I was doing well reducing prednisone slowly (was at 20.5 and then got bronchitis and things went down hill. Hung in there for two weeks but could barely function.
Back up to 24mgs from 20mgs for 4 days now. Finally feeling better.
Is there a protocol for how much to bump and for how long for colds, unusual stress, surgery (am considering cataract surgery).
The side effects are awful as you all know so I’m keen to taper back.
Any thoughts on what mgs to do now? Have I been at 24 for too many days to jump back down to 20.5?
Thank you
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kellykel
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I believe you can reduce down again, after an increase, within 10 days, without too much grief. Depending on the nature of the increase (flare, stress, etc), some folks add 5mg to their existing dose for relief. I have increased a mg or two when travelling and on special occasions (step son’s wedding, Halloween Dance), and went back down to original dose without a problem. I’ve only had one cold while on pred this last year and miraculously all of my PMR minor aches and stiffness disappeared??
I’ve been told I will get hydrocortisone flush (IV) before and after my knee replacement surgery to replicate what the body would do in response to surgery. Others on here can comment on cataracts surgery and dosage.
Sorry to hear of your side effects. I can understand why you wish to taper off pred sooner than later, but best to taper slow (no more than 10%). Hopefully they will lessen as you reduce.
No - up to a week to 10 days is fine to drop straight back to the previous dose.
It is more significant for adding to a dose when unwell once you are below 10mg and there is a role for adrenal response to the illness. If it is just to manage a return of PMR/GCA symptoms then you need what you need so it is impossible to forecast that. I have never needed to increase my pred dose to cope with an infection - I tend to assume feeling rubbish is the cold or whatever and wait patiently for it to go away. Though to be fair - I have had far fewer colds while on pred than before.
I am interested in this, I am recovering from bronchitis, chest infection 2 lots of antibiotics. Was on 9.5 before, went up to 15 for a few days because jaw symptoms returned, got back to 10 o.k. but now on 9.5 for 5 days struggling a bit, no GCA but PMR, stiff painful shoulders and hips. Tramadol and paracetamol for fracture from coughing make no difference to stiffness and pain there. Rheumatologist last week just said I should be on less Prednisolone by now! I think the DMARD has made me more susceptible to colds as I hadn't had one whilst on pred until the dmard since when I've had 2 bad goes in 6 months.
A good rule is NEVER to reduce when you are unwell although I do see why you tried the 9.5mg again as that is where you were.
Point out to your rheumatologist you are YOU and NOT your neighbour and it is your pain. Not everyone is able to take a DMARD and reduce the pred more quickly, or even at all. And of course that is why you have had more infections - and probably why you haven't got lower over the last 6 months. It took me over 4 years to get below 10mg for any length of time. PMR has its own rules - and the rheumaotlogist and his pred+DMARD won't change that. All they do is manage the inflammation - the actual disease process is there and ongoing. The median duration of management of PMR with pred is 5.9 years - which means there are also people for whom it lasts even longer.
Your information is extremely helpful. As a younger, normal inflammation scorer, and not having a biopsy before prednisone treatment, I only have a clinical diagnosis of GCA/PMR. So, I often get an almost contemptuous tone as to why I am having so much trouble reducing, and sometimes why I’m on it at all. I’m 2 years in.
With the textbook symptoms of severe GCA and milder PMR, I feel alone trying to manage my days so I have some semblance of a life. Prednisone is the only drug that allows some days of that.
Your constant advice, along with other experts, has been the most helpful resource than all the “swanky” doctors I’ve seen.
Prednisone is such a mystery to me. I try reducing as DorsetLady suggests, and/or never more than 10% a month.
Yet, mysteriously, after a run of a few “ok” (I say ok because the steroid side effects are very challenging for me) weeks or months, I go into a completely odd and stunning lack of energy in my body.
After increasing the dose a few milligrams for 4 days, I come back to life.
It’s baffling everyone. And depressing to me, as I feel I’m between a rock and a hard place.
Since I’m not “responding” to steroids as well as I am expected to, I feel in no-man’s land.
