View Full Version : Treating Cushing's Myopathy
My dog has been diagnosed with Cushing's Myopathy. Unfortunately there's not much information as to protocols that have proven successful at treating this, because it is so rare.
Has anyone experienced this and does anyone have any suggestions as to how to treat this?
I understand that we need to treat the Cushing's first and then the Myopathy part as the Myopathy is a result of the Cushing's, but it's not clear which Cushing's treatment will be best for this kind of condition.
Any help or advice would be much appreciated.
Thanks!
Harley PoMMom
01-14-2012, 10:31 PM
Hi and welcome to our forum!
So glad you found us but so sorry for the circumstances that brought you here.
I have no experience with Myopathy but can provide some links that I hope are helpful:Q & A: Pseudomyotonia in Dogs with Cushing's Syndrome? (http://endocrinevet.blogspot.com/2011/02/q-pseudomyotonia-in-dogs-with-cushings.html) This link is from Dr Peterson's blog, Dr Peterson is a well known Cushing's expert.
This link is from a member's Thread with her dog dealing with Pseudomyotonia and Cushing's: http://www.k9cushings.com/forum/showthread.php?t=2541&highlight=Pseudomyotonia&page=5
Another article: http://www.vmsg.com/files/Case_Report_Canine_Hyuperadrenocorticism_and_Pseud omyotonia.pdf
Please know we will help in any way we can so do not hesitate to ask any and all questions.
Love and hugs,
Lori
Hi Lori,
Thanks so much for your quick reply and for sending all of this info. This actually matches her symtoms. I've contacted our vet to see if this could be an option.
Thanks again for your help and such useful info and for creating such a wonderful forum :)
Joel
hope all goes well, let us know how things go if you can
Thanks very much Skye, will keep you posted.
Hello!
touching base with you to see how things are going......did you found out if this was pituary or adrenal? or any ultrasounds or tests done? hope everything is okay.
Thanks for checking in. It's pituitary. We've done 3 ultrasounds, Urine Creatininine test and ACTH. Looks like we'll be starting with Trilistine next week, but the vet might want to repeat ACTH before doing so as she was last tested end of November, so he feels the test results are outdated.
so great to hear from you, been thinking of you all. What dosage is your vet suggesting they start out on? often times the dosage is to high.....i will try and post link and and MAKE SURE YOU ARE GIVEN PREDNISONE to have on hand for emergency. If they doctor tells you that you wont need it, please request at least tablet or 1/2 of tablet to have on hand.....Trilo stane is fast but short acting, normally given 2 times a day and needs to be given with food, so total dosage is split in 12 hours 1/2 and 1/2. Trilo blocks hormones, before you do this it is good idea to get hormone panel done so you have a baseline. I am not positive, and i will try and get someone to comment or help find links that will give you lots of info but often times dosage starts little high which is not good....better to start low and increase if needed. The mfg recommends dosage start at 30mg which is way to high say for dog that only weighs 20 pounds. Many have experience the hard way that the "recommended starting dosage" is to high.....you will have to watch behavior very carefully for a bit and be very aware of times given meds, watch for trembling, confusion, stumbling, fever, slowness, not eating, diarrhea, and some others. Will try and send someone your way to make sure info i am giving is correct and get you those links.
http://www.k9cushings.com/forum/showthread.php?t=185
this is very helpful and has more links to check as well.
Thanks so much Skye for all this useful info. We're seeing the vet in a few hours and I have printed all the info to show him. We're also meeting the internist and neurologist later this week, so will discuss all this with them too.
Our vet is keen to do another ACTH before starting Trilostane, just to be sure that things have not changed as the last test was done in November. The thing is, Jenny does not look like other Cushings dogs look and she has had it for a while. Her coat is good, she does not have a pot belly and her drinking is not extremely excessive - just somewhat and usually after eating, but not throughout the night and it has not gotten worse over the last year.
It's all a bit puzzling....
