Hi 🤗 anyone have any ideas what the next steps may be ....seeing consultant next week as they think Imraldi is not working and that Methotrexate is making me too sick to continue...im also on Sulfasalazine but feel very anxious this time as really dont want to go back to the beginning -im sero positive so wondering how others have got on with next stage of meds ?
Any thoughts greatly received 🤗
Hi Sunshine-star5
I had Sulphasalazine then Methotrexate and Hydroxychloroquine, then Leflunomide. After that, we tried Adalimumab. (Ie Amgevita, biosimilar as is Imraldi.)
Now on infusions of Rituximab (Truxima brand). You have got through a few drugs in quite a short time but it is trial and error with still others to try; that’s what I tell myself too! It does get me down a bit, not knowing if disease will be controlled adequately and for how long, and enduring the between times of flares etc too.
Imraldi targets tnf ie T cells. These are classed as large cells. If targeting them fails with Imraldi, they might suggest a drug that targets B cells (eg Rituximab) or go on to JAK inhibitors which target ‘small’ cells.
There are still options. I hope pain levels are bearable. Your Rheumatology team should keep you informed and discuss anything that concerns you re drug therapies.
Hi Charisma, I am on Truxima too. Have had two infusions with no change yet. How are you doing on this med?
Hi Shalf, it’s the steroid that’s making me feel better at present, I think. Too soon for the Rituximab. But almost no side effects. Off out so won’t be responding for a few hours. 🙂
Hi Shalf.
Truxima started working for me after about 8 weeks and at its best at about 16 weeks. Consultant said it will work even better after the second cycle and he was correct.
Hi Lolabridge that's great news! It is a bit early for me too give a fair opinion of this drug. I guess when you are in pain, watching/feeling damage occur before your eyes and feeling your patience getting thin after all dmards and several biologics, the confidence in any drug starts to take its toll. I'm hopeful though and trying hard to remain positive. Your feedback helps alot!
Thank you x
Hi Shalf yes it's not nice when lots of drugs haven't worked well enough or not suited us. I know you've tried a lot, and I'm hoping truxima is the one that's right for you. Just wanted to say give it 8 weeks if possible, as same as Lolabridge it took that long for me. Then 2nd cycle 8 months later. Wishing you a great success x
Hey sunnyweek, just logged in and seen your message, thank you!
It's very encouraging what you write.
My Rheumy is excellent in her judgement and I trust her.
I will give it time. I don't know as yet when the next cycle will be however, I see her in two weeks time. Like others on early Rituximab it seems patience is the key. I hope it works well. I very much appreciate you and your valuable support.
Love Suzie xx
Hi Shalf, Sorry to hear no change / improvement with Rituximab for you.
Had first session of 2 Rituximab October and November 2019 , lying here today feeling totally unwell still - wrote to consultant , he replied saying not due 2nd session Rituximab yet , but seeing one of the team 9th March ( disappointed not seeing consultant as specialist nurses unable to prescribe something - anything to carry me through - and am so so desperate !
Blood test reveal deficient Vitamin B 12 ; but would this cause me feeling so utterly unwell - almost collapsed walking back to the car last week . Then question whether it’s cancer - at least I would know -
Continuing with Leflunomide 20 mgs daily , guess this also ineffective.
Going to write a further letter to consultant this afternoon
Aww Weymouth, this pains me to read. I'm so sad for the way you are feeling. There really should be more done in situations like this. Perhaps a nurse or doctor come out to house? We shouldn't have to wait in such circumstances. I collapsed outdoors following a steroid injection into my shoulder a few years ago, my blood sugar decreased rapidly it was very touch and go so I am petrified of steroids. It was later discovered the shoulder ' specialist ' administered far too much.
