Last day of pred

[Red]

It has been 1 year ago i started treatment cytox had 8 iv treatments 60mg pred alot of other drugs
now in remision 1 more 2 mg pred i feel confused ,glad,scared,i am now taking pill and knocking on wood.

[pberggren1]

It has been 1 year ago i started treatment cytox had 8 iv treatments 60mg pred alot of other drugs
now in remision 1 more 2 mg pred i feel confused ,glad,scared,i am now taking pill and knocking on wood.

Trust me, being off pred is awesome. Congrats!

[Dryhill]

Well done Red. I dream of that day but at least I am now down to 10mg a day so am on my way.

[Red]

I started my decline at 10 mg for 1 month to 7.5 month,5 -m,2.5 m, to 0

[Psyborg]

Congratulations, I'm sure it feels great to get the Pred monkey off your back :).

[KathyB]

Hi all -- had a great checkup yesterday! Infectious disease doc listened to my "normal" sounding lungs! Still on anti-fungal meds (VFend) for two more months & will need CT scan lungs at end of January to document additional healing. Rheumy has me starting 15mg prednisone through the holidays then begin 10mg by Jan 1 with blood tests in two- & four-week intervals to note results. PT is helping to keep me moving as I try to regain strength and stamina. The "fog" I feel is on random days, but the fatigue is steady most days. Rituxan regiment scheduled again for beginning of March (6 mos after initial 4-week treatment). So far, we are not scheduling maintenance meds outside of prednisone but will consider based on blood work results. Thankfully, my baseline bone density screening was normal! My other good news came from the result of having to repeat my mammogram after inconclusive results last week -- a small cyst needing only a follow-up ultrasound in 6 mos. Whew! I sure didn't need any more complications or issues. Lots of prayers of thanks!

I'm hopeful to stay well and continue with plans for holidays in FL with my hubby, sons, parents, and two siblings and their families. Maybe even get into the office a bit after Jan 1! I was excited to share some positive news!

[gurinbasra]

I'm now at almost 4 weeks done! Your gonna be just fine, just fine! I had to remind myself it's OK to not take the pred today or tomorrow or the day after . . . . .

[KathyB]

Sounds wonderful and something for which to hope! What has been your story so far? How are you doing?!

KB

[gurinbasra]

Sounds wonderful and something for which to hope! What has been your story so far? How are you doing?!

KB

I was diagnosed 4 years ago, more from hearing loss and sinus pain, was diagnosed within weeks however, lost the hearing in my left ear completely. Spent two years trying to get the WG under control first with just Mtx, then a year of cyclo, of course pred was at 60mg up and down, my right ear got worse, almost lost it. Then finally in 2009, had my first rtx infusion to which I responded. I was at 10mg of pred, tried to come off it last year but WG was still rumbling around my sinus area so took another infusion of rtx in Jan of this year and up'd the pred back to 10mg. So this year started the road back down the pred, was difficult at 7mg but now, here I am.

I know it all sounds nice now, but I've been on my death bed, I've had my bags of morphine and pills of percocet, and yet here I am - no more pain, normal bloodwork and at zero for the pred. The only thing I miss every waking moment is having peace in my head and my hearing!!! I have a lot of tinnitus (ringing in the ears), I wear a hearing aid on my right ear that has half hearing, but all this is not the same and I really, really miss it. I miss the social aspect, I miss the fact that my husband called me the other day to tell me the house alarm was on and I couldn't hear it, but he could clearly hear it - from his phone!!!!! Life has changed for all of us, but I'm here and glad to be functioning no matter the challenges.

You should be hopeful to stay healthy, you should be excited, it's great to hear that you are excited about the holidays - it's great to be worried about the normal things in life.
By the way, I have to have a repeat mammogram - the one for six months later! I'm just a "little bit" worried, but even though the mammogram was not normal the ultra sound was, I guess this is just a check to see if anything's changed. I'm not going to think about it too much, day at a time!

Thanks for asking Kathy
Take care and keep us posted with your progress
Gurinder

[KathyB]

Reading other WG stories is so helpful, Gurinder. Thanks for sharing. The unique aspects for each individual must make it a challenge for doctors, not to mention the patients. Seems as though most stories I've read here have a significant upper respiratory involvement. Although mine is minimal, I'm learning so much and paying close attention! It looks like my kidney function is remaining steady (1.7 creatinine) which is such good news! "Hope" is truly my new favorite word! Enjoy your day!

KB

[Geoff]

Congratulations and good luck for the future Red!!

[jola57]

It's great not having to take pred, I am looking forward to the day. Gurinder, your story could be mine, just add one year more and some lung and joint pain oh and no rtx, just plain old cyclo and mtx. I am still on mtx and just 3mg pred and hope to join you and Red in the no pred zone.

[BrianR]

[QUOTE=gurinbasra;51379] - it's great to be worried about the normal things in life.

Gurinder - there is a lot of meaning packed into this phrase of yours. 18 months ago, all the typical, worrisome "normal things in life" disappeared in a nano second when I got that phone call from Marta from her hospital bed. The initial diagnosis offered no hope. Then a revised diagnosis the following morning brought me back to the land of the living (Marta was dealing with the situation far better than I was I am ashamed to say). I think now I am much better at dealing with life's little issues and indeed, it is great to be "worried about the normal things in life".

[Al]

Reading other WG stories is so helpful, Gurinder. Thanks for sharing. The unique aspects for each individual must make it a challenge for doctors, not to mention the patients. Seems as though most stories I've read here have a significant upper respiratory involvement. Although mine is minimal, I'm learning so much and paying close attention! It looks like my kidney function is remaining steady (1.7 creatinine) which is such good news! "Hope" is truly my new favorite word! Enjoy your day!

Kathy, your choice of favorite words is a good one! Even better, of course, is hope built on realistic expectations. It is great that your kidney functions are stable! Like you, I have minimal upper airway involvement, which is something to be thankful for. Yes, we are all different. A challenge to the doctors? I suppose, but, hey, it's there business to be so challenged. For us, well, we have to take it more personally!

Al

[Al]

You should be hopeful to stay healthy, you should be excited, it's great to hear that you are excited about the holidays - it's great to be worried about the normal things in life.

Terrific words, Gurinder! "Worry" and "normal" take on a new glow in light of having been through what you've been through. Please let us know how how it all goes with you.

Al

[Al]

[QUOTE=gurinbasra;51379] - it's great to be worried about the normal things in life.

Gurinder - there is a lot of meaning packed into this phrase of yours. 18 months ago, all the typical, worrisome "normal things in life" disappeared in a nano second when I got that phone call from Marta from her hospital bed. The initial diagnosis offered no hope. Then a revised diagnosis the following morning brought me back to the land of the living (Marta was dealing with the situation far better than I was I am ashamed to say). I think now I am much better at dealing with life's little issues and indeed, it is great to be "worried about the normal things in life".

Funny how that works, Brian. It really is amazing how the sense of normality is hardly the absolute we, in previous lives, would have imagined it to be. It is cliché, of course, to say that these changes make us appreciate what is truly important. Cliché, but true. It is a different world now, yes. Yet, it remains that you have a terrific family that will change the universe.

Al