Do I or don’t I

[TKLOVE]

First I would like to say how annoyed I am right now as I’ve just spent ages righting a post then I don’t know what happened just as I was about to press post my phone went back to the home page and I couldn’t find the post I wrote anywhere, so this is a short version of my original post,I have been debating if I should continue taking the cosentyx treatment for my arthritis, bcuz on the plus side it has made a definite improvement to the level of pain I experienced and it’s made a huge difference in regards to my mobility, and it is without a doubt the best arthritis treatment I’ve received in the 13 years since I was diagnosed,but on the downside I have been unwell virtually every month during the 14 months I’ve been taking it, I’ve had 1 virus after another , just in the past 3 months I’ve had tonsillitis last month and shingles the month b4 and Im suffering from tonsillitis again and a sinus infection as I speak, so after yet another trip to the doctors I am back on antibiotics, but unfortunately this means I can’t take my arthritis treatment until I finish taking them,, then bcuz of the delay in taking the arthritis treatment I will end up suffering from a severe flare up which will take at least a wk to settle down again, so I’m stuck in a vicious circle, so I have decided to ask my consultant to switch me back to the treatment I was taking previously , as I have decided I would rather suffer with more pain and a reduction in mobility , rather than feeling like death warmed up and continuously suffering from some type of virus or an infection of some sort, all I know is I can’t carry on like this any longer 🤢😢🙈😬😩💋

[Itsallinthehips]

Maybe there is something wrong with your tonsils or that area and I still triggered it and having them removed by going to see a nose ear and throat doctor would surely be better for you than not being able to move and being in a lot of pain?

What does your doctor say?

[TKLOVE in reply to Itsallinthehips]

It’s just my tonsillitis, nose, or throat, I’m also constantly getting stomach bugs, also conjunctivitis, etc etc also keep keep having allergic reaction to stuff I’ve tons of times before ,and many other symptoms, all the doctors say it Because of my compromised immune system and probably some of the symptoms are due to going’s Through The menopause, but I’m not convinced it’s just that causing all my symptoms y

[Itsallinthehips in reply to TKLOVE]

Just do as much research you can on everything before deciding to make yourself bedbound again I imagine you hated that to.

Is there nothing they can do for your immune system?

I hope you feel better soon x

[grace111 in reply to Itsallinthehips]

you could try staying of them for a few months and see if you still get all those symptoms that your getting now and then you will know for sure if its this medication your taking thats causing all those symptoms.

im sorry to hear of your suffering i can hear how awful it is as iv been ill myself but luckily at the moment im a lot better and thats all because iv almost stopped eating meat completely and i was a real meat eater most of the time. i had to have a new bile duct when i had gallstones as the stones started to grow into the bile duct. its called mirizzi's syndrome. please come back and let us know how your getting on. love and im wishing you well. grace xoxo

[TKLOVE in reply to grace111]

I’m so sorry to hear you have been struggling with your own health issues, glad to hear that your feeling a little better and I hope that you continue to improve and feel much better in time, I have considered what you suggested about coming off the treatments I’m on at the moment but my GP advised against me doing that as he said that the majority of the meds I take you can’t just stop taking and if I did it I could suffer serious repercussions and that I should discuss it with my consultant before doing anything 😬😩❤️

[TKLOVE in reply to Itsallinthehips]

I do try to do as much research as possible but many of the treatments are so new there isn’t a lot of information about the side effects of long term use , like all medications they have side effects ranging from common to rare but they effect everyone differently and so I’m sure there are many side effects that are not listed so it’s impossible to know if your symptoms are a result of the treatment or something else ,going to see your GP is a waste of time as almost all the GPS I’ve seen havnt even heard of the treatment my consultant has me on, even when I tell them they don’t even know how to spell it so I have to tell them and even then most of them can’t find any information about it on there system so I have to tell them to try the spondylitis webpage and the treatment information is on there, as far as treatments to help with the compromised immune system the treatments I’m prescribed are intended to reduce immunity as it attack’s and damages the soft tissues that protects the joints, what happens is the arthritis causes inflammation of the tissue around the joints which triggers the immune system which attack’s the inflamed tissue in the same way as it would an infection, so the answer to your question is no unfortunately, all of the treatments effect the immune system but none of the previous treatments have had such a severe impact on my health as much as this treatment has, I’ve had some type of illness every month the whole time I’ve been on it which is almost 16 months now 😱😬🙈😩👎🏻❤️

[Bananas5]

I did reply to your post about 6 months ago as my husband has AS but you didn't reply to me.

It is known that these injections cause infections within the tonsils and surrounding area. One of the side effects.

I do know my David would welcome them but they are quite expensive and as yet they won't agree to him having them/. He has many other conditions as well as AS.

Only you can decide whether to have them or not. Nothing is 100% effective and you have to decide, with consultant's help, whether to have less pain.

x

[TKLOVE in reply to Bananas5]

Am I so sorry that I didn’t reply to your previous reply , with my previously treatment I still was more prone to infections but I’ve never felt so ill as I do on this treatment, I really don’t know what to do for the best think I will give it a few more month and see what happens as there will be no point staying on it if I keep having to take antibiotics as you can’t take this treatment if your taking them which results in flare ups anyway x

[helixhelix]

What other biologic treatments have you tried? As perhaps one of the others would control your symptoms enough and not cause endless infections....all the biologic do make you more open to infections but it's quite individual so others may work better for you.

Presumably you do all you can to reduce the risk of infections, like washing your hands a lot, carrying anti bacterial gel forwhen you can't get to a sink, watching out for food safety, having a dental check up to make sure no gum infections and that sort of thing?

[TKLOVE in reply to helixhelix]

Tried several biologic treatments most of which didn’t help at all with my arthritis symptoms apart from embreil think that’s the manufactures brand name for it can’t remember the official name for it, but the was the only one that help with the arthritis symptoms and didn’t result in me suffering from constant infections, but my consultant wasn’t content with the results regarding the arthritis symptoms and decided to switch me to the treatment I’m currently taking even tho every time she has taken me off the enbreil to a different treatment my arthritis symptoms have been worse or it results in me developing other health issues and I end up back on embreil, I keep telling them I can live with the arthritis symptoms and pain but can’t cope with being sick all the time, oh and yes I do take as many precautions as I can to prevent getting infections or catching viruses 😬🙈😱 have decided to speak to my consultant at my next appointment about the possibility of coming off the cosentyx as I’m now suffering from an inflamed liver, a low thyroid and I’ve just been informed I have to see someone concerning diabetes prevention and that’s on top of suffering from a different infection or virus every month 😩😩😩

[hypercat54]

Hi I can't add to the great advice you have had expect to say that when you are doing a longer post it's a good idea to save it every 5-10 lines or so. If it then disappears you will only lose a small part of it. x

[TKLOVE in reply to hypercat54]

Thanks for your advice quite new to all this and didn’t know I could save stuff before posting it 👍🏻😊❤️