Nikki may need re-load

[nikkismom]

Re: Nikki may need re-load

It was the first week in April- I had to do it because I was going out of town and knew she would be stressed. I also knew I would have to do another when I returned, but have put it off until now because she is just now recovering from that stress. Going to the vet upsets her so much. At least she's only there for two hours.

[Roxee'sDad]

Re: Nikki may need re-load

Hi Sharon,

When her cortisol was 50, she felt fine except she was starving and drinking and peeing.She certainly had more energy. Wow, this is so hard!

Just wanted to let you know. When our Roxee was dx'd almost 3 years ago, we chose not to treat. She felt great, swimming, running chasing balls and the cat on occasion. She was fine except for the normal signs. Thirst, panting, huge appetite, stealing food and hair loss. I could live with that. I didn't know enough about this disease or syndrome.

Mid to end of last year, Roxee started losing her strength. By Nov, I had to carry her outside to do her business. BTW, we have a doggy door with 3 steps leading down to her doggy yard. Had to replace the steps with a ramp. Finally could not use the ramp anymore so then the carring her outside 6 to 10 times a day.

Then I found cc.net and learned so much and found out that her muscle Deterioration was due to the cortisol eating away at her muscle tissue thus making her weak. So weak in fact that we had to hold her up to pee and poop in December.

So what I am trying to say is yes, the higher cortisol was making her feel good until it started eating away at her skeletal muscles and she then went downhill quickly. If I hadn't found this site when I did, she would be at the rainbow bridge already. I just wanted her to have one more Christmas with us.

Today she is improving, but it continues to be confusing as we all try to tweak and improve treatment, continuously watching for signs of improvements or declines, looking for ways to make our pups life better. This is what we do and why you and I and the rest of us are here.

In yours and Nikki's case it might have been cortisol withdrawl but there really is a long term price to pay for that feel good feeling they are experiencing today.

All my best to you and your Nikki.
John (Roxee's Dad)

[Wylie's Mom]

Re: Nikki may need re-load

Great example, John!

Sharon,

If you want to hold off for a week or so to give Nikki more time to "recover", I don't see an issue with that (but, that's just my opinion). I did a mini-load on Wylie about 3 weeks ago, but I waited a week longer to do the (after mini-load) stim. He had a stim done 3 weeks previous, and I just wanted to give him an extra week longer before being a pin cushion again. They have a hard time finding his vein and he often develops a bruise afterward.

-Susy

[nikkismom]

Re: Nikki may need re-load

Thanks so much John and Susy. I have been treating since November and will continue to do so, but it is frustrating, to say the least.She's had one re-load already and we just can't seem to get control. I didn't mean to imply that I have any intention of giving up or not continuing with treatment.This forum has taught me so much! If we ever get on real maintenance I will be so happy! I will post results of her stim tomorrow when I get it.

[Squirt's Mom]

Re: Nikki may need re-load

Hi Sharon,

Sorry Nikki is still having problems getting control. Bless her heart and yours too!

Refresh my memory...has she been tested for Atypical? the UTK panel? If so, what were the results and is she being treated for it? If not, talk to your vet about adding some melatonin and lignans. If her Estradiol is elevated and being produced someplace other than the adrenals, this could be playing a role in her difficulties. Just a thought I managed to grab!

Hugs,
Leslie and the girls

[Wylie's Mom]

Re: Nikki may need re-load

And can you refresh our memory on how you re-loaded:

-stim results before reload
-maintenance dose before reload
-dosage for re-load & how many days
-stim results after reload
-maintenance dose after reload

-Susy

[nikkismom]

Re: Nikki may need re-load

Thanks, Leslie,she hasn't been tested for atypical because her cortisol in the beginning was post 50, although I suppose she could have hormone problems. I just printed out Dr. Felman's protocol about splitting doses of lyso into as many doses as possible, and I'll show it to her vet tomorrow when I take Nikki for her stim. She'll probably get really mad, but I feel like if the dose is split more,it can be more controlled.I know she will get mad, because when I asked about splitting the dose, she said it wouldn't make any difference, that all that matters is the total for the week. Oh, well, mad she will have to be!

[stardeb55]

Re: Nikki may need re-load

Sharon, as Susy has already mentioned, we need those reminders about loading dosages, especially. We, also need Nikki's current weight.

