Anyone on Low Dose Prednisone?

[Sharon]

I still have yet to find any medication I can tolerate and that actually helps in any way other than Prednisone.
I am currently down to 3mg daily and the terrible joint and tendon pains have returned along with allergic reactions such as itching all night long and gastro issues. It never helped with dryness issues to begin with.
Still, I can't imagine getting off of it entirely with nothing to replace it.
I was doing better even on 5mg.

Questions for those on Low Dose Prednisone therapy:

Do you take it on a daily basis?
What benefits do you get from the low dose?
What are the risks of being on a low dose long term?

Such difficult decisions need to be made with this condition...
I'd appreciate any answers that may guide me in making the best one I can!

[A Mom on Spin]

Sharon,

I am currently weaning myself after almost a year on LDP while I was trying different DMARDs - methotrexate, arava, and imuran- the imuran causing me to get sepsis and end up in septic shock.  I literally almost died from a rare reaction to imuran, wiping out all of my white blood cells so I couldn't fight an infection.  As a consequence, I have begun to think twice about medications I am taking.  While still taking plaquenil and gabapentine, I have decided that I would rather live with that pain than do damage to my body, or worse.

My rheum would like me on 10 mg of prednisone- which eliminates my joint and muscle pain, as well as my carpal tunnel syndrome.  I am not an expert in the medical field but I worry about the long term damage it would do to my joints if I remain on it. 

I also admit have a weird curiosity to see/remember just how bad the pain was before I started what I thought was the miracle drug, prednisone.

Liz

[Sharon]

Thanks for your response Liz,
I know what you mean about rare reactions to meds...I have also had some strange and awful ones, though nothing really life threatening like you've experienced!
There's a catch with the Prednisone: Without it the inflammation rages on and can damage joints and whatever else,
with it other forms of damage are being caused by the med itself.
Talk about being between a rock and a hard place....
7mg and lower is considered "low dosage" from what I've read.

[Carolina]

I am on low dose Medrol.  Medrol is a version of Prednisone.  5mg of Prednisone = 4 mg Medrol.

I take 2 mg Medrol daily for two weeks, then every other day for two weeks, and so on.

I also take 60 mg of Cymbalta which is on label for nerve pain, which helps my joint pain as well.

And I take Gabapentin which helps so much with nerve pain.   It stops the itching, burning stinging of my small fiber neuropathy in my hands, face, arms, hands, etc.

As if you can perhaps return to 5 mg a day, or alternate 5 with 3, or even just take 5 on alternate days?

Alternating seems to be less stressful on your adrenal system, as well.

Please consider the many options available.  For example, are you taking Plaquenil?  (I can't see your medications list, so I apologize in advance if it is listed).

Hugs,  Elaine

[Sharon]

Thanks for your response Elaine,
My pain doesn't stem from neuropathy so I haven't tried the Cymbalta or Gabapentin.
I tried Plaquenil in the past and had an awful reaction so I had to stop taking it.
There is one NSAID that helps, but only if I take it very infrequently.
I'm trying to get approval for a biological drug but my insurance keeps on refusing the request.
So right now I can't think of any alternative to the Prednisone, though I would love not to need it.

[ignatz]

I take 5mg/day. Its been the only thing that's helped me with my hyperacusis, I also haven't had as many flares since I've started taking it. I'd probably find out its helping in other subtle ways if I quit taking it but I'd per

At 5mg I haven't had any of the immediate side effects like weight gain or 'moonface'. Years and years down the road there might be a problem with brittle bones but I'm ok with that. My understanding is that medrol has fewer long/short term side effects than prednisone so if you can get that it would be best.

My first rheumy flat out refused to give me daily prednisone at any dose btw. She said the only thing she would prescribe is plaquenil. hmmmmm, ok bye. 

[Sharon]

Thanks ignatz,
You're right- seems Medrol is safer long-term at least as far as effects on the liver.
They only have where I live in injections and infusions and not in pill form.
Perhaps I can import it if I need to be on it long-term.

[Carolina]

I have osteoarthritis, rather severe, and gabapentin works on that pain, as well.  Same for Cymbalta. In fact Cymbalta is on label for the pain of arthritis and fibromyalgia.  Pain is pain, and usually nerves are involved.  I would suggest giving Cymbalta a try, if you have not, and if you can tolerate it.

Hugs,  Elaine.

[KatieB]

Hi Sharon,

  I take 9mgs of prednisone a day and can't seem to get much lower. I too almost died from imuran, same story. I ended up hospitalized with sepsis, and my bone marrow and immune system shut down. It took two blood transfusions before it even started to improve and five days in the hospital before I could walk around without my o2 levels dropping way down. Ever since then, I've had a foot that drags when I'm tired. I seem to get those rare side effects too!
   Leflunomide makes my liver enzymes rise, and Methotrexate gives me horrible migraines, although it makes my blood work look great... My father has rheumatoid arthritis and has used methotrexate for years without problems, but I'm afraid of the reactions I get from these medications. I want to try low dose naltrexone, but my doctor doesn't really think it works for inflammation. He says it can be very helpful for pain but he wants me on something that is more proven to fight inflammatory conditions first.

  I don't know what the answer is, it's so frustrating!!

  My doctor has told me that prednisone is just a bit unpredictable.  Some people can be on it for years and be ok. Others have trouble with osteoporosis, diabetes, or glaucoma, to name the main ones I worry about. At this point we are just monitoring and keeping a close eye on things. I just went and got my first bone density test today, so hopefully that looks good. I think that's the best we can do. Try to find a place where we can still function, and minimize the risks, as best we can. I get the tests he recommends, and take my calcium and vitamins. 5mgs isn't too high though, that's actually the level he would like me to get to.

  Good luck, and I hope you find a level you are comfortable with.

[Sharon]

Elaine- Thank you for this important information. Right now I would prefer to treat the source of the pain
rather than covering it up, but I will definitely keep this in mind in case I reach the point of no choice.

Katie- I agree with you- all of the meds have terrible, toxic side effects.
I tried LDN and had a bad reaction to it as well, though some seem to do well on it.
I'm currently fighting my insurance for a biological drug which I believe is our best shot.
Maybe you could look in that direction as well.