Thanks again,
Joel
Has anyone had success at using Melatonine to help treat Cushing's? There's a lot of info out there about it, but I don't know much about the results.
Would love to hear from anyone who has tried it.
Thank you.
Joel
lulusmom
01-23-2012, 10:25 PM
Hi Joel,
I've merged your two threads together so as to keep all of your information in one place.
With respect to your question, melatonin is prescribed for treatment of atypical cushing's and its efficacy is not that great. Atypical cushing's is diagnosed when adrenal hormones, other than cortisol, are elevated. If a dog has typical cushing's, the cortisol is elevated and in this case, it is highly unlikely that melatonin will be effective. As I recall, your dog has elevated cortisol. Melatonin is a rather benign supplement so there should be no danger in giving it a try. You can buy it at most health food and drug stores. Just make sure you buy the plain melatonin, not fast acting and no time released formula.
Glynda
she can test positive for cushings.....but what if it is a false positive? and if symptons are not severe enough to treat...........would it be better to wait until more sypmtoms become present? I believe that is what they normally recommend....is to wait and not start meds until more syptoms come about. hope to hear how things go.
***meds as in trilo or lyso
Cyn719
01-24-2012, 01:07 AM
Hi Joel
Welcome to the forum.
Just catching up on your thread. Are they going to do the ACTH? My penny had cushings for a long time before we put her on meds. She tested positive but still had a full coat , didn't drink much and didn't have increased appetite and didn't need to go to the bathroom often. After a few years she started losing her coat, drinking ten bowls of water a day , needed to go out often and was begging for food. Then we started her on trilo. So what Skye said is exactly what the vets say. Don't treat until there are symptoms. Maybe some vets approach it differently. My new IMS says she also waits for symptoms to treat.
Hi ,
My Zoe started on melatonin and lignans even though her cortisol was elevated. Her intermediate hormones were also elevated and her beginning Cushing symptoms were mostly hair/coat issues. Since she also had colitis I opted for melatonin and lignans to start until her colitis could get controlled and her Cushing symptoms worsened.
The melatonin and lignans did bring down her estradiol to normal after 3 months and dropped some of the other hormones but it did not even touch her cortisol.
After her colitis seemed well controlled, her cortisol went higher, more Cushings symptoms developed so we started Trilostane a year after diagnosis.
Gotta run,
addy
Squirt's Mom
01-25-2012, 11:06 AM
Hi Joel,
A belated welcome from me and mine to you and yours! :)
I know nothing about Myopathy so I have just been reading along. But I do have experience with melatonin.
My Squirt is Atypical and apparently her estradiol is produced outside her adrenal glands because the combination of melatonin and lignans had lowered that value back to normal range based on her latest UTK panel. She is also taking Lysodren on a maintenance schedule in addition to those two supplements.
Melatonin can lower cortisol, but it is not very effective in the face of Cushing's. Other than its use in treating Atypical Cushing's, melatonin is used primarily in humans to re-establish the diurnal cycle of wakefulness and sleep. Melatonin is produced naturally in the body, both human and canine, and serves several purposes - some not yet known. For example, they know that humans with Hydrocephalus have fewer number of melatonin receptors in their brains and that adding melatonin can sometimes help these individuals - they don't know why they have fewer receptors or exactly what the melatonin does to help them other than calming them and allowing them to rest better. I have a pup with hydrocephalus and I give some to him from time to time when he is having a particularly difficult period. Whether it could help with Myopathy, I cannot say. If you have an Apothecary in your area, I would talk to them. An Apothecary is a sort of expanded pharmacy in that they deal with compounding drugs, herbal drugs, etc., not just the mainstream pharmaceuticals found in Walgreens, RiteAid, etc. One apothecary I dealt with didn't handle conventional meds period. A conventional pharmacist may be able to answer your question about its use in Myopathy.
Keep your chin up and let us know what you learn from the vet!
Hugs,
Leslie and the gang
marie adams
01-25-2012, 02:19 PM
Hi Joel and Welcome!!!