Can you perhaps go to A/E? Please don't suffer. Stay in touch xx
Hi Shalf , Thank you ; Already started letter to consultant ; asking him to write me up something to bridge the gap until 2 nd lot Rituximab infusion ( doesn’t give a date , perhaps April time ) ? As quoted in his letter “ likely to see nurse specialists “ Are they authorised to write out our prescriptions ? It’s my own fault ; when ringing Helpline I should specifically asked for appointment to see consultant . Yes ; shall stay in touch .
Don’t know if it will be helpful, but my brother-in-law collapsed twice at work and generally felt weak, after a visit to his GP and his bloods done he had almost depleted his vitamin B, she gave him a high dose tablet on prescription and this solved his problem. Has your GP suggested this? 🤗x
Very sorry to hear of your brother - in - law collapsing ; twice ! Was this the B12 vitamin he was deficient in ?
Having another blood test tomorrow morning, the nurse told me Vit B 12 deficiency is very common . GP appointment beginning March - Yes , desperate to know whether ra or Vit B 12 cause - see Holland and Barrett sell these . Many Thanks AngelMar
Yeah, totally depleted! GP gave a prescription ( you can’t buy this strength at shops ) and he was fine. Your nurse is right, not enough sunshine hours in this county over the winter, and we RA sufferers tend to stay indoors more. I always supplement with store brands from November till March. Did your nurse say how bad it was and mabey she could prescribe them. 🤗x
Hi AngelMar ,
No surgery rang me out of the blue at home , but didn’t say how bad it was , neither did the nurse say at last weeks blood test - so perhaps feeling utterly unwell for so long is due to Vit B 12 deficiently .. I’ll ask her again at tomorrow’s blood test and can she prescribe them Many Thanks Again - shall update you
Huge apology! It was vitamin D not B he lacked 🙈🙈🙈
Hi AngelMar, That’s fine honest , pleased he’s much better. Nurse advised not to buy Vit B 12 yet , see GP first . Keep you updated
Please do, thanks. 🤗x
Thank you for your reply 🤗 just the sort of reply i was looking for ,so i can be a bit more knowledgeable in my consultation - good luck with the Rituximab infusions im 🙏 they work for you 🤗thanks again.
Don’t worry there are plenty more Bio Similars, Biologic & other drugs you can be prescribed...but only your rheumatologist - who has your complete medical history - can decide which one would best be the one to prescribe now.
Sometimes it does take quite a while to find the regime that suits you and only you....I do know it seems like you are getting nowhere every time a drug doesn’t work ...it took me ages....but I think I got there in the end.
Before your rheumy appointment.....think about & make a note of how the Imraldi has made you feel different from before you took it.....that just might point the way for the next drug your rheumy chooses to prescribe.
Hope your next drug is a success.
Thank you for your reply....yes just want to have some clear ideas as i seem to be useless when sat in front of consultant 🤦♀️ Am taking husband and notes this time 😆
That’s the way to go....your Rheumy is not psychic....he needs to know how you feel!
Just imagine him sitting there in his Boxer shorts.....that will bring things into perspective..... And remember he does want to help you!
Love that will remember this for future consults!
Sulphasalazine worked well for me after initial diagnosis. Then my rheumy emigrated and I was deserted by his replacement. I became very anaemic and my poor GP panicked and stopped all my meds, put me on Pred and re-referred me to a different Rheumy. Was put on MTX and Leflunomide. stayed on that for 13 years when I stopped MTX while I had chemo. After cancer treatment i changed from seronegative to seropositive and developed Vasculitis, Osteoarthritis and Osteoporosis. Also have Sjogren's, Bronchiectasis and high BP. Now, 32 years later I'm taking Leflunomide 20mg daily for RA, and Pred 5mg daily along with MTX 7.5mg for Vasculitis with an assortment of meds for Bronch,BP, OA and OP.
Also had one double infusion of Rituximab for Vasc, and if my Vasculitis flares will have Truxima.
Woah ....bless you 🤗thats a lot to deal with thank you for reply.....hopefully things settle for you 🤗
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