Anyone offered Remicade

[watercolours]

Hi all, my rhumy wants me to get Remicade infusion to try to deal with my pain levels. He is frustrated (as am I) that nothing he's tried has dealt with it effectively, the last being lignocaine infusions which actually increased my pain levels. He has left my pred dose to me, as long as I stay under 10mg, but that dose just wasn't dealing with it so I increased up to 20mgs, and it helped, but not completely, pain is better but not gone. I also have Fibromylgia and osteoarthritis arthritis so obvs they must be the residual pain. I have chronic fatigue also so it's all very difficult to deal with constantly. He's now wants to try Remicade, which is essentially for rheumatoid arthritis, but he's hoping it'll work for me. You have the first dose, then one 2 weeks later, then 6 weeks later, then every 8 weeks, so it's a commitment, and really you've 3 doses before you can see a difference. I've read alot about it and it does have some serious side effects, which can continue up to a year and affect your liver. SO, I'm wondering if anyone here has been given Remicade and did it help, also any side effects, please and thank you

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you are in such a quandary, and it must be difficult to know what pain is attributed to what disease.

I see from previous post 6 months ago you had to go back up to 20mg...did that solve the problem then....and how have you reduced since then? Slowly enough to know what level kept things at bay, or were you rushed backed down to 10mg and then it all blew up again?

I appreciate your rheumy is trying to get you below 10mg , but if your illness won't let you, it wont let you. If other medication haven't help, not sure Remicade will either - is rheumy using it as a steroid sparer? as you say it is used in some forms or arthritis, but can't see it's used for OA, Fibromyalgia nor GCA.

Do you take any medication for Fibro or OA?

Is Actemra (Tocilizumab) available in Ireland? That may be a better option, although probably more expensive.

You may get more response re Remicade side effects on one of the arthritis forums on HU...

have a look at MY hub, top screen and search ...

[watercolours in reply to DorsetLady]

Thanks so much for getting back! I did go to 20mg and reduced over the 8 months, I think every 2nd day by 1mg to 15mg, took six months to get to 7.5, where I stayed, last week increased to 15mg which did work nicely, and then each day reduced by 1mg assessing pain levels, till 9mg, slightly more pain so stayed at 10mg since then. Today pain off the charts again so bk to 15mg, but I know I've been overdoing it, I've a very elderly dog who is in decline, she's an Old English, Golden Retriever cross, so not a small dog, shes become quite disabled which means lifting her, holding onto her as she walks but then staggers so pulls on my shoulder, we have a trolly type thing for her to move her gently from room to room, which I was pulling etc so I know why my pain has got worse. The 15mg hasn't even really hit it, but again it's prob more Fibro pain 🤷‍♀️ I've been on Actemra, again did nothing. I'm not sure rhumy using Remicade as steroid sparer, I think he feels he needs to prescribe something, my despair when I was with him last made him reach for anything he could think of, which I do appreciate but not at the expense of side effects which have the potential to make me worse in other ways! He did suggest Methotrexate to which I said I was afraid you were going to suggest that, really don't want to go that route, especially when I do still have PMR, the pain is different from Fibro so I can identify it, to which then he said I think you're going to be on them (steroids) forever, wow, that hit. I honestly don't think I'd mind getting to 5mg and staying there, but it's the fluctuation, which then knocks on to weight, which I'm VERY susceptible to putting on, I know sounds trite, but the arthritis in my knees, hips and feet, obviously gets worse. I'm in a pretty sorry state at the moment to be honest, and if I thought I could try the remicade without any side effects I'd go for it but you just never know. I've also gone off gluten, caffine, lactose, helped with tummy problems but overall not. I take painkillers for Fibro, cannabis oil, Etoflam gel, all only touch off it when like this. I'll try the other forums for their thoughts. Sorry for the long ramble but I do hugely appreciate your reply and thoughts🙏

[DorsetLady PMRGCAuk volunteer in reply to watercolours]

Hi again,

Your poor dog is obviously not making things easy for you...as you say not a light weight!

As you are now at 15mg, I think you need to give it time to work...with all the yo-yoing you've had, your body doesn't know which end is up!

So maybe a couple of weeks at least, and then reduce at least 2-weekly intervals, although monthly would be better.. I know that may not be possible, but in an ideal world!

If it is mainly PMR then really a slow taper is the only way, and yes I know your OA is getting worse (was in similar situation myself) - but sometimes you have to address the issue that's causing the most problem/pain.

Please let us know how you get on with Remicade if you decide to take it.

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

These may help.. or maybe could give you another contact re drug -

healthunlocked.com/arthriti...

healthunlocked.com/oa-action

[watercolours in reply to DorsetLady]

Yes you're right, I had been

[watercolours in reply to DorsetLady]

Yes, you are right, I have been messing about for a few weeks, I will stay at 15mg and see where it gets me. I'm pretty sure tho that my extra pain atm is Fibro, and obvs pred has no effect on that. Thank you for the links too, do appreciate it and your reply😊

[watercolours]

Hi thanks for you're reply but no, I've not been diagnosed with spondylitis, but with osteoarthritis, I've just had a dexa scan so waiting to see what that throws up😬 Thanks again for your reply

[PMRpro Ambassador]

It is an anti-TNF biologic and the 2015 Recommendations for the management of PMR specifically advise against them for PMR. Biologics are very specific in their action and there is little evidence that anti-TNF drugs work in PMR which is mainly due to the IL-6 cytokine. If they want to try a biologic - if tocilizumab or another IL-6 antagonist isn't working then it might suggest it isn't PMR at all.

[watercolours]

Really🤦‍♀️ wasn't aware of that, thanks for info!

[watercolours]

Thank you for your reply PMRpro, which I have to say has left me a bit stunned. NOTHING would make me happier than to discover that I don't have PMR, and that I can decrease and get off pred🎉 However, it doesn't answer the initial question of immediate pain relief on first taking pred, nor the subsequent flares which pred did deal with, nor the GCA I suffered within 6 months of PMR diagnosis! I'm very much taking on board that the 2015 Recommendations for the management of PMR specifically advise against anti-TNF biologic for PMR, and at the very least it has more cemented in my mind, not to go ahead with it, but I'm confused now and wonder if it's not PMR, then what could it be?!

[watercolours]

20-30mg for TWELVE years!!! That has given me chills🤦‍♀️ You've been through the mill haven't you, with your spine and knees and in general? It's great Actemra works so well for you and great you found something that did work, so why would your doctor want to move you on to Humira now? See I've tried Actemra and Embrel, both for 9 months and can't say there was any difference in that time! Also Lignocaine infusion made the pain worse, not sure how that can happen but it did! Taking remicade in general I guess doesn't bother me, it's the side effects that do, they're pretty severe, which I know I may not get but its definitely a worry! I've been on soooo many different meds, trying them all out, at this point I worry about my liver🙈 but yes, I'll think about it, first dose is 4th Nov, so not too long to change my mind. Thanks again for your thoughts and advice, very much appreciated!

[watercolours]

My apologies I haven't been diagnosed with IBD, but IBS, I think that was a brain fog moment or typo. That has been quiet good since I went on a wheat and gluten free diet, thankfully! I did have a lapse and boy oh boy, that was rough!! Anyway that's just clarification👍