So sorry for the reasons you are here, but everyone is a great help getting you info and links to help you not be so overwhelmed with Cushings.
I do not have any experience with Myopathy, but will be interested in learning about it with the rest of us.
My Maddie had so many symptoms by the time I figured out what she had that I chose to start her right away on meds--Lysodren because that is what my vet recommended at the time and was familiar with.
Take care!!! Please ask as many questions as you want, no matter what it is because someone will have experienced it along the way.
hey just stopping by to see how things are going
Thanks to all of you for your replies and your great support. For some reason, I didn't get notification that there were replied to this thread, even though I subscribed to it.
So, to update you, Jenny started last night (Wednesday) on Trilostane/Vetoryl. The Internist is starting her very slowly - 10mg twice per day (she's 56 lbs) and we'll do an ACTH after 14 days.
Her Myopathy became really bad today, to the extent that she hardly want so walk, but she starts to walk after a while.
Do any of you have experience at using herbal remedies while giving Trilostane? I have a few herbal Cushing's remedied that I'd like to give to her, so that she can get the extra support, but I'm afraid of there being any interactions with the Trilostane and also of the possibility of it canceling the Trilostane out.
The remedies that I have are:
Supraglan (http://www.petwellbeing.com/products/dog-adrenal-glands) which has Dandelion, Borage, Astragalus, Bistorte, Eleuthoro, Wild yam, Licorice.
Primalix CortiQuel (http://www.natural-wonder-pets.com/cushings-in-dogs.html) which has Dandelion, Apple Cider Vinegar, Rhodiola Root, Rehmannia Root, Alfalfa and Shiitake Mushroom.
And Chaste Tree Berry.
I would ideally like to have her on at least one, if not all of them, but have no idea if there will be a problem with this.
If anyone has experience or knowledge of this, please can you let me know.
Thanks again for all your help and advice.
Joel
Hi,
This is just my opinion but if you are starting to treat with Trilostane and add supplements to the mix in the beginning, if you would see any side effects from them you wont know which is which as far as cause. Do you know for example if any of these supplements may cause, water retention, increased thirst, tummy upset? Has your pup ever taken these supplements before? Could any of the ingredients possibly cause loose stools?
My Zoe was on a Chinese herb Shen Calmer. No one could tell me the ingredients or any possible side effects from them. Unless you are confident that your dog will not have side effects I would not add any supplements right now. If you do down the road, I would suggest adding them one at a time.
I know we tend to think herbs, etc are benign. That is not always the case.
hugs,
addy
lulusmom
01-27-2012, 09:55 AM
Hi Joel,
I wrote to many of the online companies with products claiming to be effective in treating cushing's and asked if they had done studies, the results of which supported their claims of efficacy. The manufacturer of Supraglan was one of them and as expected, they admitted to having done absolutely no clinical trials. Please see their response below:
RE: Supraglan
From: Pet Wellbeing - Customer Service (orders@petwellbeing.com)
Sent: Mon 5/11/09 6:47 PM
To: 'Glynda Pomerantz' (gpomerantz@hotmail.com)
Hi Glynda,
Unfortunately no scientific tests or trials have been conducted on this product to support the claims you inquired below about.
The items we offer on www.petwellbeing.com are not drugs or medicines, but rather all natural herbal alternatives. Please be aware that these products are not guaranteed to cure or treat all animals, as each individual animal and their situation's are different.
PetWellbeing Customer Service
1-877-633-2401
http://www.petwellbeing.com
It's really unfortunate that Petwellbeing and the other online companies don't feel compelled to tell the truth. I have not written to Primalix but I will and I'd bet my next paycheck that they are no different than the other chumps who hawk their snake oil. If there were any herbal supplements that were effective in treating cushing's, none of our dogs would be on Lysodren and Trilostane. Whether these products are safe or truly help when given in conjunction with conventional treatment, without proper testing, there is no way to know. I would recommend that you discuss these products with your vet.
marie adams
01-27-2012, 12:51 PM
Hi Joel,
I agree with Addy and Glynda about the herbs/natural rememdies--wait until you have the Trilo where it needs to be to start seeing results or side effects.
