IV Steroid with first infusion of Rituximab .. I feel as stiff as ever. :-(

[Neonkitty59]

Hi All .. posted briefly about my first Rituximab last Tuesday. Seven days on and I had hoped the IV steroid (Prednisilone) I was given prior to commencing the Rituximab infusion would have given me a bit more relief than it has. I am still almost bed bound and so tired I am sleeping anything up to sixteen hours a day in two or three goes. My RA has been awful hence the switch to Rituximab and I had a five week period without a biologic after stopping Humira and before starting Rituximab, so know my body has been flaring. I just thought the steroid might have done more, given I had one in the buttock (Depo-Medrone ... 120mg I think) in early February which lasted well over a month despite my high inflammation/flare of the RA which I have had since February. Any idea why the steroid IV last week doesn't seem to have done much at all. Should it have done? Does the flush out drip render it less effective? Usually I respond so well to steroid injections whether in the buttock or joints. (I have Kenalog in the joints.) My biologics sister said my knees are so huge with inflammation I should also have a steroid injection in both after my second Rituximab infusuion on 15th. That is scheduled for 22nd. I know usually the injections I have to the joints relieve all over and hope this means I can move. My husband is having to do everything and go everywhere alone as I can't do much at all. No strength in the knees and legs. He has to take my hands and pull me up from bed/most seats. Not much energy in general but I have felt this coming since stopping Humira. It was doing something but nowhere near enough. Many thanks. Neonkitty x

[cathie]

So sorry to hear of this, esp because I've been through something similar. I've also had injection in knee and intra muscular. The knee one made things much worse, the other had no effect. Oral pred has helped a little.

It's hard to cope having to ask husband to do everything. I try to help by contributing to planning but were keeping going by hoping embrel will help, but that's not planned til end of month.

Apart from that I find distraction helps with pain and also meditation helps with negative thoughts. I use the resources on Oxford mindfulness centre which are quite helpful.

I hope things can improve for you, c

[Neonkitty59 in reply to cathie]

Thanks for your reply Cathie. My knee and joint injections have always had great results. Sorry to hear you didn't have success with your knee. I don't know why my consultants have never wanted to go down the oral steroids route? If this insanity doesn't stop I may have to ask about those, but see if I can hang on till the knees get done on 22nd. Can they still prescribe a low oral dose even if you have steroid injections to joints? I am very strong and determined having had RA for 19 years and tried all manner of distractions but when nearly every joint is siezing and screaming out it is hard. When I say I can't do something, my husband knows it is bad as otherwise I just usually stumble on. I did make dinner tonight but it wiped me out. Was in bed till 8pm then got up somehow to come down. Now can't sleep but going up shortly. Good luck for Enbrel. That can work quite quickly for some and did for me but not right for me. That's another post somewhere on NRAS!

[farm123]

!'m afraid I had the same when I had Rituximab last year I was hoping the IV steroid would improve things but it had no effect at all. As I was not doing well they upped the normal dose of steroid for both infusions but I never even got any of the normal side effects (flushed, not sleeping) that I get with joint injections/IM steroid and no improvement. I hope the Rituximab will kick in for you as it never did anything for me. Hopefully the IV plus knee injections later in the month will combine to bring you some relief - it is so horrible having to accept help and not be independent. Farm

[Neonkitty59 in reply to farm123]

Oh sorry to hear Rituximab didn't work. How long did you try for on it Did they stop after six months? I have just read a post further down and seems the infusion IV steroid isn't even as effrctive as the ones you get in the buttock whicn usually last me a month. I know it is to help the Rituximab infusion. I did arrive pretty much staggering at the hospital and two hours later could walk to the ladies witjhout wincing so it had a quick but shortlived effect for a day. Roll on Knee injections 22nd. My feelings are that my level of inflammation is too acute after stopping Humira (my wash out period was six weeks .. I had already had to stop Humira due to a cystoscopy and intended antibiotics to cover any infection that could arise. As all went well there no antibiotics needed so didn't need to miss that Humira!! ) so I am difficult to treat when I have gone out of control with it really. Also had a major flare two weeks ago when had to put my cat to sleep. Hope you have found something that works for you, Farm. Good luck.

[Hidden]

Hi there

I am on Ritux too - and when I asked about whether the steroid would help me feel better through managing the RA was told this was doubtful as like the anti-histamine and the Paracetomol they give you before the Ritux, it is to counteract any side effects of the main infusion ie has a different purpose. Stick with it hopefully the Ritux will gradually start working - it has done wonders for me

All the best

Skippy

[Neonkitty59 in reply to Hidden]

I am relieved to see that some of you have written that the IV steroid is not actually given joint relief (though wish it had done that as well of course) but primarily part of the med/infusuon process as I thought .. oh on .. first time a steroid hasn't worked for me. When I have them in the buttock I can feel it doing its magic by the time I am leaving the hospital and the next day for the joint ones. How long before your Rituximab kicked in Skippy? Thanks for your good wishes and hope.

[Hidden in reply to Neonkitty59]

I seem to respond fairly quickly but i know others take longer - so the month over which I am having the infusions I tend to feel really fatigued and not that good and then star to gradually improve. Afraid I can't really remember how long it took the first time as seems so long ago as just had about my eighth round of treatment but have to say changed my life during the months when it's working (and I think I am better other times than I was before). Hope it works for you. all the best

[Neonkitty59 in reply to Hidden]

Thank you so much for your positivity and help. Skippy. I think the antihistamine was worse than the infusion! I was gaga .. and couldn't stop falling asleep. Good to know you have felt such benefit.

