Domhem

I could have written this, I’ve been on it 14 weeks now, I’m on two other drugs too but I don’t feel pain free at all. My joints are swollen and some days are really hard. I had hoped to be off steroids by now but I’m not. Once this is over I’m going to speak to my rheumatologist as I believe I haven’t got the mix of drugs right yet. Are you on anything else? If not maybe they need to add something else in

Smithycat in reply to Domhem

Thanks for your message. I am also taking Methotrexate. I think that I too need a review after this. I also have to take a lot of painkillers so that I can sleep. Zapain and Amytriptyline which makes it difficult to wake up in the morning. I always have a ‘hangover.’

I was hoping that the Imraldi and Methotrexate would be effective so that I could reduce these. This makes me think that I am not on the right drug or combination of drugs.

I hope that you get the right drugs for you soon😀

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Domhem in reply to Smithycat

My sleep isn’t too bad even with my 3 year old climbing in the bed every night! The problem with autoimmune is if you don’t sleep it makes your symptoms worse so if you’re not sleeping then it’s a vicious circle, I feel for you. Only very small things but I find if I’m bad, which generally comes on in the evening I have a very hot bath with Epsom salts and drink a lot of water, dehydration I found makes my joints worse in the night. I’ve just started taking CBD oil too, but I’m only 10 days in so can’t really report on it’s efficacy yet! Definitely need to try and reduce the dependency on painkillers, I’ve reduced my NSAIDs a bit. Really hope you get the right mix, I think it’s trial and error. Good luck and I hope you feel better soon

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Boyznan

I started Imraldi in December and the same as you I found only a slight improvement. As fairly new to RA I thought is this the best I can expect. Had rheumatologist call a few weeks ago and was really surprised when she suggested changing so had my first injection of Benepali last week so fingers crossed.

Jacey15

It took 5 months to work in me. My consultant said if it reduces disease activity by either 60 or 40% (I can't remember which) its considered effective.

Silverpixie

I had 4 biologics before they found one that worked for me ( the 5th one tocilizumab) and that one took about 3 or 4 months to kick in. Some of the others worked immediately and then stopped working after a few weeks or months. Rituximab had no effect whatsoever. It is very frustrating as each drug is another 6+ months or they only give 70% relief (orencia - my rheumatologist thought she could do better!). It took 5 years for my rheumatologist to find tocilizumab and it has been life changing. There are lots of biologics out there which work on different parts of your immune system (my understanding) and so don't give up hope. Good luck, hope my experience helps.

Smithycat in reply to Silverpixie

Thanks for your message. It’s just hard because it is a slow process and I worry about the ongoing damage to my joints, especially my hands because they don’t work properly. I have limited strength and my dexterity is poor (thank goodness for predictive text).

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Bessieboo1

I’ve been on Imraldi since December 2018, I am finding now that it is only effective for a week at the most. I informed my new consultant in February but because it was my first appointment with her she didn’t want to change it. I telephoned the helpline in April for help but they said they couldn’t change my meds because of Covid-19 . I am tired, my hands, wrists, elbows and knees are so very sore. I am still working part time as a nurse in a hospital as my new GP practice won’t help me either!!!

Smithycat in reply to Bessieboo1

GP won’t get involved as they won’t tread on the consultants toes. Like you I am tired because I don’t sleep well because of the pain and the side effects of medication. Sometimes it feels like I have been run over by a bus as every joint in my body hurts. The most frustrating thing is that my hands don’t work properly. I have limited strength and poor dexterity. I know that they are under pressure at the moment but it’s hard to be sympathetic when you have these problems and can’t see when they might be resolved.

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Bessieboo1 in reply to Smithycat

So sorry that you are having similar problems to me, life can be very cruel at times. At the hospital I work in there is talks about getting more clinics up and running again albeit on a very small scale. I work in ophthalmology and we are starting more clinics in June following social distancing rules in the waiting areas. I am really struggling with everything right now so I am going to leave another message on our advice line and see if I can be seen. I hope you get some support soon as well. Xx

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Wobbies

In October last year, I started Imraldi and the effect was instant and miraculous. However, unfortunately the effect was short lived and after 3 months I was worse than when I had started on Imraldi. So, I was changed to Cimzia and have taken the first 3 loading doses but no change. Am just hoping that it will kick in as the info leaflet says that it can take 3 months. Such a shame as I was thrilled with the initial results from Imraldi, and am now having to rely on Meloxicam to make life bearable, much to my GP's concern. Keep going - if Imraldi doesn't work, there is something out there for all of us - the problem is finding it. At least that is what I comfort myself with.

Smithycat in reply to Wobbies

Thanks for your message. I hope that an effective treatment can be found it’s just hard that this is such a slow process especially with the current situation.

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Wobbies

Thanks Smithycat. I don't post on here very often as I feel like I am always moaning, but it is difficult being in constant pain for all of us. Take care and good luck.

Flipper12345yellow

Hi, sorry I'm not very informative as I'm new to ra myself.Does anyone know if your crp is below 5, so possibly no inflammation but your joints are still stiff and painful, can your joints still be suffering damage even though no inflammation showing up in the blood?

Thanks in advance