Anybody been on Cosentyx ?

I like your progress.

Myself, I have been on 700 mg. Rema cade 6 week dosages for ~1 year and before that varying amounts and intervals for ~15 years.1

The last 2 years have been awful for sicknesses. Had double pneumonia, several viral colds and most recently shingles and bell's palsy. Was hospitalized for the pneumonia and many urgent care trips for the other issues i am at the point now that Do I want to cope with more ra symptoms or die from other issues. I am becoming sick way too often. At minimal I am going to reduce my dosages of Remicade and seek a better solution.

Age is also a contributing factor

Hi sunlight,

I am new to this group and was diagnosed recently with AS. (Although, I have had symptoms that have gotten progressively worse the past few years.) Have you been taking anti-TNFs or do you use exercise and NSAIDs for AS? I felt like my rheumatologist was really trying to sell me on Humira but the possible risks seemed to great for me. I am trying an anti-inflammation diet and I know I need to get out more but I am soo tired all the time. If you have any  suggestions about exercise, I would appreciate it. The pain and stiffness is awful but they say it gets better with movement? I'm not quite sure.

Hi JZ...well, I haven't been diagnosed yet but will be amazed if I don't have AS. All the symptoms absolutely check out - lower back pain, migrating recently to the ribs and chest area. I'm waiting for a rheum appointment in the UK and have already had X-rays, which showed nothing.

I must say I'm not 100% sure about exercise. It seems to help in the moment of doing it, but sometimes the next day I've had pain (particularly if I've been exercising my chest). I'm going to investigate swimming as an option, which is apparently more gentle on the body. But generally I do it for my mental health, particularly cycling.

I would however say that stretching is essential. I find the UK's charity, NASS, useful for this. Below is a link to their stretching and exercise programme. One is an app you can download, the second is a book which I bought from their site and is a good guide.

https://nass.co.uk/exercise/back-to-action/

Hi Sunlight2, thank you so much for suggesting the NASS cite! What a great resource, I am going to look into purchasing one of their books. 

And I hope for you that you don't have AS, but if you do I hope you are able to find the treatment that works best for you! I said the same thing before being officially diagnosed last month though - "I will be surprised if my rheumatologist says I don't have AS." Were you tested for the HLA B27 gene? Are you able to get an MRI? I have had both x-rays and MRI but the MRI picked up the fusion beginning in my neck.

Thank you for the resource. I have heard swimming is much better because it's gentler on the bones.  I'm going to practice their stretches too. 

Hi JZ...I'm negative for HLA-B27 and my other bloods were also within normal ranges. Coupled with my X-Rays not showing anything maybe that makes me 'that' difficult person to diagnose. But I have an appt with a rheumy in February and hopefully that will lead to an MRI.

In addition, two other symptoms recently appeared: crepitus (crunching sound) in my neck, along with pain in my neck if I don't get my pillow height EXACTLY right. And a clicking in my right hip when I flex it above 90 degrees.

There are other things I don't have: no eye problems or heel pain; no shoulder pain or shooting pain in the legs or buttocks. So I'm grateful for that.

But the back pain is constant (Ibuprofen does dull it but it rarely goes completely) and the chest pain worries me the most.

The heel pain is one of the predecessors to AS not necessarily continuous.

Eye problem would be from iriitis and would also be an ocassional symptom.

I'm not an expert but as someone who has had AS for over 20 years I can say that those are some symptoms that I have experienced.

Eye problems and heel pain come and go. But the back pain is constant. One thing I have noticed with AS is that when I was younger the pain was more in my lower back and then seemed to work it's way upwards and affect the peripheral joints as I got older.

Sciatic nerve pain was a big problem when I first developed symptoms. I hope you don't have it. It's a terrible disease

Hi sunlight2, I have not been diagnosed AS just yet (I'm still waiting for MRI's) but I'm certain that will be the case. More than 3 months ago I started having back pain when waking up, which has been increasing (in soreness, regularity, duration and spread in location) and since a couple of weeks ago my symptoms are worsening fast. I actually have very similar symptoms to yours at the moment: I have crepitus in many joints, quite a lot of back pain (also significantly dulled by a NSAID: Vimovo), chest/ribs pain, and no eye problems or heel or shoulder pains (at least not yet). As opposed to you, though, I started having a little shooting pain down my leg a couple of days ago. Like you, I am negative for HLA-B27, got normal blood tests and x-rays aren't showing anything, Since our cases seem to be quite similar, I'd be very interested in knowing more about how you're getting on. Are your symptoms worsening fast? do you know whether people without HLA-B27 have a better or a worse AS? (according to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079257/ it doesn't make it better or worse) May I ask, how old are you?

All the best...

Hi marc...

No problem - although I really don't know much about AS I'm happy to share my experience. I'm 43 years old, so would be quite late to develop AS. I had my rheum appt and they have ordered an MRI. They also did some basic mobility tests such as the Modified Schober's Test. You can actually do them yourself at home with the help of another person.

These only form PART of the diagnostic toolkit. I was JUST within normal range for the Schober's test but my flexibility in the lower back is not great. I had done this at home so kind of already knew that. However after my friend had took my measurements I did the reverse and his flexibility was much better even though he's not very fit generally. So I do think again this points to an AS diagnosis on my part.

However in the last month I have to say my symptoms have eased a little. Perhaps I am having some temporary relief - I have heard AS can come and go in severity. It's still there, especially in the chest, but just not quite as strong. 

Taking advantage of this feeling better I went for a short run (about 2 miles). And as I've often found, the next day this set me back a bit. The pain was much stronger than it had been. I do wonder about the notion that exercise helps AS...do people mean 'in that moment' or generally afterwards? Because I've often had pain in the subsequent days following exercise.

Still, I would say my pain has levelled out overall and is still a little less severe. I have not had any shooting pains in buttocks or legs, still.

As for whether negative B-27 indicates worse disease, I really don't know the answer to that. I have read in a study from the 80s that chest pain IS an indicator of more severe disease, but don't know if that still holds.

Let me know what happens and I hope you find some answers and relief soon .

Cheers.

Moderator comment: I have removed the link as users can easily find the information by searching Youtube rather than linking to a specific page. If users want the specific link use the Private Message service to exchange.

Please keep us informed. I'm certainly interested in your results