New Diagnosis of SLE

Started by Indiana, March 25, 2013, 02:04:09 PM

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Indiana

Hi
My lovely GSD boy has recently been diagnosed with SLE, he is 8.  It started with fever and polyarthritis, and he then had a cough (pleuritis) and we discovered some mouth ulcers, which pretty much in combination confirmed the SLE.  He is on 50mg of prednisone a day and aziaprothine (sp) every day for the first week, and now the Az every other day. He is two weeks in. The onset was dramatic and scared me to death. I got him referred to a specialist really quickly and even then it was hard to get the diagnosis, and I had help from people from another dog board to point us in the right direction! He is responding well to the steroids, and of course the plan is to gradually reduce those over a period of time and hope that he goes into remission at the end of that time - 6 months is the gradation period we are talking about. 

Are there many here that have SLE dogs? If so, can I ask what the time frame for their drug therapy reduction was, and did they achieve a remission ((I know every case is different)   He still isn't fully 'himself' not Mr 100 mile an hour as he normally is, but we are only 2 weeks from it happening, but it feels SO much longer than that.....

Penel CIMDA moderator

Hello.
So sorry to hear your lovely boy has SLE.  It sounds like you're seeing a great specialist though and are getting on top of things.
Quite honestly you can't expect him to be back to normal for months as the drugs will take a huge toll on him.  SLE is an extremely difficult disease to treat - it's a fine balance of drugs vs disease.
I had a cocker with SLE, she developed it age 3, and sadly she died when she was just 5.
In between times she had pretty good quality of life - I wouldn't say normal because I was much more protective over than I had been previously.  All dogs are different and you can never tell what's going to happen - it really is a take it day by day kind of thing.
Azathioprine doesn't really start to work properly until about 4 weeks in, so make sure he takes it really very very easy for a good few weeks.  5 minute walks around the garden etc. 
Best wishes to you - what is his name?
Penel
(SLE, Surrey - UK)
Forum Owner
CIMDA

Jo CIMDA

Hi Indiana

I'm sorry your dog has SLE but at least the vet has recognised it and treatment has started.

I have had a dog with SLE and he lived  for 4 years after diagnosis and during that time he enjoyed his life.

SLE is different in individuals because it depends on what body systems are affected.  Some problems are harder to control than others, and the longer treatment is witheld the more body systems become affected.  Also the dose of drugs, and duration, is very important to the outcome. It does seems as if you have caught it quite early.

Your boy should be on the minimum immunosuppressive dose of *prednisolone, which is 1mg/kg bodyweight/12hrs.  Any less and the treatment will not work. So if he weighs 25kg then that dose is fine. Please check out the immunosuppressive drug protocol by Michael J Day in the files.

  I'm pleased he is on azathioprine but he should really stay on this for much longer than you have stated. As Penel has already said, Aza does not reach its full potential for at least 4 weeks and the idea is to keep the *Aza at 2mg/kg/24 or 48 hrs until the disease is under control and usually long after the Preds are reduced. Preds are the main stay of treatment but they do have the potential of bad side effects.  By using aza you can build up the level of immunosuppression without increasing the steroids thereby limiting side effects.

Most dogs with SLE are on a combination therapy for life albeit a low every other day dose.

Your boy should be on a gastroprotectant to protect his tummy from the excess acid that the steroids produce.  Something such as *Ranitidine 2mg/kg/3 times a day should be ok.

This early time does get better, so although it is horrible now it should get better soon.

Jo

*Plumb's Veterinary Drug Handbook

gschellinger

Hi,
I'm glad your dog is responding to the treatment. You never know with these dogs how things will go along. My dog had many problems including IMHA, polyarthritis/polymyositis, SLO and some lesser immune problems. She had them when I adopted her at one year of age, and they continued until she was about four. At that time I started her on LDN, an immune modulator. She did not have any more immune problems after that. It isn't something that is widely used but I believe it kept her healthy. Unfortunatly she then developed a late onset, hereditary, progressive brain disorder. In short, you need to always be aware of potential immune system problems. But your dog may never have another. Not very comforting, but hopeful.
Best.
gail.
gail and Lola (SLE, hereditary cerebellar ataxia, chronic undiagnosed nasal congestion) usa

Indiana

#4
Thank you all.  I suppose I was lucky in a funny kind of way. My vet of 30 years had left our practice and I was not confident in the new vet that had taken over, still 'wet behind the ears', so I was looking for another vet, and settled on a highly recommended local vet. Can't say I took to him right off the bat and because I don't 'know' him either, I wasn't prepared to take any chances, so 2 days into this I just requested a referral, which is why things moved along so quickly. My boy was so ill, I didn't want to go the 'lets try this next' route. At the referral centre, we did x-rays chest (inc heart and lungs) and abdomen, ultrasound heart, lungs abdomen, lungwash (due to the cough) joint taps, blood test, urinalysis. All his major organ systems are good.

