Peripheral spondiloarthropathy

[YuliaGiulia]

A lovely day, everyone!

My first post here and I am looking for other people with the Peripheral Spondiloarthropathy diagnosis to share insights and information about the condition as there isn't much on the web about it.

It started at the beginning of the year triggered by a severe strep infection and fortunately my GP was great and recognised an rheumatoid-like condition rather quickly after discarding gout and RA

(I had dactilytis and enthentithitis in my left foot originally)

After all possible oral treatments I eventually moved on to Infliximab which did reduce the inflammation dramatically after the first 2 infusions. But the third one... It felt like they didn't actually give it to me since rheumatoid pains in the entire body started and the joint pain in my foot came back en force accompanied by pains in my right hand thumb and index finger..

Has any of my fellow sufferers had a similar experience of the meds seemingly stopping to work and what did you do?

I have to complement the treatment with Cortisol which I am not happy about at all. There's enough stress in my life to add the stress hormone to it. Probably, the fact it's rain season and it's colder than usual where I live is not helping but the doc has assured me by now I'd be practically be back to normal. My immune system is active again and my allergic rhinitis, that disappeared with the first infusion, is back.

Looking forward to hearing your stories!

[T-cher]

Hi YuliaGiulia!

I've been told I have Ankylosing Spondylitis which is in the same family of arthritis. Supposedly, to be placed in the Ankylosing Spondylitis group (AS for short), you need to have fusion in your Sacroiliac joint and some fusion in the vertabrae in the spine. I have neither but my rheumatologist said that was good because I got diagnosed before tge damage had happened. I actually believe I have the peripheral form of AS in that my primary symptoms began in my peripheral joints (FEET!! and hands, knees, elbows). Spondyloarthropy or Spondyloarthritis are the proper terms for all the variations of our disease.

Spondyloarthropies are NOT in tge Rheumatoid Arthritis family at all. The 2 diseases act very differently on our joints. Mine (AS), attacks the entheses (plural form of word) which is the attachment point where bone and tendons attach. When the enthesis (singular form) becomes inflamed, it is called enthesitis. If the inflammation continues for a long period of time and is left untreated, the body tries to 'fix' the problem by building bone (or calcifying) the area. That's what happened to me when my enthesitis went untreated at the attachment points of the Achilles tendon to the bone in my right ankle. My GP refused to believe there was anything wrong that physiotherapy would not fix.

Dactylitis is also found in AS in fingers and toes. AS is an auto-inflammatory arthritis in that our bodies are causing/creating the inflammation. Rheumatoid Arthritis is an auto-immune arthritis. There is a difference in the two terms (auto-inflammatory and auto-immune) and although I've read several articles on the differences, there was too much medical terminology for me to fully understand how/why they are different.

However, if a person has one type of auto-inflammatory condition, they may well have or develop another one (Psoriatic Arthritis, Crohn's Disease, Rheumatoid Arthritis because it is also classed as auto-inflammatory, Hashimoto's Disease), just to name a few. You may NOT ever develop another condition and MOST people don't, but it could.

I personally use the biologic called Enbrel (generic is called etanercept). I was told that it takes 4 before really getting noticeable effects from the medication and can take up to a year before full effects. I'm not aware of anyone in some other groups I'm in ever having mentioned instant results after one injection but it could be possible. I also use Methotrexate as well, as it is particularly helpful with peripheral forms of spondyloarthropies when a biologic is not enough.

Since I had not yet been diagnosed with AS and was not able to walk any longer, I saw a Sports Medicine doctor since the thought was he might know about Achilles tendon issues. He took one look at it and sent me to an orthopedic foot surgeon. I was scheduled for an Achilles Tendon reconstruction (whatever that entailed) but after the surgery, I was told about all the calcification there was that had to be removed. After that, I was placed in a series of 4 casts (changed foot position every 2 weeks). The casts went from my toes to my knee and I needed to use crutches and was totally non-weightbearing on that foot for tge eight weeks (to allow the tendon to grow and reattach to the bone). After 8 weeks of a cast, I was put in a walking boot to my knee and I started physiotherapy to start walking again. I need to use a cane to walk now but I'm not sure if that's because of this surgery or other foot issues not related to AS.

I think you need to clarify with your rheumatologist what type of arthritis you have so you can join one of the groups specific to your arthritis. There are actually several great groups out there. Oh, spondyloarthropies do use many of the identical medications that Rheumatoid Arthritis does. A simple blood test can confirm if you have RA while the different types Spondyloarthropy rely on symptoms over a long period of time, xray and MRI results, and a blood test that shows the presence of the HLA-B27 gene. The majority of people with AS have that gene but you do not need to have it to have a spondylitis. There is a small percentage with the disease without it.

I hope some of this helps give you some insight. I can find the links for some of the groups I know of and post the info later.

[T-cher]

YuliaGiulia

Did your doctor actually give you a cortisol injection to help with joint pain? Or did he give you Cortisone injections into the joints? Cortisone is used in arthritis to relieve pain in joints and to help them move more freely (usually for about 6 months).

I'm just wondering since using cortisol doesn't seem correct.