Weak knees, How good should I feel before I taper?

[paintpots]

Hi everyone, I joined this forum about a month ago and have had some good advice. I was struggling at 1mg due to a flare up at 0 .5mg. I have been on prednisolone now for 2 years starting at 15mg and have tried to come off the steroids 3 times, but now accept that my body is not ready for that.

The advice was to go to 5mg for 7 days and then go to 2.5mg for 28 days. I have been on 2.5mg for a week and feel generally good, a little stiff in the mornings that soon goes and no fatigue. Walking is OK, at least reasonable now. I am grateful for the advice I received.

However my legs/knees are not right, I cannot get up off my knees if I kneel without help, and the back of my knees feel like the tendons are tight when I walk. Before I start to taper next month I want some comments on my knees/legs, Should they be as good as they were? or perhaps I need some physio? Is this a PMR symptom?

I realise that there are so many worse off persons than me and I do hope this is not a trivial post but I so do not want any more flare ups by tapering when I still have some issues.

Paintpots

[SnazzyD]

If you are having issues, it isn’t trivial. I found the combination of Pred and deconditioning made a huge difference to my muscles and tendons. I was very fit before diagnosis. I saw a physio and a podiatrist for Achilles problems and got specific exercises for my problems. It turned out that many of my lower limb problems were due to weakness and shortening in hips and abdominal muscles. The tendons got better slowly mostly on their own. I needed to get fit enough to go to the gym.

[Flutterbies57 in reply to SnazzyD]

Hi Snazzy ., I do find I have to do many stretches to keep my knees ankles and hips free and moving . If I am good I do half hour of stretches every morn before I get out of bed . I copy a lot of what my osteopath does to me . It keeps me mobile .

[PMRpro Ambassador]

Nothing is trivial if it affecting you - and after a flare can be the start of a problem.

Is it above or below your knees? PMR can affect hamstrings - that what it feels like? If you have access to a physio that might the person to ask though. Does the leg discomfort go up into the buttocks?

[paintpots in reply to PMRpro]

Hi. PMR pro The problem is above and behind the knees and does not go up to the buttocks.

[PMRpro Ambassador in reply to paintpots]

I'd ask a physio I think

[paintpots in reply to PMRpro]

Thank you. I will set about seeing one.

[PMRpro Ambassador in reply to paintpots]

Been reminded this morning - DO make sure they know about PMR so ask questions. A lot THINK they know - and blatantly obviously don't.

[Viv54]

I have this a lot , i have found that pred makes your tendons really sore ! I have had Tendonitis twice since being on pred , it is a terrible painful side affect in my case. I found that resting more and after talking with my Dtr, i started doing gentle stretching exercise , helps a lot ! Plenty of stretching exercises on google. Give it a try it really helped me ! Good luck.

[AyJayBass]

If I have to kneel on the floor for any reason I make sure that I have something nearby to push on to help me to stand up again. In the garden, an upturned bucket is enough.

[paintpots in reply to AyJayBass]

Hi.I have referred myself to the NHS for physio, it seems the way to go. I walked to the library this morning about 2/3rds of a mile each way. The back of my knees feel like they are not happy stretching, I think it's tendons, no fatigue and my thighs are OK.

[Olympian]

Hi sorry to hear you are suffering . I wish I could offer some advice but I have only been on my tapering journey since April so only down to 8mg of Pred. All going well so far!!! I think I will be coming to you for advice if I have any problems. I am sure you will get excellent advice and support from this group. Wishing you well as you continue your journey.

[paintpots in reply to Olympian]

My advice is to not rush the tapering, this condition bites back if you think you can rush to the end.

[jobyway in reply to paintpots]

I think that's wise - I found that tapering much more slowly as the dose of steroid lowered was helpful - remember that I got down to a half eventually. As some others, had inflamed tendons which resolved slowly, and I hadn't known that muscles shrink a bit because of the steroids - they do regrow when you come off them, but that might affect tendons too maybe. Definitely recommend physio, especially exercises which can be sent to home and done every day - from the hospital physio dept and found on Versus Arthrititis.

[paintpots in reply to jobyway]

Thanks for that. I also got down to 1/2mg a day before relapsing because I cut it to no steroid every other day which was too much too fast. I am now on 2.5mg a day and feel much better for it. It is slowly does it now.I have learnt so much from this group I only wish my doctor had told me about it, I have been left to my in devices in the main with just a phone call every 3 or 4 months from the doctor.

Good luck all fellow sufferers!

[PMRpro Ambassador in reply to paintpots]

Every other day rarely works well in PMR and not at all in GCA. The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person. If you are at the 36 hour end you can just about manage every other day but much less and it gives you alternate bad days!! Some people even need to split their dose to get through one day.

[Moness in reply to paintpots]

I’m in a similar position, trying to get below 2 but notice the stiffness is still there and walking feels quite strange although I make myself do it. Couldn’t face yoga this week either. Am having a problem with tendonopathy in my shoulder and wondered if pmr has aggravated it. Never get an answer to that and the physio excercises seem to make it worse! Just very grateful it’s not as bad as many other conditions.

[paintpots in reply to Moness]

Yes. I was very stiff this morning. Some days it's OK and others are worse. Thats why I don't want to taper yet. I can push through the resistance with my knees, I'm sure it's tendons.my other symptoms go after an hour or so but the weak knees and tight tendons are there all the time. It feels like someone has pushed me behind the knee.

[paintpots in reply to paintpots]

On reflection, I had my booster vaccine yesterday perhaps that's why my meds are not working so well. Although the nurse assured me it would not interfere with the prednisolone.

[PMRpro Ambassador in reply to paintpots]

No - but it might interfere with the PMR!!!!

[paintpots in reply to PMRpro]

Hmm thought it might, but didn't want to face that thought! Guess it's wait a few days to see if it resolves. I am very stiff today, had to get under the stairs to read the meters just now and it was a struggle.