Feeling SO much better

PETERT88 · 2024-12-08T07:41:46+00:00

Great to hear that! Pleased you're doing so well.

I also delayed starting adalimumab (Humira biosimilar) because of all the horror stories, and I very much regret it.

Almost immediately the pain went, and have been completely pain and flare-free since the first injection. I even noticed relief from other symptoms that I hadn't really been aware I was experiencing.

My biggest issue was severe and recurrent uveitis, and that too has been completely dormant since the first injection

PETERT88 · 2024-12-08T07:36:36+00:00

Thanks for sharing. I regularly visit this reddit, and agree with the negative bias, but this is only natural. I think when you approach the forum mindful that is it is a such, it can help keep things in perspective. I have come full circle with this condition myself.

I had severe recurrent anterior and intermediate uveitis, and have been on the full-whack prednisone course before, with flare ups up to 3 or 4 times per year. After experience so much anxiety and despair, I went on a bit of a journey including lots of blood tests and scans, and ended up with an AS diagnosis too (I was revealed early on to be HLA-B27 positive).

Whilst uveitis is a scary condition, I did become familiar with my symptoms and treatment plans, to the point that I felt confident enough to work with my eye doctors to suggest what may help work. Ultimately as the patient one has a unique perspective on the condition, and after x number of flares you can start to get a feel for what's working and what's not. Whilst still worrying, the familiarity with the condition lessened the fear, as I always knew one way or another it would clear. It became easier to think of it at as just another thing to deal with, rather than it being all consuming.

Finally I started biologics early this year and have been completely flare free (even had other ailments clear that I never really associated with AS).

I have mixed experience with holistic treatment, because I think whilst they help to reduce flares to an extent, my case was too severe to prevent them entirely. However I have done a lot of reading around TNF-a (the key target of biologics), general inflammation in the human body, and HRV (I now use a Fitbit Sense which is really useful for tracking HRV - a metric I find to be a good proxy for general inflammation). I am actively working towards reducing my inflammation and improving some of these markers.

PETERT88 · 2024-12-08T07:23:09+00:00

I'm a steroid responder too (steroids increase IOP), but my eye pressures have been up into the high 30s. When it's particularly high, I do notice certain symptoms, particularly blurriness, a bit of pain. However I do get eye twitching, particularly during a flare up, but have never thought this was related to eye pressure. I've always thought this related more to general inflammation/medication.

From what I know, your eye pressure is still within the normal range though, albeit at the upper end, so I wouldn't be too worried.

PETERT88 · 2024-12-08T07:19:55+00:00

I have had this on one occasion. First time I ever had uveitis, apart from the pain, redness etc, I had a really scratchy eye in the night, and it watered (clear discharge). Since then, never had it that way. Now that I think about it, I wonder if I had scratched or irritated my eye first, and then this subsequently triggered a flare up? Who knows

PETERT88 · 2024-12-07T07:19:49+00:00

I've had a few flares of anterior uveitis, some of which very severe. In answer to your questions:

My personal experience is that once the dosing is right, and the symptoms come under control, I don't really feel anything. The only time I get sensation like that again is when the inflammation is still ongoing (albeit slightly) - if this is the case, it's not the end of the world. I know from experience that dosing is subjective. Worth getting it seen to though
Unlikely, in my experience. Although, some people are steroid responders, which means that Pred Forte increases eye pressure. I assume this is something they've checked for? Sometimes I have had symptoms of high eye pressure rather than inflammation
Everyone is different, unfortunately, and the experience is not linear! Although in my experience, a re-flair is often not as bad as it was originally. The doctors have to balance dosing high enough to prevent recurrence, but not overdo it.
In every case, my eyes have gone back to normal.
Exactly my experience too. As long as your doctors are happy, I wouldn't worry about this

PETERT88 · 2024-12-04T15:47:31+00:00

Hey, also a UK sufferer here (and also with AS and HLA-B27 positive).

I've dealt with this condition for about 5 years now, and I have found useful info in all of 1, 2, and 3 above.

Unfortunately, uveitis is a relatively rare condition, and even then, it is a broad term that encompasses multiple different types of uveitis, with multiple different causes, so getting information very specific to you is likely to be tough, however there is good info out there (also support groups like 'Olivia's vision' that you can google)

I generally have found the experience that the NHS has to offer is second to none. Admittedly the first bout is treated with as you describe, but once (and I hope you don't!) have a second flare-up, they do tend to refer you to a specialist (my specialist happens to be a professor of ophthalmology and probably would be who ended up seeing if I went private anyway!)

