[Wellness] Living with SAPHO syndrome and what is it?

Not many people heard of it as I believe it is a rare syndrome. I was diagnosis with SAPHO this April, and at that point I was not sure what is this.

At first, I was told by my doctor that I am having spondyloarthritis(SpA), a type of arthritis that attacks the spine and, in some people, the joints of the arms and legs. Most commonly at your lower back pain. Sadly, most people have the misconception that arthritis is an “Old Person’s Disease”, but actually arthritis can be diagnosed to anyone of any age. I was also one of them who have this misconception until I went to study it.

After more tests and scans, I finally got my final diagnosis, which is SAPHO an abbreviation of a lot of syndromes combined into one.  A “rare condition” was what came to my mind when the doctor told me my diagnosis, I have so many questions in my mind so I went online to check for more information. However, there isn’t much information as there are not many case study reports on it. Thus, I decided to put down the journey and also to create awareness for people to understand us.

What is SAPHO?

SAPHO syndrome is a chronic disorder that involves the skin, bone, and joints. SAPHO is an acronym for the combination of synovitis, acne, pustulosis, hyperostosis, and osteitis.

Synovitis means inflammation of the joint lining (synovium). Typically, this is manifested as warmth, tenderness, pain, swelling, and stiffness of involved joints (arthritis).

Acne is a skin condition featuring tiny areas of inflammation with pus formation at the hair follicles. Acne occurs most commonly on the face and upper back.

Pustulosis is a very inflammatory skin condition resulting in large fluid-filled blister-like areas (pustules), typically on the palms of the hands and/or the soles of the feet. The skin of these areas peels and flakes (exfoliates).

Hyperostosis means abnormal excessive growth of bone. The hyperostosis of the SAPHO syndrome frequently is located at the points of the bone where tendons attach, generally in the chest wall.

Osteitis means inflammation of the bone. Patients with SAPHO syndrome can develop inflammation of the sacroiliac joints (sacroiliitis) as well as inflammation of the spine (spondylitis) which leads to stiffness and pain of the neck and back.

Source: MedicineNet

How long have I been suffering from it?

Like I mentioned, I was only being diagnosed with it in April but this pain has been with me for almost 4 years, and every time I thought that it was a muscle sprain or even menses cramp.

How did I find out?

For the past few years, I went to see the GP (General Practitioner) frequently for my backache and weakness on my left leg but was only given some pain killers and was told to rest.

Then I went for a full-body health screening with a blood test showing that my erythrocyte sedimentation rate (ESR) result was a little above the normal. The doctor said that I might be having some inflammation somewhere but was not told what to do.

Only until last year when I went for my annual health screening, my ESR Blood result elevated again.

This time I told the doctor that I would like to see a specialist for my back pain, as it is getting quite irritating and affecting my lifestyle. It was then I was given a referral letter to the Orthopedic, and I did an X-Ray scan for my lower back and had a few blood test.

The results were not good when the doctor read my x-ray, and informed me that my L4 and L5 started to fuse, that’s the reason for my pain when I try to bend or move. After which, I was referred to Autoimmunity and Rheumatology Centre to have a more detailed check to rule out my diagnosis.

What are the signs and symptoms?

At first, it was a backache which I thought that it will go away over time.

Then last year I had some blister developing on my limbs which looks like pimples when it is burst there is a little dent, and sometimes I will feel difficulty in breathing and pain around my chest area. After my diagnosis, I realise that it is because my sternum was swollen.

How long does it take for me to know about my diagnosis?

More than 6 months of intensive medical appointments from Physiotherapy, Orthopaedic to Autoimmunity and Rheumatology and together with Dermatology.

After the diagnosis of SAPHO what medication I was given?

I was given common NSAID Anarex Painkiller and Sulfasalazine (Azulfidine) when diagnosed, however, I had a mild allergy reaction to sulfasalazine. Thus, now I am on methotrexate and folic acid.

Can SAPHO be cured?

Nope, I asked my doctor on this.

It cannot be cured but your illness can go into hibernation mode, which means you will not feel pain for maybe a long time but it can come back. There is always a flare-up period.

Can SAPHO be prevented?

Nope, SAPHO cannot be prevented at this moment. Studies show that SAPHO is most likely inherited. However, for my case, I am not inherited and there is no known cause of why I had it.

The reason for me to share?

I just hope to share some of my experience and to let other people know that if you felt something is not right with your body, do not hesitate to consult and see a doctor. I hope I didn’t bore you with all the lengthy post.

**Each individual will face different conditions, I am only sharing what my experience was. Please consult your healthcare provider with any questions or concerns you may have.**



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