Reaching lowest dose of Prednisone
Posted , 47 users are following.
I was diagnosed last November with PMR and started on 20Mg of Prednisone. It relieved the pain
immediately, and I have slowly been reducing the dose. I was on 8.5 mg on 3/30/14 and started using Eileen H's slow reduction method. I was in the midst of the reduction schedule and took 7.5 on 4/23. The next morning I was in agony. I took an 8.5 dose that day and wasn't completely better when I went to bed. However, this morning I woke with only mild stiffness that disappeared with an 8.5 dose. My question is how common is it to have a flare-up or does it indicate that 7.5 is too low for me. I really was hoping to get off of the prednisone. Any comments would be appreciated.
7 likes, 138 replies
alan20012 gloster
Posted
I was started on 16mg a day of Medrol in April May last year and reduced it to this level over three months approx. My CRP was very high even though I was on another steroid tricotil that did nothing to alleviate the problem and the reduction was over a period of 16 weeks when the metatraxate was supposed to take over. To be honest, I don't know if I have PMR - not diagnosed but the general symptoms sound depressingly familiar. My main problems are with hands and feet but the other muscle problems with PMR are there. If I don't have it then I appologise to you and the group for wasting your time.
You have, however, confirmed that the dosage is probably too low and have given me a number of options to follow up. I'm very much aware of negative effects of the pain killers and do have 2 monthly blood tests to monitor liver functions, etc. The French system is very commendable about all things medical and whilst my medical French is pretty good, especially about this condition, there is still a language problem.
The painkillers are all on prescription and within my doctors advised dosages.
Just one other thing if I may. I cannot see the links that you mention on your post to me.
I thank you again for your advice and will probably increase the medrol dosage to a more comfortable level.
On the plus side I'll be able to toss the javelin a little bit further although the blood tests might prove a problem in competitions. Sorry, my sense of humour is still trying to get out.
EileenH alan20012
Posted
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Even at prescribed doses they can still cause problems. One lady was persuaded by her GP against her will to take paracetamol rather than sticking at the current dose of pred since he thought her pain was arthritis rather than PMR. After just a couple of months her regular blood tests showed high liver enzymes - panic stations by GP and she was sent for an ultrasound. Nothing wrong - all down to the paracetamol.
Your reduction was too fast - even with methotrexate. I assume you are taking that for the RA but there is no real evidence it helps in PMR although a lot of doctors claim it is a steroid sparer. It certainly won't replace a steroid altogether.
Are you sure it was tricotil? I can't find it online - except a Turkish entry which says it is non-steroidal. The only thing that works for PMR is pred or one of its close relatives.
It is good that your sense of humour is still trying to get out - because if you can't laugh you cry and that just makes you feel worse.
Is Lodotra available in France? That might be a good alternative if it is. It is taken at night and helps greatly with morning stiffness - it also seems to require a lower dose to get a good result. I get it here in northern Italy and it is used in Germany but I don't know about other countries.
By the way - it is NEVER a waste of time - unless it is trolls and they are SOOOOO obvious!
alan20012 gloster
Posted
The other med I had was Tenoxicam (Ticotil). Sorry about the mis-spelling. And i see that it's non-steroidal. I'll look into Ledotra also. And check out the link.
Take care,
All the best,
EileenH alan20012
Posted
jacqui35798 alan20012
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EileenH jacqui35798
Posted
If Mobic worked for PMR-type symptoms - the chances are it wasn't the PMR we talk about here. PMR is just the name given to a set of symptoms, there are a lot of different causes and what we talk about here is a form of vasculitis linked with GCA. What is very typical is that PMR responds to moderate dose pred and pretty much nothing else. Some of what I call "add-ons" might do better on a high enough dose of an NSAID, but PMR itself rarely does.
kathleen_e gloster
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EileenH kathleen_e
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kathleen_e EileenH
Posted
EileenH kathleen_e
Posted
Nefret kathleen_e
Posted
If you've also got SLE - not to mention the other problems - then a request to your doctors/insurers for a syncathen test should not be out of place.
barbara75814 kathleen_e
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EileenH barbara75814
Posted
Symptoms can include:
Fatigue and weakness.
Anorexia.
Nausea.
Vomiting.
Weight loss.
Abdominal pain.
Diarrhoea.
Constipation.
Syncope.
Dizziness.
Confusion.
Personality change.
Irritability.
Amenorrhoea."
The one you would probably notice to start with would be fatigue and a lot of people do complain about more tiredness when they get to about 6mg and below - usually when they are trying to reduce 1mg at a time from one day to the next.
I was talking about this recently with one of the UK research consultants and she agreed that when patients find their tiredness increasing as the pred dose falls it probably is the body telling you to slow down while it catches up.
Barbara - I've answered this because Kathleen may not be followng the forum. This is an old thread.
Miroski EileenH
Posted
Hi Eileen, am just interested about this topic. My case is different, i've got Ocular Myasthenia Gravies. On remission for so many years now having a maintenance dose of 2x 50mg azathioprine daily and 2mg prednisolone every other day (been in this dose for so may years). Last June tried tapering my prednisolone down to 1mg every other day but its good only until mid August and started to feel uncomfortable but no double vision noted as what i had before as my first symtom. Only fatigue around neck and shoulder area, numbness in right arm, sometimes left and also hands and feet. Although feeling fatigue, my over all strenght is still there. Would you think all these is a sign of relapse or am i just being underdose now with 1mg? Adrenal Insufficiency??? I'd love to hear from you...
P.S. Before this problem set in, i was on antibiotic (cefalexin 500) due to tooth infection. And i was running 14K while i was on this antibiotic treatment. Like over a week now i increased my prednisolone to 3mg every other day and seems to be okay now with just a little bit of nausea.
Do you think i can still go back to my best dosage which was 2mg every other day? If so, until how long? Thank you very much!
EileenH Miroski
Posted
I really don't know anything about OMG but I would doubt it is adrenal insufficiency if otherwise you are managing well with 2mg pred on alternate days. No-one here can advise on dosages - just make suggestions for things that have helped ourselves or others with PMR.
I would say though that it sounds as if you have simply gone to too low a dose to manage whatever it is that gives rise to your symptoms. 2mg per DAY is a very low dose - never mind half of that. I'd accept the 2mg every other day. Did you tell your doctor how much difference the antibiotic made to you?
jacqui35798 kathleen_e
Posted
At this low of a dose, stay at that dose for 2 weeks or more, and then go down 1/4 for another 2 - weeks. SLOW because at this low dosage the ratio is greater of what you are dosing down by.