Ankylosing Spondylitis

byte

I've been suffering back pain on and off for years, though it came to a head more recently with painful spasms in my back.

Ibuprofens were as effective as Smarties so I went to the GP. With my history of back pain and the recent spate of spasms, he had me bend over (ooh, matron) and noted hte lack of flexibility in my spine). He organised me for Xray. First Xray had shown possible signs of AS, so was sent for more from varying angles.

In the meanwhile I was prescribed Arcoxia 90mg - 1 a day - to help alleviate the pain. They worked insofar the spasms eased, as did the back pain. After the 2w course ended the spasms came back with a vengeance, with pain I have never experienced before nor want to again! Some more 90mg Arcoxia, which I then started supplementing with paracetamol, as Arcoxia don't seem to deal well with the pain, but do seem to hinder the spasms.

Cue this week, after the 2nd round of xrays have indeed confirmed AS, I'm now on a month supply 120mg Arcoxia while I await a chance to visit the Rheumatology dept.
I also have BuTrans patches, but I'm kinda hesitant to take them.

I also find that the Arcoxias have left me feeling fatigued often and always feeling like I've the flu or cold (which I see is a common side effect)

Are there any boardsies who also have AS? I had never heard of this condition before recently, and various searches have left me very daunted!

My post is a bit long-winded, but wondering if there are others enduring this condition, but managing to cope, or what I can expect from my visit to Rheuma.

Thanks.

Tropheus

I subsequently found out that I don't have it a few years ago after being diagnosed in the late 80s. At the time of diagnosis, I was running competitively and getting a lot of lower back pain. I was sent to a rheumatologist who sent me for x-rays and examined me. Given my age and symptoms and the fact I tested positive for a gene - HLA B27, I got the diagnosis.

Over the years I just got on with it, using medication when needed and tried to stay active. The pain in my back didn't get much worse, but started to spread to other areas.

About 4 years ago, a consultant I was seeing for another condition asked that I get it checked out and referred me to another Rheumy. He looked at me and said that if I was diagnosed with AS more almost 30 years ago, that it would have progressed and be much worse in terms of mobility. He said he doubted I had it and send me for an MRI. When I went back to him, he said there were no signs of it in the MRI and that my lack of mobility in my back was down to short hamstrings. He said that the spreading of the pain to other parts of my body was most likely Fibromyalgia which was then diagnosed.

The Rheumy will most likely send you for an MRI - they can't tell much from x-rays which was all that was available when I was originally diagnosed. Did you have a blood test for the HLA B27 gene? If positive, it means you can develop AS. If negative, it's far less likely. They will also give you a physical examination to test your lower back flexibility.

Best of luck with it.

byte

Jesus, that diagnosis for years, then it turned out to be wrong? I suppose the technology has improved a lot in the past few decades.

Aye, I dunno. My GP seems quite convinced that it's AS I have. I did give bloods the first day I was in, but that was for testing gout and cholesterol etc. He never made mention of B27 to me, nor did I think to ask, as it's only in the past number of days that I'm more aware of AS.

As it happens, an appointment for the Rheumatologist arrived in the post this morning, scheduled for Wednesday week. I hope to know more then. I'll assume further months of delays for MRI scan or whatever else is needed. I'll report back on his/her findings in due course.

I really aught to get that Drugs Payment Scheme set up too, as I've spent over 150eur on drugs this month before even seeing the Rheumy.

byte

Just to update the thread:

Today I had my appointment with the Rheumatologist in Manorhamilton Hospital. It was confirmed today that it is indeed AS I have.

I haven't been given any long-term meds yet. For now I was given a steroid injection (don't remember what it was called), but it's supposed to last a number of weeks.

I had to get a chest X-ray to check for TB and more bloods done, before I will be put on proper drugs which will be anti-TNF stuff. That'll be some weeks away yet.

Plenty of exercise was strongly emphasised, as I expected.

So I'll be in limbo until I am re-called in a number of weeks. She said I'd be with them a couple of times in the next while, then I might only see them once a year, depending on how things go. I'll also need regular blood tests once I start using anti-TNF medication, as it will affect my immune system.

Will report back what happens then - hopefully the steroid injection will last long enough, as it seems more effective than the Arcoxia is!

DubJJ

Hi Byte, I'm in a similar position as yourself, started getting symptoms about 18 months ago and was finally diagnosed with As in Feb. I started TNF inhibitors (Cimzea) in March and did start to feel a bit of an improvement after about 4 weeks but it hasn't lasted, I'm on week 8 now and getting worse again. I don't know if this is normal but I've been advised that it can take up to 12 weeks to feel the full benefit.
Make sure you sign up to the drugs payment scheme asap as the TNF treatment is really expensive, about €1K per injection, but with the DPS card you are limited to pay €144 a month.
Has the steroid injection made a big difference?

byte

Hi DubJJ

The AS is starting to really get on my wick atm, seems no let off at all with the pain! The steroid jab seemed effective the first day or two, but I don't think it made much difference overall. I'm still taking the NSAID Arcoxia 120mg, as well as paracetamols during the day. Don't think this will aid my liver in the long term!

