My Adventures so far for 2019

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Hello all,

It’s been quite sometime since I last posted. I think it was maybe 9-10 months ago, when I started my first biologic Cosentyx. I reached dose 13 last Saturday and boy has the biologic journey been a roller coaster.

I had pinned all my hopes on taking Cosentyx, in my mind this was meant to be my saviour, the drug that would allow me to be ‘normal’ (whatever that is) again. And for the first 3-4 months following the initial 4 week bolus, I felt great, I was nearly (with a few twinges on some days) back to myself. Everyone noticed, my family, friends, work colleagues, even the postman, as I was cheerful, energetic and full of hope. But by the 5th month, I gradually began to recognise that a few days leading up to my monthly injection that my joint pain began to increase. This went from days to weeks and then I was pretty much having joint pain and other symptoms 24/7. I was back on the anti-inflammatories and other pain meds. I saw my rheumatologist in January, he gave me another anti-inflammatory to try, with the intention of changing to another biologic if the anti-inflammatory didn’t work. I didn’t make it to my next 4 week appointment, I was on the phone to my rheumatology nurse, as I just couldn’t cope with the pain. I saw her on Monday and as she was so willing to listen to my woes I was able to tell her all that I was experiencing and how difficult it was being a mum, working full time and managing this horrendous condition. She didn’t hesitate with starting me on my soon to be biologic number 2 (adalimumab), it’s called Imraldi. It will be a few weeks before the change over happens, so in the meantime I am stuck at home. Today I can hardly walk. I have pain in every small bone in my feet, my right ankle looks like a baby melon, my knees are like cantaloupes, my fingers and hands are stiff as wood and my elbows are sending sharp shooting pains to my hands. So all in all I am in tip top shape :laughing:.

But the icing on the cake was that my nurse was able to give me a little more insight into why my back pain may have returned, since it has been under control for the past few years. I should say at this point that I am also a chronic back pain sufferer. This all started way before my rheumatology issues. Past MRIs have showed it was mechanical and that I have dehydrated bulging disc from L3 to S1, hence the reason for the chronic back pain (or so I thought). I take neuropathic drugs for this and it’s been well managed until about 6 months ago where I began waking up with a horrendous stiff back and neck. I did mention this to my rheumatologist on a couple of occasions and he did say it possibly was the arthritis in my spine. But he wasn’t definitive. However, I was able to talk to my nurse about my back symptoms on Monday and she was able to identify that I was listing symptoms for another condition called ankylosing spondylitis. She gave me the literature to take away, sent me for a blood test for the HLA-B27 gene and a pelvic X-ray with the proviso that I come in for an MRI should the X-ray show anything.

I have since read the literature and I was reading my clinical history. The symptoms matched my back pain history in every which way. I didn’t want it to be me fitting myself into the condition, so I got my husband to read it and he looked at me afterwards and said this is all you. My family also has a history of back issues, my dad when he was alive, suffered terribly with back pain and my mother tells me he had this all his life. My sister also suffers with chronic back pain and just recently she revealed that she’s been diagnosed with rheumatoid arthritis. My mother has psoriasis although neither my sister or I have this condition, but in the absence of the RA factor my rheumatologist is convinced that my symptoms fit with a PsA diagnosis.

So now I’m waiting to hear about my X-ray and blood results, I’ll start the Imraldi (biologic number 2) soon and I will see my rheumatologist to find out if I also have ankylosing spondylitis or a related condition like psoriatic spondyliarthritis.

So this is my adventure so far for 2019.

I have been writing this post while waiting for my pain meds to take effect. I think they have, so I am now going to hobble along to the bathroom to undertake the gruelling task of getting showered and dressed for the day.

I hope you all have a good day and if you do have a spare 5 minutes, I would be interested to know if any of you have or have heard of anyone with both PsA and AS.

All the best,
Nicole :slightly_smiling_face:

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Nicole, What a roller coaster!

My understanding is that PsA is actually one of the many SpA’s - that is it’s part of the spondyloarthritis family. SpA is an umbrella term for conditions that are characterised by inflammation of both the joints and entheses. PsA is one of these, and so is ankylosing spondylitis.

AS is kind of an odd diagnostic screening term - in that it generally refers to a specific finding on X-ray, rather than symptoms, or even a clinical cause. And interestingly, if you go look at AS documentation, many of the typical PsA symptoms that are found to be most troublesome (fatigue, brain fog), don’t even rate a mention. So it kind of seems to be a subset of the SpAs, just like PsA is.

Meanwhile, whilst I’m sure I’m not the majority, my spinal PsA was the first to appear, with years of “oh its mechanical damage” starting at age 22. Empirically though, the problem was that it neither improved, nor deteriorated, consistent with mechanical problems or treatment (ie it would suddenly be perfect overnight, for no reason, and stay that way for two years, before, you guessed it, me not being able to get out of bed and no cause I can think of… and frankly xrays always showing a bulging disc or two, but often graded as worse, when my mobility was actually better, so that made no sense either)

My PsA onset “proper” at age 36, was first spotted by the physio I went to for back problems.

I doubt I have AS (because AS is defined by the ankylosis process - spinal bone fusion, not spinal inflammation), but I certainly had chronic back problems due to inflammation that sounded and felt like AS, before I got effective PsA treatment.

