retuximab

[bigtfrancis]

I had 28 infusions with retuxinab back in 2008, about 2 years later , all my teeth detached from the nerves and had to be pulled as they were literally falling out. I was told by theoral surgeon that retuximab is what caused this. Anyone else have this outcome.thanks for any input

[Neonkittie17]

Sorry to hear if this. Do you mean 28 lots of Rituximab between 2008 to recently? (Over a period of 16 years?) I had Rtx for 8 years and my dentist thought it was the oral steroids I had for 10 months in 2015 resulting in several fillings needing replacement. (Also wasn’t sure if the steroid joint injections were also to blame. Have had several over the years but not too many the last 10 years.)

My dentist says just by having RA you are likely to experience more decay and gum issues and inflammation of the oral nerves. Immunotherapy is known to aggravate the gums and teeth so I’m not surprised you are saying what you are. I can’t decide if it was 10 months of steroids affecting me needing fillings but I can’t be sure. The dentist said long term use of oral steroids can cause tooth decay as they interfere with calcium absorption. Something I read a long ting ago.

[bigtfrancis in reply to Neonkittie17]

no over a span of 2 yrs

[Neonkittie17 in reply to bigtfrancis]

Rtx is normally only given every 6 months in the UK for RA, so if you had a duo of infusions every 6 months, that would be only 8?

[AgedCrone]

Goodness that does sound drastic…but can I ask…did you take Rtx for RA or for something else?

If you had 28 Rtx infusions….in the U.K. one is usually given 4 infusions per year for RA….that is 2 infusions at 2 week intervals, every 6 months …which would equal 7 years & take you to 2015?

I have been on Rtx since 2016 & have had roughly 24 infusions…& still have all my own teeth in reasonable condition…no clinician I have seen has ever mentioned that I should stop,& my dentist who I see every 6 months says my teeth are fine.

It will be interesting to hear if anybody else has had your unfortunate experience.

[bigtfrancis]

it was for ra they were 1 gram infusions ,14 rounds of 28 infusions over a 2 yr span i believe my memory serves me.

saranac lake ,ny

[Neonkittie17]

Hi, That still sounds excessive Rtx for RA. You’d be tested to see if your B cells were depleted still, surely before the next Rtx infusion(s)? You have to have been going every other month for Rtx? I’ve never heard of this so frequently for RA. Smaller quantities more frequently for other conditions, yes. I certainly don’t confess to know all about Rtx, but have become very knowledgeable over 8 years as I have an immunologist who helped me through my Rtx issues and gave/told me a lot of info on the med and it’s effects. So did my biologics rheumy.

Are you in the USA? Seems if so you are allowed more frequent Rtx as we’d not be allowed to have that here so often for RA in the UK and also Rtx could be deemed as not working well enough if needed sooner than 6 months or 5 at the most. It could also mean your immune system could become too depleted to the point of hypogammaglobulinemia.

[bigtfrancis]

maybe thats why my teeth setached,dr Handler was a highly respected dr before he retired, but at 14k a gram , i thought it was excessive, and not sure if i had any positive results, i still have the records drom hospital

[Neonkittie17 in reply to bigtfrancis]

Gosh, it is a lot you’ve had, and no wonder re your gums/teeth. 😑 I think you are in the USA, so very different to how it is prescribed on the NHS here re Rtx. I hope you have a new rheumy who can help you. I also hope you have found a successful alternative to Rtx.

[bigtfrancis in reply to Neonkittie17]

hat i found that works the best, is RSO rick simpson oil.find your dose and you will be amazed,been doing a daily dose since 2012, riding 10 miles a day lost 124 kbs, to this day ,in 2.5 yrs ive ridden 7100 miles on stationary bike at 10 miles 6 days a week.,yes i am in ny state

[Neonkittie17]

I’m doing fine on my biologic med and rheumy approved supplements here. Don’t know of your oil but we probably don’t have it here. Glad you are steady.