Reducing prednisone

[Masha]

Hey y’all, since my last series of Rituxan ended a month ago my Rheumatologist said I could reduce my Prednisone to 5. Everything was going fine until I got to the 5. It was apparent the Wegeners was rearing its ugly head in my mouth. I have already experienced tooth loss because of this disease, but this was different. If I was chewing something it felt like I was biting into glass. Anything cold sent me into orbit. I upped the Prednisone to 7.5, and still have sensitivity to cold. As I was reducing this did not have any problem at 7.5. I am brushing with Sensodyne and that helps. I am scheduled to see my ENT who diagnosed me originally. He is a brilliant Harvard educated man who studied and knows this disease well.
Other than the mouth, after the last infusions, I feel stronger than I have in a long time. I am accomplishing things I have let go since sick. I am also getting out more and just seeing people, places and things help. But I am using good judgement and doing things in moderation. My Rheumatologist has scheduled me for another series of four infusions in the fall.
As we all know that darn prednisone blows your face up. The other day a lady complimented me by asking what my ‘no wrinkle’ secret was. Only your Wegeners friends know what that secret is.
Be Well.
Masha

[BenHornsby]

Hay Masha,

I know your pain, is it all of you teeth or just one or parts? when i get it its all of mine, but not for very long just a week or 2, it comes and goes as does the condition...

How long between your infusions?

I would always jump another step if i have issues like you, i would end up going back to 10 pred and then may drop when comfortable. My doctors have always said i am the best at knowing the dose (never normally take enough) and often use it like asthma patients. If i get a flare up i get put on 60 and then after a month start the very long weening process of around dropping 2.5 every week or every other week.

I do get the mind set of trying to get off the pred and all drugs asap every time i start them, but know after i perhaps should have taken my time or stayed on for a touch longer. I think I do it for two main reasons, on is i just dont like being on drugs and also to find out what level i need them.....

hahaa never looked at pred as the fountain of youth, but kinda is... its like free Botox

[BenHornsby]

Also might be worth reading this thred:

https://www.wegeners-granulomatosis.com/forum/threads/5719-Tapering-on-predizone


Hay Masha,

I know your pain, is it all of you teeth or just one or parts? when i get it its all of mine, but not for very long just a week or 2, it comes and goes as does the condition...

How long between your infusions?

I would always jump another step if i have issues like you, i would end up going back to 10 pred and then may drop when comfortable. My doctors have always said i am the best at knowing the dose (never normally take enough) and often use it like asthma patients. If i get a flare up i get put on 60 and then after a month start the very long weening process of around dropping 2.5 every week or every other week.

I do get the mind set of trying to get off the pred and all drugs asap every time i start them, but know after i perhaps should have taken my time or stayed on for a touch longer. I think I do it for two main reasons, on is i just dont like being on drugs and also to find out what level i need them.....

hahaa never looked at pred as the fountain of youth, but kinda is... its like free Botox

[drz]

Sonic Care has a tooth brush designed for sensitive teeth since it uses very little pressure and extra soft bristles and cleans partly with sonic sound waves. I notice that mine seems a lot more gentle than my old Sonic and my regular tooth brush.

[Masha]

Thanks for the reply. Yes, like yours it is the whole mouth, except where the implants are, since there are no nerves in those locations. I added another 1.5 Prednisone to the 7.5——Big Help. Like everyone else I hate to add more when I was hopeful to decrease. I am also using my SinuPulse daily, instead of three times a week. I figure the sinus is right where the mouth issues are. Yes, my toothbrush is Sonic Care, and I think the Sensodyne toothpaste helps.
I get my Rituxan infusions every six months, Rheumatologist would like to go to five months, checking insurance. So far I am lucky and having a good response to Rituxan. Also, per suggestion of another forum member, I am taking Mucinex.
All of these little tricks combined are working. My husband says that no matter how good the doctor, they would never have the answers to the variety of questions that all the members do.
Big Thanks Everyone
Masha