If your xrays and mri come back with AS, make sure you update us (and @tntlamb) who is somewhat the expert. In the meantime, if you keep treating the PsA to target, that’s pretty effective for AS anyway. If you are concerned, the additional treatment for AS that I’ve read is essentially some daily spinal exercises.

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AS is also called young white man’s disease6 as that is who gets it and when it occurs. They are attempting to do away with the term as anklyosis is a very specific occurrence. There are those of us who have actual AS with bamboo spine and all who get pretty upset with the ever broadening definition of AS to include peripheral symptoms. It matters little to me. The treatment is the same. Just a lot more aggressive PT for AS. In order to relive pain but also to insure that the spine fuses in a good position.

I have a small hump that causes issues you can’t believe. I don’t even want to tell you what it cost to have my new back pack custom altered to fit the hump. FWIW I have ankylosis with PsA. I have a lot of organ involvement. Don’t much care what they call it I just take my meds and exercise.

Jen pretty much explained it in terms that are being adopted currently. The subtypes of PsA will remain including the Spondylitis Form.

HLA- B27 should have been part of your initial work up though a negative test means nothing and a positive test is helpful but not diagnostic.

In any event good luck finding the magic combo of meds. Most of us do eventually.

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Hello @Jen75 and @tntlamb,

Thanks to you both for the advice and information. I must admit I find the whole rheumatology umbrella for all these illnesses quite confusing. You can have symptoms from one but it’s more likely to be another, you can have the gene/markers but not the illness and in my case you can have PsA but no psoriasis. I really don’t care much for a diagnosis at this stage, just a treatment that actually works. So if AS is added to the cocktail as long as the Imraldi works, I’ll be happy.

What has made me think though is your mention of your back pain being one of the first signs of your PsA @tntlamb. I am beginning to think it’s the same for me . My back problems started in my early 20’s and hasn’t left me since, just maybe my diagnosis all those years ago wasn’t just mechanical issues, maybe my rheumatology problems was gradually rearing it’s head then, who knows.

I am off to try sleeping now. I am so exhausted, but my pain is bad tonight, say an 8/10, so falling and staying asleep won’t be easy, as I am sure you both can appreciate.

All the best,
Nicole :sleeping:

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There you go, Nicole. You just hit the nail squarley on the head. You can’t really get much more than satisfaction from a name for your problems. All that really matters is treatment. You’ll get there. Few stay in the “gap” as long as they persist! Stay with us through your journey. You have found fools who care!

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I will be interested in see if you are HLA-B27 positive. I am not and my doc said it didn’t mean much for the PsA. I have started having bad low back problems and he didn’t feel it was AS because AS had a low incidence in HLA-B27 negative folks.

I’m wondering what anyone else has heard on that.

Doc thinks the back problems are just age. I can’t have MRI’s due to some bionic implants, so diagnosis may be hard.

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My understanding is that the opposite applies.

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Really? I’ll have to do some research.

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Sorry, I mis-read the bit I quoted and thought you were saying that HLA-B27 is uncommon in AS patients.

Still, a quick browse of reliable online sources suggests that 10 - 20% of folk with AS don’t have the gene, so you’d imagine that being HLA-B27 negative doesn’t rule it out by a long chalk.

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It gets even stranger to the point I wonder why they even bother with testing it (many Rheumies don’t) anymore. An MRI with STIR sequences costs about the same depending on the facility You need to have Stir sequences or the MRI is worthless (IMO):

HLA-B27 is a perfectly normal gene found in 8 percent of the Caucasian population. Generally speaking, no more than 2 percent of people born with this gene will eventually develop spondylitis.

Second, it is important to note that the HLA-B27 test is not a diagnostic test for ankylosing spondylitis by any diagnostic criteria. Also, the association between AS and HLA-B27 varies among different ethnic and racial groups. It can be a very strong indicator in that more than 80 percent of people in the Caucasian population who have AS test positive for HLA-B27. However, close to 70 percent of AS patients from Mediterranean countries and only 50 percent of African American patients with AS are HLA-B27 positive.

What does mater when making an AS diagnosis are:

  • Onset is usually under 45 years of age.
  • Pain persists for more than three months (i.e., it is chronic).
  • Back pain and stiffness worsen with immobility, especially at night and early morning.
  • Back pain and stiffness tend to ease with physical activity and exercise.

A physical examination entails looking for sites of inflammation. Thus, your doctor will likely check for pain and tenderness along the back, pelvic bones, sacroiliac joints, chest, and heels. During the exam, your doctor may also check for limitations in spinal mobility in all directions and for any restriction of chest expansion. (if he doesn’t put you back against a wall and pull out a measuring tape be very suspicious…

Other symptoms and indicators are also taken into account, including a history of iritis or uveitis (inflammation of the eye), a history of gastrointestinal infections (for example, the presence of Crohn’s Disease or ulcerative colitis), and a family history of AS, as well as fatigue due to the presence of inflammation.

The thing that is most perplexing however is the notion of involvement of the sacroiliac (SI) joints. Some physicians still rely on X-ray to show erosion typical of sacroiliitis, which is inflammation of the sacroiliac joints. Using conventional X-rays to detect this involvement can be problematic because it can take seven to 10 years of disease progression for the changes in the SI joints to be serious enough to show up.

Also keep in mind Ankylyosing Spondylitis and Spondylitis are two different things. Spondylitis is common with PsA. Ankylosis is not.

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