Today, my pain isn't too bad. Sporadically, it'll be quite annoying. Yesteday was hell. Day before that wasn't too bad. So unpredictable.

I don't know when I can expect a call back to the Rheumy, though my Drugs Payment Scheme card arrived in the post yesterday! No way could I afford those jabs! :eek:

Hopefully the Cimzea kicks into action for you soon. I see brands like Humira and Enbrel mentioned often, never heard of Cimzea before.

DubJJ

That's the most frustrating part, some days don't feel too bad and you convince yourself it's improving only for it to return with a vengeance!
The consultant who prescribed the Cimzia told me there were several options for TNF blockers and it was basically pot luck, if I try one for 4 months with no results they will change me to another such as Humira, Enbrel etc. Apparently some people react better to different brands for some unknown reason.
At the moment I'm still on NSAID Diclofenac 50mg twice daily and Tramadol as needed, I try and limit the Tramadol to evenings as it makes you quite drowsy (although this is great to help with sleep). I've been like this for about 18 months now and the NSAID's can tear my stomach apart (I also have Ulcerative Colitis) but it's the lesser of two evils.
On the bright side, when the Cimzia was working it felt like a massive relief, the pain never completely disappeared but it was manageable enough that I could go for days without taking any other medication. So hopefully it will work again or worst luck they will change me to another brand that will!
Do you mind if I ask what age group you're in? I'm 39 and apparently quite old to be diagnosed.

byte

DubJJ wrote: »

That's the most frustrating part, some days don't feel too bad and you convince yourself it's improving only for it to return with a vengeance!

Yup! Very frustrating.

The consultant who prescribed the Cimzia told me there were several options for TNF blockers and it was basically pot luck, if I try one for 4 months with no results they will change me to another such as Humira, Enbrel etc. Apparently some people react better to different brands for some unknown reason.

Aye, it's a wierd one. I just hope I start taking something soon.

At the moment I'm still on NSAID Diclofenac 50mg twice daily and Tramadol as needed, I try and limit the Tramadol to evenings as it makes you quite drowsy (although this is great to help with sleep). I've been like this for about 18 months now and the NSAID's can tear my stomach apart (I also have Ulcerative Colitis) but it's the lesser of two evils.

I wonder if the likes of Diclofenac is more effective than Arcoxia. The Arcoxia 120mg is taken once a day. I have to take paracetamol's 4 times a day to supplement it, as it's still sore. Will use Etoflam most evenings too, when I have it to hand.

On the bright side, when the Cimzia was working it felt like a massive relief, the pain never completely disappeared but it was manageable enough that I could go for days without taking any other medication. So hopefully it will work again or worst luck they will change me to another brand that will!

I'd like to have the pain sort of manageable for a while without constant tablets on top. Hopefully the Cimzia will kick back into action for you.

Do you mind if I ask what age group you're in? I'm 39 and apparently quite old to be diagnosed.

I'm also 39, coming 40. So, I'm also late in being diagnosed.

DubJJ

I'm also 39, coming 40. So, I'm also late in being diagnosed.[/QUOTE]

That's mad, exactly the same age! Apparently most people are usually diagnosed or start having problems in their late teens or early twenties, so at least we managed to have an extra twenty years before suffering.
I'feeling a bit better today as the weekend was tough for me, the worst I've been in a while. Hopefully this Cimzia will start to kick in again by the time I get to the 12 weeks and this is just a little re-lapse (9 weeks today since my first injection). I'll keep you updated on my progress and if I find any little tips that relieve the pain.
It's good to know I'm not the only one going through this, to be honest I thought there would be a few more on the forum suffering with AS.
One of the biggest problems is that from the outside you look normal so I don't think anyone can really appreciate how painful it is and you can feel a bit like a hypercondriac.

byte

Heh, you kinda echo how I feel about it!

Today, at work, it was mostly fine, up until around 5pm (I work to 6, and I found a few times, that after 5, things go downhill til I get home and lie down), then the pain kicks in. Then stressing with it, which probably makes it worse! Right now, my right leg is throbbing with pain at the hip, like wtf? Maybe it's the stretches I was doing, I dunno.

I too, will continue to update this thread, especially with my next visit to the Rheumy. It might help sombody else looking to find out about AS...

