How much should I increase Pred?

[kulina]

I've had PMR since 2016, it's been a rough ride but I've been on 0.50 mg Pred since March of this year. About a week ago I got pain in my knees and shoulders so for a week I increased the Pred to 1 mg. I also took about 200-400 mg Ibuprofen at night and it seems that the pain has subsided. (I only take Ibuprofen when absolutely necessary.) Still have pain in my knees but I'm feeling much better so at this point, what amount should I decrease to?

[piglette]

Perhaps increasing by 5mg for a week or so and see if that hits the PMR on the head, if it is PMR causing the problem.

[kulina in reply to piglette]

Thank you for your replay piglette, increasing to 1 mg worked. I was just hoping that I could go lower. I'm sure it was PMR pain, it felt like the old days with bilateral pain in most joints.

[piglette in reply to kulina]

I find one of the best ways to find out is to try painkilers and see if they work and if they don’t it is likely to be PMR.

[kulina in reply to piglette]

Yes, I did that years ago and painkillers didn't work during the worst phases of PMR. I find now, that the pain is on the lighter side and blood work is normal, painkillers help. Of course I use the lowest amount possible because Ibuprofen has its own side effects. I've read lots of medical articles that if the PMR symptoms are not severe, NSAIDs might work and as my PMR subsided, I found that Ibuprofen is staring to alleviate the pain, thus helping me reduce the Pred.

[DorsetLady PMRGCAuk volunteer in reply to kulina]

As you’ve said, ibuprofen has its own side effects -and really shouldn’t be taken with Pred - so just be mindful .

Sometimes better the devil you know…and least your Pred is on prescription and therefore hopefully being monitored…

[kulina in reply to DorsetLady]

Thank you DorsetLady, I know what you mean about Ibuprofen. I'm just tired of arguing with my doctors because they want me off of Pred now. It looks like I reduced to a dose that my body doesn't like, even though the reduction was really slow. I was fine on 1 mg. so I guess I'll stay at 1 mg for a while.

[DorsetLady PMRGCAuk volunteer in reply to kulina]

Really don’t get why doctors get in such a tizzy about very low doses of Pred - if it’s keeping your PMR controlled then let it.

Some quite happily dish out other meds yet have a mental block with steroids.

I think very often we have to say -I know what’s best for my body so let do my own thing.. the sensible ones will agree…

[kulina in reply to DorsetLady]

I agree with you, my doctors wanted to put me on Methotrexate numerous times even when I was down to 3 mg and feeling great. I guess you are right, I will have to stand up to them and say: "if it’s keeping my PMR controlled and since 1 mg is really low why not stay the course". But I bet they will try to get me to take Methotrexate again. It's been a constant battle. Thank you for your advice!

[PMRpro Ambassador in reply to kulina]

I would consider it medical negligence to try to persuade a patient to take MTX if they were at 3mg or less.

[kulina in reply to PMRpro]

Yes, you are so right! At the last appointment, I remember being so excited that I was feeling well and reduced successfully and so upset when they didn't even look at the progress, just wanted to put me on more meds.

[PMRpro Ambassador in reply to kulina]

Nuts ...

[agingfeminist]

if you take paracetamol/ibuprofen does the pain in your knees lessen? It is the litmus test.

Knees sound like joint problems...not PMR...so the extra pred won't make a difference.

You have two things you can try that might help sort out whether this is PMR.

[kulina in reply to agingfeminist]

Thank you for your help agingfeminist. I'm sure this is PMR pain, it's bilateral and it feels like the PMR bursitis from years ago. Believe me, I've had PMR long enough to tell what it is. It's such a weird condition with always changing treatment approaches to maintain the body pain free.

[agingfeminist in reply to kulina]

I get shoulder bursitis but I hadn't thought of it as being caused by the PMR...you live and learn...often in a rather painful way.

[kulina in reply to agingfeminist]

The bursitis has to be present on both sides of your body, such as both shoulders, both hips, etc. for it to be PMR. Unlike RA which attacks the joints, PMR attacks tendons and ligaments. Through the years I've had bursitis on both sides but worse on one side than the other. If you have bursitis only in one joint, I would say it's not PMR. PMR is very debilitating and it's throughout the whole body and since I've never been sick before, not even with bursitis, this was a shock. Yes, here's some info: "Inflammation of bursae, especially in the hip, shoulder, and neck, is a common symptom of polymyalgia rheumatica." Link to the website: arthritis-health.com/types/....

The website also says that PMR "doesn't affect the hands and wrists" but it did for me. It affected both knees too. Basically, you are looking at inflammation throughout the body.

[Bcol]

Hi, I would suggest you try the extra Pred or Ibuprofen one at a time. That will help to decide which pain/s are PMR and which are not. If the Ibuprofen doesn't help and as its very unlikely to help with pain from Pred, then stick with an upped dose of Pred.

[PMRpro Ambassador]

What's the matter with very slowly dropping to 0,5mg again? How sure are you the pain was PMR? If the pain returns again - maybe you have to accept 0.5mg is just a scrape too low?

[kulina in reply to PMRpro]

I'm sure it was PMR pain, it felt like the old days with bilateral pain in both knees, both shoulders, hips, elbows and overall stiffness. Thankfully going back up to 1mg worked. Yes, you are right maybe 0.5 is too low. Again, it's the usual story, I'm just trying to please the doctors. I know they won't be happy for me to stay at 1 mg, they've always pushed for me to get off of Pred completely. Thank you for your advice PMRpro

[PMRpro Ambassador in reply to kulina]

If they object to 1mg they are daft! Prof Dasgupta told us he often keeps patients on 2-3mg longterm to avoid relapses. 1mg is far better. I've often wondered if 5mg once a week would achieve the same.

[kulina]

5 mg once a week sounds like an interesting experiment. Yes, my doctors are daft because I'm familiar with Prof Dasgupta's recommendations and it all makes sense. My doctors, like all the ones we complain about in this forum, want me off a Pred as soon as possible. I'm lucky that I haven't had any major side effects except for the apple face and I feel that 1 mg at this point isn't so bad. I'm not looking forward to arguing with the doctors on Monday.

[kulina]

UPDATE: Thank you everyone for your help. You gave me the courage to face my doctors and it all turned out well at my appointment on Monday. Since it's a teaching hospital, I was seen by a couple of new doctors and they were really happy at my progress. They felt that I knew how to reduce/increase meds to manage my pain. They also said that 1-2 mg Pred is so low that they are not worried and I should stay the course I have been on. This is the first time that any doctor has actually told me this. (Maybe it was because they were women doctors and find women doctors listen better.) My tests also have come back as negative on inflammation, as they have been negative now for about 2 years. I've decided to up my Pred from 0.50 mg to 1.50 mg for a week and the start again to reduce slowly by 0.25 mg. I was never able to reduce by more than 0.25 mg at a time. Again, thank you everyone.

[DorsetLady PMRGCAuk volunteer in reply to kulina]

Fingers crossed…

[kulina in reply to DorsetLady]

Thank you!

[PMRpro Ambassador in reply to kulina]

Good and all the best. And long may the two young ladies continue!

[kulina in reply to PMRpro]

Thank you for your support!