rhematologist says poss PMR steroid resistant

[JessJess21]

hello this morning I have pains in both my knees my arms don’t move very well and the fingers on my right hand are swollen and painful. I seem to be existing on painkillers. Steroids didn’t work including the injection of steroids that I had four weeks ago. My rheumatologist doesn’t want to put me straight onto methotrexate and is going to PET scan me. So I’m still stuck in pain not quite knowing what’s wrong my blood test inflammatory markers are up. It’s been six months now living in chronic pain. I’m still working full-time but I’m trying to take it as easy as possible. I’m starting to use things like dictation software and my bosses got me a standing desk and things like that, The mood it’s still okay but I can see that overtime. It really wears you down. I thought I’d let you know because he still thinks it’s PMR but unusual variety. I’m going to phone up the doctors office today and ask him when I can have the PET scan because I forgot to ask. Wishing you all well and any tips in living with chronic pain would be very helpful.

[SnazzyD]

Hello, I read back to try to get a sense of what has been going on and I came away confused but maybe my brain isn’t up to it this morning. There seems to be chopping and changing of approaches on a grand scale. According to your first post you were 10 days in on 15mg, 4 months ago, so 6 months suffering but not treatment for 6 months. Then I got lost with the ups and downs and sideways over this period of only 4 months. I am not surprised your body is all over the place; steroid withdrawal won’t help.

What is the longest time you’ve been on any dose that appeared to help at all? Actually, it might be helpful to write in your bio how long you were on each dose.

Large doses of Naproxen is a concern too, especially if you are risking those side effects merely because Pred hasn’t been sustained long enough at a high enough dose.

I’m afraid that whatever treatment ends up helping in the end, it does sound like you need to play your part too in helping your poor body to deal with this. This goes for us all; there is only so much medication can do for what is a serious systemic issue. I mean particularly taking sick leave. People being surprised at you being able to cope at all should be shouting to you that it may unsustainable. Also, a low carb diet will really help keep your diabetes risk down, stop fanning the flames of inflammation and help start on the llb’s that the consultant is concerned about.

It is hellishly difficult when one gets into a state where there is nothing to grasp onto in terms of anything that will make you feel better. But it needs nibbling at from all sides.

[PMRpro Ambassador]

If he thinks it is PMR - why doesn't he try managing it as if it were PMR? Because what he has been doing since you first saw him was never likely to control anything - in our experience at least and we have walked with thousands of patients, I agree with all Snazzy has said in her reply.

There are several versions of PMR - but the one thing they have in common is that they are responsive to prednisolone, That is part of the criteria. However, that dose of pred needs to be enough - both in dose AND duration. 15mg is at the bottom end of the dose range and once you have found the dose you need then you need to be there for a month to stabilise. Ten days is never likely to be long enough. Then you taper in SMALL steps, not more than 10% of the current dose if possible and never more often that every 3 weeks, And even then, some patients can't manage that so the doctor needs to adjust their approach for the individual patient. ALL the guidelines say that. Five mg changes in dose can result in two things: overshooting the dose you need at the time and also potentially quite severe steroid withdrawal reacting to the change in dose. Some people are really sensitive to that and steroid withdrawal can feel just like the PMR symptoms returning. If you chop and change the pred dose - the steroid withdrawal effects never get a chance to resolve.

YOU also have to do your bit - and working full time, however good your employer is might simply not be on at present until the inflammation is under control. You may have to give in on that and take some sick leave to give your body a chance.

The other point is that there are a few forms of inflammatory arthritis that can present identically to PMR at the outset and there are no ways of distinguishing the polymyalgic presentation of LORA (late onset RA) from PMR itself. PMR isn't the disease, it is the name given to a set of symptoms due to an underlying cause and there are several. One sign that it is something else is that it may be difficult to get the inflammation under control in the first place and then to reduce the dose. I don't think your rheumy has really gone about the basic control in a steady enough manner - he's swung from one thing to another like throwing the rudder of a small boat from one side to the other to get it to go in a straight line. It doesn't work like that.

And another consideration that does need to be looked at is that you say you are South Asian - studies showed that the incidence of classic PMR is highest in persons with a northern European ancestry. The incidence in African and Asian ethnicities is extremely low. I'm not saying it ISN'T PMR - but there is a far greater likelihood it is something else. Naproxen doesn't usually help in PMR

The only tips I would offer is that you should take some sick leave. And ask for a second opinion if he doesn't get his act together and get the PET-CT scan done soon.

[piglette]

From what you say it does not sound too much like PMR unless you are not taking a high enough dose of steroids to hit it on the head. I agree with PMRPro, I think I would be looking for a second opinion. Have they considered something else such as fybromyalgia, vitamin D deficiency etc. causing the pain?

[Pixix]

I’ve been in chronic pain for 12 years…for a number of medical issues, but often due to fibromyalgia. The clinical examination is that you feel as if they are prodding you all over your body! In fact they are choosing a number of known places where your body feels pain if you have fibro, & seeing what your pain response is to each site. It’s good to find the reason for chronic pain, as the treatment is different, naturally, eg there are two drugs used for help in fibro. Sadly, I was unable to take either, but they help a lot of people. I struggled on with a 60 hours a week job, for a while, but ended up going part time. You are right, chronic pain does get you down! It’s important to find the reason. I guess my tip is to push for diagnosis. There is other help available for chronic pain, but it really depends on what you have wrong with you! Time off work would help you relax!