I'm down to 12 mg prednisone after 1 mg month taper.
Last Spring I had IV prednisone due to GCA . I feel defeated to have to go up again. What mg should I try to get this under control. Extreme fatigue, pain, treated infections of uti, sinus. Throat very sore. Please help.
Hi EmmaLaura,
Sorry to hear you're feeling so bad.
Usual recommendation is to add an extra 5mg to the dose you last felt okay at - so if you felt okay at 13mg, then up to 18mg. If that does the trick, then theoretically you should be able to get back down to 13mg relatively easily. However, you must not continue to taper relentlessly if you have symptoms. Not sure what dose you actually started at, but would guess you may have reduced too quickly and therefore gone past the level of Pred you need.
As long as you have GCA you need the correct level of Pred to control the inflammation, which is all it does, it's doesn't do anything for the GCA itself, nor the fatigue, you need to try and manage that yourself.
The sore throat is probably a side effect of Pred, see your doctor about that. The pain is certainly not enough Pred.
Relentless is the operative word for me. I have been pressing on with 1 mg a month taper but haven't felt well in a long time. Honestly I don't remember a felling good time. What to do?
Hi again,
You really need to understand GCA - and or PMR- to know how to cope with it. Unfortunately most doctors don't seem to, including the specialists, and neither do we as patients at the beginning.
I'll try and explain simply.
These illnesses seem to appear out of the blue, but most people seem to have had some stress prior to their arrival - might be accident, operation or stress with job or caring for a loved one.
They have a lifespan if their own - you can't take a course of tablets -as is the case with some illnesses - and they're cured. There is no cure, only can the inflammation caused by the underlying illness be controlled - that's the Pred's job. They come, hang around for anything between 2-6 yrs, sometimes longer, and then go. Average is about 4 yrs, although many doctors say 2 max! wrong!
Initially you are given a large amount of Pred to get the built-up inflammation under control. You then have to taper down, in an appropriate manner (are you listening doctors?) to reach the dose you need on any particular day.
Your body still goes on producing cytokines every morning, which is what causes your pain and inflammation because your own immune system has gone awry and is allowing them to cause havoc. That will happen, until the GCA goes into remission, and your own immune systems gets back to normal.
So, back to earlier post, you can't reduce relentlessly ignoring symptoms.
Most people reduce on a monthly basis, although some Rheumys do try a 2weekly plan. Plus it is not recommended that you reduce more than 10% of your current dose - so at 20mg that would be 2mg - some do 2.5mg, depending on tablets issued and how you feel. Once you get to single figures many only drop 0.5mg a time.
The most important thing, don't reduce if you have symptoms, that indicates your inflammation isn't controlled, so things are only going to get worse.
Not everybody gets 100% relief from Pred, but you should get at least 70% - enough to get on with living. Plus you must do your bit as well, don't dash around like you did pre GCA, you need to rest. You still have the underlying illness!
We can't tell you what dose you need to go up to, but would suggest you ring doctor, if you can't see him within the next week or so, and maybe ask him about going back up to say 20mg and see if that works. You may need to go higher, but you won't know until you try.
I know it's discouraging, but you need to get things under control - there's no point take too little medication - you're getting the side effects but not benefits! No point in that!
Hope this helps. Take care.
Yes. I have a call into MD and appreciate , so much, your explanation. 🌹
Are you sure it is a flare of the GCA? It sounds more like an infection that needs treating.
To add to DL's explanation - the fatigue is part of the disorder but isn't helped by pred, it just relieves the symptoms. Fatigue has to be managed separately. There are some links here
healthunlocked.com/pmrgcauk......
which may make it clearer.
All of my rheumatology group are away at a conference , this weekend, with no coverage. Fortunately I have a rheumatologist at the Mayo Clinic in Jacksonville Florida USA ( who arranged for my GCA biopsy which was positive) whom I called and who suggested: 15 mg for one week, 14 mg for one week, etc. see if it works and go from there. I feel very relieved to be in expert hands . He said the back surgery April 17, 2017, and current infections probably activated the auto immune disease.
Flare or withdrawal
flare up
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Flare up ?