DubJJ

"Today, at work, it was mostly fine, up until around 5pm (I work to 6, and I found a few times, that after 5, things go downhill til I get home and lie down), then the pain kicks in. Then stressing with it, which probably makes it worse! Right now, my right leg is throbbing with pain at the hip, like wtf? Maybe it's the stretches I was doing, I dunno.".

I'm also finding that it gets worse as the day goes on, tough in the morning when I get out of bed but then eases a bit after a shower. As the afternoon creeps in it gets worse again until the evenings are almost intolerable. Mine's mainly my lower back, up my spine and across my shoulders.
Do you find that stretching improves anything? I wasn't given any exercises or stretches to do, and when I asked about physio I was told that once the TNF inhibitors kick in I won't need any of that.

I've been onto the hospital this morning as it feels that the Cimzia has stopped working completely.
They've assured me that this can happen after a few weeks, you start to feel relief initially but then when things settle the pain can come back. This doesn't mean that it's not working and it might still improve by the twelve week stage!!!
They've upped my pain relief to 75mg Diclofenac NSAID 3 times a day and told me to ride the storm until I get to 12 weeks and can be reviewed properly.
I feel a bit better knowing that this is not unusual and doesn't mean it's a failure, so I think it's time to man up and tolerate it for the next few weeks.
I'll update if there's any developments, as you say it might help somebody else looking for info, I know when I tried to find out about certain issues there was very little info about.

byte

I don't honestly know if the stretches help or continue to make things from getting better!

That advice about not needing physio seems dodge. Any AS research I've done insist exercise is one of the most important things.

http://nass.co.uk/exercise/
http://www.ankylosing-spondylitis.ie/about_as#/exercise_and_as

Both those sites have exercise apps for Android or iOS. I've tried a few, though the pain limits what I can achieve. The few stretches I do, were given to me by a physio I went to privately before being diagnosed with AS.

DubJJ

Thanks Byte, as soon as I get over this flare up I'm going to need to start to get some sort of routine going.
The contradiction between advice is unreal, if you try and search for diet options to help with AS/inflammation some sites recommend cutting out sugar, some say to avoid artificial sweeteners and the nass website says ignore all of these as nothing has been proven (except possibly starch).
I think it's such a subjective issue that you have to find what works for yourself through trial and error, I think this is the same with exercise.
I'd read that golf was supposedly good as it keeps you flexible and loosens up the back and shoulders and then I'd read that it was one of the worst possible.

This is a quite a reassuring story
scotsman.com/news/back-into-the-swing-of-it-1-719572

byte

Aye, Ian retired this year
http://www.golfdigest.com/story/ian-woosnam-quietly-calls-it-quits-in-the-masters-25-years-after-win
I'm not into golf but fair play to him to cope until now. I don't know of any other celebrity/professional sports type person with AS.

Today was a mixed bag: up this morning, my left side above my hip was savage sore. Work was a chore, but I got through it. Now, it's my right side that's sore! Unbelievable! There's also a sort of dull throb on my lower spine up as far as my ribcage.

Do you ever get pains in your leg? Or feel that your legs are kind of weak?

As an aside, I really need a decent desk chair for when using PC, etc. Both at home and at work. Not sure what to go for at the moment.

anothernight

I don't have AS but my fiancé does. He's on Enbrel, but as far as I remember he takes it in a non standard pattern as part of some trial or other (I forget the details). He also takes a whole host of other painkillers and other medication that helps in a more supportive role (eye drops, sleeping pills, etc).

Three things have made a massive difference to the day-to-day management of his condition. One is not legal and I'm not sure the rules allow its mention, the other two are exercise and back rubs, applying gentle pressure to the joints that are acting up the most. I give him rubs about twice a day, and it helps when he's having what he calls total leg failure, which is when he has active inflammation at his hip joints and it becomes too painful to use one or both legs.

He seems to be stiffer just after he wakes up, especially if he has slept longer than usual. We've settled into a routine where he wakes up, has his coffee, and then I "de-creak" him before he starts his day. That seems to loosen his joints faster than they do otherwise, which usually solves the pain issue without having to take as much medication.

He has also experimented with diet changes, but saw no improvement. On the exercise front, his doctor told him to avoid weight-bearing exercise. However, his condition seems to respond better to weight-bearing than non-weight bearing exercise, so I don't know...

I'm very surprised that you were told you wouldn't need exercise once the TNF blockers kick in. My fiancé definitely still needs at least stretching when he takes Enbrel, and he went through the whole occupational therapy/physio stuff years ago.


EDIT: Just checked with him. He's actually done two stints of inpatient rehab to strengthen bits and teach him the correct ways to stretch and all that. He's received excellent care in Dublin over the years.

travellingkitty

I've just been put on Humira for AS and took my first injection last Friday - one week ago. My inflamed joints (knees and toes) in my case are already much improved and although there's still some pain it's quite manageable. I've had some low level nausea on and off all week and shaky hands a couple of days after the injection but not since. I'm still taking Vimovo (naproxen) but may try coming off it at the weekend. I had good results with Difene (diflofenac) prior to going Humira but came off it because it was playing havoc with my stomach when I was on it long term.

