Returning From My Prednisone Vacation

[TomSC]

I am returning from my prednisone vacation. I think I’m going to miss it. Let me explain. Nineteen months ago, my GCA symptoms began. Prior to that, I was having increasing neck pain from degenerative disk disease in my neck. One of the biggest causes of my neck pain came from using the computer. I was also finishing my master’s degree at that time, and spending a lot of time on the computer doing research and typing papers.

The GCA headaches were unbearable and almost caused me to drop out of the program. It took more than a month to diagnose GCA. Once diagnosed, the prescription for 60 mg of prednisone knocked out the headache symptoms within two days. I also started to be able to spend hours on the computer without the previous neck pain.

Over the next nineteen months, I have been slowly reducing the prednisone. Two weeks ago, I reduced from 4 mg to 3 mg per day. That’s when the neck pains started to return in earnest. Well, I hope I can get off the prednisone completely in the next few months, but realize my prednisone vacation is over. It looks like it’s time to prepare to return to my normal life without prednisone, meaning the return of all the other aches and pain.

[Celtic PMRGCAuk volunteer]

Tom, spare yourself the agony and increase that Pred dose back up to wherever you were last comfortable - 5mgs possibly? It isn’t unusual to experience flares in the first 12 to 18 months of treatment, and you are just outside that range. If you increase back up and get relief, you might find it more successful to try reducing in just half mg decrements the next time around. Around the 3mg dose can often prove a stumbling block - it did for me! Importantly, tackle it now rather than let the inflammation run away with itself which could lead to you needing a much higher dose to get on top of it. Good luck!

[DorsetLady PMRGCAuk volunteer]

Hi Tom,

Like Celtic I’m a GCA survivor, and in my opinion at only 20months your GCA is still quite active.

As recommended, go back to a level that gives you pain relief, and then try tapering again, maybe this time by 0.5mg steps. There’s no rush, you will get to zero eventually but not until your GCA is in remission- and you’re not there yet.

In total my GCA lasted 5 &1/2 years, on steroids for 4 & 1/2 - so you’ve a way to go - best for it pain free in my view!

Good luck

[SheffieldJane]

My computer use in my previous job led to cervical Spondylosis, and very bad pain when I started doing another kind of more person centred job. The Prednisalone also killed that pain and this, coupled with different habits seems to have just about done the trick. You have reduced very quickly and are now at a dose that has negligible side effects. You could allow yourself a little more Pred if the pain gets bad. Also try to have frequent breaks from the screen and have your work station ergonomically assessed. I didn’t realise how important all this was. I used to proof read long documents with my head hanging back - idiot!

[TomSC in reply to SheffieldJane]

Thanks

I understand exactly what you are saying. I had a fusion done on C5/C6 back in 2005. Still I have had continuing and increasing neck pain over the years since. More recent MRI's showed increased pressure on the disks above and below that level. So I know what's coming. I have to admit though, that one of the unexpected side effects of the prednisone was to temporarily provide a lot of relief to my neck issues. I guess I just forgot about them till recently. Fortunately, at 68, I am retired and have completed my educational program.

In addition to your suggestions, I have had a lot of luck placing a tennis ball between the sore spots on my back and the wall and moving around in a massaging motion. Also, I created a hook-like arrangement with small diameter pvc pipe that allows me to get at and massage harder to reach spots on my back and neck.

[Hidden in reply to TomSC]

Part of the increased pain could have been GCA coming on. I know my neck pain increased dramatically pre dx. And like you have have had degenerati9n and bulging discs. I had Spinal surgery a few years ago and think the rest of my back and neck suffered in the end. Back to my point. The pred allowed me to move my neck for the first time in months when prescribed 15mg for PMR. I am not pain free but it was definitely better. Your initial dose was much higher and would has eased other non GCA pain but a small increase will allow you to determine if it is part of GCA hangover. A small amount can make a big difference at low doses.

[TomSC in reply to Hidden]

Thanks. I have wondered if it might be worth staying on 4 mg indefinitely if it helps the pain, no matter what the cause is.

[Hidden in reply to TomSC]

I have made peace with the idea that I may get stuck at a low dose. Up to 7mg or so you are merely replacing what you might naturally produce anyway.

[Hidden]

Hmmmmmm? I am not sure your body agrees that the Pred Vacation is over, TomSC!

Maybe the pain returning (as you reduced from 4 to 3) is your body's way of saying, "HEY TOM.. not so quick Buddy! I'm not ready to get off the Pred 100%... I think we should sit at 4 or 5 for a bit"

Just sayin...

[PMRpro Ambassador]

If 5mg of pred or less provides good relief - there is absolutely no reason at all why you shouldn't continue taking it. It is a very low dose, less than the amount of natural corticosteroid cortisol which your body requires daily to function. You have toyed with idea - I'd implement it. As we have just been saying on another thread - qulaity of life is all. A few years on a low dose of pred that are pain-free are worth a LOT!

As has already been said - flares are common in the first 18 months or so - and almost always because of reducing the pred dose too far. You aren't reducing relentlessly to zero, you are looking for the lowest dose that gives as good a result as that starting dose did. Sounds like you have found it.