I used Lysodren for Maddie and it helped give her back a lot of her quality of life--no side effects. This is a journey....we all wished a natural way would have worked, but sometimes the conventional medicines are the only way. You will find there are some things that will help with the symptoms of the fur and skin--like flaxseed oil, but always ask your vet how they will interact with the medicines you give Jenny.
As you know the diet you give can make a difference also. I gave Maddie and I am giving Ella now a no grain diet. Ella is allergic to beef and chicken so that plays a part in the diet game. It is always something...
You are doing a great job and keep asking questions here at the forum--there is a wealth of knowledge here from all the members.
Take care!! :)
Thanks for all the advice. The problem is, the vets don't know enough about herbs to know which will interact with Trilo and which will not. They just say that nothing has been documented about this.
The fact is, she had been on Supraglan for a while and everything was under control nicely, then for the past few months she's been on Chaste Tree Berry, which also seemed to control the Cushing's symptoms. She's now been off everything for about a week and started Trilo on Wednesday and she's already having difficulty controlling her bladder and is drinking much more, so I think the herbs had been helping.
The problem is, it will take time to get the dosage right with Trilo and for it to start working and in the meantime, we're losing the built-up effect of the herbs, which usually takes a couple of months to start working.
lulusmom
01-27-2012, 02:58 PM
Hi Joel,
You can write to these companies yourself and ask them if it is safe to give their product as a supplemental or adjunct treatment to Vetoryl (Trilostane). Both sites have contact information.
I sent them both emails last night, but haven't heard back from them. I'm going to be speaking with a pharmacist today at at a pharmacy that does compounding and knows a lot about herbal remedies, to see if he has any input on this.
I expressed our concern to the Internist about the rate that Jenny's condition is deteriorating and she said that we can do the first ACTH recheck after 1 week instead of 2 weeks, so that we can move her quicker onto a higher dose of Trilo.
The initial dose is really low (only 20mg per day, versus the manufacturer's recommended starting dose of 120mg per day), so I think it will be fine to increase her dosage already after 1 week.
Would you agree?
Thanks,
Joel
The initial dose is really low (only 20mg per day, versus the manufacturer's recommended starting dose of 120mg per day), so I think it will be fine to increase her dosage already after 1 week.
We tend to have a motto of start low, increase slow when it comes to Trilostane. How much does your pup weigh? We see alot of dogs with side effects at the higher doses and then end up on lower doses anyway. Most of us try to start at 1mg per pound which is what our old friend Dr. Allen from Dechra used to advise before he retired. My Zoe was 18 pounds and started at 10mgs SID because she also had colitis.
There is an update on the Dechra website. The link maybe in our Resource section. I'll go take a look.
[QUOTE]The fact is, she had been on Supraglan for a while and everything was under control nicely, then for the past few months she's been on Chaste Tree Berry, which also seemed to control the Cushing's symptoms
Just curious, if you felt your pup's symptoms were well controlled, why did you start Trilostane? Sorry, did I miss it on your first post?
hang in there,
addy
She weighs 56 lbs - about 27kg and she's currently taking 20mg of Trilo per day (split into 2 x 10mg doses). The protocol that's being followed is the UC-Davis protocol, which recommends 1mg/kg per day, which is 0.5mg per pound.
Her Cushing's symptoms were controlled well with Supraglan in that her urination was under control, drinking had decreased and her coat improved, but the size of her adrenals remained large (checked with ultrasound), her blood an urine cortisol creatinine remained high (spiked even higher) and her ACTH stem came showed very high cortisol levels. Also, her myopathy worsened.
I just got Relora for her, which I'll be giving with the Trilo as this is supposed to help lower cortisol too. I also spoke with the people that sell Supraglan today and they told me that there are many dogs using both Trilo and Supraglan together as Supraglan is a good support.
