New to this forum! I am an otherwise healthy 67 year old male (apart from some osteoarthritis), who has experienced GCA and PMR over the past two years. During the GCA phase, my prednisone dose was 55 mg/d.
I have been tapering down fairly successfully, until recently. I am now at 2 mg/d, but experiencing some uncomfortable symptoms:
1. general lethargy and malaise, including increased osteoarthritis pain.
2. upset stomach.
3. ringing in ears.
I think these symptoms are manageable at this point. My questions are:
1. Should I continue to "play through" the pain, hoping that they will go away? Is that a reasonable expectation?
2. I have been taking 400 mg ibuprofen per day to help mitigate the pain. But I discontinued because of the stomach issues. Any alternative OTC pain relievers I should consider?
Many thanks in advance for any assistance!
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Marinescience
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Would say your malaise and lethargy could be either too low a dose or maybe Adrenals struggling to get going again - or both.
I found OA pain returned once on low doses of Pred - higher doses are apt to mask all pain.
Not sure on stomach issues....unless they related to ibuprofen.
Ringing in ears could be GCA related.
No you shouldn’t play through the pain- invariably if that’s because dose is too low, they will just get worse.
Ibruprofen should not be taken with steroids - paracetamol (or Tylenol if not in UK) is okay though.
I would hold where you are at the moment and see if things improve - but you may find that you need to increase a little. What dose did you last feel ok at? Maybe try going back to that.
You do need to find out what is affecting your ears though, just in case it is GCA related- it does and can last a lot longer than 2 years.
Tinnitus can be a feature of poor adrenal function - like the other symptoms you describe. How quickly have you reduced from 5mg and at what stage did these symptoms appear?
Were you OK at 3mg? If so, I would go back and give it a couple of months at that before trying again - let your body catch up and it may work better. One very good rheumy likes to keep patients at 5mg for up to 9 months before continuing the taper to allow the adrenal glands to wake up slowly, 5mg should be low enough to do that.
At 3mg it is worth asking the GP about a synacthen test - and definitely a basal cortisol test, blood taken at 9am after 24 hours without a dose of pred (i.e. take pred one morning and wait until after the blood test next day to take the next dose).
I really appreciate your thoughts. I have been tapering 1 mg/day since the 10 mg/day level, with 30 days at each step. I seemed to be doing fine at 3mg/day. If my problems persist, I will revert to that level.
I see a lot of reference to 0.5 mg increments in this forum. In Canada, that tablet dose is not available. I am considering using smaller decrements than 1 mg, so I guess I could simply use a knife to split the pill. Is the use of half milligram increments common in the UK?
It is possible to get 5, 2.5 and 1mg tablets in the UK for both enteric coated and plain prednisolone. That means you can combine tablets to achieve 1/2mg decrements down to 2mg. Then you have to resort to a pill cutter for the last bit. It's the forum members who support the smallest drop possible. 1mg is fine if it works for you and it is also possible to use slowed tapers to make a 1mg drop easier but there are still people who struggle with 1mg even with a slowed taper. The slower the better at these final stages. A basic rule is not more than 10% of the current dose - 2mg to 1mg is a 50% change of dose and can be something of a shock to the body when done from one day to the next.
I've been splitting (Canadian) 5 and 1 mg tablets for years. You can use a knife or get an inexpensive cutter from a drugstore. Mine actually gave me a free one with some sort of drug company logo on it (now long worn off) which works fine.
This really sounds to me like your body is struggling on insufficient cortisol. I would advise you to get in touch with your doctor about these symptoms, as a matter of priority, you may be in danger of an Adrenal crisis. Even the stomach pain is a sign ( the adrenals are situated next to the kidneys ). You should seek a Synacthen test that will tell you whether your adrenal glands are capable of working after being “switched off” due to steroid treatment. Good luck!
