Methotrexate . . . What is that?

The pain you describe sounds more akin to myofascial pain syndrome - and that is aggravated by computer work - or painting china!! I had that separate from PMR so I usually recognise it. It is common alongside PMR and is controlled to some extent whilst you are taking pred at higher doses but will resurface as you reduce the dose. It is caused by accumulations of the same inflammatory substances that cause the pain in PMR but at trigger points which then form knots of hard muscle in shoulders and low back. They then can cause muscle spasm and pinched nerves leading to referred pain of the sort you describe from the shoulders. Massage therapist or Bowen will help that best.

If you are still experiencing severe fatigue I'd lay odds your underlying autoimmune disorder is still active - and that means you won't get to zero yet. And at 4-ish you are pretty low now. This might be the place to rest for a few months and let your body catch up (unless you've already been doing that). 

I expect that the type of pain varies extensively and varies from individual to individual DJ.  Personally, my trigger seems to be pain in my left shoulder and left arm muscles.  Even though the arm pain was bilateral initially, it seems to flare only on the left side. I experience fatigue and foggy brain as a side effect of prednisone, but am very much aware of the fact that both of these can be PMR as well.  I view them as PMR triggers if they occur 16 to 24 hours after taking prednisone i.e. a few hours before taking the next dose.  I have problems with weak and heavy legs, which seem to be with me no matter what; however, they do not prevent me from normal daily activities.  I do regular aqua fit and walking, but I can't walk for more than and an hour or so without feeling more and more discomfort, not 'pain' per se.

You have been lucky - but reducing slowly enough probably helps to avoid the flares that seem to prolong the whole thing. The most common cause of flares has been acknowledged by the top experts to be reducing too far or too fast. Which really says it all I think. 

The figures suggest that about a quarter get their pred down to zero in up to 2 years - those who get off even faster, in less than a year, seem to be at a higher risk of relapse. But we do also observe that men often have a different presentation of PMR and a different journey with pred - often easier. Of course - it is difficult to know exactly on the forums because you don't know who someone is who has a user name that is non-gender related (not being nosey, just saying ;-) )

I agree DJ, this forum is extremely helpful and supportive!

Christine  

It is most likely that if you feel the pain that quickly it is NOT the PMR causing it but your body responding to the reduction in the amount of pred which mostly manifests as pain that is similar to the illness for which you are taking the pred. If you toughed it out the discomfort would almost certainly improve over the next couple of weeks. A flare of the PMR would usually take a few days to appear and then the symptoms would increase.

Many people have this problem when reducing the dose and that is the point of my very slow reduction scheme - you have one day of discomfort, then several days back at the old dose, another day of discomfort, a few more days at the old dose. Each time you try the lower dose your body gets more used to it. I feel "not right" for the first 3 or 4 times I take the lower dose - and then my body says "Fine, I get what you are doing..."

But judging by the time you are posting this - you may well be taking your pred far too late in the day. You should take it in a single dose as early as possible in the morning. Studies showed that the optimum time to take pred to avoid morning stiffness is 2am, this achieves a peak level of pred in the blood at 4am, just before the body sheds the cytokines that cause the inflammation and stiffness in PMR. Many of us take it when we wake with a yoghurt or sandwich we have taken to bed with us and then go back to sleep or read or watch TV for a couple of hours before getting up - by that time the pred has worked, we are less stiff.

If you don't want to go on MTX then you will have to bit the bullet and make an attempt to reduce without - because it would not be out of the question for the consultant to say you are being non-compliant and wash his hands of you. And if the GP were then to decide you need to reduce the pred dose you are in trouble if he refuses to prescribe it. 

Yes, it is easy to stick with 10mg pred - but long term it isn't an option and if you don't reduce you will never know if the PMR is in remission. If you are taking ordinary white uncoated pred tablets you can cut them and go down in 1/2mg steps which would probably work better since you are so sensitive - that is what quite a few people have done using my reduction scheme. You can buy a pill cutter at any pharmacy and that makes cutting the tablets easier.

I can only tell you facts that have been established on the basis of dozens of people trying things. That is the basic purpose of a forum. I realise if you don't believe me there is nothing else I can say to help. There is nothing frustrating about it - if someone is not prepared to put up with some discomfort at the start it is obvious they won't ever reduce their pred dose. On that basis there are a lot of people out there, me included, who would still be on 10mg/day. I was very comfortable there too and the same thing happened to me when I tried to go below 10mg until I slowed each step down.

My very slow reduction scheme is further up this thread, lodger has recommended a very good gel which really does seem to work well for many people with OA. We've offered suggestions - you are the person who has to bite the bullet and try them. But for more than one day.

You gave to be right - it all makes sense and fits the situation.

I suppose once accepts that there has to be discomfort and a 'battle' then it makes leaving the safety zone of 10mg a day more understandable.

i think that both consultant and doctor will support in this and if I manage to show serious intention by getting down to 7.5 as quickly as is safe, I will get all the support I need.

I think I am going to start at 1 day new - 4 days old through to 4 new - 1 old this will will give me a 1mg reduction in roughly 28 days. Then start again!

I know that the hospital is running very slow and by the time I get offered the next appointment I can be well on the way.

Thank you again fir your invaluable input . . .

 

Really do consider doing 1/2mg steps if you can - it does seem to help the really sensitive people.

And the day you have a lower dose - don't overdo it!!

Thanks it's good advice.

DJ, I just decided I'm not going to consult with a rheumy.  My PMD is more than equipped to handle my care.  He has been watching out for me for 17+ years.  "If it ain't broke, why fix it"?  

Again good and truthful. I'm not sure the consultant was the right course as he mostly usurps the doctor. I have more than once seen the doctor lift an eyebrow at the path taken by the consultant. Which is why I feel safe in my doctor as he is on myside one hundred percent. As he says "it's your body".

I like that . . Especially in the context of what we are talking about.