We also met with the neurologist again today. At this clinic, he and the Internist have seen 3 cases of Cushing's Myopathy - despite it being so rare. He prescribe Procainamid for the Myopathy to try and and reduce her muscle rigidity. We'll probably start her on that in a few days - I just don't want to introduce too much at once, to see if there are any side effects from what she's on and to know what is causing what effect.
labblab
01-28-2012, 08:01 AM
Joel, I'm going to throw in my two cents, as well :o. But I am going to be very blunt and strongly encourage you NOT to add Relora into the mix right now. Trilostane is extremely effective at lowering cortisol, proven by years of clinical trials and scientific studies. You do not need to add in another agent, and may be creating problems by doing so. It can take time to arrive at the proper therapeutic dose of trilostane, and a very important part of the monitoring process is by observing changes in appetite, thirst and urination. I just Googled Relora and see that it is marketed for humans as a product for weight loss/appetite suppression. YIKES! :eek: Appetite is one of the most important features for gauging the efffectiveness of trilostane and also making sure that your dog is not being overdosed on the drug. So if you muddy the waters with a product like Relora, you have no idea whether observed changes are a result of the trilo or the supplement.
Having lived through the desperation, myself, of wanting to see my baby quickly improve, I think I understand why you are so anxious to try anything that might help. But right now -- when you are starting the trilo -- is definitely not the time to be adding in anything other than what your vet has prescribed. It is really, REALLY important to be able to judge what the trilo is doing in terms of symptom relief. So I do believe the best thing you can do is hang in there and give it a chance.
I do agree that Jenny is on a very low dose of trilo, and may very well need a significant increase. If you've seen no improvement in a week, I wouldn't hesitate to increase the dose. In honesty, I'd probably do so even without an ACTH test since the dose she's been on is so far below the lowest starting level recommended by Dechra (1 mg. per pound as Addy has noted). I know that UC Davis is very conservative in their recommendation. But I think there is a trade-off -- owners can become quickly discouraged at a lack of early results. If you want to test now, of course the ACTH is the "gold standard" for monitoring testing. But one other option after a week might be to just check Jenny's resting cortisol. As long as it is well within a normal range (you definitely want it to be above 1.45 ug/dl), you might feel more comfortable about a dosage increase, with a full ACTH two weeks thereafter.
Just a few thoughts to throw out there. But as I say, I truly would hold off on the Relora. And if it were me, I'd also withhold the Supraglan, too, right now while you're trying to arrive at Jenny's optimal trilostane dose. And trust me, once you get there, you can see positive results very quickly.
Marianne
lulusmom
01-28-2012, 11:21 AM
Her Cushing's symptoms were controlled well with Supraglan in that her urination was under control, drinking had decreased and her coat improved, but the size of her adrenals remained large (checked with ultrasound), her blood an urine cortisol creatinine remained high (spiked even higher) and her ACTH stem came showed very high cortisol levels. Also, her myopathy worsened.
Joel, can you please post the actual results for the UC:CR, the acth stim test and any recent blood chemistry? With respect to blood chemistry, you need only post the abnormal (high and low) values and please include the normal reference ranges. It would also be great if you could post the actual ultrasound findings.
I would like to echo everything Marianne has told you. I have two cushdogs and both have treated with Trilostane. It is very effective in lowering cortisol levels so additional supplements are not only not necessary, as Marianne has explained, they can complicate matters. My dogs' cortisol was effectively controlled, including bringing liver enzymes down to normal levels. No supplements were necessary; however, some dogs can continue to have elevated liver enzymes, specifically, ALKP (alkaline phosphatase) so some members do give their dogs liver support in the way of milk thistle and/or SAMe. No matter what you add to your dog's treatment regimen, make sure you discuss it fully with your vet.