I’ve been where you are - sounds like 2mg is too low for you. I’d go back to 3mg and stay there until symptoms have settled BUT you should see your doctor to at least report back. As already said the 1mg drop is too much particularly with your symptoms. I found 3mg was my optimum dose and stayed there for 18 months and felt normal. Sometimes you can’t get lower and that dose isn’t causing harm. My well known Rheumie doesn’t hide the fact some may need a low dose as maintenance for life. Good luck.
Thank you, certainly it is become clearer than a continuing low dose may be necessary. I am still hoping that won't be the case, but I'll keep trying for a while,
I agree with everything said here. I was never able to reduce by 1 mg at a time, 1/2 mg at higher doses and .25 mg now that I'm at 3 mg Pred. I believe somewhere on this forum someone mentioned that you should reduce by 10% of your dose, which gets harder as we reduce to low doses. I also use a pill cutter. Below 4 mg Pred I found low doses (50 to 100mg) of Ibuprofen before bed helps with the stiffness in the mornings. My doctor said low doses should be fine. She considers high doses 600+ mg per day. I also found that liquid Ibuprofen is gentler on my stomach than the pills. Maybe it's in my head? In any case, discuss it with your doctor and if you felt better at 3 mg you should increase your Pred. You have been reducing very fast, which is great, but you need to be comfortable and 3 mg is considered a very low dose. Good luck and let us know how you make out.
My pain is from OA, osteoporosis, scoliosis (developed late in life), and slipped discs. I think that being diagnosed with GCA in Feb2020 and beginning on higher doses of prednisone helped mask the pain. Maybe now that I am down to 4mg pred (and TCZ), I am feeling the OA pain.
Like many in here, despite OA, I was physically quite active and strong until GCA set in. From 2016 -20018, I was taking ballroom dance classes, sometimes dancing for 3 hours at a time and even competing a little. (Hated that.) Physical therapy (on land and in water), and chair yoga helped some. I think the synergy between the PT and holding the proper posture for dancing kept pain down . I had to stop the classes because it was just too expensive. Also discoveredI had sufficient hearing loss to need hearing aids, and that the dizziness was from a vestibular disorder linked t hearing loss. No wonder I'd get dizzy on turns when I did not have my partner's hand. I've had tinnitus for some 13 years, know t's not coming from my ears, and usually don't give it any attention.
My lower back and flank pain now show up late in the day. (My rheumatologist says that's why she says it's OA rather than PMR, which tends to be there more in the morning.) I can be doing something innocuous and suddenly the pain is enough to make me get off my feet - NOW
I have not been able to take Ibuprofen, aspirin nor any other NSAIDs for years as they cause severe gastric inflammation. Both my internal medicine doctor and my rheumatologist suggested turmeric capsules that also contain black pepper and ginger. I am not noticing any improvement.
I now have 2 solutions, which, if used together, help prevent the pain. One is oral, the other, topical.
1) Tylenol- 1000 mg 3 times a day, which both internal medicine doctor and rheumatologist say is safe. I take 2 Midol first thing in the morning. ( It's for PMS and contains acetaminophen, caffeine and pyrilamine -an antihistamine.) I take 2 Tylenol (500 mg each) in the early afternoon and the same at bedtime, plus magnesium. I found I feel better all over during the day when take my prednisone last thing at night.
2) Topical: Voltaren (generic for Diclofenac) cream. It used to be by prescription only, but found OTC now in pharmacies here in US and on Amazon. It's an NSAID that bypasses the GI system.
or..
CBD cream -recommended by the rheumatologist.
This combination, for me, at the moment, is more effective at prevention than treatment after pain sets in.
Question:
Since those of us with structural issues, like OA, will still have those problems as we get lower and lower on prednisone, should we be altering our pred doses and wondering abut adrenal insufficiency? Even when our adrenals are back alive and kicking, won't we still have the pain from OA?
You will - and there are a lot of doctors who can't tell the difference and assume everything that reappears is OA!
Are you sure your low back and flank pain is OA? Sudden pain as you describe counds more like muscle spasm - I was told my back pain was due to "wear and tear", aka OA. But it wasn't, it was entirely muscular. It can stop me in my tracks, it is excruciating. Management of the muscle spasm cures the back and flank pain.
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