My AS seems like it's a-typical as it started off with eye problem - uveitis (aka iritis) which started 10-12 years ago with anything from 2-5 flares a year. I was in the UK at the time and my opthamologist referred me to a rheumy after a few years who didn't tell me he was treating me for AS but must have been as he put me on methotrexate. It had no impact on the flares and after about 4 years he took me off it and said just to manage the iritis as it happened.

I since returned to Ireland and the iritis flares continued but reduced in frequency. (I used to get them after any flight longer than 3 hours but that pattern seems to have broken now. All the medicos were mystified by the flight flare link.)

In Ireland I was referred to a rheumy in Croom publicly in 2013 but while I have the HLA B27 marker I didn't have other inflammatory markers in my blood tests so wasn't put on anything other than NSAIDs.

In the last 2-3 years I had two 'sausage toes' (badly swollen with fused joints) on my right foot with increasing foot and knee pain. Over Christmas I had a particularly bad flare along with a ruptured Bakers Cyst and was on crutches for 9 weeks and my knees have been bad since then. I was referred back to Croom privately in March and went through a set of tests including X-rays, MRI & manteux (TB). Saw him again last week and he confirmed a diagnosis of AS & put me on the Humira.

Exercise wise I find swimming and Aqua aerobics good as I can't do much in the gym and only recently able to walk much again.

I'm pretty optimistic about the Humira and the rheumy nurse in Croom said a lot of people had had very good results with it & even though she told me it could be up to 3 months before I see results as I said it's already done more for the inflammation than any of the NSAIDs. The potential side effects are a bit scary but fingers crossed.

I'm 52 so pretty late to be getting the diagnosis but suspect I've actually had 12 years or more.

Rob Thomas

I'm 38 and was diagnosed with AS when I was 24. The diagnosis was a relief after 3 years or agony which no one seemed able to sort out. I was initially told I didn't have it but a second MRI and more detailed blood tests eventually confirmed the diagnosis.

I recall it took quite a while for the medicine to kick in. Initially I was on a type of Sulfasalazine a couple of times a day but over the years the dosage kept increasing until eventually I had to progress to Enbrel injections approx 4 years ago. I was injecting once a fortnight but I'm up to once a week now.

But the good news is I feel good. I can honestly say, apart from having to give up GAA at 23, (tackle impacts left me too sore) my condition has not affected me really. I can be stiff at times, I don't have great flexability and the Enbrel is no help to keeping weight off but, all in all, I live a normal life. I played soccer until 36, I still play astro twice a week, cycle and play golf.

Stretching and exercise is the key. Often I felt slightly sore when exercising but afterwards you will feel the benefit. I can't emphasise the importance of stretching, I didn't do enough of it and I know if I did I would be a lot more flexible now. Swimming is a great way to keep supple, unfortunately I hate it so I don't do enough of that either. But for my age, while not as flexible or fast as others, I'm relatively fit.

It can be daunting being diagnosed and starting on the medication. Like everything, if you read the side effects of Enbrel you would never take it but it works for me. I'm lucky to have a great consultant in Galway who has managed me though nearly 15 years of this.

I'm lucky in that my condition is well under control, I know it's not the same for others. But keep the chin up OP, listen to your consultant and find out what works for you. Spend 10 minutes each day stretching and try to stay active. The problem is, when you are sore you can't do anything, but that only makes it worse so try to keep active. If you smoke, give up. I don't, but I know from family members who have the same condition it doesn't help.

There is an Irish AS association, but it's not great. I follow the UK one and there are helpful tips and exercises there.

This is a daunting diagnosis, but it's not as bad as you read on the Internet. you are young, treatments are improving all the time and this is manageable.

God luck

byte

Thanks everyone for posting. It's good to get input from others suffering with AS (or close to somebody with it).

I just wish they'd hurry up and call me back in and gimme my Humira/Enbrel/Cimzia! Hope the TB test thing comes back clear.

travellingkitty

byte wrote: »

Thanks everyone for posting. It's good to get input from others suffering with AS (or close to somebody with it).

I just wish they'd hurry up and call me back in and gimme my Humira/Enbrel/Cimzia! Hope the TB test thing comes back clear.

The guy who did my manteux test told me that in 30 years of administering the test no one had ever tested positive so hopefully your chances are pretty good.

byte

travellingkitty wrote: »

The guy who did my manteux test told me that in 30 years of administering the test no one had ever tested positive so hopefully your chances are pretty good.

Aye, I think they just have to be precautionary, because the likes of Enbrel etc mess with your immune system.

