Weak wobbly legs

[Rose8950]

I need your feedback on my weak, wobbly legs. I’m on my 4th month on this PMR journey. I’m slowly reducing and I’m presently at 22,5 and am feeling OK.

My biggest worry are my legs, will they ever come back to normal. I ‘ve read about steroid myopathy which is sometimes irreversible!!

I use to walk 10 000 steps a day with strong long steps. I played golf 4 times a week. I now try to walk 4000 steps but with weak legs.I’ve played golf a few times but my legs are pretty wobbly at the end of the game. Should I continue to persist in walking as much as I can . Have any of you have regained strength in your legs after lowering your dose.

Any advice and feedback is welcomed.

[HeronNS]

What dose did you start with if you are still at 22.5 after four months? Seems high for PMR.

You might find low level light therapy helpful. I received it from a physiotherapist while my PMR was active and believe it helped. Research has shown it reduces inflammation in conditions like rheumatoid arthritis. The same physiotherapist should be able to give advice about activities, movements, which could help your weaknessss, but be sure they understand the specific needs of PMR patients, avoiding the traditional repetitive exercises a physiotherapist prescribes for other purposes.

The kind of light therapy you should look for is this:

bioflexlaser.com/

It was developed in Canada and quite widely available here. Because our extra health insurance covers physio my costs were covered 80%

[Rose8950 in reply to HeronNS]

I started at 20 mg in November 24, my rheumatologist wanted me to go down to 20 mg after 6 weeks. I had a terrible flare that really scared me, he had me go up to 25 and a few days later at 27 to get things back in control.

I’m following Dorset Lady’s tapering plan of 2,5 taper per month. Things are going well except my legs are heavy and weak but I do my best at walking every day. Maybe this light therapy could be useful but I don’t have any pain in my legs.

[Rose8950 in reply to Rose8950]

Sorry but my rheumatologist wanted me to go down from 20 to 15, that is what caused my flare. That is what messed things up for me.

[HeronNS in reply to Rose8950]

Unfortunately these huge drops in dosage can cause a rebound that's harder to get under control than the original issue. I actually didn't start light therapy until I was down to 7 mg. I'd forgotten that. It was because the physiotherapist thought above that dose the pred would basically negate any effects of the therapy. So scratch what I recommended to you! However, I wasn't getting it for any pain because I'd been painfree since my initial 15 mg, and unlike you had the benefit of a sensible GP who had me reduce by one mg at a time. When I got to seven or eight I started tapering 1/2 mg at a time, and also I used a slow taper method which introduced each new dose very slowly.

No, I was just thinking that because Low Level or Low Intensity Light therapy (LLLT or LILT) is used for a lot of different conditions it might also help with muscle weakness. I never used it directly to relieve pain but it seems to encourage healing of damaged tissues. My physio has also used it on my injured knees and broken wrist! The following page includes information about the treatment of muscles:

bioflexlaser.com/bioflex-sc...

But it would be worth finding out if pred at higher levels does interfere with the treatment.

May I ask what province you're in? I'm in Nova Scotia.

[Rose8950 in reply to HeronNS]

Hello fellow Canadian ! I’m originally from Ottawa Ontario but I live in Quebec and in Florida during the winter months. Since I was diagnosed in Florida in November I’m seeing a rheumatologist here, but will see my regular GP back home in April.

The 5 mg drop really put me back 2 months in my tapering. I haven’t even reached my initial dose of 20mg where I was feeling great. But as my mother used to say to say, Don’t cry over spilled milk. I am so determined to get through this and am willing to work really hard at this..

Thanks for the positive feedback !

[HeronNS in reply to Rose8950]

I guess there are only a couple of Bioflex clinics in PQ, it's such a big area but place names don't show up until you're zoomed in close I find the map a bit hard to read, but Gatineau and Chelsea show up.

[hill-walker]

Like you, rose8950, I was a major walker before GCA struck. When I was on high pred I also had weak wobbly legs. It was scary! As my dose was reduced, my strength and stability returned. I'm currently slow tapering from 5 to 4.5 mg, and yesterday I had the first strong, fast, 2 mile walk since I was diagnosed. I'm not even wiped out from it today. I do also take Actemra, which assists with lowering pred dose. Just telling you this as an example of a little light that can show up as you begin emerging from the tunnel.

[Rose8950 in reply to hill-walker]

Thank you for the encouragement, I will get through this and gain my leg strength again.

