Prednisolone Alternatives/ complementary therapy

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

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

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

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

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.

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

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,

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!

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