Although I seldom post since there are others, including the "Aunties" who know much more than I do, I thought it might be instructive to describe my case of long-term PMR.
First Dx'd on the basis of raised Plasma Viscosity in 2003, about four months after retiring from full time work in the Aerospace field. Started with stiffness in right arm (thought to be sports related), moved to other arm, thighs and legs over 2 months. During the process I was given various injections, tried Accupuncture, Chiropracter treatment & dosed with Diclofenac all to no avail! At this point I could barely move my arms, legs bad too although I never stopped walking. Started on 40mg Pred which worked within 24 hours - thought I was a teenager again!
Continued the Diclofenac alongside Pred and was given Alendronic Acid for 2.5 years.
Tapered off Pred in 32 months but symptoms returned 19 months later.
Second course of Pred started at 15mg which again gave instant relief. At this time I had a suspected TIA (turned out to be a Visual Migraine) but during investigations was Dx'd with Glaucoma and started treatment for that as well. My well meaning GP also put me on low dose Asprin which resulted in a Gastric Ulcer, so Omeprozole added to the mix! Tapered off Pred in 16 months but it returned again after 5 months on Zeo Pred.
Third course started on 7.5mg which also worked. Tapered over 20 months and again was off Pred for 4 months. Had a PVD during this time - don't know whether this was related.
Fourth course also started at 7.5mg. Tapered to zero in 19 months and was off Pred for 3 months.
Do you see a pattern starting here??
This time I asked my GP if I could try a gradually increasing dose to see when it kicked-in. Didn't Work! Had to go right up to 17.5 mg before symptoms subsided.
Tapered down to 2mg over a year and then stayed at this level for 18 months until I had a flare. This was the first time that I have had a flare whilst on Pred. This was also the first time since first diagnosis that my CRP was raised (slightly) although I did have a stomach upset at this time which may have confused things. Increased to 15mg and came down faily quickly to 5mg where I stayed for over a year.
At this time I joined pmrgcauk and learnt a lot more about the condition, also started the Salisbury Group where I met lots of interesting people. As a result of research, asked my GP for a referral to Dr Hughes at Chertsey who Dx'd very "Refractory" PMR with possibly some LVV in the earlier stages. He advised that I try to reduce to 2.5mg and stay there although long term 5mg would not be a problem.
BTW, I have never suffered much pain from PMR, only incredible stiffness/lack of movement and also the usual fatigue. Also no weight problems. Apart from the first episode, flares have always been confined to thighs/legs although since I have always restarted Pred promptly this may have helped my upper body.
So here I am currently 4mg which I take as enteric coated, am planning to get off the Omeprozole if I can and will try a slow taper on this in the Spring. Then depending on how I am feeling I may try to get to 3mg over the next year or so.
As I go into my 80th year, I am fighting back! Have joined a Gym, swim regularily and about to try Pilates.
So, hopefully most of you will have a smoother ride than this but even if you are one of the 5% life can go on without too much hassle.
A very Happy New Year to all in the community and especial thanks to the "Aunties".