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  Discussion on Phemphigus Confirmed
Author Message
Member:
cathy33

Posted on Thursday, Jun 2, 2011 - 4:29 pm:

Dear Dr O,

Following a positive diagnosis for Phemphigus, I thought I would update you on my 2 yrs old progress.

After 10 days in hospital, he is back at home on high dose steroids which are slowly being tapered down together with weekly gold salts injections. In my specialist's opinion and experience, this combined treatment will give him the best chance of remission in the long term. Obviously only time will tell.

So far he is doing well but I wanted to alert you and other readers to the fact that my horse has had a drug reaction to th gold salts on both occasions that it was injected. It seems to be a pain response with mild colicky symptoms of pawing the ground, slightly increased heart rate and significantly increased respiratory rate. The reaction seemed to start about 5 mins after each jab and lasted for about 1 hour before he returned to normal. My vet confirmed that it was a drug response after the second occasion and intends to give him a fynadine injection just before the gold salts next week to help with he pain.

I noted from your drug information that no reactions had been seen in horses but there is no doubt, that in the case of Harley, he had one! Perhaps this is a first?

Anyway, I will keep you updated with his progress. Are you aware of any horses that have gone in to remission with this combination of drugs?

Many thanks,
Cathy Williams
Moderator:
DrO

Posted on Friday, Jun 3, 2011 - 8:05 am:

Hello Cathy,
Thanks for the update. The article reads that reactions have not been reported. And more accurately it should read "that I have found". I suspect the lack of information has more to do with the infrequent use of gold salts in horses do to its cost. Do you mine telling us how much the treatments are costing?

As to personal experience with this regimen, no I have not had anyone choose this route however there are several reports in the literature of long term remission with this combination, so good luck. To read about them push the "PubMed" button in the article and they will automatically come up.
DrO
Member:
cathy33

Posted on Friday, Jun 3, 2011 - 5:32 pm:

Dr O,

Thank you for your reply. Yes, the Gold Salts are indeed very expensive, approximately £175 per injection. My vets are doing it "at cost" which is very kind of them. The specialist recommended 6-8 doses - I have actually pre-ordered enough for 9 doses. It was a very difficult decision to take to spend this amount of money but the specialist said that, given his young age, his chances of remission are on the "favourable side of guarded". I felt I had to give him his best chance.

I will keep you posted with Harley's progress. His coat has recovered well although new hair growth is slow to return. I would say that he lacks his normal energy and alertness (I imagine this is due to the high, and toxic medication he is on) but he has a good appetite and seems to regaining some of the weight that he lost.

Thank you again,

Cathy

I really hope that I will be able to report a successful outcome to this story but I am fairly realistic about his prognosis.
Member:
lilo

Posted on Friday, Jun 3, 2011 - 9:01 pm:

Cathy, I want to wish you and Harley all the best. Hopefully, the treatment will do the trick and he will be totally healthy again.
Lilo
Member:
cathy33

Posted on Saturday, Jun 4, 2011 - 9:19 am:

Thank you very much Lilo. It's such an awful disease but I am keeping my fingers crossed.

I will post again when I have any further updates on his progress.

Cathy
Member:
cathy33

Posted on Wednesday, Jun 22, 2011 - 6:13 pm:

Just to quickly update. Harley continues with his steroids (now down to 11 tablets of dexamethasone per day) and weekly gold salts injections. He is doing very well, no sign of new disease and is generally back to his normal self!. In another couple of weeks the dosage of steroids will reduce to 11 tablets every other day.

His reaction to the gold salts injections has reduced each time he has had it. He has now had 5 with another 4 to go.

I will post again when we come off the medication in August - hopefully we won't immediately see signs of the disease returning.

Best wishes

Cathy
Member:
frances

Posted on Thursday, Jun 23, 2011 - 7:19 am:

That's very good news, Cathy. Thanks for the update and here's hoping he continues to improve.
Moderator:
DrO

Posted on Thursday, Jun 23, 2011 - 8:36 am:

Thanks for the good news update Cathy. I am keeping my fingers crossed.
DrO
Member:
paul303

Posted on Saturday, Jun 25, 2011 - 1:06 am:

Good luck to you and Harley, Cathy.
Member:
lilo

Posted on Saturday, Jun 25, 2011 - 9:54 am:

Keeping my fingers crossed also! Lilo
Member:
brandi

Posted on Thursday, Sep 15, 2011 - 2:02 am:

Cathy, I would love to hear an update on Harley. I have agreed to retire an amazing Friesian to my barn who has been diagnosed with PF and has responded well to treatment with just prednisolone. I want to be prepared for what's to come, so I am attempting to gain as much knowledge as I can.

I hope to hear you've had good success.