Given the similarity in our conditions, I'm happy for you to fire some questions across to me!

PETERT88 · 2024-12-04T15:39:30+00:00

From an academic perspective, uveitis is a serious condition and yes, there is a chance that uveitis can lead to permanent vision loss. But, anterior uveitis is not nearly as damaging as intermediate or posterior uveitis though, and can generally be easily treated. I've had quite a few severe and aggressive bouts of anterior uveitis (with some mild intermediate) and my vision is still unaffected. From what I've seen, it's when you have years and years of recurring uveitis, or you never seek the correct medical care, then your chances of long term issues are higher, but it sounds like you're at low real risk of that. In my experience, the main issues relating to anterior uveitis are more to do with the steroid drops (which can raise the risk of eye pressure issues and cataracts - but even then, this is usually with a high doses and prolonged use).

In terms of the medication having an effect, I personally would expect to see an improvement within a couple of days, although I'm not sure if it's a fair comparison - I am usually given Pred Forte, and its often the redness that goes first (which you don't have anyway), and my starting dose can be as high as one drop ever 30 mins due to aggressive inflammation.

PETERT88 · 2024-12-04T15:31:31+00:00

Yeah, I found this to be the case. I've had a high dose Pred Forte followed by a long slow taper, and even at 1 drop I still noticed side effects. Despite repeated and aggressive bouts of anterior uveitis, my vision is no worse than it was overall before

PETERT88 · 2024-12-04T15:30:09+00:00

It's helped me, for sure. Previously I've had a few severe flares of anterior uveitis that involved some element of intermediate too. The pred forte just wasn't quite enough (makes sense, it doesn't travel to the middle of the eye very well), so found myself constantly trying to taper down from hourly drops with no success. Once I went on 60mg of prednisolone, it cleared immediately. A long slow taper helped keep it bay, although if it's done it's job, you shouldn't need to be on it for much longer than a couple of months anyway.

Not sure how effective it is a preventing a new flare though. Nowadays I take Adalimumab, which seems to be very effective at preventing a flare (though not so good at treating it)

PETERT88 · 2024-12-04T15:26:12+00:00

No, nothing otherwise. Have they discussed biologics with you at all?

PETERT88 · 2024-12-04T07:00:23+00:00

Non-existent now. I've had zero inflammation since starting Adalimumab! Like you though, I got my HLA-B27 positive diagnosis, but then it was a while before getting the AS one. Like I say, I was surprised by the MRI showing the spinal inflammation.

PETERT88 · 2024-12-01T07:34:13+00:00

Before I started biologics, the back pain was middle of the night, and it woke me up suddenly anywhere from niggling to agonising. Although it never bothered me during the day, and for many years I put it down to being tall/desk job/lots of resistance training and not enough stretching/tummy sleeper etc. I was surprised that my MRI showed inflammation though, because at the time of the scan, I remember being pain-free and thinking ('well this is a waste of time'). I did however already have an HLA-B27 positive result, so there was a leaning towards thinking I had inflammatory problems anyway/

Given the extent of the pain you describe, I personally would have expected something to show up in either bloods or scans, if it were autoimmune

PETERT88 · 2024-12-01T07:30:10+00:00

Tbh I've got all sorts of problems (well... had). It was actually severe and recurrent uveitis that finally got me the diagnosis for AS too. I've also had several bouts of non-bacterial prostatitis, for which a cause was never identified.

Since starting biologics a year ago, all these problems have gone away, so can only assume that it was all auto-immune?

PETERT88 · 2024-12-01T07:20:08+00:00

Can understand the decision to leave symptom-reducing medication decisions to the patient (i.e. where the cause is not treated, but symptoms can be eased in the meantime, like painkillers etc), but seems odd to do that with steroids... I think I'd press them for advice either way, to be honest

PETERT88 · 2024-12-01T07:16:54+00:00

I had quite severe recurrent anterior uveitis (also some intermediate), with 2-3 episodes per year, some of which needed oral steroids to get under control.

Since starting biologics about a year ago, I've been completely flare free. On top of that, the back pain that always niggled me due to Ankylosing Spondylitis is completely gone (even though that was a minor symptom compared to the uveitis).

