Saffy Cocker spaniel, SLE (Systemic Lupus Erythematosus) 10.10.97 - 26.2.03

[Penel CIMDA moderator]

This is part 2 of Saffy's story - I need to add part 1.

Saffys story part 2

So, part 1 of Saffy's story, published in Dogs Today magazine in June 2001, ended with Saffy beginning to recover from her polysystemic immune mediated disease which began following her booster vaccination in Jan 2001.

Throughout those next few months, Saffy became better and better and was on an ever-decreasing dose of Prednisolone and Azathioprine, with a view to taking her off the drugs, if she didn't show any adverse effects during drug reduction.  She got back to agility, her muscle mass was increasing, weight was stable and all seemed well – even her poor coat began to grow back again.

July came, no problem, August came – and we were down to 2.5mg Pred every other day and 25mg Azathioprine every other day.  The Pred was stopped on 6 August, and the Azathioprine was stopped on 20 August.

Everything seemed to be going so well for a week or so, and then whilst out walking, Saffy was snapped at by a friends (very large) dog.  She was bitten but only a scratch, and terrified, and of course I was fully aware that the stress might be a big problem, especially as she did not have the drugs 'supporting' her any longer.
A week later, Saturday 1st September, she couldn't get up out of the car to go for a walk.  In the back of my mind, I knew this was the beginning of a relapse – but of course you want to believe that maybe she was just tired, or strained a muscle.... By late Saturday night, the ulcers had started appearing in her mouth again.  We paged Grant, who called us back immediately, and we arranged to speak again the next day with a view to seeing him first thing on Monday. 

By Monday morning she was much worse, the polyarthritis had set in with a vengeance and she could barely stand unassisted.  The ulcers in her mouth were very big and deep,  and she had a slight temperature (103.5).  Once again lymph nodes were all enlarged.  The heart murmur which had always come and gone, was there again.

Immediately Saffy was put back on the immunosuppressive drugs – 25mg Pred twice daily and Azathioprine 25mg once a day. 

Within a couple of days there was a marked improvement, so the drugs were reduced to 12.5 Pred twice daily and Azathioprine stayed the same – 25mg once a day. 

However, it would seem that we reduced the drugs too soon, as she rapidly deteriorated again. 
On the 11th September when we saw Grant again, there was severe shifting lameness (polyarthritis) , swelling in some of her joints, and her neck and head were very sore on manipulation.  The mouth ulcers had ruptured and there was a greeny discharge from her right eye – she was again very unwell.

Because the signs were ever so slightly different from before, Saffy was re-tested for all the tick borne diseases, as well as joint fluid being taken from various joints, and a lumbar puncture.  White blood cell counts were high in the joint fluid (mainly neutrophils).  The fluid was less viscous than normal – and the results were consistent with immune mediated polyarthritis – thankfully the spinal fluid was normal.

So, back onto the higher dose – Pred 25mg twice a day, and Aza 25mg once a day.  She was also put onto antibiotics as a precaution due to the high dose immunosuppressant drugs, and Zantac – quarter of a 75mg tablet twice a day, to protect her digestive system from the drugs.

During all this time, Saffy was a little trooper, as ever – but she had difficulty eating and drinking, as her mouth was so sore, but managed to lap raw egg which I whisked into goats milk.  She refused to drink water, so we let her have goats milk – unfortunately this meant she got diarrhoea, so we had to water down the milk, so she would drink at all.  She couldn't walk for most of the time – I used to hold her up by looping a tea towel under her tummy and walking her around this way.  Gradually over the next few days, she began to improve again, and day by day, the lameness became less, and the mouth ulcers less sore. 
However, at our next check up with Grant on the 26 September, she was weighed, and had lost nearly 2kg – we put this down to eating less, and muscle wastage.  The drugs were reduced again – but this time – we reduced to 25mg Pred in the morning, and 12.5 Pred in the evening, and Aza 25mg once a day still.  This seemed to be fine, she stayed stable.

Meanwhile she caught kennel cough – so back onto antibiotics – really this was a minor thing compared to her AI disease.

I increased her food – by now I was home cooking all her food – adding potato, and lamb which should have bulked her up a bit.  She was still urinating and drinking a lot, but since this is a side effect of high dose Pred, we didn't think it so unusual.

On 10th Oct (Saffy's 4th birthday) – Grant sent a urine sample for analysis.  It showed protein / creatinine ratio to be 13.34 – normal is less than 1.  This was such a devastating blow to us all.  It would seem that Saffy had developed immune mediated glomerular disease.  Basically – the antibodies gather in the filtering tubes of the kidney (glomerula) – 'stretching' them wider than normal.  This allows the protein molecules to drop through, and (to cut a long story short) the dog loses weight.  Once these tubes have been stretched, generally they don't shrink back to size again.  Glomerular disease is poorly responsive to therapy, and Saffy was already on the correct treatment for her immune mediated disease.  We were basically told there was nothing more we could do.  Grant also confirmed that he thought Saffy's polysystemic immune mediated disease was in fact Systemic Lupus Erythematosus (SLE).  It doesn't matter whether or not your dogs disease has a name really – but it kind of helps for some strange reason.