[Hidden in reply to Neonkitty59]

Yes the antihistamine really knocks you out doesn't it - still the day then drifts by in a cloud of confusion so not so bad. I have a bit of a love-hate relationship with the infusion as I don't like the thought of it although it does work for me and I quite enjoy the day as there is a sense of camaraderie when you are all in there together. Hope it works out for you and now you know what to expect so it's not so bad.

[Neonkitty59 in reply to Hidden]

Not much camaraderie at mine ... room not set up that way but I was/am in so much in pain doubt I could have had much conversation. Nurses lovely and chatted to them. Fell asleep mostly but frustrating for being woken of course for the BP monitoring etc. Second one tomorrow.Glad it is working for you. The infusion was all straight forward no problems. Just very difficult out of control RA at the mo. My nurse was taken aback at my inability to walk. It has to get better.

[mille]

Hi, The steroid that is given along with the infusion, is as Skippy said, to counteract any side effects to the infusions, it will not help with the pain. Some people think the rituximab has started working more or less after they have been given the infusion but that is the effect of the steroid not the rituximab and it doesn't usually last much more than a day. It is not a long lasting steroid. It can take the rituximab quite a while to work so try and be patient, I know it is difficult, I actually waited a few months before it kicked in but some people get the benefit much quicker. You could always ask for another steroid to tide you over just now. I had to get a couple of jabs while waiting on it kicking in. x

[Neonkitty59 in reply to mille]

Thanks for your reassurance Millie .. having both knees done on 22nd. I have asked they don't leave me bedbound waiting for Rituximab to work and let me be covered by steroids. So far no one has ever prescribed oral ones. Thank you for your encouragement and glad to know it is working well for you. As I said to Skippy above, relieved that the infusion steroid wasn't supposed to he ore effect. Was given some mis-information by someone there that it would relieve my stiffness and swelling and could mean I didn't have to have my knees injected. You can see why I thought that it hadn't worked for me!! Glad to know your experiences thank you. xx

[petalnumber2]

Hello Julie, you really are having a very tough time aren't you. I don't know anything about Rituximab of course, but it seems to me that you have already been given some advice and personal experiences here, which I hope will give you some food for thought.

I'm not doing badly myself (cross all fingers & toes). I'm still on Enbrel injections with no side effects, but I have had a couple of flares during the 10 months on it and needed steroid injections both times, which I'm pleased to say worked well for me. However, I was very surprised to discover from my clinical nurse that anti-tnf therapy will not stop a flare.

Anyway, I really hope that Rituximab will do it's good deed for you and free you up from your bed and give a normal daily life back to you. Go with the flow my friend and take one day at a time, you are in my thoughts. Love June xx

[Neonkitty59 in reply to petalnumber2]

Thank you dear Petal. PM on its way to you this week. Haven't done too much typing apart from here. The comments have been most helpful indeed as we share our experiences and encourage and that is what it is all about. Thank you everyone. Long may Enbrel do its magic for you, Petal! It is odd when we hear it won't stop a flare! I was told that too. Speak soon. Hope your OH doing well. Have just been watching Sewing Bee on iplayer so off to bed soon. D@mn cold callers keep disturbing me during the day when trying to lie in or snooze. Time to mute the phone .. or them!!! Love Julie xx

[lisalockit]

Sorry to hear u are in so much pain, i had the second half of my rituximab a week ago and only got relief for a couple of days i too am struggling at present but resisting asking for steroids this time round as last round of ritux a year ago i was on oral prednisolone for a while so not really got an accurate idea of how well the ritux worked. If u are really struggling though i would ask consultant for some steroids just to see u through xxx

[Neonkitty59]

Hi Lisa ...I don't think oral steroids will happen with my upcoming knee shots being in 12 days. As I said above, the fact I had a six week wash out after Humira and starting Rituximab last week has meant I have worsened each week so I can expect to feel bad but haven't felt as bad as this. I know the steroids affect the inflammation readings of course, but can't they tell from the B cell information if Rituximab is working regardless of steroids? I will ask my biologics sister next week. I hope you have found general improvement since starting Rituximab? I think they would say no to oral ones for me. xxx

[farm123]

I did end up on oral steroids while on Rituximab. I had started them the month before as originally they wanted to try another drug but that was not approved as self inject as quickly as they were expecting and my symptoms were getting worse. The trouble with oral steroids is that they want the steroid out of your system when doing the drug assessment because of them masking the real result of the drug and they need to get the right answers to either continue funding or for changing to another drug. Unfortunately it does come down to box ticking even though they can see the trouble you are having.

For me I only had one cycle and after 6 months tried Tociluzimab but that affected white cells and now on Abatacept and although easier than last year still not keeping everything in check. Farm

[Neonkitty59]

I would have hoped they could still see the results of the Rituxi via other tests than the inflammation tests where oral steroids mask the result. Of course the shots do the very same in making the ESR/CRP show good reduction then it yoyos back to much higher. Maybe when I know exactly when my first assessment is ... which is I have been told after a month ... which would be mid May. However, my steroid shots in my knees on 22nd, will hamper a result/reading but without them I cannot function. Really not possible to do without them. The Rheumy and my GP can see that glaring them in the face. I am sorry you had to change so quickly off it and Tocilizumab not suitable either. I hope Abatercept holds it enough for you or you can find something better, Farm. I do know though from past meds, and having steroid shots when on them at first, that when Sulpha and MTX worked there was a different kind of feeling of progression. A feeling of wellbeing. My Rheumy is very much a what she can see person, as although the Humira was doing a bit of something and reduced ESR from 86 to 65 it wasn't enough and her examination of my joints was what she went by and my DAS. Thanks for all your help. it is really appreciated. You can never glean these things easily at the clinic. It's those folk that have RA and have their experiences who help so much. Julie x