struggling to walk

[Abbey17]

I am having difficulty walking with bi-lateral stiffness and pain since reducing to 6.5mg so I’m going back up to 7mg. Thing is, previously any issues have been chronic stiffness but not having such issues with walking . Also issue with both feet and ankles with lack of flexibility and pain but as I understand it, they are not usual affected by PMR? Or am I wrong? Seeing Rheumy next month.

[HeronNS]

Just wondering whether you have been doing, or perhaps not doing, anything different when it comes to physical activity? I find I need to get a certain amount of physical activity, walking and other exercise, but do not do well when I try anything too strenuous. Also I believe that over the years (been on pred since 2015) my muscles have become somewhat weaker and more susceptible to injury, so I carry on with physio exercises I've accumulated over the years, do tai chi, and try to avoid activities like using the vacuum cleaner! All in the interests of safely maintaining a reasonable level of physical fitness.

I do know that people on the forum complain sometimes of hand and foot issues. I blame my version of this on osteoarthritis and do not consider it when managing my pred dose, but I understand that PMR can also cause pain in the extremities.

[Abbey17 in reply to HeronNS]

The only thing different is that I had Covid some weeks ago, I keep as active as I can, up. Reduced from 11 to 7 (with MTX) no problems.

[HeronNS in reply to Abbey17]

Oh dear, I think that is a pretty big "only thing". Give yourself time to recover fully.

[Hidden in reply to Abbey17]

Did you reduce by 4mg in one go, or was it gradual ?

[Abbey17 in reply to Hidden]

Gradually. Since beginning of the year on MTX easily managed to reduce by 1mg per month and no issues at all, once I got to 7, I reduced by .5 mg (July)

[Hidden in reply to Abbey17]

Big drop. I can't do that. But so happy for you. I'm not on MTX. Did you have any side afects being on MTX and did your hair thin or fall out ?

[Abbey17 in reply to Hidden]

Couldn’t do it before MTX, it’s been brilliant for me. Lost some hair at first until folic acid increased. Definitely thinner at the front but it has enabled me to get down after huge struggles decreasing. I was definitely reluctant about MTX at first but it’s made things so much easier

[Hidden in reply to Abbey17]

How about aches and pains ?

[Abbey17 in reply to Hidden]

Legs painful & stiff back of upper arms a bit.

[Hidden in reply to Abbey17]

Yep, me too. Knees hurt when I bend down, arms near top of shouders, a bit painful to lift them above my head. Makes me wonder if I'll be getting off them anytime soon. See Rheumy on 15th, I need to show him my swollen ring finger on right hand. Been swollen and quite painful on and off for months now. Don't really want to take the script the doc prescribed, not a good mix with Pred.. He would say to me 'grin and bear it then' haha !!

[Abbey17 in reply to Hidden]

oh dear - just keep smiling 🙂 (or grimacing!) 💜

[devonn in reply to Abbey17]

just a bit of info about your cardio fitness, try to do some weight bearing even if just bicep curls with a 1pound weight a few times a week. also, pred has a tendency to thin one's skin to be easily bruised and scratches that bleed when before only left scratch marks.

[Abbey17 in reply to devonn]

I’m a potter so have to lift 12kg bags of clay every day, it’s quite a physical busy job (which PMR & arthritic fingers don’t like 😖😁) so I keep as fit as I can then collapse in a heap when it gets too much. Yep got the thin skin etc.. so much fun isn’t it? 🤔

[Hidden in reply to Abbey17]

I've been tapering every month by 0.5mg....seems getting to 5mg for me is the tricky one. I went back to 6.5mg for a few weeks now back to 6mg....a bit scared of reducing any further yet as sadly I did get GCA 3 months after diagnosis for PMR in Dec 2019 and Do Not want that returning.

[nuigini in reply to Abbey17]

I had a flare after having covid at the start of the epidemic in Feb 2021. The deathly fatigue and mild body aches went on fir weeks. Thought I was being cursed with ling covid. Decided to treat it as a PMR flare and got back on track. This may not be the case fir you, just fyi.

[Hidden in reply to HeronNS]

7 yrs on Pred....what have you managed to taper to Heron ?

[HeronNS in reply to Hidden]

I appear to be at 2 mg again, and that is roughly where I've been for nearly five of those seven years. Really hoping the current taper gets me genuinely to zero but given my track record not placing any bets!

[Hidden in reply to HeronNS]

I wish you the very best of luck. 2mg for life isn’t too bad though, is it. ? No doubt there are lots in same boat as yourself and I’m expecting to be in same boat too. I’m struggling to get back to 5mg

[HeronNS in reply to Hidden]

My first PMR doctor actually said right at the beginning that some of her patients kept a supply of 1 mg tablets on hand for a long time, just in case....

[Hidden in reply to HeronNS]

Good idea

[HeronNS in reply to Hidden]

The best of luck to you. Remember, slow and steady!

[Abbey17 in reply to HeronNS]

I will do thanks so much 💜

[devonn]

time- if you have been on meds for a while then the RA was held at bay from causing you the pain that it can cause, but after reducing dosage, the RA may have progressed through your joints and the pain and stiffness is more pronounced when on lower dosage. Keep a few notes on how you are feeling each day for the specialist whose advice can benefit from your tracking the way the RA has been affecting you. May want to print them or type them before giving to the doctor, they are not likely to try to read handwriting that is the least bit unclear.

[PMRpro Ambassador in reply to devonn]

Is part of your reply missing? You also seem a bit confused - saying in your profile you have RA and are worried about GCA. There is no connection between GCA - which is a vasculitis, affecting blood vessels - and RA which is an arthritis affecting joints, PMR isn't the same as RA.

[devonn in reply to PMRpro]

my RA specialists her in the US at MAYO have linked PMR with RA and of course PMR with GCA as potentiating each other, may be an anomalous case but their research is looking into the vasculitis/inflamatory processes relationship.

[PMRpro Ambassador in reply to devonn]

Certainly RA, especially EORA/LORA, can present looking identical to PMR - but the concept they are linked is new to me. Do you have any links to papers on their work?

[PMRpro Ambassador]

I, and a lot of others, have had foot problems with PMR - all of us have described it as feeling as if we are wearing shoes a couple of sizes too small with insoles of pebbles, sharp gravel and broken glass!

Currently I have been having tendon problems in my ankles - stairs are a nightmare and even stepping on or off a single step kerb is difficult because of stiffness.

[Abbey17 in reply to PMRpro]

Yes! Steps are difficult as are inclines

[HeronNS in reply to PMRpro]

I think plantar fasciitis can feel like walking on broken glass, especially the first few steps when getting up.

[Abbey17 in reply to HeronNS]

It’s not PF it’s my ankles - my whole legs basically

[HeronNS in reply to Abbey17]

I was remarking on PMRpro 's comment about feeling like she was walking on sharp gravel and broken glass. I'm sorry I said anything.

[PMRpro Ambassador in reply to Abbey17]

If you look at a reply it says on it who it is addressed to - if there is nothing there it was for the person who posted the original - in this case you - but that comment was aimed at my comment above.

[PMRpro Ambassador in reply to HeronNS]

Wasn't PF, definitely not. And this isn't that either - this is achilles and peroneal tendinitis, one in each ankle!