So, we made an appointment to see Chris Day , the homeopathic vet in Oxfordshire, on the 24th October.  Chris was great – he said that although she was very ill, he had seen dogs recover from disease like this and live a long life.  No promises mind you, but he would do his best to help Saffy.  One of Chris's main therapies is a raw natural diet – totally organic.  So, even though I was feeding her a home cooked diet, Chris wanted me to feed it raw, and to make sure that every single thing that went into Saffys mouth was organic.  The reason being, Saffy's kidneys were so stressed, we needed to let them do as little work as possible, by not giving her food that might contain chemicals.  Chris also put her on two different types of drops – Echinaforce, and Petasan (both to balance immune function), as well as tautopathic Pred 30c – supposed to stop the bad side effects of Pred.

I found a nearby organic food supplier, and began to feed her raw organic meat, and raw organic veg – cooked potato, but the rest was raw.  Within about 3 days, my husband and I began to see an improvement.  She was brighter, not drinking or weeing as much, and she had begun to gain weight.  Conventional treatment had not changed, so something else was doing the trick – I believe it was the diet.

On the 29th October she was re-weighed – she had gained half a kilo – a lot for a little dog !  The heart murmur had gone (and has not since reappeared).  The protein creatinine ratio was down, to 9.78.  This was great – although still very very high, at least it was going in the right direction.  Preds were reduced to 12.5mg every day, and Aza 25mg once a day.

We saw Grant again on the 21st November.  Saffy was happier than she had been since beginning of September and we could all see the improvement.  Her weight was back up to 11.5kg which was great, and the protein creatinine ratio was down again, to 2.64 – whoopee we were thrilled. 

On the 18th Dec, she was weighed again – a gain to 12kg, but this time the protein creatinine ratio had increased slightly to 3.84.  It was also noticed that Saffy had very high triglycerides in her blood – 9.9mmol/l – normal range is between 0.5 and 1.5.  So, another problem had surfaced.  Preds can cause high triglycerides, but then so can other things too.  Hypertriglyceridemia can cause pancreatitis which was a worry to us.

Christmas went well, Saffy was stable all throughout.

Jan 2nd 2002 we reduced the drugs to 12.5mg Pred every other day, and the Azathioprine stayed at 25mg every other day.  Her blood test in February showed that the triglycerides 5.5mmol/l, and the urine test showed that the protein / creatinine level was down to 0.6 – finally this showed that her kidneys were ok.  She had again gained weight, up to 12.5kg.  Grant wanted us to change her diet to a commercial food, formulated for a low fat diet, but I refused.  I just could not accept that this diet, which had previously done so much good, could be causing the high triglycerides.  We soldiered on with the organic raw diet, giving leaner meat, and more veggies.

Mid-February whilst out walking, Saffy ripped one of her outer claws on her front right foot.  This was extremely painful and the emergency vet had to cut off most of the nail which was hanging off by a thread. I was terribly worried that this would cause her to relapse, and also worried that the immune suppressive therapy would stop her healing.  The healing took ages, and ages, and a large cut developed all the way across the main pad of the same foot.  Thanks to a friend who recommended we try Thornit powder, finally after about 3 wks, the foot began to heal.  We did not give antibiotics, as there was no infection – I just washed it twice a day with saline, and it was kept lightly covered with a little cotton sock !  An interesting point – all of her claws on that foot had cracked, but thankfully only one broke.  Were the brittle nails another side effect of the drugs ?

In March Saffy had a bout of unexplained back pain, which now we suspect was acute abdominal pain.  It could have been following boisterous play with a friends dog, but it was unlike her to play that roughly.  She seemed to recover ok after a few days though and nothing more was thought of it.

April 23rd and we saw Grant again for a re-check.  Triglyceride levels were again very high – 4.49 mmol/l.  Azathioprine levels were reduced to 12.5mg every other day, and preds remained at 12.5mg every other day.

On the morning of the 16th of May Saffy began vomiting after being awake most of the night fidgeting.  She seemed very uncomfortable, and could not even keep water down.  We saw the local vet who wanted to give her metaclopramide (an anti-emetic), which I refused, as our other dog, Tilly had a severe reaction to this drug in the past.  I figured if Tilly had reacted badly to it, then definitely I was not giving it to Saffy !  We opted for a gentle painkiller (not Rimadyl) and took her home.  She continued vomiting each time we gave her water, so we were back at the vets the next morning. The vet suspected an obstruction as they know I feed a BARF diet, so wanted to x-ray.  X-rays came back clear, no obstruction, so she was kept in on IV fluids for the day.  Bloods were taken, electrolyte levels were checked, and were ok.  Lipase and amylase levels were also checked and these were fine too.  But, as Saffy had such high triglycerides it was suspected that she did indeed have pancreatitis – just because lipase and amylase levels are ok does not mean pancreatitis is non-existent.  She came home that evening, much brighter after the fluids, and I gave her very very small meals for the next week or so, of mainly raw vegetables, and raw chicken – all very low in fat.  It was then that we realised these other episodes in the past few months, could have been the beginnings of pancreatitis, all possibly caused by the high triglycerides, which in turn, was probably caused by the medication Saffy was taking.  We will never really know whether or not it was pancreatitis, this could have only been 100% proven by a biopsy which we were not about to put her through.  As a precaution though, I keep Saffys diet low in fat, and high in vegetable content.