I've always been very resiliant to things like colds, flu, coldsores, etc. but maybe after I start taking the fancy stuff, that could change... Anything at this stage though, to try cull this constant damn pain!

byte

Got a call today from the hospital. I have to visit the Rheumatologist on Monday week.

I'm hoping the TB test was clear and I'll get onto the biologics.

Painwise, this week wasn't too bad, barring random flares of pain. Not near the extent of pain I had when it was at its peak in February. There tends to often be a dull pain where my SI joints are, I guess I'm stuck with that. And I get pains to the front of my hips, near my stomach. Feels like the pain reaches round from the back to the front above the hip.

I'll update what happens after my appointment.

byte

So, was with the Rheumatologist again today.

I got the all clear for TB, etc. and have been prescribed Humira. I have to wait for a nurse to contact and visit me, to show me how to use it correctly, etc. So now the new Humira pens sit in the fridge, taunting me!

I was also told to stop using Arcoxia, and she prescribed Celebrex to me instead.

I've also to attend physio at my local hospital.

Wheels are in motion now, just a case of seeing how this'll all pan out for me.

DubJJ

Hi Byte, how you getting on with the Humira?
I've had a bad few months, it turns out Cimzea stopped working for me so they've started me on Humira last week. No improvement yet but it's early days.

byte

Ugh, it's a bit of a rollercoaster really.

After the first few days, I thought it was working great, then downhill again. I think it helps a small amount, in that in the 3 or 4 days before the next jab, the pain increases.

However, I was getting very sore up to my most recent jab (every 2nd Thurs) and I'm still damn sore.

I think Humira helps a small bit, but not to the extent the rheumy was suggesting when prescribing it.

The pain between my lower back and behind my ribs can be very excruciating and debilitating. I haven't had a day when my lower back hasn't been sore and distracting to some extent.

I did have a day appointment about 4 weeks ago, where I was to get physio, and mainly the hydrotherapy that I felt would help. Arrived to be told that the hydro machine was not working, so the day ended up being a half day, with the physio just re-iterating what the physio in local hospital was saying. Still got charged the full day €75 though :mad: At the time, I did mention that I didn't think Humira was having the full effect, but was told I had to bear with it another while...

I did buy a TENS machine, which helps a small bit. Does anyone else use a TENS machine and find any benefit? The machine I bought was a cheap manual control one, not as fancy as the digital one that was used by the physio.

DubJJ

Sounds very similar to my experience with Cimzia, I've just spent 5 months trying to convince myself that it was helping a bit even though I was still in constant pain. After talking to my consultant last week he made it clear that if it was working properly I would've known for sure and I wouldn't need pain relief except for the odd occasion (maybe once a month).
Saying this he also said that 50% of the patients that TNF inhibitors work for don't have success with the first one they try, so still early days!

I spent about €350 last month on alternate treatment acupuncture, massage, chinese herbs etc.. and didn't really make much difference!

I'll keep you updated if I have any success with anything.

byte

Aye, don't know when I'll get called back to the rheumatologist, but hoping it'll be soon.

I've only recently started a sort of pain diary; I really should've done one sooner.

Not sure what to expect after Humira, if given the chance to change. I suspect Enbrel or Cimzia, as they seem popular alternatives.

I've heard of a newer injection called Cosentyx, but unsure how successful it is.

Similarly, I will update thread if I get any change to meds or change to pains. Fcuking hope so!

Hope the Humira works out for you!

DubJJ

I don't know if you're taking any NSAIDs at the moment but I was on diclofenac for a long time.
About 2 months ago I started getting really bad stomach cramps and had to stop taking them completely, when I discussed this with my gp he prescribed me Vimovo which are a combination of naproxen anti-inflammatory and ameprazol to help line the stomach. These have been a godsend and I wish somebody had told me about them a long time ago, if you are taking anti-inflamitories for pain relief try and get prescribed these as they can help prevent the long term damage that NSAIDs can cause!

byte

The NSAID I was prescribed was Celebrex. On full dosage of 400mg daily, as well as Paracetamol tablets, and occasional Etoflam gel.

I was told Celebrex was easier on the stomach than Arcoxia and Difene (the latter plays absolute havoc with me).

byte

Sorry to hear that. Oddly, I've never had upper back or chest pains worthy of note, except maybe if I was playing videogames for an hour, I'd get sore shoulders, but just put that down to the way I was holding controller or something. Upper back pain has become an issue now though, which is a concern. Back to the rheumatologist on Monday, not sure what she'll suggest.

I do wonder if Vimovo is much better than Celebrex, though my dodgy stomach might mean why it was never suggested to me.

Did the rheumy suggest anti-TNF drugs at all?