More prednisone-more capable, but buzzing all day, lack of sleep, etc. etc.
So, thank you. I keep going sometimes because of help like yours.
"As a younger, normal inflammation scorer, and not having a biopsy before prednisone treatment, I only have a clinical diagnosis of GCA/PMR. So, I often get an almost contemptuous tone as to why I am having so much trouble reducing, and sometimes why I’m on it at all. I’m 2 years in."
I don't meet the contemptuous tone from my doctors but then, they aren't in the UK or USA, but other than that I could have written that except I'm 15 years in ... (Sorry!) And I have worse PMR symptoms with mild GCA ones. But because of my refusal to compromise I have a pretty good QOL.
After 2 years you still have plenty of time before anyone should think it baffling - the median duration of management of PMR is 5.9 years - and that comes from top rheumies in the field at the Mayo:
Oh my. That’s sad to hear for you and me, but incredibly validating. Before this hit, I was a very healthy, vibrant, super active, long term worker and Mom.
Now I’m a ghost of all that.
Thank you for telling me you connected with my description.
Hi kellykel, its not the doctors who have to live with the conditions or the pred- so i throw that contempt back at them, along with my usual cattle prod for good measure.
I was thinking last night how much we sometimes attribute to pred when its actually the pmr/gca just reminding us its still active. Sadly, many if us are never left on the best dose that controls inflammation long enough. So the rollercoaster rude is made wirse. I may be lucky in my tolerance of pred. I had pred head, moon face and hump plus facial hair like elvis in the first 2 years. But i think the fatigue, pain and stiffness i experienced during that period and during the past month has been PMR. After mulling over putting pred up from 6mg to 7mg, i finally did as i forgot to pick up my dmard prior to easter. This us my 4th day at 7mg and i feel very different..in a good way. I will introduce the dmard again for a month at 6mg- perhaps not sensible, but i need to learn my tolerances around this dosage and whether the dmard really is helping me reduce. Evidence looks to the contrary, although i overdid things a couple of weeks ago and sometimes take a while to bounce back.
I am not a good sleeper and seem to have little sleep most nights. Thats the only bugbear of the 7mg i think its made that issue worse. However, i also have another drug that causes insomnia that I was recently prescribed for neuropathy. As my sister tells me...(& Others on the forum too) ...its got to be about quality of life vs side effects.
Its mycophenolate but the point still stands! I am nervous about it and want to see if i am recovering from my travails and would feel better anyway. I felt about the same as now prior to all that kerfuffle at 6mg and dmard. I will give my body a month to see what it says unless it completely obvious. Sometimes i have to "do" to learn but i can see the benefit of 7mg alone.😜
If i have to go back on dmard in a month i have to do the whole building it up in my system which was awful. Since i have been at full strength been few side effects that i can id.
There isn't a lot of backing for the use of mycophenolate - it isn't generally thought to work in the same way to potentiate the pred and it doesn't work itself for PMR. I think it is fair to TRY any of these things provided you don't suffer any adverse effects but if it then makes no difference - why add another dollop of chemicals with attendant effects to the mix?
I agree. It is first time, in 4 attempts i have got into single figures without massive flare (i get it😂 flare now). I have a deadline in my mind for deciding.
I am not usually so reticent about going up, but i have been stable for 7mths at 6mg and think its a problem i brought on myself by not pacing and the stress of the street fighting 😂😂😂 i dont mind being at 7mg at all. Just trying to find the balance.
Thank you for the encouragement! I would argue with the rheumatologist, but she seldom lets me get a word in, and in a 15 minute appointment there isn't much time anyway.
I would try printing the articles and handing her copies asking her to read and consider the study evidence. Otherwise - a second opinion? You say prednisone so I assume you are in the USA?
I don’t think there’s any need to increase Pred pre cataract operation, I didn’t- and it’s not like a joint replacement op. In fact you shouldn’t increase for that either, leave that decision to the anaesthetist.
If you are stressed about your cataract surgery then discuss with surgeon beforehand.
Others have answered your tapering questions so I won’t add anything,
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