On the first of June, Saffy took part in an agility demonstration.  She did superbly well, even though it was a hot day.   On the 3rd of June Saffy started limping, whether or not this was something to do with the agility demo we don't know – certainly she did not obviously injure herself.  Whether the heat had triggered a reaction we don't know either.  From then on, Saffy limped more and more. 

At her re-check in August, Grant took blood which we sent to Jean Dodds at Hemopet, in California.  I wanted to be sure that she didn't have a thyroid problem as well as everything else.  Results came back normal which was a huge relief.  Other routine bloods were taken, and triglyceride levels were down again, to 1.95 mmol/l.  These were reducing every time we reduced the drugs, which suggests that the medication was certainly a contributory factor to the high triglyceride levels.

The shifting lameness continued, but intermittently, and it was suspected that Saffy had arthritis.  She was having trouble getting up from lying down, and was often unable to come for walks.  She was showing no other signs of relapsing – no ulcers in her mouth, no temperature, her lymph nodes were not raised etc. Saffy had seen a chiropractor who had adjusted her several times, and also she had acupuncture several times.  Both of these would help for a couple of days but then the lameness would return.   So we started her on Cortaflex, a joint supplement which can help arthritic conditions.  After 4 wks on Cortaflex there was no improvement.

Grant and I decided we had to increase the preds, and see if this improved her condition. So we increased from 5mg every three days, to 10mg a day.  Initially there was a great improvement, almost within hours she was brighter, more alert and much more mobile.  This carried on for a few days but then the lameness returned, especially in the evenings.  After a week, we split the 10mg pred dose into two 5mg doses.  This, to date (12.11.02) has seemed to do the trick.  Saffy is back to her normal self, very bright, very alert, and very mobile – there has been no lameness for a week now which is marvellous.  We have also started taking her to a hydrotherapy pool to try and build up those muscles again, which have weakened over the last few months.

So, this ends Saffy's story for now.  As you can see there have been many many ups and downs – but as with all immune mediated diseases, you just do your best to cope with what it throws at you.  SLE is a very unpredictable immune mediated disease, with lots of different symptoms.  You have to live for the present, and cherish the good times, take lots of photos and do lots of fun things which you and your dog enjoy.  Most of all appreciate them while they are still with you.





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I didn't keep detailed notes after writing the above - but in February 2003 Saffy died.  She relapsed again, and this time the drugs didn't work.  She died aged 5, after battling SLE for 2 years. 

[christina]

Oh I am so very sorry saffy died I got a shock when I read your last post on her!:-(
You did every single thing in your power to help her!
What a difficult disease!
And,so stresful for us,humans as well to deal with.
The ups,n downs are tough
Yet we adore our dogs,n would do anything to help them be well!
Its,so hard,especialy when they are young n unwell
X

[gschellinger]

Thank you for sharing Saffy's story with us Penel. She was certainly a strong little fighter of her disease. I'm sorry you lost her to AI disease instead of old age. That is how all dogs 'should' go. But we take care of them while we have them. She must have given you so much in her short life
gail.

[Penel CIMDA moderator]

She did Gail, thanks.  What she mostly did was inspire me to help Jo with CIMDA and that's what we've been doing since then.  So although I suffered a terrible loss, a lot came from it.

[gschellinger]

I can certainly appreciate that Penel. Dogs who are never sick or trying, in some ways, are not always the ones to teach us things. Of course they can be sweet or athletic and teach us much. But caring for a sick dog is somehow almost like a gift. Although I would rather Lola wasn't sick, I accept her as being the dog she is. She has so inspired me, taught me things, and is still teaching me. In many ways, like you and Saffy, she has shown me the way to go in my life. Lola has been sick with ataxia for as long as she was w/o it, 4 1/2 years. And before that she had only about a year free of major AI stuff. She is nine now. So it has been a long road for us. I no longer really remember what life was like before her. I know it is better now
gail

[Shannon]

I believe they are sent to us (or we are sent to them) for a reason. Some are sent to teach us much and even though our hearts may break in the process, they complete us. I often wonder what would happen to our precious one's that have all these problems if they ended up with people who didn't care and then I realise that is why they ended up with us, because we do. Thank you for sharing your precious Saffy's story she must have been a special special friend and what a road you walked together!