Flare ?

[Vonnie10]

Hi but of a dilemma I started rituximab in October but my gp added Butec patch in as the rtx was taking forever to kick rtx took till just after Xmas to work, the rtx or the patch gave me horrendous ocd and anxiety and for the last few weeks since stoping the Butec patch . I’m flaring up in pain it’s depressing the life out of me.. how do I figure out if I’ve failed with rtx or was the pain patch helping, very confusing got clinic on Tuesday, I would appreciate any input I’m allconfused .

[weathervane]

You have been having a bad time Vonnie , have you talked to the gp about it . I found it took several doses of rituximab before I found full benefits, i was actually more anxious before I started rituximab, with panic attacks at night and difficulty sleeping. Write down all your symptoms and when you experience them before your appointment and give the list to the rheumatologist. I hope you have a good appointment, best wishes 🌸

[Vonnie10 in reply to weathervane]

W tuesdayi see them pretty useless tho nothing is working for me it’s so stubborn... wish some magic pill worked.. had so many plus infusions list of drugs I’ve had.. not one as cut it..

[AgedCrone]

If you are only being treated by a GP I strongly suggest you speak to either your rheumatologist or the Biologic nurses who administer your infusions.

Most Gp's are not sufficiently knowledgable about Rtx to add/subtract further meds.

[Vonnie10 in reply to AgedCrone]

Ac obviously I have the rhem team looking after me pretty useless tho.. nothing works for me..

[AgedCrone in reply to Vonnie10]

It sounds as if you had half the pharmacy thrown at you?

Have you spoken to a prescribing pharmacist & discussed how long each drug has be tried & how long between stopping one drug & starting another?

Busy doctors sometimes don't go back over previous drugs.......might be worth a try?

[Vonnie10 in reply to AgedCrone]

The RA drugs they just keep saying try this and try that ..I don’t know I just keep trying it’s so stubborn I just feel like saying leave me alone.. we’re would I end up.. in agony again.. it’s a hard slog. I’ve never spoke to a pharmacist about the RA drugs doubt my local one would have a clue.. think it would need to be a pharmacist who deals with them.. on a daily basis. I shall keep trying I have no other option. Hate the disease I curse the day I was diagnosed.

[AgedCrone in reply to Vonnie10]

Well Ijust hope some of the drugs you have been prescribed have been some protection for your joints.

Let's be optimistic & the next time you see your theumynhevwill be more helpful ......take care.

AC

[3LittleBirds2]

Hi, That’s horrible for you! It’s good you’ve got the clinic on Tuesday as they hopefully will be able to tell you more and take bloods to look at your inflammation levels? For my first Rituximab infusion it took ages to kick in and then I only had a very brief respite but the second one lasted much longer! Hope you get some answers but it’s definitely a question for the professionals...have you look to see if anxiety is a side effect from any of these drugs. I know that I did get anxious with Rituximab but that was also because I wanted it to work, worried about it failing etc but that’s me not the drug. Good luck 😊

[Vonnie10]

I got really bad ocd the rituximab I spoke to the rhem nurse she says 1/10 suffer anxiety.. I have side effects of most of the drugs.. it’s like I’m never finding a RA drug to suit me it’s neverending one big huge circle and I keep going around and around.. all my innflamation went down no pain I was delighted thought I had found my cure.. my life was so much better..back to the old me.. could live with the ocd.. if it stopped my ra symptoms.. that lasted for 6 weeks at its best.. October I started I got relief just after new year.. two weeks ago it’s back to bit me in the bum... it’s just a huge let down again.. sorry for the moaning.. but I see lots on here doing so well.. I’m like we’re is my.. happy ever after.. hate this disease.. and I hate when people say I’ve got that in my finger it toe.. grates on me.. feel li,e saying F off you don’t know the half of it..

[3LittleBirds2 in reply to Vonnie10]

Hi Vonnie, please don’t apologise I get it..I feel the same at times it’s a VERY misunderstood condition, it’s that blasted Arthritis word!! It sounds like you had did have a good response to Rituximab all be it short, as I said I was the same it was only about 4/5 weeks relief but subsequent infusions have worked for longer. It’s swings and roundabout, it helps the RA but then there’s the potential for side effects..I get a lot of sinus/water infections with it. Hopefully you will get some helpful answers on Tuesday and find out if your inflammatory levels are high again, hang on in there for round 2 of Rituximab if you have it! Good luck and keep us updated xx

[JGBH]

Hi Vonnie10

I noticed you said in another post that Rituximab was helping and I have just come across this post which clearly indicates it’s not really working. So I am confused.