I have been taking him out for normal walks since he is feeling better, is that the wrong thing to do? I have basically just let him set the pace and do whatever he wants to do. He is moving fine, quite bouncy, although as I say, not the crazy boy he usually is.
The vet prescribed the whole dose of pred in one go, but the way I am reading it here, it is better to split it into two doses, one night and one morning, is that correct? She also didn't prescribe a gastroprotectant, but I have got him on ranitidine myself having been advised that by others and reading it here. He weighs 32kg, so I am a bit worried that he is being underprescribed on the steroids. I will contact her and ask about it.  I wasn't clear about the Az.... There is no question of it being withdrawn at the moment, just reduced. In the longer term, that is the drug that we intend to continue with, reducing the pred over that one if that makes sense.  She is currently writing my local vet a plan, which she will also be sending to me (at my request). The plan is to reduce the pred in 2 weeks time to 37.5mg (which will be one month from onset).
Can someone explain more about the Az to me please. The vet has explained it all to me, but there was so much going on that it all became a bit of a blur.

His name is Indiana! Indy for short.

gschellinger

Even when they seem to be feeling better, it is best to keep exercise to a minimum at this point. Also remember that your dog has not got a working immune system right now. So best to keep him in your own yard away from anything he may come into contact with. When my dog was on immune suppressing dose I had her wear socks in the vet clinic. We didn't have a normal walk for about three months when my dog had polyarthritis and polymyositis. It is great to hear he is feeling pretty good :)
gail
gail and Lola (SLE, hereditary cerebellar ataxia, chronic undiagnosed nasal congestion) usa

Indiana

Thank you!  Will cut back his exercise, though he wants to come, especially as I have another dog. Can I ask why it is best to limit exercise? Will it do him any actual harm if he wants to go on his walk (other than the risks associated with coming into contact with other animals etc?) From a mental stimulation point of view, I feel he will qucikly become depressed if he has to be too restricted, as he has a 'free spirit' nature! and I want to consider his mental well being along with the physical, as I think it is all connected.

I was talking to my OH this morning about the best places to take him to, where there is not a proliferation of other dogs, and we do have a little wood where hardly anyone ever goes. I know of course that there is wildlife etc.  The referral centre did not seem overly concerned about any of this? However, I am very aware of it. Can I also ask, which I forgot before....can I give him milk thistle to support his liver? Will it interfere with any of the drugs he is on?

gschellinger

Any kind of stress isn't good for your dog. Physical or mental. If he is stressed by not going on a walk then you will have to weigh that, and decide if it outweighs the physical stress. Maybe a happy medium for all the dogs. Taking the middle road is often the best route. I would cut the walks to short distance, and maybe give an extra walk, also short, for the time being. That way he will know he was out with the pack, but won't be physically stressed. The fact that your dog is feeling so energetic is a very good sign. But early on they still need their energy to get well and stay well. As you know these dogs can relapse quite often.

Not sure about the milk thistle. You need to ask your vet. My guess is it won't hurt to use it.
g.
gail and Lola (SLE, hereditary cerebellar ataxia, chronic undiagnosed nasal congestion) usa

Indiana

I only know really from what I have read here, since I am only just starting this journey with SLE. I wonder if the fact that we caught this so quickly has made a big difference in him responding quickly and apparently feeling so well (relatively speaking) ? He does have a good energy level, though I would say he is 70% of normal. It was 1 week from first signs to him starting with pred injections (whilst in the hospital) once we had actually determined the diagnosis. When I first took him to the referral centre they couldn't pin down what was wrong because the symptoms were still a bit vague, and the polyarthritis hadn't really taken hold yet. That came in the second half of the first week, along with the ulcer on the tongue, and the occasional cough developing into a more frequent and obvious cough. (They actually said I took him to them too soon :) )  Anyway, I am a little traumatised from what I have read about SLE, and just hope I have a miracle boy on my hands.  Like so many others before me, I shall be terrified when we start to reduce the meds, and live in fear of a relapse.

Penel CIMDA moderator

You just have to take it day by day and value the time you do have with them.  But then I think we all do that with all our animals anyhow.

SLE is particularly stressful because it has so many different symptoms.  With Saffy, the first time it showed as back pain.  Then various relapses within the 2 years showed differently - mouth ulcers first one time, joint pain another time.

