Prednisolone Alternatives/ complementary therapy

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Esky
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/17/2009 3:02 AM (GMT -7)   
Hi, Newbee here.

I have a auto immune illness thats managed mainly with prednisolone.

Can anyone recommend some complemenatry drug therapy that enables them to take a lower dose of prednisone?

Im just trying to lower the whole toxicity thing.

My rhuem guy has recommended plaquenil, but loss of vision is not a side affect I want to risk.

Many thanks for your reply.

Marc :-)

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/17/2009 5:20 AM (GMT -7)   
Hi Marc
You want to be on as low a dose of Prednisone as possible preferably none except from time to time maybe, because it risks many serious side effects.

Plaquenil will NOT damage your eyes because you will have regular eye tests to detect any signs of damage occuring before your sight is affected and anyway the risk is negligible at no more than the maximum recommended dose for your ideal weight.

Plaquenil is a most wonderful medicine: apart from its obvious properties it does all sorts of good things. Thousands of people have taken it for years without any problems whatsoever. These days it is recommended that people who are in remission from very serious lupus continue to take it as a sort of safeguard or insurance against renewed disease activity

It is enough for many people but if not other meds are used along with it, such as the disease modifying medicines imuran or methotrexate and Cellcept, as needed.
Plaquenil doesn't suit everybody. There is an alternative called Quinacrine which is usually acceptable and doesn't ever affect the eyes. It can also be taken along with Plaquenil for extra anti malarial pow.

I wonder if your rheumy is experienced in treating lupus and if you feel confident in him, because good doctors usually propose treatment plans and explain very clearly the pros and cons of the medicines they recommend.

HTH
BB

Esky
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/17/2009 6:17 AM (GMT -7)   
Wow, what a top reply Bumblebee - Many Thanks!

I will definately research Quinacrine prior to my next meeting with my Rhuem, so I can weigh up all the options.
Regards the Plaquenil, I was just freaked out when they say loss of sight is possible without any specific degenerative cause, ie cataracts, tunnel vision etc.
If I can understand why it occurs then it all helps to weigh up the options.
With your advice in mind I may reconsider my opinion on Plaquenil as I really want to ditch the steroids if possible as Ive had some fatty tumours pop up recently.

Im stoked with your advice, it may be a life changer.

A quick question if I could be so cheeky?

With your experience in mind, my current meds that Im on are:

Prednisolone 20mg daily
Indomethacin (NSAID) 75 mg daily
Colchisine (NSAID).500 mcg a day

Do your reckon the Plaquenil by itself will have enough immu suppressive power? If yes, then I think Im sold on the idea!

Many thanks for your help.

Marc

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/17/2009 8:07 AM (GMT -7)   
Marc,
 
Prednisone carries a risk for vision problems and you should see an opthamologist on a regular basis while taking it.  Most experienced docs will start a patient on pred because it is fast acting and effective in most cases but also put you on a prednisone sparing med like plaquinel, imuran, methotrexate.  Then, pred would be slowly tapered to see if the other med can keep your immune system in check. 
 
Finding the right meds for each patient is more art than science and it takes time (months) for these other meds to work.  It can frustrating due to the long time cycles but there is no other way.
 
I would seek a second opinion but make sure the doctor is experienced in treating lupus or other AI diseases.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/17/2009 12:12 PM (GMT -7)   
Hello again Marc

I focused before on the q of eye toxicity and Plaquenil, and I am so used to talking about lupus that I clean forgot you didn't say you have lupus. Of course if the disease isn't lupus there's no point in hoping your rheumatologist knows about lupus! Whoever said eye damage is 'possible' with Plaquenil was making a very misleading and inadequate comment about it. Mike has commented on the far more real possibiity of irreversible eye damage from Prednisone, not to mention all the other really scary side effects, to name only one other, osteoporosis. If you have been on 20mgs Prednisone for any length of time you should be taking calcium and Vitamin D at least.
For a thorough discussion of Plaquenil I suggest you google (Plaquenil Dr Daniel Wallace). You might find extracts from his book The Lupus Book or even from the major medical text book DuBois Lupus Erythematosus which gives the fullest details of how Plaquenil works etc etc.
Plaquenil is an anti malarial and not an immunosuppressant - it isn't used for transplant or cancer treatment. It is disease modifying because it slightly changes the acid balance of the cells so they are less able to produce autoantibodies Among its many benefits is reducing inflammation but it is not described as an antiinflammatory.