Have you contacted your rheumatologist and what did he/she suggest?

I am asking because I should start having infusions in March and I don’t think I will go ahead.

However I do need to change biologic as Enbrel is not controlling my RA anymore.

Do hope you can find some help.

[3LittleBirds2 in reply to JGBH]

Hi JGBH, you should definitely go ahead, I’ve had 4 cycles..Happy to answer any questions you may have about Rituximab or my experience of it?! I developed a drug phobia due to nothing working for me..but the last two cycles of Rituximab were great. Enbrel sadly was not enough for me as well! Good luck 😊

[JGBH in reply to 3LittleBirds2]

Hello

Thanks for your positive reply and so glad Rituximab is working for you.

However my rheumatologist has written to me to say I would get Truxima (a biosimilar of Rituximab) which has only been licensed 2 years ago and Truxima carries a black triangle warning like any drugs that is still being monitored because they don’t know what the long term side effects are and it doesn’t inspire confidence in me.

I was told it would be Rituximab first then got a letter to say it would be Truxima!

Some people have had a very tough time after the infusions, lasting up to 10/12 days, feeling Very I’ll, high temperature, chills, nausea, weakness, dizziness, headaches, night sweats, etc. Did you get any of these post infusions?

How long did it take to kick in and are you pain free and feeling much improvement?

Is there anything else you think might be helpful please let me know.

Many thanks again and all the best.

[3LittleBirds2 in reply to JGBH]

You’re welcome 😊. Are you in the UK, I’ve not heard of that drug before?

Rituximab is given in two infusions two weeks apart. On the first infusion I always get an allergic reaction as the infusion rate is increased, usually at about 70/120. It’s then stopped and I’m given a shot of antihistamine, after about 40 minutes I’m good to go again but slowly..this never happens on the second infusion. I’m given it at a slower rate and so it takes about 7 hours but I’d rather that than not have it.

I do feel wiped out for a couple of days afterwards and feel very tired for a couple of weeks. I had some issue with a racing heart but after an ECG it was put down to the steroid infusion. As I said I felt tired but after about 4 days couldn’t sleep but this all settles down after a while. I’ve had a few more sinus infections whilst on it also.

The first infusion took ages to kick in and then I only had a brief respite but the second and third infusions worked brilliantly for about a year! Bit more pain with this cycle but then I have damage that needs operating on, so the Rituximab won’t fix that. If you do a search on here, you will find lots of positive posts/comments about Rituximab.

I can understand your apprehension about a new drug especially as it’s not the one you thought you were having. Good luck and let us know how you get on! X

[weatherwax in reply to JGBH]

Hi JGBH, I am on Truxima and so far I have had no problems with it. I have had 2 cycles and as others have said the first one took ages to kick in and didn't last too long but the 2nd cycle kicked in faster and lasted longer and I am about to have my 3rd cycle starting in a few days so I am hopeful that it will be better still (I'm always optimistic!) In fact due to the steroid infusion given immediately before the Truxima I usually feel great for about three days til it wears off! The worst of the infusions for me is the boredom of a day spent at the hospital and I always make sure I take plenty to read and do.

The only way to find out how you would be is to try it. I was a bit anxious for the first one but I was suffering so much I would have tried anything. In the event everything was fine.

Good luck, all the best.

[Vonnie10]

It did work but I had issues ocd anxiety .. it worked for 6 weeks at the most is that controlled I doubt it. See Tuesday what they say.

[JGBH]

Hope you will find something that will help you.

Do you mean you got ocd and anxiety because of Rituximab?

[Vonnie10]

Hi..bird ..I got more than just ocd and anxiety from rtx infact I’ve been my gp this morning my stomachs wasn’t right I couldn’t even get to my rhem appointment on Tuesday I know what would have been said go your gp they never treat the other issues..so I’m been sent for a liver scan and a camera down.. a trade of for getting my joints right.. shouldn’t be the case I think..I’ve been in total agony for over a week but really had issues since after the holidays but unbearable this week.. hate the drugs they keep giving me to treat the RA.. sorriest day when I was given my diagnoses. Worst of it it’s trying to explain that RA isn’t just the run of the mil arthritis well not in my case.. nothing but issues since it started.