What's my next step?

[Buenavista]

Hi guys,

Hope you all had a good Xmas.

I sent a post last month about my knee problem. I was on 12.5mg of pred per week, approx 1.75mg per day as I explained before. The suggestion was to go up a bit to see what happens. I thought that a good time to go up a was mid December. This is because we were coming back to England for 3 weeks. So my wife put me on 5mg per day.

Well, it's done nothing for my knees at all. But amazingly, both my hands are relatively free of pain. I can now sit down for a few hours without cheek pain (as in bum) and I can get up from a chair like a normal person.

So the question I have is, what do I do now, as in dosage? I have been on pred since 2011.

Best regards,

Buenavista

P.S. Hope you all have a great New Year.

[PMRCanada]

I read your last post and it sounds like you have some organic issues with your knees that the pred may not help.

I had an MRI of both my knees (after an X-ray didn’t reveal anything),to find out I had OA in both with cartilage deterioration in right knee leaving a spot where there is bone-on-bone contact. I also have meniscal tears (every type), torn ACL and a large bakers cyst behind right knee.

All this to say perhaps you should get an MRI so you know what you’re dealing with, and you can then address any problems they may find.

Once I got to below about 12.5mg of pred, it no longer masked my knee problems. Instead I tried a steroid injection in my knee that gave me about 2.5 months of relief. It’s not a long term solution, but the least invasive option for now. Eventually I will require arthroscopic surgery to clean things up.

I wouldn’t increase your pred dose just yet, until you get your knees sorted out. Glad you are getting relief with your hands and “cheek”, but this leads me to think that 1.75mg was not enough. 5mg seems to be doing the trick. Wishing you all the best moving forward. Hope you get to the bottom of your knee issues.

[SheffieldJane]

My knees are my key symptom now, coupled with low back pain. The awful flu type feelings and deathly fatigue of PMR have gone. The pain I have, I believe, is arthritic. I think my next step, in the New Year is an X-Ray of the knees. They are swollen and really affecting my mobility. I feel less ill, if that makes sense? I hope that we work our way out of this maze. I don’t believe that more Pred ( I am on 7 mgs) is going to help me now.

[Valnvaughan in reply to SheffieldJane]

Yeah....sounds like OA. Pred above 10mg appeared to mask OA pain for me through 2017. Each reduction below seemed to cause symptoms that GP diagnosed as flare and increased Pred. Eventually I noticed hip pain was not entirely bilateral and asked for further investigation, and got a relieving steroid injection direct into hip. X-ray in Jan

18 showed deterioration of cartilage in both hips but bone on bone in right. Went downhill quickly and had to use wheelchair! Well, 2 hip replacements first in May, second in October in 18 and now I’m told I’m OA free......just weak muscles to rebuild......and still some PMR if I overdo it! Now on 5mg Pred per day, after 2mg was not enough over a busy Christmas.

Ask GP for further investigation of knees.

🎉🥳Valerie

[Constance13 in reply to SheffieldJane]

Morning SJ!

I am in the same position. The PMR has settled down (now stable on 4 mg) but the arthritis gets worse and worse as I get older. To be expected I suppose.

Fun getting old isn’t it?

Regards fr Constance

[SheffieldJane in reply to Constance13]

Where did our young sprightly selves clear off to while PMR was in charge?

[Constance13 in reply to SheffieldJane]

Dunno, but if you find it again please let me know!😂

[piglette in reply to Constance13]

I was at the swimming pool today and the fitness coach was staggering around complaining about his back and saying how awful it is to get old. He must be in his late twenties!

[Constance13 in reply to piglette]

😂😂😂😂 It’s all to come! If only he knew!

[piglette in reply to Constance13]

And he is very fit!!

[nickm001]

since you were on 5mg for longer then a week, you would need to taper back to lower dose. It seems that 1.75 is not clearing all inflammation, so while you taper back down, keep a record on how you feel and try to find adequate pred dose. Best to go in 0.5mg steps, so you don't miss the proper dose .

Your knee is another issue and needs to be looked at separately. Xray will show general condition, and may be sufficient, but if injury is torn ACL or any ligament problem, then MRI may be better choice. So much for "golden years" :)... but hey try to stay positive.

[PMRpro Ambassador]

Obviously somewhere between the 2 doses is where you need to be for the PMR - and now you have cleared out the accumulated inflammation you could start reducing very slowly again to find where you need to be to prevent recurrence. You will need to stay at each level for a while to be sure it is still enough - but it may well turn out to be only 2 or 3mg and that is a safe dose to stick at for as long as it takes.

And your knees - start with x-rays and get them investigated. When I had knee pain I wondered if it was the OA a rheumy has insisted I had 13 years ago, she "could feel it" - and the x-ray showed there wasn't any!

[Buenavista]

Thanks for all your help guys,

I'll taper down the pred very slowly and see how I go from there. I'm also going to have an appointment with a specialist for my knees.

Have a Happy New Year.

Regards,

Buenavista