recently diagnosed with AS (HLA B27 - pozitive)

Posted , 6 users are following.

Hi Everyone,

I am new on this forum, I am 38 years old female.Recently I have been diagnosed with AS (HLA B27 - pozitive, NMR exams, blood speed 60), I am having bad pains at my spine and sacro-iliac bones.

My rheumatologist gave me for the start SULFASALAZINE EN 500MG (1,2,3,4 per day) and celebrex, but those are affecting my stomach very much. Also I am in a bad state - physically and psychically.

Does anyone knows other kind of treatment, some efficient natural treatment?

Thank you a lot,

Paula

 

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  • Posted

    Low dose dexamethasone helps with pain and stiffness and helps keep AS at bay.  Enbrel is for treating AS and keeps any further damage from occuring.  Nsaids bother my stomach too.  Steroids will cause an increase in stomach acids.  I don't believe that there is anything natural to treat this dreaded disease.

    Gina

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    • Posted

      The key with dex is to take the lowest dose to where you get relief but are not bothered with side effects.  I do 0.5 mg taken before bedtime along with 400 mg of gabapentin which helps with sciatica, muscle cramping, restless legs and also helps me sleep better.  It counteracts the sleeplessness of the steroid.  I'll do the dex for 1 month and then go off for 1 month to give body a break from the steroid.  Unless the stingy bone pain and swollen joints come back right away, then I would stay on the dex.  My symptoms became so much worse after menopause in that my tailbone hurt so bad and the AS was travelling up my spine and wrapping around my ribs where it hurt to breathe.  I also ended up with costochondritis where it felt like broken ribs and hurt to breathe.  Doctor told me to increase the dex to 3x per day.  I took celebrex for the costochondritis.  Once the flare was under control, I dropped back down to 1 dex at night.  I had taken dex for 8 months straight and then needed to stop so that I could get the flu shot at work.  I was so fatigued coming off the dex even though I weaned off slowly.  It took a good month to get over the fatigue.  I had started on Enbrel in Dec and got relief after 4 weeks but I had to temporarily stop because I had a knee replacement.  I just started back on it today.  Since AS is autoimmune, you have to treat with drugs that suppress the immune system like dex and Enbrel.  I haven't been able to take dex because it inhibits bone healing and both would inhibit fighting infection with having had knee surgery.  I hope this info helps you out and I pray that they soon find a cure.

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    • Posted

      Gina, I am very sorry for all your pain and strugaling with this awfull dease.

      Did you tried also exercising / medical gym?

      I had myself bad pains at my spine (AS combined with Scoliosis at T12, T6, C5), pain is especially at 4-5 AM in the morning since 6 months ago, cannot breath well and cannot move or sleep on any side. In that moments I just wake up and start to do some gym exercising that I learned from the doctor. Since 10 days ago I started to take 1 pill of celebrex every evening, and paines seems to be a attenuated - but I am scared to depend on so many pills. I have also bowel and hart problems and I need to take pills for that too.

      This is horrible, first when doctor told me that I have AS I didnt realized what this means. I thought it will end with the correct treatment sad((

      It is hard to belive that our own imun system is fighting against own body.

      On other forums from my country people saying that some natural medicines helps (to swallow coconut oil, noni syrup, shark aid and others). I will start maybe to try some of these.

      I hope you will fill better soon.

       

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    • Posted

      As an employee, I am able to use the physical therapy equipment.  At home we also have an inversion table, exercise bike and elliptical.  I have to do stretch exercises every time I get up.  Very important to to do deep breathing exercises when the disease starts to affect the rib cage.  I only use olive oil, coconut oil, butter and sesame seed oil.  I try to follow a ketogenic diet and stay away from processed foods with chemicals and preservatives. I consume anti-inflammatory foods like cherries, blueberries, salmon, nuts and cinnamon to name a few.  I hope you get relief with natural meds, it is worth a shot.  Good health to you.

      Gina

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  • Posted

    Hi Paula,

    ?  So sorry to hear about your health problems but even more so that it is weighing on you so much emotionally.  AS can be that way when it is uncontrolled because it is relentless and chronic pain is demoralizing.  Please hang in there and feel free to use this forum even if you just want to vent.  Many of us do that.  You're going to have good days and bad days and some times the bad days seem to be more than the good days.   But we get through it and go on.

    ?Everything about AS is extremely variable.  No two people have exactly the same symptoms and the responses to various treatments is also extremely variable.  Hopefully you can find something that keeps your disease close to remission.  I have seen it with other autoimmune diseases like RA so it can happen.

