Just received first infusion yesterday. It was a gruelling four and half hours. No reactions thus far. I feel battered today but yesterday was a very long day. I would love to here from anyone else taking this drug. My Angio CT turned up mediastinal/right hilar adenopathy. Just when I thought testing was done . I am sure grateful I have a good benefit package. It was 12,000. For initial doses.

20 Replies

  • Hi......Are you in the States or at least not in UK?

    I had my first two infusions of Retuximab here in the UK in October....the first one took around 8/9 hours & 2 weeks later the second took around 6 hours.

    It sounds as if you had a fast infusion......here they go slowly until they see how you react.....then speed it up if your reactions are OK.

    Maybe you could ask for a slower infusion next time & you might not feel so battered?

    During the first infusion I had a slight blip coming out in a rash & having a raised temperature...the RTX drip was stopped & I was given anti histamines & steroids into the infusion......then the RTX was continued with no further complications....but that is why it took so long.

    I was fine until the next infusion which went by with no problems.... a couple of days later I felt a bit flu-ey but nothing major & it passed in a few days & I have been fine ever since.

    I go for a check up in late January & if everything looks OK I will have two further infusions in April.

    I really don't know if it is the RTX effect that I have less pain as I had a Depo injection just before the first infusion & that may still be effective.

    All in all it's a better outcome than I expected & I can just hope it continues this way.

    Are you due a second infusion in two weeks, or is there a different system where you are?

    I do hope it all goes well for you.


  • I'm pretty sure Damaged lives in Canada AC.

  • Thanks nmh.....I thought it sounded as though D was in North America...I have a friend on RTX over there & she too says how expensive it is & even with good insurance cover the co-pays can be huge.

    We do have a moan about the NHS, but I know I certainly couldn't afford this treatment if I had to pay for it......medical insurance don't usually pay up......they site it as a permanent condition with no cure!

    Just what we want hear!


  • No! How can they? So anyone with a chronic condition with no known cure, & there are more than just two or three, could suddenly face their insurance not covering it? So what are people who find themselves facing a brick wall supposed to do, the whole reason for insurance is to pay for medication & surgical procedures surely?

  • Yes PMI will pay for something that needs surgery as long as the surgeon can advise that it is a proven procedure.. Med Ins doesn't cover experimental surgery... nor does it pay for drugs except when you are an inpatient, or if you need a cancer drug that has been approved, but is not available on the NHS.

    I don't know if they would cover something like a kidney transplant.

    They have "packages" with Codes. When I was having a sinus operation I was asked by the admitting clerk if I was having brain surgery as a chest X-ray was included in that "package".... But not in the sinus package...Go figure!

    I have just read a renewal letter for a UK Private Medical Insurance Company .....it said kidney disease needing dialysis would not be covered neither would any condition needing onward treatment with no prognosis of a cure....it actually said "if you are eligible you will need to have treatment on the nhs"

    I guess they solve the problem by raising the annual subscription to a level that is unsustainable for the patient.

    It's like car insurance ...even if an accident is not your fault it's cheaper for the Insco to pay up(possibly losing you your NCB) than to fight your claim for you.

    Like,they say 'Life happens, no one says it's fair!'

  • I absolutely agree with you...the NHS do tend to get a battering and they are in dire straits...but where would we be without them?!

  • I think I failed to clarify. My benefits pay 100% to date. MSP must also preapprove all Biologic and they contribute to the costs. I have been undergoing an endless aray of tests, specialists and drugs. I feel for my insurance company. It must be thousands of dollars. Even having contributed twenty years of premiums, I am no bargain rofl

  • I am Canadian. I live in Vancouver, BC. The next infusion is on the 22. I have been through four DMARD's and Humira and Orencia. The Orencia gave me Pityriasis Lynchnoids. An autoimmune disease but drug induced. I have been having heart palpitations and chest congestion.

  • So sorry you are feeling so low. I too live in the Lower mainland and I just assumed all our drugs are covered by Parmacare. Scary to think they arent.

  • Pharmacare does contribute but I am not sure how much. There is a program called joint effort. They will navigate the system for you. They contact insurance companies as well to coordinate benefits. These are run by pharmaceutical co.

  • Thanks for the information. I am with Blue Cross at the moment, but if I don't go back to work, then I will need this help.

  • I am really sorry to hear what a terrible time you are having.

