Rituximab infusions

gazrobbo

我有一个的利妥昔单抗大约6个月前,布鲁里溃疡t doesn't seem to work, keep having to go back on steroids, hands, wrists and feet keep swelling, just want to hear if anyone else has had rituximab infusions.

Ellen

Hi@gazrobbo

Hope this helps a bit:

Hi, I’ve been on Rituximab for 8 years - my saviour after all other drugs failed after three years each time. <\/p>

However, last time, my rheumatologist said it was fine to have the second dose after 13 days, rather than the recommended 14. This time, he wanted me to have it after only 12 days. At our hospital, it’s the junior doctor’s role to book my appt, admit me and do the pre-infusion checks and tests. When he rang me the second time (we had to postpone as I’m due my 4th Covid vaccine), I asked why the recommendation is to wait two weeks. He said my rheumatologist said 14 days is the guideline but that 12 days is fine. <\/p>

I said I felt I’d rather wait the full 2 weeks. As well as being immunosuppressed, I have no Covid antibodies and also have had a colonised lung infection for nearly two and a half years, which didn’t respond to any meds and meant I had sinus surgery 5 weeks ago (which has made symptoms worse, not better!). I also said that surely if there was no issue with fewer days between, it’s all be given as one infusion, as they wouldn’t use a hospital bed, nursing care and infusion on two separate days if they could do it in just one day. <\/p>

I’ve looked at Versus Arthritis, NRAS and BSR but can’t find an answer. Any ideas anyone, please? Incidentally, the junior doctor was very understanding of my concern and said of course he could book me in two weeks apart.<\/p>","bodyRaw":"[{\"insert\":\"Hi, I’ve been on Rituximab for 8 years - my saviour after all other drugs failed after three years each time. \\nHowever, last time, my rheumatologist said it was fine to have the second dose after 13 days, rather than the recommended 14. This time, he wanted me to have it after only 12 days. At our hospital, it’s the junior doctor’s role to book my appt, admit me and do the pre-infusion checks and tests. When he rang me the second time (we had to postpone as I’m due my 4th Covid vaccine), I asked why the recommendation is to wait two weeks. He said my rheumatologist said 14 days is the guideline but that 12 days is fine. \\nI said I felt I’d rather wait the full 2 weeks. As well as being immunosuppressed, I have no Covid antibodies and also have had a colonised lung infection for nearly two and a half years, which didn’t respond to any meds and meant I had sinus surgery 5 weeks ago (which has made symptoms worse, not better!). I also said that surely if there was no issue with fewer days between, it’s all be given as one infusion, as they wouldn’t use a hospital bed, nursing care and infusion on two separate days if they could do it in just one day. \\nI’ve looked at Versus Arthritis, NRAS and BSR but can’t find an answer. Any ideas anyone, please? Incidentally, the junior doctor was very understanding of my concern and said of course he could book me in two weeks apart. \\n\"}]","format":"rich","dateInserted":"2022-02-16T18:35:06+00:00","insertUser":{"userID":5312,"name":"louiseb","url":"https:\/\/community.versusarthritis.org\/profile\/louiseb","photoUrl":"https:\/\/w8.vanillicon.com\/v2\/8b5ee14bd23cb3e7c5d4c29f5f7c6959.svg","dateLastActive":"2022-03-01T11:10:39+00:00","banned":0,"punished":0,"private":false},"displayOptions":{"showUserLabel":false,"showCompactUserInfo":true,"showDiscussionLink":true,"showPostLink":true,"showCategoryLink":false,"renderFullContent":false,"expandByDefault":false},"url":"https:\/\/community.versusarthritis.org\/discussion\/56382\/rituximab","embedType":"quote","name":"Rituximab"}"> https://community.versusarthritis.org/discussion/56382/rituximab

I don't know whether@louisebis still posting she might respond to your post.

Do please let us know how you get on and very best of luck.

Ellen.

Bella59

Hi@gazrobboI am same as you had first and second infusion last November.I also have weekly Metojet pen 15 mg.I found no benefit from this will be seeing consultant in a few weeks time.It will be discussed whether to try rituximab again or try yet another med.Hoping something will work soon as had both hips replaced in the last eight months.I also on prednisolone 10 mgs at moment slowly reducing.Hope you get some answers soon.

.

gazrobbo

I'm due to see rheumatology on 27th, rixitamab not worked, I've been put on 20mg of prednisone for weeks ago and to lower it each week, everytime I get to 10mgs my hands come up like boxing gloves, this time round, my hips, knees and feet really painful. The pain in my shoulders and going down between my shoulder blades is like a hot poker, have taken tramadol, paracetamol and ibuprofen, but nothing touching the pain.