Ankylosing Spondylitis

[TraceyDevon]

I have ankylosing spondylitis. Im 54. Ive been offered Imraldi, Adalimumab injections but have reservations about some of the possible side effects Is there anyone that can tell me how they are getting on with this treatment or if they also were worried about using it Thank you

[Wobbies]

I was petrified of using it, but when I did, it almost instantly gave me my life back. Loved it and had no side effects. Unfortunately for me, it only lasted 3 months and have been trying different drugs ever since, but none work as well as imraldi did for those 3 months.

[TraceyDevon in reply to Wobbies]

Oh such a shame. Any idea why it only worked such a short time. I’m so afraid of all the possible bad side effects listed on the leaflet with the jabs. I’m so confused now and don’t know what to do for the best

[Wobbies in reply to TraceyDevon]

I developed a fungal infection and had to take a course of anti-fungals, so had to stop the imraldi. It did not work when I went back on it. My rheumy said that It does happen when people have to stop for some reason, Am now on my 2nd biologic again with no side effects but it is not working well, so happily would try another. The blurb and all the info that the nurses give you about biologics is scary and initially thought that I would get sepsis from a paper cut on my finger.🤣 Now I inject with gay abandon.

[helixhelix]

“Now I inject with gay abandon.“. Me too!!

I was worried about infections as I always have cuts and scrapes from gardening....but in nearly three years now I’ve not had anything.

Biologic with the MTX has given me a great quality of life.

[TraceyDevon in reply to helixhelix]

It’s reading about side effects like lupus, cancer ,MS and other nervous disorders that’s got me worried about starting the jabs. It’s good to hear success stories though 😁

[Marionfromhappydays in reply to TraceyDevon]

I read some of the research papers (specifically on etanercept biologic because that's the one I am on) and the incidence of cancer (lymphoma in particular) was something quite rare.

Now that's not to say it won't happen but people with uncontrolled inflammatory arthritis have a higher than normal incidence of lymphoma too so you'll find with this disease its a bit like being within a rock and a hard place.

MS they found cases where biologics expedited the condition but they *think* these patients had it or were very highly prone to having it and the biologic sped it up. This is why they ask if there is any family history of MS .Again the numbers of people this happened to weren't huge but they have to state it in the research.

I know exactly how you feel, in one way I couldn't wait to start these drugs and in the other I absolutely didn't want to take them but I had to keep telling myself doing nothing wasn't an option.

I was told that the most common "problems" with these drugs is infection, so UTIs , skin infections etc but to be warned is to be forearmed get prepared, I bought a thermometer and got to know i run at a certain temperature, I bought urine dipdticks so if I think I've got an UTI I can check myself. You will have regular blood check ups and realistically you will be far more closely monitored for any abnormality than you would be if you weren't on them.

I've been on them since January so far I've had 1 uti that was caught early and had 3 days of antibiotics and gastroenteritis (dont know if that was the biologic or my husbands cooking 😁). Personally I can live with this !

It's all about informed choices, everyone is different and everyone has different levels of what they are willing to except. My nan had RA and I saw what it did to her and I dont want this for me.

I was listening to a podcast where a consultant rheumatologist was relaying they are working on a vaccine to eliminate inflammatory arthritis and he truly believes it will happen so we might not be on then forever 👍

[helixhelix in reply to Marionfromhappydays]

Great reply....and yes I bought a thermometer too. Which remains unused! But I’m happy to have it.

All I’ve ever had is norovirus....due to my OHs fondness for oysters (yuck) and which he then passed on to me. But it was no worse than his and only last 2 days.

[Marionfromhappydays in reply to helixhelix]

Can't say I've ever fancied an oyster either 😁

[happytulip in reply to helixhelix]

It's nice to hear positive stories.

[SlothSandpit]

Hi Tracey. I've been on imraldi for my AS for two years now. Like you, I was really nervous and scared about starting it - especially with the potential side effects and being immunosuppressed. But it really has changed my life.

The healthcare team who came round to my home to help me do the first injection were fantastic and I told them how nervous I was. They couldn't have made the experience any nicer really. The injection itself does sting a bit but it's nothing really - I would test between your stomach and your legs to see which area hurts less for you. For me it's my thighs, so I alternative between those.

It has nearly eradicated the awful pain and muscle spasms I was having in my SI joints, I barely ever get the same issues that I was getting before starting imraldi. I am still struggling with other smaller joints but we're testing out other medications to get those sorted. In terms of side effects, the next day or two after injection I have less energy than usual but that is IT. I did get a bit of hair loss in the first year - but it wasn't hugely noticeable, it was just additional hair in the bath or on the floor. No huge chunks or anything.

My main tip would be to take it at night time, about an hour before you go to bed, because it makes me sleepy quite quickly. And make sure you take it out of the fridge a good while before so it can come to room temperature.

I would say I know how terrifying it is, but it's been recommended for a reason and it's always worth a try. If you don't get on with it, you can always stop or change to something else. I think the fear of my joints fusing from AS is greater and taking a biologic obviously prevents that process from happening. I don't mind being tired for a few days every fortnight to keep as much mobility as I can. I actually look forward to my injection days now because they do make a noticeable difference!

[CagneysMum]

I have rheumatoid arthritis and was struggling to be mobile but started adalimumab (amgevita) a year ago and it’s given me my life back. I’ve suffered no side effects that I’m aware of and so grateful to find something that works so well for me. I’ll continue using it as long as it works … and should it stop I’m sure there will be another equally successful biologic I can move on to.

Just to be clear this isn’t the only drug I take.I also use methotrexate and hydroxychloroquine.

[JulesCurrie]

How did you find out you had ankylosis good spondylitis? I have had back and pelvis pains which sounds like sciatica and now wondering if it could be something else have had it about 8 weeks and it’s not easing just taking more anti inflammatory medication and cocodamol ..

[TraceyDevon in reply to JulesCurrie]

I had lower back pain and some shooting pain in my legs for about a year. It was finally diagnosed after blood tests and an mri scan but I did have to really push at doctors to get a diagnosis and not just be given pills all the time!

[JulesCurrie in reply to TraceyDevon]

Interesting … I find I am better standing up . If I sit down for a time I struggle to get up and pain intensifies . thank you for your quick reply

[wilbertjellyfish]

I was on it for about 18 months in all. Definitely worked, got my pred down to 5mg….however consultant said that wasn’t good enough so changed it. I’m now on my 4th biologic, quite active disease and 10 mg pred. Just over a very bad flare and cellulitis…consultant does know about this.

However I did find it very painful to take in the legs, am told tummy is better.

[bertiewooste]

Hi there, I've been on Humira (Adalimumab) for about 9 months now for AS, with great results and no side effects as yet. I am not taking any other medication (see my profile for more detail). I see this post is 3 months old so you may be on it by now, good luck anyway