Maintenance dose
Posted , 16 users are following.
A really silly question I know, as each maintenance dose is obviously individual, but I wondered if you would mind sharing your maintenance dosage? I am again really struggling having dropped ( very slowly to 6.5 ) on recommendation of my lovely GP who wants me to keep challenging myself.
My hands are so uncomfortable, I hobble like a really old lady and the arm itching is keeping me awake for a large proportion of the night! OH quite rightly is encouraging me to go back up and I do remember last year Eileen, when I was desperate you said you were on 9mg.
I am reluctantly coming to the conclusion that I need to concentrate more on a maintenance level rather than insane drive to get off pred .
I am beginning to wonder that for me at least that I need to be even slower than everyone else or just reach and stay at a level that makes life ok!
Would love to hear you valuable comments.
0 likes, 30 replies
gapi jillian92038
Posted
My 2nd flair since 2013, I started on 15mg going to 12.5 in a month for 4 weeks, then 10mg - 4 weeks and next week to 9mg - 4 weeks. Then a Dr. Visit for labs and evaluation.
I'm lucky so far from the reports I see here. Shoulders and hips. After being idle I feel reminders but once being active no pain at all.
jillian92038 gapi
Posted
Well done! just keep going - but slowly!
I am unfortunately on my third flair after sailing through my initial decrease when I managed to get down to 3mg without a problem. I suggest you listen to the excellent advice on this site and go slowly - even more slowly than you think you need.
Hope it continues to go well
EileenH jillian92038
Posted
Silly man! You aren't challenging yourself, you are challenging the PMR and since it is the boss and bigger than you and you have no means of controlling it besides pred - it bites back.
You aren't going to be slower then me. I have been down to 5mg, briefly 4mg, but had a flare and had to go back to 15mg to manage everything associated with the vasculitis. I've had PMR for 15 years and been on pred for 10+ years. I have been back to 10mg since the summer - but have had to add a bit recently as it also plays a big role in managing the atrial fibrillation the PMR caused.
"... or just reach and stay at a level that makes life ok!" - that is what you are aiming for. However slowly you reduce nothing will get you to a lower dose than you require to manage the inflammation while you wait for the underlying autoimmune cause of the symptoms we call PMR to burn out. That can take anything from a year to 10 years or more. At 10 years 40% of patients still require a dose of pred, mostly low.
Where was the last dose at which you felt well? Go back to it and tell your GP why. Quality of life is all - and for that you need the amount of pred you need. No ifs or buts.
jillian92038 EileenH
Posted
Oh thank you Eileen - you are like a lovely warm bath to me - a super calming influence!
I too have started the heart palpitations ( I was thinking this was result of Pred rather than PMR ), which don't help when I am lying awake with intense itching !
I am continually swinging from trying to reduce the meds to feeling hang on I need a life!
I actually quoted you at lunch to my OH ... Eileen says ' what is the point in being on meds if it isn't controlling it?
I just wondered if there were many of us out there that were living a fairly pain free existence and if there was an average level of maintenance .
Thank you again Eileen I really appreciate your wise words.
krillemy jillian92038
Posted
So itching and heart palpitations are also symptoms of PMR??? I have that and thought that is was due to something else alth
ough it does go away with pred.
rapha jillian92038
Posted
jillian92038 I am confused and shocked. i just posted I am on 1/2 mg pred a day and I read about palpitations ans itching. I have terrible palpitations since Spring this year. My friend called an ambulance for me thought I was having a heart attack but para medics said it was an anxiety attack however I was not anxious. I get very itchy particularly my shoulders. Could this really be the pmr? My bloods are fine although every so often I get aching legs.
EileenH krillemy
Posted
Not so much symptoms as things that go along with PMR!
jillian92038 rapha
Posted
I am no expert but my personal experience is:
Itching- started in the September after I was diagnosed with PMR and started Prednisolone. The itching was so intense that I thought I had contracted something from a cheap motorway hotel up through Europe! I treated myself and long suffering half for scabies to no effect. My doctor didn't have a clue and gave me paraffin wax for dry arms. Good old google research showed I was suffering from Brachioradial pruritus ( Itchy arms in Latin) caused by reaction to sunlight. Maybe a coincidence but the last four years between September and Christmas has been trying ( understatement of the year!) This year without doubt is the worst.
Palpitations- a new one to me this year but I sometimes feel as if my heart is thumping out of my chest and I feel quite poorly although when I take my pulse it is normal! Result of PMR or reaction to Prednisolone or just old age.
I just know that the more I try to reduce it gets worse!
Do you mean you are on only 1/2 mg? If so you are doing really well keep going!
rapha jillian92038
Posted
yes only 1/2 mg a day now but not sure when to stop altogether!
EileenH rapha
Posted
Did they do an ECG when they arrived? Were the palpitations still happening when they did it? Have you seen anyone then or since?
The autoimmune part of PMR can also damage the electrical cells in the heart and lead to arrythmias - irregular heart beat as well as tachcardia or bradycardia (fast or slow heart rate). Mine was much better at higher doses of pred but returns at lower doses.
Itching was a problem for me in the early days of PMR but it disappeared with pred. Part of it was an allergy to wheat starch, NOT gluten, I can eat other gluten-containing grains and I get a bit of itch if I decide something made with wheat is worth itching for! Loratidine helps a lot - hayfever tablets, available from chemists and supermarkets in the UK (generic for pence from Lidl, Boots charges a lot for the same stuff).
maureen49480 jillian92038
Posted
i was prescribed 15 mlg but it wasnt enough. i went to 20 but couldnt function through the day.
my doctor gave me a supply of 1 mlg tablets and i increased to 16 mlg. .Have had to increase 17mlg and that is working for me.
I have to get up early and take meds before i get stiff and in pain so about 7 am. i have found i am having more good days by doing this. if i lie in i am finished for the day.
jillian92038 maureen49480
Posted
Interesting! It is almost as if you need to get ahead of it and show it who is boss. Keep going as you obviously have the upper hand at the moment. Strange I am the other way- if I am lazy and don't do much I can cope but heaven help me if I try to have a normal life! Take care - chin up!
Kelletto jillian92038
Posted
I am grateful to the replies stating the problem with reducing dose, which we all feel in different ways. Down to 4 over 5 months from 10 was slow but easy.
Down to 3, and alternating 3 & 4 took 3 months. I am starting 2 1/2 alternating with 3 next week and will come back with results, Certainly alternating simplifies the transition. Good luck, we all hate steroids.
Mike.
EileenH Kelletto
Posted
I don't - pred gave me my life back - and continues to do so.
Michdonn jillian92038
Posted
Jillian, I started on 20mg got down to 7mg had a flare, following my doctor's recommendations. Then the doctor did not want to increase my dosage to quickly to control the PMR inflammation. I ended up in a wheelchair and on 30mg for 6 weeks. Still tapering from 30mg currently on 3 tapering to 2.5. My PMR journey has been made more painful and longer by not controlling the inflammation.
Good luck be careful! 🙂
jillian92038 Michdonn
Posted
Oh poor you! That is not acceptable. I think the thing I am learning after 4 1/2 years in is that most GP's don't know a great deal about PMR and we need to have confidence to challenge what they say. There is no way you should have suffered this. I presume this was GP not Rheumy?