Also, curious as to what age bracket you fall into (if you don't mind me asking)?

byte

I'm 40. Back pain for years on and off, until it culminated into me having the worst pains I've ever experienced in my back, with horrible debilitating spasms across my back which froze me on the spot with agony.

Maybe if I'd visted the GP more often when backpains occured, I'd have been diagnosed sooner.

No odds now, it is what it is. Can't sit for more than 30mins without my lower back aching which can be annoying.

byte

Was with the rheumatologist this morning and she has decided to move me from Humira to Cimzia, as the former isn't working as it should.

I'll be on loaded double-doses for the first few times, then standard one-jab doses. I really hope Cimzia does what Humira didn't do. She said she'd know in 3 months whether it was a success, and if not, it'll be onto Cosentyx.

Unlike Humira, Cimzia is only in syringe form, not available as a pen at the moment. The needle seems quite small though so I don't think it makes any real odds. I'll have to get Abbvie to take back their stupid HealthBeacon too!

I've also been given a jar of Deltacortril steroids to take in the interim. They might help a bit too, in the meantime.

EDIT: I forgot to mention that's she is also putting me forward to get an MRI scan done.

byte

It'll be interesting to see what your rheumy says, and what they prescribe for long-term management of AS.

4068ac1elhodqr

By coincidence, a relative of mine was diagnosed recently with these two big words, and last week as I was clearing out the attic (of very old vinyl records and books), came across two separate old books (circa 1950's) that both focused on the health benefits of 'cyder vinegar (with honey)' for treating all types of arthritis as the only natural, longstanding and traditional cure.

Now if you go into any health store, you will see the re-emergence of these bottles of (usually organic) cyder vinegar. As cyder vinegar has also been popular recently with all the various diets trends in the media for aiding digestion and such.

Turns out there's plenty of blogs about it, and appears to work via the most basic of elementary chemistry.

That is - if you've too much acid in your system (and around bones) they will become inflamed and thus erode over time.
Vinegar (ideally mixed with water) creates the exact opposite of this, a natural alkaline environment in your system.

Of course persuading the lad, or indeed anyone to take a glass of hot water at night with 1 spoon of this vinegar and dash of honey mightn't be the easiest of tasks.

But wonder if this natural, traditional cure costing around just 40 notes (per year),
could be a much better alternative than getting the large pharmaceuticals companies rich?

Rob Thomas

sugarman wrote: »

Had the follow up yesterday and to say I felt robbed for the 'care and treatment' I received would be an understatement:mad:

I arrived in 20mins early and took a seat in the waiting room, there was 1 person before me. He arrived half an hour late and took in his first patient, no issue there. Until she came out literally 2mins later with a bewildered look on her face. I overheard her say on the phone that she was in/out, didnt listen to her or exam her, just wrote her a new prescription and charge €150 for the privilege.

My name was called out next. I went in and he was straight down to business, he checked my MRI & Bloods and confirmed I do have AS and that it should be 100% manageable. Great. He offered 1 treatment and 1 treatment only. A TNF Blocker, delivered by a weekly self injection. He gave little information about it and risks, other than its the most effective treatment. I thought maybe he'd suggest Vimovo or someother NSAID for a few weeks/months, monitor that and then try Steroids if that didnt work.. ad only THEN try TNF.

Anyway, I said whatever you think will help me the most. So I sheepishly agreed to try it. He then wrote me letters to have 4 different bloods done, chest xray to screen for TB and asked to get an STI screen done as everything has to be checked and come back negative before you take TNFs.

Upon doing some research on the drugs, the side affects seem to be a little off putting to say the least. Mainly thatll it turn my immune to ****. Not to mention the daunting task of self injecting on a weekly basis.

But yeah... After writing the letters he literally tried to usher me out the door and call in his next patient!

This is all new to me, and id like to have been more informed. More importantly physically examined.

Not only am I suffering with the key symptoms of AS the past month which include lower back / sacrum / hip, Knees & ancles etc.. but also a hell of a lot of pain in my groin, testicular region, appendix region and in both Kidneys.

I seen my own GP and hes clueless as to what it could be, he doesnt know all the in & outs of AS as its such a specialist area. He checked urine/bloods and ordered an Ultrasound which ill be getting next week just to be sure, as well as a referral the urologist.

He asked me to tell the rheumatologist about all these symptoms and if its related. He couldnt have seemed less interested and basically shrugged it off. I asked him could he atleast exam me, which he did. I asked if it was related to AS. 'Could be' , 'couldnt be' is what I got!:mad:

And that was it. Was less than 10mins in there overall for €150, came out with more questions than answers and im now unsure if I want to go down that treatment route. They also cost €15k a year, which even under the drug payment scheme is €144 a month also:(

Just a bit lost on all this, all whilst suffering severely from an AS flare up & all the secondary symptoms. So far this month ive missed 12 days of unpaid work and a holiday id planned months back.

