Increasing Prednisone Help

What a horrible experience.  I can't answer any of your medical questions except that I very much doubt that 5 mg is going to help you.  I would expect that nothing less than 10, and quite probably more by now, will be useful.  Can you just ignore your doctor and try a higher dose for a week or so?  The experts on this forum will suggest what they think would be a good level to try.  I assume you have 5 and 1 mg tablets in your house so you can easily multiply your dose by doubling or tripling, or attaining any dose in between?  I completely agree that there is a dearth of information about PMR amongst the medical profession.  I remained undiagnosed for over a year (in Canada) but in all fairness I understand that this is not uncommon in the UK either.  The UK benefits from density of population which helps with patient support, self help and education, whereas Canada suffers from having separate health care programs for each province and territory, as well as a widely dispersed population.  Also funding for organisations like the Arthritis Foundation is so lacking they can't even provide the advocacy we need.  Anyway, I really hope you get the help you need.  Are you in a community where you can go to another doctor?

First my sympathies - your doctor is not letting you work with you - you are the one who knows your own body and how you are 'feeling' and dealing. The idea is to reduce at NO MORE than 10% and leave gaps to see if your body is capable of dealing with this, it's only 'curing' the symptoms not the underlining problem.  This seems to be a 'problem' because most doctors etc. are desperate to get you down and off preds as quick as possible - bad move - PMR will come back to bite you again.  Shouting at them at least showed your concerns.  I hope they, and others, will listen to patients!!

You could ask them what is so awful about some patients remaining on a maintenance dose of Pred for life?  I am and I can't say it bothers me.

I agree with Anhaga, if the pain is as severe as you describe then 5mg may not help much.  I understand the medical services in Canada are complicated - my brother lives there - but is there not an emergency service you could call?

You have my sympathy. I too have a rheumatologist who makes these sweeping (unfounded) statements. It is extremely difficult to have respect and trust in a so called speciallist who knows less about your condition than you do yourself! Luckily, I have a very good gp who listens and allows me to take pred reduction at my own pace. Between her and this forum, I manage to stay just about sane (?!) I have decided to stop seeing the rheumy altogether and stick with the gp. I regularly scan the new research on pmr with interest. Pity the medical profession doesn't do the same, especially those who are managing patients with the condition! I totally understand you having the 'screaming abdabs' with the rheumy. I felt like that myself, although his outragious statements left me speechless! Last visit his parting words were "Next time I see you (three months), you should be off the steroids altogether"! I am currently stuck on 10mgs. Any reduction, no matter how slow results in much increased pain. I am therefore staying on this dose for a while before I try again. Good luck and take care, Debbie

Hello jo, pre diagnosis had pains on the outside bone of my left wrist and in both thumbs. My rheumatologist didn't poo poo this when I told him. As soon as I was put on prednisolone the pain everywhere went. When I suffered a flare just prior to Christmas last year the pain in my wrist and thumbs returned. When I upped my preds in response to my flare the pain went!!!! Yes, pain in hands can be down to pmr.

please look up the Bristol pmr plan. This plan is gold standard treatment in the UK. I was left on 10mgs for 6 months. Many of us once we get down to 10mgs then follow the dead slow and almost stop reducing plan and even then only reduce by .5mgs.

i'm glad you stood your ground with the medical professionals. When it comes to pmr, many no nothing about it, many know abit about it, and some like mine know a lot about it. Good luck, regards, tina

my GP urged me to get off pred in 11 months which of course was too fast. I relapsed and had to start over at 10 mg but luckily I discovered this forum at that same time.  It has been almost 2 years since my relapse and I've slowly reduced to 4 mg.

Now I only go to my GP to renew my pred prescription and I have totally taken over my pace for reducing.  I rarely have a CRP blood test as I just use my symptoms to gauge my pred reducing pace. This forum is invaluable for answering all my questions and because of my level of knowledge I don't need to ask my GP any questions and because I assure him I am reducing as fast as I am able, he seems ok with this relationship. 

I too  am in Canada.  There is a shortage of doctors in my city and many have to rely on walk in clinics as they can't find a permanent GP.  I need to be very diplomatic in dealing with my doctors office - tho sometimes it would be nice to vent my frustrations!

Jo, you have reduced very quickly to such a low dose. Is 5mg working for you yet, it can take a few days? If not go up to 10mg, that is a reasonable dose after less than a year. You should be able to get the pain relief you got when you were first on pred otherwise it is a bit of a waste of time.  As Nefrit says it is possible to be on pred for life, but so what. CRP at 7 is quite low, (normal is 0-5) but it has increased which does mean increased inflammation. Mine was 123 when I started and is 8 now.

I feel both doctors want you off prednisone asap and they have pushed me to the point of relapse. They are now talking about how some patients have to take a low dose for life of either prednisone or methotrexate. It would have made my life easier if as most of have said they just listened to the symptoms. They also advised 5mg may not work and i might have to go to 7.5 or 10. If they only realized how hard it is to reduce. Diplomatic is a mild way of putting how you treat doctors in Canada. They are overworked with our free health care system and too many people visit the doctor when they dont really need it. There is a 1 year wait to see a different rheumatologist. My Gp and rheumatologist are in the same system so they share all patient notes and will never disagree with each other. So good or bad health care your stuck with it. I also asked about a bone scan and they agreed to send me for one. I will give 5mg a week and see if it works and go higher if it does not. Thanks to everyone for all your help. Joanne