Thank you,
Brandi
Member:
cathy33

Posted on Wednesday, Oct 12, 2011 - 10:59 pm:

Hi Dr O/ Brandi,

Sorry it has taken so long to update you on Harley's progress. I am sorry to hear about your horse Brandi but I am happy to report that, at the moment, Harley is doing well.

We had a bit of a blip earlier on in his treatment when unfortunately my farrier trimmed his feet too hard causing him quite a bit of pain and stress which resulted in the PF coming back but we quickly got it back under control by upping the dosage of steroids. That was back in late July.

He is now doing well on 10mg dex every other day and I am slowly tapering this down. His skin has recovered although has lost it's gloss through use of the steroids. He has a very healthy appetite but I keep his diet simple ( I use a brand called simple systems which doesn't have anything added particularly that would boot the immune system). He lives out and during the summer I kept him rugged up as he seems more sensitive to insect bites now.

One thing is that he developed 3 pussed filled cysts on the side of his face which had to be cut out. My vet hadn't seen anything like it before and we assume they were due to his immune compromised state. I guess we may continue to face issues like this.

Whether the use of the gold salts as a treatment has improved Harley's prognosis, I don't know. Only time will tell. In the meantime, I think he is enjoying life and long may this last.

If you have any questions BRandi, please let me know.

Best wishes,
Cathy
Moderator:
DrO

Posted on Saturday, Oct 15, 2011 - 9:57 am:

Delighted to hear things are going well Cathy. Concerning finding the lowest dose it is important to remember when it comes to preventing the long term problem of adrenal suppression the frequency is more important than the dose. Due to dex's long 1/2 life, every other day may not be enough to avoid suppression. Instead of lowering dose further I wonder if going to once every 3rd day would maintain control.

That said, control of PF is difficult and if what you are doing is working I certainly would be slow to make major changes.
DrO
Member:
cathy33

Posted on Monday, Oct 17, 2011 - 3:29 pm:

Thank you for your reply and update Dr O. I like the sound of your approach but wondered what your thoughts on laminitis are.

If I maintain the dose but do every 3 rd day does that also reduce the risk of him getting laminitis?

Best wishes,
Cathy
Moderator:
DrO

Posted on Thursday, Oct 20, 2011 - 7:15 am:

Hello Cathy,
Last month this was published online by the lead Equine Veterinary Journal and I think it accurately sums up the current thoughts on this:

Glucocorticoid therapy and the risk of equine laminitis
C. J. Cornelisse1, N. E. Robinson2,

Summary
Although glucocorticoids have been used successfully for the treatment of noninfectious inflammatory diseases of horses for more than 35 years, their use has been attended by a fear of the induction of laminitis. This paper reviews the evidence for this fear and the possible mechanisms whereby glucocorticoids could participate in laminitis induction. Although the association of laminitis with elevated serum cortisol in pituitary pars intermedia dysfunction suggests that chronic exposure to glucocorticoids may be part of laminitis pathogenesis, review of published reports and databases suggests that glucocorticoid-induced laminitis is a relatively rare occurrence. However, several of the actions of glucocorticoids are similar to those known to be involved in laminitis pathogenesis. Glucocorticoid administration can induce insulin resistance, lead to vascular dysfunction that potentiates vasoconstriction, and interfere with keratinocyte proliferation and differentiation as well as matrix integrity, all mechanisms that could possibly induce laminitis. Drug formulation, dose and route of administration, and the systemic and hoof disease history of the horse must all be considered when assessing laminitis risk during glucocorticoid treatment. Generally, local glucocorticoid administration presents little risk as does systemic treatment of recurrent airway obstruction without concurrent disease. Caution should be used however in horses that are overweight and/or insulin resistant, or have had a recent bout of acute laminitis of alimentary or endotoxic origin. Overall, however, the risk of laminitis after glucocorticoid treatment, especially local use, is acceptable compared to the many benefits of these drugs.

In short the link between steroid administration and induction of laminitis remains conjectural so I am not sure how we measure a reduction in risk between the two treatment regimens with dex. I do know properly administered alternate day therapy with prednisone reduces the risk of some systemic effects that result in Cushing's disease. Some of these effects are the ones described above as increasing the risk of laminitis.
DrO
Member:
brandi

Posted on Tuesday, Nov 29, 2011 - 11:27 pm:

Cathy, thank you so much for you response, I'm so sorry I have been off-line for so long. Sometimes I'm too overwhelmed to have the luxury of research!! Recently Max had an episode, another horse was seriously lame and I had a sick chicken all within a matter of days - meds and treatments for everyone and I barely had time to breathe! But we're stabilized now. Whew!

I am so glad to hear Harley is doing well. Max has only been with us for 6 weeks, but seems manageable. More on that in another post, where I have some important questions. I look forward to sharing information and insights.