    ?What treatments your rheumatologist pursues seems to depend on where you are at least to some extent.  Doctors in the USA are slightly different from the UK and others.  The biologic drugs like Humira, Enbrel or Remicade are gaining in popularity although many rheumys will go through more old school drugs like Clebrex and Sulfasalazine first.  I am not personally familiar with the more natural approaches although I know they exist and some making some pretty radical claims of success.  A simple internet search of natural treatments will bring back numerous ones and whole books have been written about it.  I would imagine that even books about natural approaches to RA could be applied to AS as well but sorry, no personal testimony. 

    ?Finally, though, a common theme through many of our posts here is that research on AS and treatments for AS lags behind that of RA and other autoimmune diseases.  The fact that you have a positive diagnosis is a step in the right direction as many people have AS-like symptoms but the diagnosis is in question.  Tough to treat symptoms if you can't agree on the cause. 

    ?Anyway, welcome to the forum and please ask any questions or make any comments any time you feel the need.  I am sure that other readers here have exprience with natural approaches to AS treatment and maybe they will respond soon. 

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    • Posted

      Thank you a lot peter21326 for advices and good thoughts.

      I hope I will get through it somehow. I am stuck at home more then a month because of the pains. From an active person going to my job now I am stuck in house. I did some injections with dexamethasone and deprofos, and I have to continue with Clebrex and Sulfasalazine at least 3 months and then to do the blood tests again.

      My doctor said that biologic drugs cand be prescribed here in my country (estern europe) only by special doctors from certain hospitals.

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    • Posted

      Great way to advise on meds. Also some insurance companies have a list of drugs starting from earlier treatments up to more up to date biological drug treatments. It takes time to find on that helps.
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  • Posted

    Do you know if you have a history of AS in your family. I have in my family.

    It’s not just the state of your health that could provide clues to the presence of AS. A family history of the condition itself is a clear sign but it’s also worth looking for related conditions in your family tree.

    The associated conditions you have talked about in your post could  have genetic links to AS so, even if you don’t have them, the fact that your dad or your grandma – even your uncle - does could still point to an increased risk of AS.4

    Sometimes there is no way of knowing since AS is difficult to diagnosis. I try to remember what my elders in my family suffered from. Sometime they can test for the gene if your not sure if it runs in your family. 

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  • Posted

    Hi Paula,

    I have both AS and HLA-B27. I was on sulfazaline for 3 months last year and I stopped and my crp rose to 30 from 16. I'm told to be on humira and enbrel. I did some tests which I'm waiting still for the results and I have to meet the doctor this Tuesday to see if I'm illegible for the medi. I'm still scared to start this treatment due to its side effects and I have post a forum on here to get others reviews on it. I've ready many positive but we are humans and have our fears which are kinda difficult to deal with. I'm a 21 year old female and I've ongoing trouble for 8 years now and it has been more severe for 2-3 years now. And doc told me the only best medication is enbrel.

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    • Posted

      Hi jemini04,

      Why did you stopped from sulfasalazine? You didnt see absolutely no effect? I have taken it from more then a month and my CRP was 43 (2 weeks ago) and ESR  60. I hope they will shrink after 2-3 months.

      My doctor said is better to stay on sulfasalazine (+ celebrex) rather to take biological drugs like enbrel/humira/remicade or others. These can have very bad side effects and I am scared of them too. I do not want to take that sad EVER. In addition you need to take also some naturals treatments (spirulina, coconut oil, antioxidants) to help your imun system as much as you can. I also do exercises in the morning to get relief from my back pain. It is very hard with this AS. I wish you a lot of health! Hope you will fill much better after humira and enbrel if that is what your doctor considered is better for you.

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    • Posted

      I totally understand you. But I stopped taking it coz it completely stopped working for me. So I did more damage to my back and my crp rose from 16-30. And now I'm in moderation to severe condition and the only thing that will help me is enbrel. Even I'm very scared due to side effects but it's a do or die thing. I have spent 8 years since my kid age with pain I'm 21 now and it's too much for me. And I've read so many forums here and everyone is doing fine with the TNF blocker. Some have had it for 12 years now and they didn't get any side effect. Plus my doc has made me do some tests to make sure I'm healthy enough without tb and hepatitis so I can start the medication. There's no way out for me. Sulfazaline doesn't work for me at all. And I'm at this point that diclofenac is slowling stopping to work for me. I'm still scared but I really need pain free life 😔😔😔

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