ACTREMA FOR GPA

[Oztrax]

I am concerned about this blood sugar rising with Prednisone issue, has anyone with GPA gone quickly onto Actrema? Say within week or 2 of starting treatment

[Oztrax]

OK I am thick, didn’t realise Actrema is the brand name for Toxcilizumab 🤥

[PMRpro]

Which have you got - GCA (giant cell arteritis) or GPA (Granulomatosis with polyangiitis) since you have posted on both this forum and the PMRGCA forum. They are different forms of vasculitis and have different treatments.

Actemra/tocilizumab is used in GCA - but is not the first line approach for GPA, they usually use rituximab and conventional immunosuppressants and only consider switching to Actemra if the patient had an allergic response to rituximab or their disease is refractory, This means it is used only rarely for GPA.

[Oztrax in reply to PMRpro]

PMRPRO dont have a positive diagnosis yet, may need a biopsy

[PMRpro in reply to Oztrax]

Then I suggest you stop confusing yourself with "what ifs" that may never be realised.

A biopsy may give you an answer for GPA - at this stage after a period on a moderately high dose of pred the biopsy for GCA is not likely to be particularly helpful. It is positive in under half of patients anyway and while a positive result is 100% certainty that it is GCA, a negative result does not mean it is NOT GCA for several reasons but including the fact GCA forms skip lesions and it may not be affecting the section of artery biopsied. The likelihood of a positive falls considerably with each week of pred and after some time the histological changes disappear as new cells replace the damaged ones.

You are asking random questions that are taking you round in circles and getting you more and more confused with each reply. I know it is easy to say, but try to sit back and leave the decision as to which you have to the experts who will then decide on the most appropriate treatment: rituximab probably for GPA, pred and possibly tocilizumab/Actemra for GCA. They are different illnesses with different management approaches, Until you know which - it is all theoretical at present.

[DorsetLady in reply to Oztrax]

For the record, totally agree with PMRpro’s comments… we know you want answers, but leave it to the professional to confirm what you actually have. Then you can ask pertinent questions, and get more realistic replies.

[Hidden]

i've been on weekly Actemra injections since Jan/24 and my blood sugar is fine (in mid-range). i'd suggest you cut out all sugar you can avoid.... period. we have NO choice now but to super help ourselves. and of course, checking it all with monthly blood work.

[Oztrax]

yes you folk are right, have researched all I can now