Relora is not for treatment of cushing's nor has it been tested as such. No testing has been done on dogs and the only mention of testing I was able to find involved humans under a lot of stress. These were a few two week studies, which is a woefully inadequate amount of time to determine long term safety. Testing was limited to watching appetites and measuring cortisol with a saliva swab in the morning which also woefully inadequate methods for purposes of establishing proof of safety and efficacy for treatment of cushing's in humans or dogs.
We do understand the frustrations and anxiety that comes with cushing's and we also understand the urgency you feel to make your dog better. The most effective and safest way to improve our dogs' quality of life is to learn everything we can about the disease and whatever treatment we and our vets choose for our dogs. We have some terrific reference material in our Helpful Resources section and I heartily recommend that you take a look at the thread for Vetoryl (Trilostane) so that you understand a bit more about how it works, what adverse reactions to watch for and how to properly monitor treatment. Treatment is more readily facilitated, safely and effectively, if we work as a team with our vets.
http://www.k9cushings.com/forum/showthread.php?t=185
Looking forward to seeing those test results.
Glynda
Squirt's Mom
01-28-2012, 02:21 PM
Hi Joel,
I, for one, am all for the use of neutracuticals, herbs, and other alternative treatments for our babies in MOST situations. However, as has been said, herbs are not benign substances - they are drugs in their own right and need to be treated as such. In that light, I cannot trust anyone who is making money off of a product to tell me the truth about that product - their goal is money, period.
So, I look to the experts in these areas - vets (medical professionals not marketing professionals ;)) who treat Holistically. One of the best, IMHO, is Dr. Susan G. Wynn. She is located in GA, with Georgia Veterinary Specialists. While that may not be a feasible drive :p, contacting her is definitely worth a shot. If she cannot help you directly, and she may not if she can't see your baby, then she may can tell you someone in your area that she would recommend.
Hugs,
Leslie and the gang
Leslie, thanks very much for letting me know about Dr Wynn. I will try contact her.
Supraglan doesn't work at lowering cortisol, so I thought it could help support her, but have taken her off this for now.
Last night, Jenny started breathing strangely during the night, but then it normalized. How do I know if she has a blood clot? I believe this is not uncommon with Cushing's.
Glynda, here are the results of her tests:
ALK Phos: 403 (with this lab the normal range is 13-289)
Cortisol/Creatinine Ratio: 2.08X10(-4) - test taken in March 2011
Ratio for normal dog is < 2.9 x 10-6. Ratios typically seen in dogs with Cushing's disease are > 1.1 x 10-4
ACTH:
Cortisol Pre ACTH: 83.7
Post ACTH: 980
> 650 = Cushings
How does this compare with what you've seen?
Thanks,
Joel
I have an interesting update...
So, Jenny has been on Vetoryl for 1 week, taking 20mg per day (2 x 10mg), which is way below the recommended starting dosage for her weight (she weights 56 pounds).
We had an ACTH test done today and her post ACTH has come right down to 300. Her previous post ACTH was 980.
The internist said that this is actually now the kind of levels that they see on dogs that are not Cushinoid. On Cushinoid dogs they like to get the levels down to 150.
Have any of you ever heard of such a dramatic drop in such a short period on such a low dosage or Trilo?
The vet wants us to continue on the same dosage for another week and to do another ACTH next week. Our concern is that her levels may drop too much, making her Addisonion, considering they dropped down to 300 in one week. Also, the effect of Trilo is accumulative.
What are your thoughts on this?
Thanks,
Joel
Harley PoMMom
02-02-2012, 01:53 AM
I think your vet is wise at the suggestion to wait to adjust the dosage of Vetoryl.
Yes, we have seen members dog's cortisol drop significantly on a low dose in a short amount of time. From my calculation, converting to ug/dl, which we are used to seeing here, Jenny's cortisol went from 35.5 ug/dl to 10.9 ug/dl.
When my boy, Harley, started Vetoryl his cortisol dropped from the high 30's ug/dl to 11 ug/dl in two weeks.
This is the main reason we stress to our members to start at a low dose and work their way up, if need be.
So happy Jenny is responding so well and please do keep us updated!
Great Job!!!