Galway clinic??

byte

What TNF blocker were you prescribed?

I was on Humira, and now have started Cimzia. There was to be a nurse with me on Thursday to see I could manage jabbing myself, but I got a call that evening to say that it'd be the weekend. But I'd already injected myself at that stage!

All the TNF blockers have health risks, I believe. At this stage though, I would try anything. You could probably argue that any meds have a health risk to some degree. Anyway, I surely hope Cimzia works for me and soon. My mother is in her last days thanks to cancer, and I need to be as strong as I possibly can be. Being blunt, I'm having a very hard time now, and of course, stress doesn't help AS symptoms. I'm so fcuking fed up with it.

byte

Ah, having a bad day yesterday and generally pissed off with everything!

When I visit the rheumy, it can be similar - in and out in a short space of time. Flicked thru my records, agreed Humira didn't seem to work, and moved me to Cimzia. She was gonna prescribe Enbrel but then said she'd try Cimzia instead. Not fully sure why as it was a short chat.

Hopefully, you'll get word back soon, and onto whatever anti-TNF he has in plan for you. And that it'll work. Keep us informed!

I'm to start back work on Monday, if things stay as is, after 2 weeks off on "holidays" but dreading it! It's hard enough dealing with pain at home, worse when at work and dealing with the public - can't just turn and walk away to lie/sit down!

DubJJ

Byte- Sorry to hear your bad news, the last thing you need is the pain of your AS at the moment.
I'm the opposite to you and have changed from Cymzia to Humira, been 6 weeks now, and although I'm felling a bit better it hasn't been the dramatic improvement I was hoping for, the pens are a bit easier than the syringes though.

Sugarman- Regarding the pain around your groin and kidney areas, I had exactly the same and it was all related to the AS. Sometimes I felt like I'd been kicked in the balls and before I was diagnosed I thought I had a kidney infection at times. This all calmed down once I started the TNF treatment and now I mainly suffer with lower back, neck and shoulders.
I know the side affects from the the TNF inhibitors can seem a bit daunting at first but it really is the only long term treatment available to help prevent the AS progressing to the stage of fusion, so I believe it's worth the risk. I've had several colds and such since I've been on them and I haven't seen any major difference.
I've tried the cider vinegar treatment that one poster mentioned and it didn't make any difference at all except to upset my stomach (I also suffer from UC), it may work on some forms of arthritis but I think AS is a much more complicated affair.

Do you mind if I asked what clinic your with? I've had to use the public system at St Vincents and I have to admit the treatment has been fantastic other than the initial 3 months waiting to be seen

DubJJ

I know it seems like a waste of €130 but it's good to get these things checked out if only to reduce the stress, just because you've been diagnosed with AS it doesn't mean that there's nothing else wrong.
My pains in my groin almost felt muscular, as if I'd pulled something and both my sides were tender right up the back almost like a kidney infection but on both sides. At the time I wasn't taking any TNF inhibitors or NSAIDs due to stomach problems, since then I've started TNF treatment and I take anti-inflammatories everyday and these pains have calmed down.

As I said, I've been using the public system at St Vincents, but I do go private for certain procedures such as MRI's as this helps me avoid the long waiting lists in the public sector.
The costs do start to add up, especially when your paying out €144 every month for prescriptions, thank god we don't have to cover the total cost of the drugs. Don't forget you can claim 20% back for all medical treatment and prescriptions at the end of the year if they're not covered by insurance.

misstearheus

Just after seeing this on my Gumtree travels and thought of mentionning it on Boards. Am not in any way connected to the Provider/Host. Mods please remove if in-appropriate but just thought it might be a little bit of help if it is genuine and might bring a couple of bob with it! I know personally that there are some genuine Survey Groups in Ireland that are totally genuine and do compensate and pay out regularly, so ya never know, it might be worth a try if there's a few euro to be made out of it!

Paid Volunteer Healthcare Questionnaire on Gumtree Ireland.

byte

Fingers crossed that Enbrel will work out for you!

I had a few good days earlier this week, but it's going downhill again now. I don't think Cimzia is working either. I had rang the rheumy earlier this month when things were nearly unbearable, but I was fawned off with steroids til January.

I didn't touch the steroids though, as pain eased slightly. Kinda wary of taking steroids as apparently they're not good for you...

Caringbear92

Does anyone know if mild scoliosis can cause one to be considered 'unfit' for work in a pharmaceutical company as a QC analyst?

I just had a medical exam and was wondering if this would have caused me to fail it.

byte

I was with my rheumatologist on Tuesday. I had a lumbar spine MRI the week previous (that was hell!) and she went through the result briefly. There's a fair bit of growth on the vertebrae on the front part that faces my intestines. Was quite weird to see!