Colchicine is not used for lupus treatment unless severe blistering is a problem which is rare. Someone I know takes it for the blistering caused by a disease called Behcet's. I think it is sometimes used for some other complication of lupus, maybe pericarditis but it is not part of the usual repertory of disease modifying steroid sparing drugs in general use. I dont know what class of drugs it is in, maybe a class of its own. It does have a strong anti inflammatory action but it certainly isn't usually described as an NSAID along with the other NSAIDs like the indomethacine.

Generally speaking it is impossible to predict individual responses to medicines. Some can't tolerate a medicine while others have nothing but great benefits. It might be no obvious help at all to some people. Plaquenil is regarded as no more dangerous than many OTC medicines that people dose themselves with without a second thought of risks and no supervision. As Mike says finding the right mix of meds can take months and then fine tuning to get the maximum benefits while miminising any potential side effects
It still would concern me that my doctor was not carefully explaining the purpose and pros and cons of therapy options and possible side effects. If it was the doctor warning about eye toxicity with Plaquenil it doesn't sound as if he is particularly well informed. You should have an ophthalmological eye test before starting to make quite sure there are no pre existing contraindications

Good luck
BB

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/17/2009 1:02 PM (GMT -7)   
I think there are some misleading statements above.

The eye effects of plaquenil are so rare that in a practice of 15 ophthalmologists, most practicing more than 20 yrs, no one has ever seen a case. You need a Vision Field Test every year - you just look into a round ball and push a button when you see flashing lights. If they ever find a problem, it is reversible when you stop taking plaquenil.

There is also a rare eye effect when taking prednisone, where glaucoma may be induced by taking HIGH amounts for a long time. This is rarely discussed as it only occurs with very high (IV) prednisone levels. Of course, there are the bone loss issues to contend with - Calcium & Vit D supplements a MUST for regular prednisone patients.

Hope that helps a little,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Esky
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/17/2009 2:20 PM (GMT -7)   
Hi Bumblebee1, Bsime & Lynnwood,

I am so, so thankful for your responses. Thankyou for taking the time to write such detailed advice.
I have definately struck gold posting a thread on here!!

about my rhuem guy, he is top. He is one of those specialists that goes the extra yard. I can only really compare him to 'Dr House' as you can see he is applying his knowlege when Im consulting with him. The problem is is that I am a strange case.

I have recurrent pericarditis, which in itself has distinct guidlines on how the condition is to be managed.
The problem with my condition is that all the test results point to the condition being auto immune driven.

So my rhuem guy and cardiologist are having fun as I dont quite fit the picture for either condition, but because of my conditions auto immune nature they are having to think outside the box a bit to find a way to manage it.

I look with great regard at anyone battling with Lupus, such as yourselves and thankyou for sharing your experiences and knowlege with me, in order to help me manage my problem. I definately feel a lot more comfortable with my rhuem guys advice now.

I am definately going to give the Plaquenil a shot.

Actually, with the anti malaria meds - when I was first diagnosed with my condition they thought the cause was microbial. So the docs perscribed me some malaria medication (doxycycline) to rid me of any nasties. Although it wasnt plaquenil, I noticed a significant improvement in my condition over the course of 10 days and could swear that they cracked it. But I had a flare up and a month later (when I was off the doxy) and was back to square one. So I will take this little improvement hint and work with it.

Once again, thankyou - you have made my day. :-) :-)

Marc - Australia

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aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 11/17/2009 2:27 PM (GMT -7)   
Hey Esky...just wanted to wish you luck on the plaquenil. Also it is known to cause a few stomach issues until your body gets used to it but that might last a week or two. Also it can take up to 3 months before you notice any real change...The time it take to build up in your body! Let us know how you do on it? When are you going to start it?

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/17/2009 3:13 PM (GMT -7)   
I actually took Plaquenil for a year and a half and I was one of those rare cases. It is important to get a baseline exam prior to starting the Plaquenil treatment.  I had to stop taking it due to eye damage,  (not blindness) so yes it can cause damage.  However, I was the first one seen by my rheumy in his practice, but I guess it does happen.

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/17/2009 3:19 PM (GMT -7)   
More from me Marc :)

I really hope the Plaquenil does help

Although Doxycycline is used for malaria it is an antibiotic. The anti malarials we talk about are Plaquenil Aralen ( chlorquine and this Quinacrine which is not available in Australia. These quinine type antimalarials do have slight antibiotic properties too but aren't used for treating infections.

I got Lyme disease infection and was successfully treated with doxycycline but it didn't seem to do anything for my lupus.