I respectfully disagree with your vet about max dosage for lyso. Dosage is based on 25-50 mg/kg body weight. Some pups do better at the higher end of that range, some at the lower end, but each pup is an individual. Harley recently dropped 1.4 lbs. for no apparent reason which bumped his maintenance dose over limits at 54 mg/kg, his GP vet cut the dose immediately. Yes, some dogs do ok with posts >5, but that is really the exception to the rule. Harley, who always seems to be the exception to the rule, has been running a post in the low 7's on his last 2 stims, & feels fine, totally symptom free. With his pre-existing gallbladder/GI tract issues & being 14, my GP vet does not want to attempt to take him lower, as long as he remains SYMPTOM-FREE, which is the key.

Debbie

PS- Dr. Feldman is probably the foremost authority in the world on Cushing's, & he has advocated splitting the maintenance dose into as many doses a possible during the week for a very long time. If you vet wants to argue with the expert, then, perhaps, you may need to consider getting another vet. When it comes to splitting the dose, Harley gets his 250 mg., split into 3 doses during the week.

[nikkismom]

Re: Nikki may need re-load

Sorry, Debbie, I always feel like I'm repeating myself and boring everyone! Nikki weighs 15 pounds and is currently taking 200mgs twice a week, which I know is too high. If her number comes back high, like I know it will, the vet wants to increase it even more after a reload. Nikki does not have symptoms like thirst or hunger but her legs are very weak and she moves really slowly and sleeps most of the time. She eats and drinks normally.

[stardeb55]

Re: Nikki may need re-load

Sharon, we also need the last loading dose when you did the last re-load. This is important, so we can offer input on what may be a more appropriate loading dose, if you do another re-load.

Debbie

[Wylie's Mom]

Re: Nikki may need re-load

Hi Sharon,

So, did you do a re-load or mini-load, or did you just keep increasing the maintenace dose? I don't recall...I only remember the orange dye thing.

-Susy
(Sorry...can't wait for a response...gotta go tend to Wylie.)

[nikkismom]

Re: Nikki may need re-load

Last loading was a "miniload", 200 twice a day for three days. Her acth after that was 4.7, I think, but my vet forgot about me, was gone for several days and by the time I started maintenance again at 200 twice a week it had gone up to 5.7.

[Truffa's Mom]

Re: Nikki may need re-load

Nikki, we will be praying for you. Let's hope that your vet listens to your mommy, because I totally agree with Debbie:

Dr. Feldman is probably the foremost authority in the world on Cushing's, & he has advocated splitting the maintenance dose into as many doses a possible during the week for a very long time. If you vet wants to argue with the expert, then, perhaps, you may need to consider getting another vet.

and you don't need to deal with more frustration around your baby's health.

And BTW you are not boring anyone.

Choco kisses flying your way.

Marcela & The Choco labs

[nikkismom]

Re: Nikki may need re-load

Good news for Nikki. Her post yesterday was 7.1 which the vet thinks is good for Nikki since it was 8.7 beginning of April with no change in meds.Seems really strange but I'll take it. She has agreed to letting me split doses into three/wk so maybe that will help some with stomach gurgling and GI upsets. She also said if I ever have to leave her again to have the caregiver give her 1/4 pred per day for stress.I should have done that.Anyway, I was really afraid to give her the printout from Dr. Feldman about splitting doses, but she was great about it, all things considered.I enclosed a note with it and was very careful with the wording. I said "please read this and see what you think. Since you said it makes no difference, maybe we could experiment with Nikki by splitting her doses and just see what happens." She actually asked me how many doses I would like to give per week. I think I'll try 3 for 3 months and see. So she will stay on 400/week for three months. I have learned that you cannot predict what that post number will be by the way they act. I was sure her number was high because she seems more energetic than she has for a while. Anyway, I am happy! Thanks for all the help! Sharon

[Roxee'sDad]

Re: Nikki may need re-load

Hi Sharon,

Great to hear the good news. Really great that you have a vet that is open to treatment options and gaining new experiences.

HAPPY FOR YOU AND NIKKI.

Keeping fingers and paws crossed for continued improvements.

Good job!

John (Roxee's Dad)