She said that it shows signs of inflammation not being very high. Cimzia did work to some extent, unlike Humira, so maybe that's why. Anyway, I've started Cosentyx as of this morning, to see if that'll be more beneficial. If it isn't, she said I will go back to Cimzia and go to a pain management specialist with perhaps injections into the spine. Sure hope Cosentyx is third time a charm, as I don't fancy spinal jabs!

byte

Good God, the pain is really kicking off again, getting worse daily. I'm sure it's because all Cimzia is out of my system now, confirming that was doing something towards the pain.

Have any of you changed jabs and had a period inbetween where pain got worse before it got better? I'm wondering if that's the case or just a very bad sign for Cosentyx. I know Cosentyx isn't an anti-TNF like the others, but attacks in a different way.

byte

Jesus! That's **** news to get, as if things for you weren't bad enough!

Did they really say it was the Enbrel that would have brought on MS?

byte

Ugh, you've been dealt a bad hand of cards there.

Have the docs suggested any meds to deal with the MS?

thisistough

sugarman wrote: »

Either very clever or a very bad idea. We'll see I suppose:(

With such a potentially risky course of treatment could it be a good idea to seek a second opinion from another neurologist? MRI reports/scans can just be faxed. It seems like if it turns out to have been a bad idea a lot of damage could have already been done?

Baileycoco2017

Hi All,

Just wondering if anybody here can recommend a homeopath in the Cork region that would specialise in Ankylosing Spondylitis. Enbrel is no longer an option. Serious side effects that are not worth it.

Thanks,

DubJJ

Just thought I'd give an update as it's been quite a while since I've posted.
After changing from Cimzea to Humira just over a year ago it's proved to be life changing. It took about 5 months for me to really start seeing the benefits but it has made such a difference it's unbelievable. The pain in my lower back, neck and shoulders has reduced dramatically, it has got to the stage where I don't require any other medication whereas before I was taking anti-inflammatories and strong painkillers (tramadol) several times a day just to get by.
It never completely disappears and I get the odd flare up but in general it's reduced enough to carry on living a normal life. I was starting to get increased symptoms a couple of days before my injection was due so they changed it from every 14 days to every 10 days and this seems to have done the trick.

So don't give up hope if they haven't found the right medication for you yet, just keep trying and if one of them eventually works it can make such a difference.

brettmirl

Hi all...hopping on this thread as I'm currently going through tests for AS.

Have had long term chronic back pain, but lately it's changed from lower to upper.

Had the MRIs, bloods, etc Waiting on results.

Been put on Arcoxia and a steroid to see how I get on. Also on Tramadol and Lyrica...so the brain fog is terrible!

Have had an issue with NSAIDs in the last year - long term Difene use has caused my blood pressure to rise, so have had to stay off those.

Currently seeing a Rheumatologist and hope to have results in the next week or two.

DubJJ

Hi Brettmiri,

Sorry to hear about your issues, hopefully you're on the right path to being diagnosed so that you can be put on the correct treatment for whatever condition it turns out to be. If it is AS I found getting diagnosed was the biggest hurdle, once you know what you're dealing with you can at least start to get your head around things and plan for the future. The important thing to remember is it isn't the end of the world (although it may feel like this at first) and with the right treatment life can continue very close to normal.
You don't say if you are using the public health system but if you are the one bit of advice I would give you is persistence, don't let them tell you they can't find anything conclusive and just keep pushing. I had to keep phoning my consultant several times a week to complain about the amount of pain I was in and I believe this helped in them taking me seriously as my MRI and bloods were classed as inconclusive.

Best of Luck!!!

byte

I'm back on Cimzia about 5 months now, after moving from it to Cosentyx about 3 months prior to that. That was a bad, BAD move, though at least it proved that Cimzia was at least doing something to help me. I'm now more or less back to the constant pain I have, which is apparently due to a lot of damage caused by wear, etc. and not specifically the AS, as inflammation is well down according to the MRI.

I've also now got a small golf ball lump below my throat where there is some fusion of chest bone with ribs. It does get sore from time to time, though not as bad as my lower back constantly is. I've been to see pain specialist nurse last week who was assessing me, ahead of finally getting to the pain specialist doctor. She thinks what may probably happen is injections in near the spine to numb the nerves etc. About another 6 months waiting time for that...

I was in Manorhamilton for a number of days in rehab, of which the hydrotherapy is probably the best thing I've physically tried so far. It's great! Wish I had my own hydro pool

Drugs wise, I'm still on 400mg Celecoxib, 8 Paracetamols and vitamin D and C.

Hope you get a diagnosis of some sort soon, brettmirl, as it's a nuisance not knowing what you have and being able to go on the path to try alleviating the issue.