I have been taking either Plaquenil or its stronger cousin chloroquine for nearly 30 years now at maximum doses. My doctor is one of the world's top lupologists, at St Thomas' in London very careful and caring. He told me that I didn't need to bother with eye tests as the risk was nil. He knew I could afford to pay for them so it wasn't a question of saving our Health Care system money. Anyway the High Street optometrist does all the necessary testing. I do in fact get an annual eye test and the optometrist thows in the Plaquenil testing at no extra charge. Each place has its own recommendations so ask your rheumy what he advises. There are also signs to look out for yourself and a thing called the Amsler Grid you can find on line and print out.

Best of Luck
Cheers
BB

Esky
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/17/2009 4:11 PM (GMT -7)   
Hi all,

Eyetest is booked for this arvo.

Seeing the GP today and will grab some Plaquenil.

Please could you advise what your daily dose is, just so I have a reference to work against?

Im 94 kilos.

I have a Rheum appointment next week to tailor the dosage, but I figure its better to start a low dose today as its a slow acting med.

Many Thanks

Marc

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/17/2009 5:51 PM (GMT -7)   
Marc..I hope so much that the Plaquenil works for you, and even though I had to stop taking it, I would still recommend it to others hands down, it really helped me, and I have yet to find another medication that works as well.
 
My dose was never tailored to my weight and I weighed around 102lbs and took the maximum of 400mg.  I don't believe that it can never cause any type of eye damage, this is simply not true, if it didn't cause eye damage, I would still be taking it right now.  I'm glad to see you are thinking ahead to an eye exam.  I'm sure you will do just fine, and see wonderful results!
 
Best wishes to you!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/17/2009 7:20 PM (GMT -7)   
The grid that you refer to is online at sw-eng.com/plaquenil-eyes.html. If you forget where it is, the info is always at the head of the forum in the topic "Lupus Resources".

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/18/2009 12:36 AM (GMT -7)   
Marc

The maximum recommended daily dose of Plaquenil is 6.5mgs per kilo, about 3 mgs per lb, of ideal body weight, not actual.

The usual therapeutic dose is 400mgs a day. It might be a good idea to start lower and build up to give system chance to get used to it and cut down chance of common initial side effects of tummy probs. Take morning and evening at first or per doc's instructions and always after food, swallowed with plenty of water.

Doctors often stop Plaquenil because they are concerned that it could be causing eye problems and can't take the risk of being sued. According to Dr Wallace, to UK specialists, and my own top US doctor there are no certain reports of definite sight damage within ten years, provided the dose is correct and the patient has no kidney or liver problems. Of course it remains a concern just as so many other possible but very rare effects might be and would be tested for.
Don't expect miracles Marc but fingers crossed that within a few months you might be feeling much better in many ways. I do hope so.

Cheers
BB

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/18/2009 9:03 AM (GMT -7)   
I've been taking plaquenil for five years and never noticed any positive results from it until I went on a weeklong trip and somehow forgot to put it in my pill boxes. Within a few days I felt myself going into a flare and when I got home I went to bed for 4 days. It was a lousy experience, but proof that it works for me!
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/18/2009 9:40 AM (GMT -7)   
Bumblebee...I'm here in the U.S and while on the Plaquenil, my second eye exam was compared to the first and there were considerable differences noticed, enough to warrant the discontinuence of the Plaquenil. This was noted by the eye doctor and then forwarded to the rheumy who reviewed the information.  The eye doctor was more alarmed than the rheumy was, but it was just decided it was better to try a different medication. To say it never occurs is misinformation and the eye exams are critical, especially before beginning the Plaquenil.
 
A doctor doesn't stop Plaquenil unless there is some type of documentation stating otherwise. It is up to the patient to be proactive in their eyecare, and make sure their eyes stay healthy while on Plaquenil.

Esky
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/19/2009 5:12 AM (GMT -7)   
Hi all,

I've now started taking the Plaquenil at 400mg a day (many thanks for the dosage advice).

At the moment im just coming off a big flare, which normally takes 8 weeks of prednisolone therapy to stabilise, so it will be interesting to see if the Plaquenil assists berfore the 8 week mark.

I have been able to gradually wean off the prednisolone completely twice before, and if the Plaquenil helps control the flares then my new goal will be to replace the indomethacin with a less toxic NSAID like Naproxen.

So thanks to all your help I have renewed hope and a new goal for Easter.

I intend to stick around and no doubt pester you with more questions soon, but for now I cant thank you enough. :-)

Best wishes,

Marc
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