1. Community
  2. Bones, joints and muscles
  3. Ankylosing Spondylitis

Looking for help AS

Posted , 7 users are following.

L4ren1
L4ren1

I have AS been diagnosed for 6 months - I inject humria and take methotrexate, I currently am housebound as I cannot walk due to stiffness and pain which is ruining my once upon active life! I also need to urinate up to 6 times a night which is driving me crazy? Can anyone relate to any of my symptoms

1 like, 17 replies

17 Replies

Next
  • hope4cure
    hope4cure L4ren1

    Posted

    Have you seen a urologist. There are meds available by RX than can help,calm a overactive bladder.

    Hopexxx

    • L4ren1
      L4ren1 hope4cure

      Posted

      Hi Hope, I have mentined this over and over a few times to the doctor however they are not linking this is AS - they acually say they do not know what the reason for urinating at night is? Its very frustrating x
  • deborah63143
    deborah63143 L4ren1

    Posted

    I had stiffness for over year, due to not the right diagnosis. I kept working as a dental assistant. Everyone said I walked like the tin man.I didn't have the urination problem. I have been on Humeria, Enbrel and now on Simponi. I take 800mg ibuprofen twice a day. Keep in touch with your rheumatologist and let him know if you are not improving. My rheumatologist have me take the boogie for 4 months before changing.

    • L4ren1
      L4ren1 deborah63143

      Posted

      Hi Deborah63413

      Thank you for your reply , so have your been diagnosed with AS? I have been reading up on Enbrel do you feel that helps your walking and stiffness symptoms?

       

    • deborah63143
      deborah63143 L4ren1

      Posted

      Yes, I have been diagnosed with AS. When I started with the stiffness and pain was in Oct 2012. They thought at first it was poly myalgia. They started me on Predinosone for a year, starting with 10mg and reduce dosage  mg per month. After year I still wasn't good. Hips hurt all the time. They tried me on methotrexate, which didn't make a difference. I kept searching for help and went to a ortho doctor and they did a MIR and that is when they diagnosed me with AS. I started Humeria in Sept 2014 and I had 4 bouts of diverticulitis. The stiffness got better after taking Humeria. They tried to say it wasn't Humeria, I told the rheumatologist that I'd had diverticulosis for 10yrs and never had a problem. So, that's when they but me on Embrel, after a couple months I started with chest pains, hips hurting off and on. They said I had become recentistis to the Embrel and that is why I'm on Simponi. I doing pretty good. No stiffness, just occasional lower back pain, arm pain. I do exercises and go to chiropractor once a month. I have notice that I'm weak in arms and wrist. 

      I feel that my case is not as severe as most post I've read on this site. I also, feel that I caught mind early. 

      I know it hurts but, I found that bike riding helps. I'm walking on most days now, since it's cold and I don't want to ride bike in the cold.

      hope this helps. Good luck,

    • L4ren1
      L4ren1 deborah63143

      Posted

      Thank you so much for the time to reply - your comments have helped!
    • courtney_56601
      courtney_56601 L4ren1

      Posted

      I have been on Enbrel for 10years and I couldn't be without it for my AS . Also Celebrex 200mgs am and pm. Try this. I'm moving well. Still stiff in am but rub on Pennecaid and feel fine.

    • linda17563
      linda17563 deborah63143

      Posted

      Hope you don`t mind me asking but, I have been treated with  steroids for the past 5 years for Polymyalgia.....they are now saying they don`t think it is this, but have upped me to the dose I started at 5 years ago (why?)  I have acute stiffness/pain from waste down to pelvis, and stiff neck shoulders, and lower legs....feels like everything is pulling tight, I walk sideways downstairs because I feel like I will pull a tendon or something in my knees.  Iam very tired also...The rheumatologist says he`s not sure what it is.....but does this sould like AS to you from what I have explained.....and is there a specific blood test to rule it in or out?

        Sorry to ask so many questions but the powers that be don`t have the answers, and I do want to get off steroids if I don`t need them, they give me terrible side affects....Thanks for any suggestions!

  • gloria55119
    gloria55119 L4ren1

    Posted

    Hello, can I ask about how often you take Methotrixate..it actually should'nt be taken every day. There are side affects to this drug which you need to be aware of...one is kidney problems..but do look it up in the drugs section of this site and you will see it explained accurately. I was taking a medication for sleeping as I am also AS and couldn't get comfortable at night in order to get some sleep...they actually had the reverse effect and I was also up half the night to go to the toilet  ( at least 6 times per night is not normal )...Please try to check your medictaion and the dose and talk to your doctor as soon as you can. Take care...hugs too....G

    • L4ren1
      L4ren1 gloria55119

      Posted

      Hi Gloria

      The methotrixate is taken on a monday only and I curently take 9 (I take 1 more tablet each week) I inject with Humeria every fortnight - I am seeing no differnce from taking the tablets or injections which is very dissapointing - have you had any luck with your toilet visits? Has your consultant commented on this at all? x

    • gloria55119
      gloria55119 L4ren1

      Posted

      Hiya...yes, apparently there is pressure on the bladder and at night when I lie down the pressure increases. Nothing we can do about it. So I just have to learn to live with it....uuummm.
  • peter21326
    peter21326 L4ren1

    Posted

    Hi,

    ?  You didn't make it clear (or maybe I just missed it) whether the frequent urination occurred before or after you started your medication regimen.  If you had those symptoms prior this medicine then you should see a urologist.  At the very least make sure your current doctors know about that.  Not sure if these meds have a diuretic effect but you should definitely mention it. 

    ?  I liked the statement about walking like the tin man.  For me I likened it more to walking like the mummy.  Especially when I wake up in the morning and until I get some hydrocodone in me, I am so painful and stiff I just drag one leg behind me when I walk.  Not sure what causes that the most - whether it is SI joint, hip or lumbar back but I definitely do understand the stiffness.  Best of luck and please do mention the urinaton.  They should be able to help you with that. 

    • L4ren1
      L4ren1 peter21326

      Posted

      Peter - I was diagnosed with AS in August last year and only started my treatment in November - I  have been urinalting at night since March when I did start to see unwell.

      You mentined that you take hydrocodone (is that codine)? I think the issue that I am having is that I cannot come to terms that I am left the way I am without any help? Are you just now coming to terms with the fact that you do have issues with your legs and its just the way it is? I think that is the most upsetting thing for me that I am almost house bound and expected to just deal with it? Its devistating?

  • peter21326
    peter21326 L4ren1

    Posted

    OK, so you should see a urologist about this.  I just mentioned in another post that this disease is so insidious because it messes with the body in so many ways besides just pain and stiffness.  Often it is difficult to determine whether a symptom is specifically from AS, from tthe myriad medications that we end up taking or totally unrelated.  The hydrocodone that I take is a narcotic opiate pain pill referred to by other names such as vicodin. 
  • karen51611
    karen51611 L4ren1

    Posted

    Hi,

    I have pretty advaned AS (fusion of SI joints and some thoracic) joints. Suffered since my early 20's, but formally dx in July. I started Humira (after 4 months of wavering) and I do feel relief from morning stiffness for the first time in 25+ years. It doesn't help with the pain from fusion though.

    But yo your question about urination..mI have the same. I asked my dr and she said it was most likely interstitial cytitis; basically inflammation im that area, which makes sense. The Humira has called those symptoms somewhat. Hope this helps.

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.