i was in real bad pain, so my markers could be low now..) he also said that I had snapped a piece of spine off.. 

*alarmbells & tears of course*

He couldn't give me a straight answer on if I would need to take biological meds for life. Or why all my symptoms were gone. He just said "hmm."

But he knew it wasn't a back injury & said that my anti-inflammatory was working, but I would need the biological medication too. Unless I want to wait and see how it all goes. (Hang on? You're the doctor. I don't understand. Now you're saying I have a choice not to take it? But you just said I'd need it?) 

What I'm asking is; Has anyone else been through the mill when being 'diagnosed'? Is there a chance they have it wrong as all my symptoms have gone? 

I snapped a piece of my spine, so ofcourse there's going to be inflammation, like someone would have inflammation if they broke their leg or arm?! I worked and continued my normal life, working with the pain. I didn't rest it. I wasn't given pain relief or anti inflammtories that were appropriate until December. (2-3 months after doing my back.)

I haven't been told about my HB-27 gene or had anymore blood tests since the first rhuemy appointment. 

So could this all just be a back injury after all? Could they have it wrong?  Like I said I had no pain previous, none. Until I lifted something heavy. & since being placed on Extorcib I've had no pain.

Now I have an autoimmune disease? 

I'm looking for any advice as I don't know whether to get a second opinion or look into private health care. Maybe my denial is spurring me on.. As I did read somewhere that a lady was diagnosed, got referred to Baths rhuemy & they told her the MRI was useless, they did their own and she didn't have it at all! 

Any kind of advice would be a major help. Many thanks!

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7 Replies

  • Posted

    Wow Sammy...you have been put through the mill...!!!  I bet 80% of us could tell you similar stories. I had terrible back pain for 30 years or so...then some kind doctor said.." lets get to the bottom of this " pardon the pun..!!  I had two MRI's, dozens of X Rays....referrals to this or that doctor...and was finally diagnosed with AS and put on Tramadol, Amitryptaline, Cipralex, Diazepam, and Amlodipine for high blood pressure which has enlarged my heart by 50%...After getting the run around and zonked out on all sorts of medications..I have decided to take things into my own hands. Found out a lot on the "net" and here in this forum...came to my own conclusions and cut out some of the meds. I now have Tramadol injections when needed..they are ( in my case ) more effective for severe pain and use Amlodipine as directed, I take half a 5mg Diazepam when muscles spasms hit me in the shoulders, thighs and chest. I use hot packs to ease the muscle spasms, sleep when I can..sometimes all day when exhaustion sets in. I try to stay positive..but sometimes negativity creeps in and I despair. I am now in a wheelchair with ten vertebrae affected, cannot walk more than a few steps on my own...Frustrated with some of the medical fraternity....when will they dedicate themselves to people like us. I wish you well....keep on keeping on...find what is right for you...and stick to your guns when you feel you are being ignored. You can message me if you want to...I will listen..always. G

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  • Posted

    Hi Sammie sorry your going thru this, I was misdiagnosed many times, you may also feel good because of your age , I just really started to feel my as at 35 but your 100% right you need to be tested for HLA-B27before a definitive answer is given if your positive than most likely you do have as, I hope that helps 
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  • Posted

    Hi Sammie. I am 24 and was recently diagnosed with AS. I am actually negative for HLA27 and it is common to be negative and still have AS it is also common to be positive and never have AS. 

    keep in mind your symptoms have only gone away due to a medication you have been put on and that is how AS is treated. You are put on medication to manage inflammation and symptoms to try and put the auto immune attack into remission. 

    I have virtually no pain day to day. The only time I have pain is when I lay down very flat and I feel the pain near my tailbone. But the reason I have minimal pain is because I have been diagnosed so early on before any spinal fusions. 

    I just caution you because feeling fine doesn't always mean that you are fine and the sooner AS is treated the best chance you have at holding off worsening of the disease. 

    Inflammation of the spine is rare, even we asked my rheumatologist if it was possible the inflammation was caused by something else. Due to the location she said no. 

    I would recommend clarifying what region of your back is showing the inflammation and have the doctors explain what about the MRI makes them think it's AS. I know in Canada the MRI results are interpreted by a radiologist and then given to rheumatologist so they likely read from the radiologist what the MRI showed and this would have told them to suspect AS. 

    It is good to ask a lot of questions as these arthropathies present very differently in everyone. 

    Good luck and I hope you get more answers soon! 

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  • Posted

    Hi Sammie, I’m 65 and have gone through the same diagnosis mess for the past 5 years. I read other responses and I agree you feel good due to meds, and yes the HLAB27 will give you another piece of the puzzle. I was a medical practitioner, a PA here in the US and super good at dealing with these unusual conditions and I had no idea what I had, but now it makes sense. The other thing I would add is these symptoms fluctuate so stopping meds not a good idea...make sure your Vit D, B12 and get that iron normal. You are young and you want to prevent permanent damage so be your own advocate and learn everything you can...I have PSA along with the AS, the CRP (inflammatory marker) was my first clue what was going on, so my rheumatologist follows that. This group and “My AS Life” is good support. The lead singer of Imagine Dragons has AS and is in that group. 
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  • Posted

    I’m so sorry you are in all this pain! You may not have AS. I would wait until you get back the MRI and do a blood test to see if you are HLAB27 test.  Biologics are intense and there’s no reason to take them if you don’t have it

    Especially if your pain is gone on the meds you are on! I have looked up the med you said extorcib - and can’t find it in the US. If there is another name or spelling, could you please update us. Anything that works would be wonderful! 

    My daughter has AS and wasn’t diagnosed until eleven. Her pain started at nine. She is 20 now and has been trying biologics for two years but hasn’t found the right one yet. 

    So I feel for you. I’m hoping you have a back injury that will heal with time and in the meantime maybe you could help my daughter with the extorcib drug name. Best of luck to you! Keep us posted. 

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  • Posted

    I never had back pain until I got pregnant and slowly started having issues during pregnancy each month until he was born and then BOOM. Not sure if it was the labor or the c-section or the general anaesthetic they gave me but my AS went CRAZY for 7weeks and then it all went away. Only mild stiffness and fatigue until I got pregnancy again and then pain quickly went from mild to very severe.. after my second was born I went downhill further and started having pain everywhere head to toe..

    Anyway my point is it can come and go. It can go from 0-100 quickly. It can go into remission quickly etc.

    But there is hope. I changed my diet. I went paleo and started taking vitamin D magnesium turmeric omega 3 and pro biotics and my pain and symptoms deceased by about 80%

    I now do daily yoga and try to manage stress, I'm taking a mild anti depressant and about to start counselling and I also did 6weeks of acupuncture.

    There is hope. I know it's very scary. I was in total denial at first until I joined a Facebook group and realised how much In common I have with all those people dealing with AS which helped me realise I DO have AS but I'm now In control of the illness. It's not controlling me anymore. It took 3 years of my life. I now feel better than I have for 13 years. I've even beaten my IBS and chronic constipation through diet alone.

    My best advice is to change your lifestyle. You can turn it around

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    • Posted

      I’m very interested in your response to the lifestyle changes...paleo and yoga were already in the plan and I haven’t tried the turmeric yet,?the spice shop I needed to use it with black pepper had you heard of this? I’m already low D so I’m on 3-5 thousand a day, I’m excited to get done traveling(which has been miserable) and get trying these ideas
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