[hill-walker in reply to Rose8950]

Hello again dear Rose8950. You might want to research the supplement Creatine for muscle wasting when taking pred. It's been shown to have some value. I've taken it since I came upon it in my research of how to address that issue. And if your dr. has not started you on Tocilizumab (with brand names Actemra and Tyenne) ask about it. It makes it possible to reduce pred. and for some people to come off pred. completely. It's made a major difference for me, and so far, no side effects. I wish you all the best ♥️

[Obscureclouds]

Don’t know if my experience helps Diagnosed with LVV & barely able to walk through fatigue once 60/50mg of Pret kicked in I was soon able to walk 4/5 miles without getting fatigued. But I did still had weak and wobbly legs. Getting back to the pool really helped build up strength so went most days if just for 15 mins walking up and down with a few jumping and stretching exercises thrown in then aqua fit class 4 times per week. Against my better judgement I followed Consultants tapering plan going from 30 to 20 mg and was hit with extreme fatigue so increased to 25mg and tapered more slowly. It took a while to get back to going for much of a walk and unfortunately I also had a very slow healing skin tear wound at the time and was unable to get to the pool. Although I had the energy to walk my legs were so weak and wobbly so I kept trying to walk as far as I could. I was just picking up when I got cellulitis so no more walking or pool. Back for 2 weeks then sustained really bad skin tear wounds (too painful to walk for a week or so) Now on 14 mg and still no pool 6/7 weeks on waiting for wound to heal. I can walk 2 or 3 miles but legs still really heavy/tired wobbly (difficult to describe). I’ve put this more down to the lack of normal exercise than Pred as I think at my age you can very quickly loose muscle strength. Of course we do have to be careful to make sure we get enough rest and don’t overdo it but I thoroughly recommend visits to a pool if you have one nearby as the water is a great support for walking, stretching and weight bearing exercise. I hope you can soon build back up to doing the things you enjoy and find other interests for those days when you can’t just make it without feeling frustrated.

[Rose8950 in reply to Obscureclouds]

Thank you for your suggestion of pool exercises, I have one right next to my condo in sunny Florida where I spend my winters. I’m not a pool person but I have motivation in getting my leg strength back.

[DorsetLady PMRGCAuk volunteer]

hi,,

Walking is probably the best exercise to keep doing… but try finding a route where you can stop and rest at intervals [if only for a short while]. Maybe a walk to a coffee shop, have a drink and walk back, or if that’s not your choice or possible, break in to 2 or 3 walks over the day rather than in one go.

The charity has a book on its site which can be downloaded which might help as well - it’s included in this general link on exercise -

healthunlocked.com/pmrgcauk...

[Rose8950 in reply to DorsetLady]

Thank you DL for the coffee suggestion. My tapering plan is going well.

Can’t wait next week for the next 2,5 tapering after having completed the first one .

I will get there……

[HeronNS in reply to Rose8950]

Once you are below 20 it would be wise to reduce the size of the drop, particularly as you have already had unfortunate experience with rebound after a previous drop. The suggestion is not to taper by more than 10% of the dose at a time. And of course as the dose becomes smaller, the percentage becomes more significant. This is why 1 mg tablets are so useful. A 5 mg tablet can be cut to make 2.5 of course, which works well until one is at 2 (you will get there) and then even the tiny 1 mg can be cut. Once you are safely back to 15 mg you might consider looking at the slow taper plans patients have developed, and certainly adopt one of them once you get to 10. These plans take four or six weeks to complete, and two rules of thumb often repeated here are: "It isn't slow if it works," and "The lower, the slower"!

A few months from now I bet you will look back and realise how far you have come. Meanwhile, be kind to yourself. If you'd broken your leg no one, least of all yourself, would be expecting to be back to normal quickly. Things take time. 🍀

poem "Things Take Time" by Piet Hein

[Rose8950 in reply to HeronNS]

Once I get to 20, I was thinking of a 1 or 1,5 drop per month and see how this goes.

[PMRpro Ambassador]

I had quite severe muscle wasting in the few months I was on methyl prednisolone but as soon as I was switched to prednisone it slowly came back just with walking and my legs were soon good enough to ski again as well. At the time I hadn't access to acquafit classes but a physio told me how to get them after I had severe back problems and could barely walk 3 years ago.

I still can't walk what I would call briskly but I can manage up to 6000 steps provided I take it in stages and have rests between walking - even using the bus for a transfer from town to the village is enough to mean I can walk another distance. As soon as I try to walk faster, my knees feel really wobbly, especially the right one which was badly damaged in a break 30-odd years ago so that might be relevant! When it is very uncomfortable I use a crutch, which also helps getting into our buses - not just the step in but massive stesps up to the seats!!! Some people have found that using walking poles helps a lot - you get city ones for using on tarmac or different tips for hard surfaces and walking paths.

[Leafsong66]

I developed Steroids myopathy after only 2 weeks on 60 mg of Steroids. Thankfully I had my stamina and legs return as I tapered down, to about 20 mg. I did find a wheely walker peace of mind for longer walks. The instant seat is a life saver! I am only 58 but have learnt that confidence and the safety to keep moving is more important than my self consciousness. Do trust you pick up soon.