Swapped to Imraldi and already having problems

[rebs48]

I have been in immunological remission since starting Humira 15 years ago. I was moved to Imraldi recently by the Rheumatology team at Addenbrookes Hospital and told it was equally effective. Two weeks after my first injection and I have terrible aches and soreness. I am so upset as I had been in remission for so long and scared the RA is returning. Can I ask to go back to Humira?

[hatshepsut]

Yes....you just have to be firm. Sorry you're having these problems, hope you can return to humira soon.

[sweet-pea1]

Hi I changed from Humira to Imraldi a few months ago I have had no problems at all. In fact I find the new style injections far more user friendly especially for people with serious hand arthritis.

[Maggsie]

Yes you should insist on being put back on Humira, although you need to be aware that it may not be as effective as previously. There have been many posts on here regarding the problems when switching to biosimilars and back again.

[Troygirl]

Its all about the money!

Insist immediately to be put back on what has worked for you for 15 long years!

Why your Dr did that and caved to their Humira Drug Rep blows my mind!! Can anyone say kickback!!

[Jaybird]

Like yourself I have been on Humira for 12 years..felt great no problems but now on Imraldi after numerous injections I am having lots of problems especially at night and also developed diabetes 2 (not overweight or sugar addict) my doctor has asked Rheumatology for me to go back on Humira..no way ...costs involved !!!

[Paula-C]

I've read numerous post from people who have been doing well on an original anti tnf and when they've switched to a biosimilar things have gone pear shaped, lots have been put back on the original drug.

I was told I'd got to switch from Enbrel to a bio drug. I objected , typed up notes stating why, gave them to my specialist nurse who passed them on to my consultant and I haven't got to switch.

The savings per injection isn't really all that much. The following link is pricing for two injection.

bnf.nice.org.uk/medicinal-f...

[rebs48 in reply to Paula-C]

Thanks for this link. I am blaming myself for believing the specialist nurse at Addenbrookes rather than doing the research like I usually do. I felt so grateful to the NHS, I wanted to save them some money, but it wasn’t much anyway as it turns out.

[Paula-C in reply to rebs48]

They really shouldn't just switch you anyway without you agreeing. Most hospitals have not played fair regarding patients switching. I read on here that one lady was told that if she didn't switch she would be denying others the opportunity to go on anti tnfs, she cried buckets over this, I think it was emotional blackmail. From what I've learnt any money saved is going to be shared between the Hosital Trust and another group (can't remember what it is), it's not being put back into rheumatology.

A lot of people have been told it's exactly the same drug, it's not, I was told this by one of my specialist nurses during a telephone conversation, I had to stop her and correct her, telling her it's not, the clues in the name...bio*similar*. I think most hospitals just hoped people would just switch without a fuss...I wasn't one of those, I did research into the bio drugs and the more I found out made more determined to say NO I'm not switching.

Look at the last paragraph in the following link.

nice.org.uk/Media/Default/A...

[Nyreedw]

Yes you have every right. NICE guidelines state you can't be forced to change to biosimilars it has to be a joint decision. If you look at posts there are an awful lot not done well changing over. They are biosimilars not generic version so as it says similar not the same. Please fill the survey in and let NRAS know how it's been. I was told that I was due to change and I fought and gave logical reasons and I was allowed to stay on Humira. If they used the saving hundreds of pounds it is £71 per month cheaper. Humira is £704 for 2 injections Imraldi is £633 for 2. The additives in imraldi are unbelievable. All information is available on Google.

[KittyJ]

Yes you have every right. Others on here have said the same. If you put Imraldi into the search box you might find some other posts. Let us know how you get on.

[net2012]

I had a discussion with my Rheumatology team last December, and the agreement between myself and them was to stay on Humira. It is meant to be a joint decision between patient and medical team according to NICE.

Low and behold some 3 to 4 months later I received a letter from the hospital pharmacy saying I WAS going to be switched to Imraldi, on the other side of letter it said we would like to change patients. I rang my rheumy team and they advised me to ring pharmacy and I quoted to pharmacy that the decision to change should be one made through a clinical decision according to NICE and that agreement was to stay on Humira. My rheumy nurse also asked to receive from pharmacy an email detailing call.. The email read 'This patient does not understand she must change'.. All I can say was all hell was let loose lol. I am still on Humira. ps Humira was still on the list of drugs alongside the bio's being offered by the pharmacy.

[Bailybiscuit]

I go to Addenbrookes and I had to switch. I have been on Imraldi about 2 months. I seem to be in pain more. I asked my consultant if I could stay on Humira and he said that I couldn't and I could only go back on it if I had severe side effects.

[Girtonian in reply to Bailybiscuit]

I go to Addenbrookes and had to come off Humira for a small and totally successful breast cancer op last year. I was then told I couldn’t go back on it because of cancer risk. (I’ve looked this up, risk seems slight, although I did also have endometrial cancer, cured by a hysterectomy, 5 years ago). I have tried sulfasalazine and leflunomide but had bad side effects with both. I had some Humira left in my fridge and used my last 3 injections this summer and very soon felt fabulous again. I was on Humira for 17 years and felt so well I generally forgot I had RA. I miss it so much. I asked to see a different (female) consultant who was much more sympathetic but so far still says no. I can’t help thinking cost is an issue. Also following having the leftover Humira I was ‘in remission’ at the last appointment. If things get worse they say they may offer Rituximab, which apparently doesn’t carry the same risks, but also might not work in the same way. I am sorry to hear Imraldi isn’t so good. I think if they did agree to me having Humira again (at present seems unlikely) they would try to fob me off with Imraldi.

[Bailybiscuit]

I'm not sure if after all these weeks on Imraldi it is or isn't working. I may not be in as much pain, but I have a new boney growth on my knuckle and swollen knees. I see my rheumatologist in a couple of weeks so will see what he thinks.

[rebs48 in reply to Bailybiscuit]

Hope you get your meds sorted at your next appointment 🙂

[Bailybiscuit in reply to rebs48]

I hope so too. I usually come away thinking "What a waste of time" I think I'm no better but he thinks I am doing well and as expected .