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#278853 - 08/29/17 01:34 PM New with this topic and afraid  
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CeGu Offline
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Hello Everyone,
I am 41 (almost 42) and I've recently being diagnosed with "possible Spondylitis".
I am not from USA and I do not live in USA. Why am I writing here? Because it's the place where I saw some other people also had questions and were supported. Here's my story:
I have suffered from backache problems for probably two years, but usually very mild. I used to blame the mattress, because whenever I used to travel quite often and when I did, my back pain was over. The reason why I didn't change the mattress at home is a long story not even worth going through it.
Went to a couple of Doctors there and they said it was just stress and usually would give me a shot and I was well again for some months.
A year a half ago I came to Germany and moving overseas was stressful for sure. When we bought the mattress, I realized it was also too hard for me. I didn't change it either. I started again with this backache problems.
On September last year I had a very stressful situation at work that lasted for probably 6 months. Finally, I stopped worrying about it and a month later a terrible pain on my back and neck appeared every time I would wake-up.
I immediately went to the Doctor (I speak basic German, but not enough to discuss an illness) and he started giving me some acupuncture (It seems is quite frequent here in Germany): He had diagnosed "Stress". So, I started jogging (I hadn't exercised in about 2 years).
Although I am not very keen for alternative medicine I gave it a shot of probably month and a half when I finally decided to change Doctor (Rheumatologist).
The new Doctor took me some X-RAYS and told me it was most likely just stress as X-RAYS seemed as no issue.
My pain was now not as bearable although not gone. After the appointment I went on vacation. On the plane my Achilles heel was aching. (It had started a little bit while jogging).
I spent my vacations walking with some pain and sleeping on a very soft mattress that was also hurting my back.
I came back from vacations and went to the Doctor again. This time he took me a blood sample, prescribed me with Celecoxib and massage (It's the first time I get massage prescripted).
I started feeling better. With mild pain, but much better. I could sleep at night without being awake by pain.
A week later he called me and told me that he had found something and needed to talk to me. Then he said that I was HLA-B27 positive (I had no idea what that was and language was not helping either). He asked me to do an MRT and told me to keep taking the medicine.
I started googgling about HLA-B27 and for the first time I saw "Ankylosing Spondylitis". I started reading on posts, forums and youtube videos. It just sounded like a terrible illness.
The MRT happened in two sessions. From the first session it came as I didn't have spondylitis, but I had an extremely mild "Sacroilitis". On the second session they called me and asked my why the Dr. had asked me to have the MRT. I explained them that it was because of an HLA-B27 positive test.
The person told me that I had a very shiny fat spot of fat between two vertebras and that it could mean nothing, but that since I had been detected HLA-B27 positive and I had backache problems, most likely was an spondylitis.
I went back to the Doctor and he was more concerned about the Sacroilitis than the "Spondylitis", but he told me to keep taking the pills. This is the current status.
- I am taking the pills and still have mild aches, however I'm able to sleep.
- The day before yesterday I forgot to take the pill and I did have some more pain but it was significantly reduced compared to when I did have any medicine.
I read that the sooner spondylitis is detected the better, however it seems that it was either not seen as that relevant by my Doctor or he wasn't unable to explain to me the full picture (remember I'm in Germany and I don't speak well enough the language).
I am not even sure if I really have Spondylitis or not, and how severe it is.

I would really appreciate any advise you can provide to me.

#278857 - 08/29/17 04:25 PM Re: New with this topic and afraid [Re: CeGu]  
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Winston Offline
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Could you possibly see a rheumatologist in your home country or take a translator with you to the rheumatologist in Germany?

#278900 - 09/04/17 06:47 AM Re: New with this topic and afraid [Re: Winston]  
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CeGu Offline
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Thanks you for your reply Winston.
My home country is Mexico, so currently not an option for me. The Doctor speaks English, but it is also an issue related to the culture I believe.
I've been taking "Celecoxib" as prescripted by the Doctor, but that's about it.
I will visit him in two weeks from now and see if anything changes, but so far it is still very frustrating.

#278901 - 09/04/17 08:59 AM Re: New with this topic and afraid [Re: CeGu]  
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Wotan Offline
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I am french and also live in Germany. I agree there is a cultural difference with German doctors. The paradigm is to listen what they say without asking questions and then just follow their orders. It does not sit well with me either. My current rheumatologist is quite good and I trust him, so I pay attention to not annoy him too much.
My suggestion is the following: do some research on Jameda for rheumatologists in your city, and phone call the one that looks the best. Explain you are HLA-B27 positive. Likely you will get one in three months but you might get something sooner.

You will need to point exactly where you have pain, also whether it is relieved by moving or not, and when in the day. AS pain has some patterns.

#278905 - 09/04/17 04:47 PM Re: New with this topic and afraid [Re: CeGu]  
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SouthernMoss Offline
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Sacroiliitis is inflammation of one or both sacroiliac joints. It is the primary symptom of Ankylosing Spondylitis, which is why your doctor was more concerned about it than the spot on your vertebra.

Celecoxib is an anti-inflammatory medicine. It is helping to lower the inflammation in your body, which is why you are able to sleep better.

So it sounds as if your rheumatologist is on the right track. Anti-inflammatory medicines like celecoxib are often the first medicine prescribed for AS.

I'm sorry the language barrier has made it so difficult for you to communicate with the doctor. I agree with Winston that it would be helpful to take someone with you who speaks German fluently and could explain to you what the doctor tells you.

Please let us know how your next visit goes.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278940 - 09/07/17 09:17 AM Re: New with this topic and afraid [Re: Wotan]  
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CeGu Offline
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Thank you Wotan.
The current Doctor I'm seeing is a Rheumatologist, so in that sense I believe I'm with the right Doctor.
The idea of searching on Jameda may be a good idea too, at least to get a second opinion.
Thanks for your reply.

#278941 - 09/07/17 09:26 AM Re: New with this topic and afraid [Re: SouthernMoss]  
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CeGu Offline
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Hello SouthernMoss,
This is really great information you are giving to me. It definitely reduces my anxiety.
How fast does this disease progresses? Or in other words. What should I expect as a next step?
The Doctor mentioned to me something about an injection on the sacroilitic joint after I finish with some therapeutic massage.
Will there be a change of medicine afterwards?
Is there anything besides exercising that I can do? (I am stretching on my own, but only from what I've seen on videos).
Can it get really severe in a short period of time?

I hope I am not overwhelming you with all these questions, but I just would like someone that has gone through this to give me some guidance.

#278943 - 09/07/17 06:52 PM Re: New with this topic and afraid [Re: CeGu]  
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SouthernMoss Offline
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The disease progression is not the same for everyone. On one end you have people whose disease progresses very quickly, and on the other end you have people whose disease stays mild their whole life.

The injection is probably a corticosteroid injection into the sacroiliac joint(s). It will help with the inflammation and pain. It will probably have a numbing medicine like lidocaine in it too.

At some point the rheumatologist may talk to you about using a biologic medicine like Enbrel, Humira, Remicade, etc.

Exercise and stretching are important, so keep that up.

You also need to eat a healthy diet.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#278950 - 09/09/17 02:45 PM Re: New with this topic and afraid [Re: CeGu]  
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Wotan Offline
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You might want to check the DVMB, The German support group. There are local chapters, their website is bechterew.de
Contact the head of your local chapter, hopefully he speaks English.


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