The exercise thing is because a) your dog is immune suppressed so even coming into contact with things they would normally not even notice, could turn into an infection that they won't be able to fight.  b) the drugs they are on cause muscle wastage so they will be more tired than usual.  You just have to treat them with kid gloves for a while.

Penel
(SLE, Surrey - UK)
Forum Owner
CIMDA

shawkyelisabeth

Sorry for Indie having a difficult time..I hope he will settle on the correct treatment and show improvement soon..dont worry about his being tired and maybe not able to workout normally, he needs all his energy to fight the disease and needs a lot of rest..and the least thing you need is an infection acquired  during a walk or from another animal..so enjoy your time with him at a reduced energy pace and he will be grateful for the quality time you give him by just cuddling him or talking to him..by the way they understand when you tell them to cut down on their energy and keep calmer, they instinctively know that rest helps them get better!
Keeping paws crossed for him here..
Elisabeth with Cecil and her late soulmate Stella

Jo CIMDA

Hi Indy

I wonder, if he was on steroids injections whilst in hospital perhaps they had started him on an immunosuppressive dose and the 50mg dose he is on now is the first reduction in dose.  Milk thistle is fine to give and it is a good liver support.

In addition to the other reasons, already given, for restricting exercise, a dog with polyarthritis may not have adequate healthy synoval fluid in his joints to provide protection so it is better to take his exersice easy for a while. 

The reason for splitting the dose of preds is to make it easier on the stomach thereby reducing the acid in the stomach which may cause ulcers or pancreatitis.

What do you want to know about azathioprine?   

Your boy seems to be doing very well.  His energy levels are very encouraging.

Jo


Indiana

#12
Thanks Jo. He only had 2 pred injections in the hospital before I collected him, and I think they were the same dosage.  I wondered about Az, it seems like a very serious drug. Is it mainly used to suppress the immune system for SLE. Like Cyclosporin in other IMD's?. What worries me is how toxic it is, and I am concerned about what it might be doing to Indy. I had a GSD years ago who had AF and she was treated under trial at the QMHA at Potters Bar with Cyclosporin, prior to it becoming Atopica approved for Vet use. It worked for her and over 6 months she was weaned off of it and the AF never returned thank God. But the Cyclosporin didn't seem to be toxic like the Az, so I wonder why a cytotoxic drug is needed? Flipping expensive though, and her insurance on that condition had run out by that time :-\
The other drug I have come across and she mentioned as a possibility to try in the future if we need to is Levamisole. Has anyone tried it or heard of it being used for SLE? Or know the pro's and cons of using it? Just a thought for the future. It seems to have a good success rate for achieving remission, but I haven't seen it mentioned here, which makes me wonder about it.
Thanks for all the help so far. My boy seems to be on a plateau. Not his normal self, but really bright and quite cheerful and active. My OH said to me yesterday that he was worried that we would never get the 'real' Indy, who like to race like the wind and behave like a complete idiot,  back again  :'( 

gschellinger

It does seem like they will never be the same sometimes. But they do return to their former mischevious, playful ways when the drugs are done/reduced to lowest possible dose. I remember thinking the same thing.
g.
gail and Lola (SLE, hereditary cerebellar ataxia, chronic undiagnosed nasal congestion) usa

Jo CIMDA

Hi Indy

There are numerous immunosuppressive drugs that are used in the treatment of  immune mediated disease.  The main stay of treatment is usually steroids and to be honest these really do work the best, but if very high doses are needed over prolonged periods of time then introducing a 'combination' drug is prudent because it allows the steroids to be reduced (perhaps earlier than would be, thereby reducing the side effects) and still maintain a good level of immunosuppression. It is hoped that the drugs will be either weaned off altogether or reduced to a low every other day maintenance dose in order to keep the dog in remission. So if a cytotoxic drug is used then hopefully it won't be forever or it will be a very low dose given perhaps only a couple of times a week.

If remission can be achieved by using prednisolone alone, that is wonderful and it is the most desirable form of treatment, but if a combination drug therapy (using a cytotoxic drug) is the only way to achieve remission, and give the dog a good-to-reasonable quality of life that is the best option. It is  better the dog has some good years than none at all.  It mostly depends on the severity of the AI disease. 

Cyclosporin and Azathioprine are both cytotoxic drugs and carry the same risks.  A personal preference for me is Aza, and I think this is better tolerated by the majority of dogs. Levamisol is aslo a cyotoxic drug.

It's a bit like being between a rock and a hard place.  None of us want to use these drugs but we may not have a choice as a combination therapy may give the best possible outcome for the disease being treated.

He is sounds pretty good.

Jo