Love and hugs,
Lori
Thanks Lori, it's really good to know that. With such a rapid drop in just one week, don't you think that continuing at the same dosage may drop it to dangerous levels? Shouldn't we consider halving the dosage to 10mg per day?
Thanks,
Joel
labblab
02-02-2012, 07:47 AM
I believe I'd stick with your vet's recommendation and continue with the same dosage for the time being. Even though cortisol levels can continue to work their way downward during the first weeks of treatment, I believe you would expect to see the most dramatic decline at the very beginning of a dosing increase or the start of treatment. After that point, the levels tend to "drift" down rather than "plummet." Since you are watching Jenny so closely for any adverse effects, I think you are good to stay where you are as long as she is looking good to you. She is still a good ways above the ideal therapeutic level, so you do want her to continue downward rather than bouncing back up again.
Marianne
Hi Joel,
Zoe went from 44ug.dl to 11.2 in 10 days on 10mgs Vetoryl. She weighed appx 18 pounds. After 30 days on the same dose she jumped back up to a post 16.9ug/dl.
So you just never know.:);)
hugs,
addy
Squirt's Mom
02-02-2012, 10:57 AM
Hi Joel,
I am so happy to see those numbers coming down! :) I know Jenny must be feeling a bit better already. :)
Trilo does work rather quickly at first but the really good thing about Trilo is that is has such a short life in the system. Trilo leaves the body in 2-12 hours, usually around 6-8 hours after the dose is taken. Lysodren, on the other hand, continues to build up in the body for 48 hours after each dose. So that "cumulative" effect your vet mentioned isn't nearly as valid for Trilo as it is for Lyso. ;)
As Marianne said, we typically see the levels drop fairly rapidly in the beginning with Trilo babies but then they reach a leveling out point and the levels drop more slowly until they reach the desired level. Sometimes Trilo requires a bit of tweaking but that is not usually done until the baby has been on it and signs/numbers indicate the cortisol is not being controlled.
So be patient for a bit longer, keep watching her like you have been, keep talking to us, and I think in a few weeks you may see a whole new Jenny. ;)
Hang in there!
Hugs,
Leslie and the gang
Thanks very much Leslie. This really helps to put me at ease with continuing with the current dosage. Her next ACTH is on Wednesday.
Thanks again,
Joel
Cyn719
02-05-2012, 12:50 AM
Just checking in on Jenny. Hope the ACTH goes well Wed. Will check back. :):)
Hi Joel,
I just wanted to stop by to say hello (I was sick when you joined) and to tell you that I am glad Jenny seems to be doing well on the meds. It will be interesting to see how her ACTH goes on Wed. I don't have any experience with Trilostane, but as you can see, there are so many wonderful helpers who will guide you through this.
Keep us updated on how Jenny's test goes!
Julie & Hannah
We did another ACTH test on Wednesday and her levels are now 419 (post ACTH) so she's now on 20mg Trilo 2x day. She seems tired at the moment - a bit lethargic, but also has a new problem. Last week she fell and cannot really walk. The neuro thinks it's FCE. She's been going to rehab almost every day since and is starting to walk a bit. Her back legs just collapse and she is not steady on them.
On the bright side, her other muscles seems softer so hopefully the myopathy is reversal. She is such a trooper and I think she is determined to get right :)
It's been a really stressful week.
Thanks to all for your concern.
Joel
Sending hugs your way. Sorry you had a stressful week. I am sure others will be along to comment.
hugs,
addy
Cyn719
02-11-2012, 12:20 PM
Thinking of you and Jenny
Hope things continue to improve
Sending lots of support strength prayers and hugs xo
Hello!!!! stopping by to see how jenny is doing. sooooo sorry i had not stopped by in while. I had taken ill........had surgery, blahblahblah, lol. but finally getting back on schedule.
how is everything? how is she doing? what is the latest news from the doctors? Wanted you to know me and my kids are thinking ofyou. hope all is going smoothly and improving!!
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