Thank you.
Member:
cathy33

Posted on Sunday, Dec 18, 2011 - 4:46 am:

I am sorry I never replied to your post Dr O but thank you very much for the information. I haven't been online for ages.

Sadly Harley had a recurrence of pemphigus shortly after my last post which I believe was a result of stress associated with the surgery to remove the abcesses on his face. He had 25 stitches with no pain relief and sadly a facial nerve was badly damaged so now he has lost feeling around his lower lip on one side. Poor chap, I feel so sad for him.

After increasing the dosage of dex again, he rapidly improved and I am now back down to 8 mg every other day. I am a bit scared to reduce to every third day but will probably try this in the new year.

I have been told by several owners of PF horses that a herbal supplement called Skratch by Global Herbs has really helped their horse's condition. Interestingly, the product contains Tumeric which has known anti - inflammatory properties. I am about to try it out o will let you know!

Best wishes
Member:
vickiann

Posted on Sunday, Dec 18, 2011 - 11:53 am:

Hope this will help, Cathy.
Member:
cathy33

Posted on Sunday, Apr 22, 2012 - 4:15 pm:

Dr O,
I thought I would update you on Harley's progress. We are nearly a year in to his diagnosis of PF and at the moment he is doing well on 14mg of Dex given every 3 days.

He has been on every 3rd day administration for 6 weeks now and I am wondering whether I could now try weaning him off completely and if so, what would be your recommended rate of reduction at this stage. I give him tablets in 2 mg form. Could I reduce by 1 tablet a week?


I have learnt that the earliest sign that his symptoms are returning is that he doesn't like being groomed. I will keep a close lookout for this as I reduce the dosage. I have learnt that if I catch this earliest symptom, I can controll the PF by increasing the dose back up to 16mg. It's a real learning curve and I believe every horse with this disease behaves differently.

On a positive note, in my last postings, I wrote that HArley had lost the feeling on one side of his face following surgery to remove 3 abcesses ( due to suppression of his immune system due to the steroids I think). Well, fortunately the nerve damage is repairing and he is now finding it much easier to eat again.

Your thoughts on the reduction rate of the steroids, would be gratefully appreciated. I have read all the articles on DExamethasone and trying to prevent adrenal suppression and hope that the every 3 day therapy will help this.

I look forward to hearing from you

Cathy
Member:
paul303

Posted on Sunday, Apr 22, 2012 - 11:42 pm:

Cathy, I'm curious: Have all of Harley's symptoms disappeared? Has he been doing OK on the 14mg DEX every 3 days? Is he three years old now? Do you have him in any kind of training? It would be interesting to know how you are handling this youngster

Many thanks for keeping us all informed. We all learn so much from the experiences of others.
Member:
canderso

Posted on Monday, Apr 23, 2012 - 8:24 am:

Hi Cathy, thanks also for posting the follow up. In your earlier post you mentioned something about the herbal supplement. Did you come to any conclusions?
Member:
cathy33

Posted on Monday, Apr 23, 2012 - 10:37 am:

Hi Lee / Cheryl,

Thanks for your posts. I manage to keep Harley symptom free most of the time but if he stressed in anyway (eg a horse moved out of his field) then he often shows the initial signs. I react by increasing his dosage slightly for just a week or so and then it settles again.

I have decided not to train him at all this year as I believe this will be too stressful. In fact, I have come to the reluctant
conclusion that it very unlikely he will be ever be broken in.

Whilst Harley is generally symptom free of PF, the usage of relatively high doses of steroids suppresses his immune
system thereby making him more susceptible to other problems. I have been battling mud fever recently and his general hoof quality is poor, with several deep cracks. He is not lame though so I leave well alone.

I give him the global herbs Skratch everyday and his coat seems generally healthier. Whether it's anti inflammatory properties make a difference, I do not know for sure, but I like to think so!

My biggest conclusion from this learning curve I have been a part of over the past year, is that any changes to steroid dosages should be made very slowly, just as Dr O advocates. You would be amazed how many vets will tell you that the steroids can be reduced rapidly!!

I am under no illusion that there is a miraculous cure out there. I used gold salts at the outset of his treatment, in combination with dex. as this was reported to have had some success in achieving long term remission in a number of cases. I am now not at all convinced of this and believe there is not enough data out there to support this. In
addition, literature says there are no reported side effects of this drug when administered. However, there is absolutely no doubt that my horse reacted after the first injection with depression and colicky signs. This symptom reduced with each further shot he was given.

I have learnt a tremendous amount about controlling this autoimmune disease by a process of trial and error. There is a useful yahoo group for owners of pemphigus sufferers
where people exchange experiences and treatment ideas. Each horse has their on best management plan but sharing thoughts has been very helpful.

