paulbasel in reply to sparklyshazza3 years ago

Actually no. He is a board certified older rheumatologist who is very experienced. My son lives in the States and doctors there are so cautious these days for fear of being sued. Frequently, they order unnecessary tests just to cover their backsides. I'm not sure what his neutrophils are; I'll ask him.

sparklyshazza in reply to paulbasel3 years ago

no reason to stop toc unless he is not responding/side effects. His neuts can drop to 1 on this as this is accounted for with this drug. Lipids can be affected. But can be treated whilst on the meds.

Reply (0)Report

paulbasel in reply to sparklyshazza3 years ago

I'm not sure what you mean by " . . . this is accounted for with this drug." Isn't a neutrophil count of 1.0 serious?

Reply (0)Report

paulbasel in reply to dwsurquhart3 years ago

Many thanks. The plan is to lower the dosage if we can convince the doctor to keep him on the drug.

paulbasel in reply to Metal-legs3 years ago

Many thanks for your response and kind thoughts. He is on a monthly dose and I'll mention your suggestion to him. Perhaps a combination of a lower dose and delaying for some days or a week might help. I'll post the "solution" after he has been on the new regiment for a while. Again, thanks.

Metal-legs in reply to paulbasel3 years ago

Yes a combination of a lower dose and/or delaying infusion would be the best option to put forward to the consultant. There must be a way forward so your son can stay on this drug, that is helping him so much. Best of luck and keep us all updated.

Reply (0)Report

paulbasel in reply to Agoodlife3 years ago

I fully understand and appreciate your caution in using this drug. The description of Actemra as being a drug of "last resort" for moderate to severe RA clearly indicates that there are risks that one must consider. My son and his doctor are informed of these risks but none have occurred in the 2 1/2 years he has been taking the drug until this latest dip in his wbc count.

My purpose in asking current users their experience with lower wbc counts and how they have adjusted dosages and delaying infusions is because the doctor wants to stop the drug and look for alternatives. He has been on all of the alternatives up to the date he started Actemra and his life was filled with unimaginable pain even with high doses of prednisone in combination with other biologics that did not work. He believes that staying on the drug is worth the risks involved.

This drug has been available since 2010 and yet it took this physician 7 1/2 years to even try it for the worst case of RA he has ever seen and all the while knowing the failure of other medications he prescribed. I have urged my son in the past to seek out another rheumatologist but he was reluctant to start over after so many years with him. Doctors do not always give the best advice or treatment.

Agoodlife in reply to paulbasel3 years ago

Dear pb, Believe me I do understand your predicament😰The RA meds have such a variable effect on us depending on the nature of our disease as well as on how well we as individuals cope with them. Numerous pas go through an huge arsenal of meds without getting help whereas others have much better luck. Unfortunately doctors are still guessing as well as pas. Usually doctors do have more info and experience ( but not always as you say). The pas that however get help or shouldn’t try a specific med have to try to choose on the basis of all possible knowledge what to do and what risks to take.😓

Reply (0)Report