You won’t believe this one

I feel so sorry for you as I know the feeling of that kind of pain. Yesterday was my 5th day without any pred. As I could never get to speak to doctor about how to go about taking myself off it I just did by reducing the dose every few days. Last night had serious hip and upper left leg pain. Have been taking Tylenol to-day and will take some to-night and hope to get some sleep. As this is Friday, I know that I cannot get hold of any-one in doctor's office. If the pain gets really bad, beside taking Prednisone, probably 10mg plus, my only alternative is the hospital emergency or a 24 hr. clinic. I know none of this helps you, I just wish I could. I think the pain does feel somewhat like sciatica. That is how my left leg has felt to-day. I've been exercising it, flexing muscles, bending etc. Actually movement and a very, very, hot shower concentrating the flow on my lower back and legs seems to help. I think exercising as much as one can is important in treating PMR

If the pain feels like PMR pain at the beginning, then you most likely have reduced your dose way beyond you should. You need enough prednisone to control inflammation. If the dose is even 1mg below the optimal, over time inflammation will accumulate and result in the flare. My guess is that is what you have now.

You have started with 60mg dose. Were you diagnosed with GCA or PMR or both? I would not worry about sed rate, make sure that you pay attention to your symptoms. Did the increase to 20 mg help? After 3-4 days, you should have felt much better. If it is helping, I would stay on 20mg dose until your PMR symptoms are under control. As far as I know, sciatica is usually impacting one side, not both. PMR on the other hand causes symmetrical pain on both sides. Codeine or any pain meds usually do not help with PMR, only pred can.

Im so sorry, that is a horrible experience.

I wouldn't worry about your sed rate. if you are having bilateral sudden pain in the hips, upper legs, groin or shoulders, then its most likely a PMR flare and I would up my pred immediately. 60 mg to 7 mg in that period of time was quite fast.

No need to suffer like that.

Recently I had to up from 11 1/2 to 30 and that was for a mild flare. Got back to 22 pretty quickly but now its slow. still have some symptoms, but was not vompletely symptom free at 30 and really did not want to go higher without chatting with the doc first. i also have almost constant pins and needles in my calves gradually moving higher up my leg, when Im at rest. I exercise a lot.. tennis, soccer, weights.

Clearly, Im having mild management issues, Mild, but not happy with the direction.

Bethune, thank you for your insight. The only reason I am concerned with the sed rate is because my Doc seems to manage me according to my sed rate. when I was tested on time and it was 30 he called and wanted to know if my pain increased, it hadnt. but 1 week later its at 38 , and I cant get a hold of him until Wed. ugh thanks again

The increase in the sed rate is not the cause of your pain - it is a sign that there is increased inflammation in your body. You have reduced to too low a dose to manage the daily new dose of inflammation that is being created in the body by the ongoing autoimmune disorder that causes the symptoms we call PMR. A flare - I refuse to call it a relapse, the disease has never gone away, it is chronic and has a median duration of 5-9 years, not months - is a return of the symptoms due to an increase in the inflammation in your body. You aren't reducing relentlessly to zero, you are looking for the lowest dose that manages your symptoms as well as the starting dose did. If you go too low, the left over inflammation each day will just mount up and eventually spill over to cause symptoms just as it was at the start.

60mg is far too high a starting dose for PMR - the 20mg you are at now is a more usual dose. It will take a bit longer to work well but will have fewer side effects.

If you have sciatic pain - it tracks the line of the sciatic nerve from the lower spine, through your buttock and down the leg, if you google it you will find illustrations - it may be due to something called myofascial pain syndrome which is found more often in patients with PMR. It is caused by the same inflammatory substances as PMR but they are localised in the muscle fascia (the transparent skin you find on joints of meat and poultry) and in trigger points on either side of the spine, in the shoulder muscles, about rib level and in the low back. They can irritate nearby nerves, causing referred pain in the areas they supply so if it is the lower back it is in the leg, or the muscle may even spasm and pinch the nerve - causing sciatic. A similar effect can be caused by something called piriformis syndrome - google it for more details.

I have both, they improve at higher doses of pred but return at low doses if I am not careful. I get remedial massage and manual mobilisation of the trigger points which, when done well, keep me upright and pretty much pain-free most of the time. I used to find a lot of benefit from Bowen therapy when I lived somewhere with a good therapist. But a good sports physio is a good approach.

I would suspect that the hip pain was possibly trochanteric bursitis - often part of PMR - although usually it takes a while to fade with oral pred. 8mg was obviously your "lowest dose" for now - doesn't mean you won't get lower, just not yet. When the pain started at 7mg you should have gone back to 8mg for a month or so and then tried again. Below 10mg you need to reduce more slowly as you must be getting nearer to the dose you are looking for. You also need at least a month at each dose now to be sure it is still enough.

Your doctor is going by the sed rate as it is an indicator of inflammation - but a lot of things can make it go up, even a cold, and if you have a raised level but no symptoms you should stop reducing and get the sed rate checked again after a week to see if there is a trend upwards which shows increasing inflammation of symptoms develop. What the sed rate is doing is less important than whether you have symptoms - you can have symptoms without the sed rate going up.