I am considering trying Transfer Factor, an immunomodulating supplement that contains bovine colostrum. It would require HArley coming off steroids altogether which will almost certainly result in his PF coming back before the TF starts to work - it's a tremendous leap of
faith but some horse owners have reported complete remission after taking this. I will see!

Dr O, have you heard of Transfer FActor and do you have any views? I know many vets are sceptical as it is generally
regarded as an immune stimulant which is not what you want for PF. Others say it can potentially "reset" the immune system.

Further to my last post, I would really appreciate your thoughts on phasing times for weaning Harley off his dose of 14mg dex every 3days, which he has been on for the last 6
weeks

Many thanks
Cathy
Moderator:
DrO

Posted on Monday, Apr 23, 2012 - 7:12 pm:

Hello Cathy,
Thanks for the updates. Concerning declining doses this must be a decision by you and your veterinarian but I do have suggestions on how to do it.

Instead of reducing the amount per dose consider reducing the frequency of dosing. Frequent small doses are more suppressive of the adrenal gland than less frequent larger doses. It has to do with the nature of drug metabolism usually occurring in half lives and larger doses not lasting longer in a arithmetic manner That is that twice the dose does not last twice as long.

In the case of antiinflammatory doses of steroids you can take advantage of this fact because the positive antiinflammatory effect continues even after the blood levels of the steroid fall below levels that suppress the adrenal gland. I do not know if this is also true of immune suppressing doses and have never seen work on this. I do believe I have seen work that shows a wide variation between individual equines in the elimination times for dex in individual equines. I hope this was more illuminating than confusing, let me know if you have questions.

I know of no scientific evidence to support the idea that 4Life's Transfer Factor will cure or even ameliorate Pemphigus. We have been writing about it for over a decade and nothing has changed that I know of. Run a search and you can find past discussions.
DrO
Member:
cathy33

Posted on Tuesday, Apr 24, 2012 - 5:27 pm:

Dear Dr O,
Thank you for your reply and advice re tapering Harley off the steroids which I will discuss with my vet. I think trying to go to 4 day therapy will be my first move rather than reducing the dosage.

Is there a blood test marker that would indicate if Harley's adrenal glands are working for themselves, ie no longer being suppressed? I am not sure how I will know when it is safe to discontinue the Dex ( assuming of course his PF symptoms don't return).

I ran a search on Transfer Factor and there does not seem to be any information on this site that supports it's usage. It would take a huge leap of faith of me to try it.

Best wishes
Cathy
Member:
cathy33

Posted on Sunday, Sep 9, 2012 - 4:15 pm:

Hi Dr O
It's been a few month since my last progress report on Harley. He has been doing pretty well and his dosage is now 12mg Dex every 5th day (reduced from 14mg every 3rd day in my last post in April). Sometimes he has the odd lump develop on his neck but I treat this topically with good result. He feet have full length cracks but they do not go that deep and he is not sore on them. Other than that, he looks the picture of health, his coat being bright and glossy.

I am hoping that the steroid dosage he is now on will have been enough to prevent adrenal suppression as I have now decided to stop the drug and try Transfer Factor. I have been in touch with a couple of owners whose horses appear to have gone into remission following 6 months or so of TF treatment. It's something I feel I have to try!!!

Dr O, do you think Harley's current, reduced dosage of Dex, which he has been on for about 2 months, will have been enough to prevent adrenal suppression? Should I worried about any other side effects by taking Harley off the steroids now?

Many thanks for your advice,

Cathy
Moderator:
DrO

Posted on Tuesday, Sep 11, 2012 - 7:15 am:

Yes I think a small dose every 5 days is likely to not have resulted in adrenal suppression.
DrO
Member:
cathy33

Posted on Tuesday, Sep 11, 2012 - 8:01 am:

Many thanks Dr O. I have now put his dose down to 8mg dex every 6 days, and will reduce to zero from there. No sign of any symptoms yet. I have started the TF too and will keep you posted on his condition.
Cathy
Member:
cathy33

Posted on Tuesday, Sep 11, 2012 - 8:13 am:

A photo of Harley now, aged 3 and 16 months into his Pemphigus diagnosis!! Lets hope he continues to look well after I DrOp the steroids and start the Transfer Factor.Harley, aged 3 years
Member:
canter

Posted on Tuesday, Sep 11, 2012 - 12:59 pm:

Pretty boy! I hope he continues to do well!
Member:
juliem

Posted on Tuesday, Sep 11, 2012 - 3:21 pm:

Continued success with your boy!
Member:
frances

Posted on Wednesday, Sep 12, 2012 - 2:10 am:

He's lovely - all the best with the new treatment!
Member:
cathy33

Posted on Wednesday, Sep 12, 2012 - 3:03 am:

Thank you for your good wishes!
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