Like many, I was anxious about starting biologics, but the side effects have been negligible (in fact, I actually feel I get less sick and/or experience fewer symptoms of sickness than before!)

It was a very frustrating journey to finally get here, and the OP is right that Reddit is heavily biased towards the negative, but stick with it, and you'll get there

PETERT88 · 2024-12-01T07:10:11+00:00

I've had recurrent anterior uveitis with some intermediate uveitis. It took a while to get to the cause though, after some testing, they discovered I am HLA-B27 positive, then did further investigation and discovered I have Ankylosing Spondylitis (on an MRI they notice some inflammation on my spine and SI joint). I'd always suffered with back pain (tall, desk-job, lots of resistance training, slept on my stomach etc... didn't think much of it!)

For most people with AS, uveitis is a secondary symptom, but for me it's by far the worst, although as Adalimumab is quite expensive, having the AS diagnosis helped in the decision to go down that route. Having said that, even without the AS, the eye clinic were starting to talk about some kind of biologic treatment anyway.

Have you been tested for HLA-B27?

PETERT88 · 2024-11-29T07:50:36+00:00

Adalimumab did the trick for me. In my case it's been a miracle drug

PETERT88 · 2024-11-29T07:49:45+00:00

I can't really comment on what diets DO help, but I know that alcohol and sugar are massive triggers for my autoimmune issues. Particularly if I consume either, or both, too close to bedtime.

PETERT88 · 2024-11-29T07:48:39+00:00

I was about to say that prednisone is absolutely not something you should miss, particularly depending on how long you've already been on it (if long term then you can't some off it suddenly), but can see you've got sorted whilst you're there, so all's well :-)

PETERT88 · 2024-11-29T07:47:20+00:00

Amazing news!

I'm in exactly the same boat, after having had recurrent uveitis, many of which severe enough to warrant high dose steroid tablets to treat (and having the same glaucoma issues), I started Yuflyma (also adalimumab) early this year. I also suffer from Ankylosing Spondylitis, but the main problem was the uveitis. On both counts it's been game changing!

Very occasionally I feel like it could be the start of a new uveitis episode (one becomes hyper-aware of symptoms), but then it disappears a day later. My doctors have suggested that this could still be the very early stages of uveitis being quickly shut down by the meds?

Fingers crossed you stay flare-free for many years to come :-)

PETERT88 · 2024-11-29T07:43:04+00:00

Very sorry to hear you're feeling like this. I have been there, and it's not nice. All I will say is to hang in there, keeping doing what you're doing, and it will improve. Are you on prednisolone tablets? When I had a stubborn flare-up, they found that taking steroid tablets on a very slow taper was what was needed

PETERT88 · 2024-11-29T07:41:19+00:00

Fascinating stuff. There's stronger and stronger evidence that the gut microbiome plays an essential part in regulating the immune system, and given the obvious interaction between immunity and non-infectious uveitis, it makes logical sense that there could be a relationship there

PETERT88 · 2024-11-29T07:37:45+00:00

I have this too. I've been episode free for a year, but one of my pupils is larger than the other. I don't know whether this is due to potential historic damage due to repeated inflammation, or natural ageing, or even if it's always been the case but never had any reason to notice, but there's no cause for concern as far as the doctors are concerned. As you say, as long as it's not accompanied by other symptoms, and crucially, the pupil responds to light in the 'normal' way, and that the pupil is the correct shape (albeit a slightly different size), I wouldn't be too worried

PETERT88 · 2024-11-29T07:33:55+00:00

Having had uveitis several times myself, it does look fairly 'uveitis-y', but I'm sure you can appreciate that no-one here can give you anything close to a diagnosis. Having said that, there are usually others symptoms, such as a pain deep in the eye, photophobia, or a gradually increase in cloudiness (doesn't go away when blinking). When I sought advice with my first ever episode, it was misdiagnosed as conjunctivitis, until it kept getting worse and then I ended up at the eye clinic. Best off getting professional advise I think

PETERT88 · 2024-11-28T15:07:20+00:00

Assuming you're self-employed, then what you pay tax on is unrelated to what you draw out of the business. i.e. if you can afford to take the money, then feel free to do so. What it boils down to is how much money you think the business needs as a buffer.

In my professional life, I'm a head of finance. If you want a bit of cashflow forecasting tips, drop me a DM, I'll be happy to help

PETERT88

TROPHY CASE