    I think because RA/RD gets to the stage where we are in so much pain we accept drugs when we are not really in a mindset to make rational decisions.

    I'm sure we have all said when we are in a calm spell "No More.... I will just take pain killers" but then we deteriorate & feel so bad we take what drugs we are offered.

    I really hope things get better for you & that RTX turns out to be good for you.

    Let's hope 2017 is a good year for you....try to have a lovely Canadian Christmas.


  • They had me take 50mg of prednisone, benedryl and Tylenol prior to infusions. Although the inflammation has disappeared the deterioration of my joints rages on. I do not understand what my body is doing anymore. While not taking drugs my CRP is .5 even after three months. However, my feet, elbows and ankles all have started causing significant pain? The migraines are constant. The hips, shoulders knees all burn continuously. I am living in constant dread. If it is this bad now what will it be like when the inflammation returns?

  • Let's hope it doesn't return & one of the drugs does start to help you. It must be so,tiring having so many different symptoms.

    I thought I was on my way to getting to have a few months pain free, but I have just spent 5 hrs in A&E having tripped over in my bedroom & fractured my wrist & elbow.

    I now have an enormous cast on my arm...thank goodness it's my left arm & I'm right handed!

    What a boomin' nuisance.....just hope the nurse was correct when she said I should be out of plaster in 4-6 weeks as I'm off to the sun in 8 weeks......& I am going come hell, or high water...Olde Englishe Saying!

  • I fell off my bike in 2009. I broke my right wrist and two fingers on my left hand. It was dreadful. Such a minor fall , I was quite surprised I received fractures. But what a nuisance. We plan on Mazitland January 14. I am so looking forward to sunshine. A good way to survive these procedures lol we plan to renew our vows.

  • Where is Mazitland D?

    I have travelled quite a bit & have never heard of it? But if the sunshines there I'm sure It must be great......how long p ago did you make your first vows? I wish you a lovely day!

    My night has been "interesting" started off not being able to get my PJ top on over the HUGE Plaster on my arm.....searched for top with wide sleeves & settled on very expensive linen shirt ..but to hell with expensive & it won't be ironed every morning!

    Then the pillow I rested my arm on kept falling on the floor......so in the middle of the night I moved to the other side of the bed inc moving phone, radio,water,painkillers...get the picture?

    I am not a happy bunny....going back to fracture clinic tomorrow so got to find something presentable to wear that I can get off quickly when the orthopaedic surgeon decides if my elbow needs surgery.

    Then a trip to the ATM to get the £50 a day taxi fares to & from the hospital. The nearest bus stop is a 30 minute walk away & I can't face that tomorrow......but will have to soon or I won't have pennies for my Christmas bubbly!

    Be warned folks .....when you retire & move to the country.....work out what will happen when you can't drive!

  • I hear you. We have three adult children who still expect us to pick up the tab. My Birthday dinner was 400. My husband Gary's Birthday is on Sunday. It is a crazy time of year for us. His dad' s is Jan 3 and our son Mitchell is Jan 11th then our anniversary is January 18th. Mazatland is in Mexico. We did a cruise of Europe in 2014 and this was a left over week. It will cost less than a weekend locally. My body needs sunshine lol. We have had record rain fall this year.

  • How romantic !! Mazatland to renew your vows <3

    Enjoy yourself!

  • I'm in Scotland. Had my third infusion day before yesterday and am now waiting for the second of the pair. Here the whole thing takes about the same time from the beginning of the ritiximab but before you get a quick dose of piriton then some steroids and then ritiximab starts. If you have methotrexate it's faster I believe.

    I didn't drink much during the infusion and wish I had as I was very thirsty afterwards and had to pee a lot. The day afterwards my inflammation was down but this morning it's back up. I do find it's exhausting but mainly on the day of the infusion so I know now to go home and take it easy.

    I hope it works for you.

  • Hi I'm in the UK but my first treatment was july and had other two weeks later. My infusions were around 5 hours too. Felt really tired after but no side effects. It takes a while to feel the benefit I am just seeing improvements now in December. The changes are massive though and at the moment I can wear my boots that have 2inch heels. Ive not worn these boots for 2 years so was delighted that my feet and ankles have improved. So it is well worth the short lived after effects. My next appointment is Feb. Good luck and I hope it works well for you too.

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