Stiff Ankles

[Glennda]

Has anyone else experienced stiff ankles as part of PMR?

[Rosbud]

So pleased someone else has this , thought I was the only one x

[Glennda]

Thank you for your speedy reply! I was concerned that maybe something new eas developing.

[lesley2015]

Yes- I have chronic bilateral archillies tendinitis- very sore!

[Rimmy in reply to lesley2015]

I seem to have a bit of that going on too - but fortunately it is improving although I have had a recent upward 'taper'.

Rimmy

[Mikb]

Glennda! Long time no hear from. I was wondering how you were doing. I have a very sore right Achilles' tendon and a torn left Achilles' tendon - a result of the prednisone. So be careful on hills and stairs and carrying heavy things.

[Glennda in reply to Mikb]

Thank you, Mikb. It has been a while. I am down to 5 mg of pred and hoping to slowly go off. The ankle stiffness and pain arrived after I walked on rough ground. So, I guess itvis the PMR. How are you doing?

[Mikb in reply to Glennda]

I'm doing okay. Down to 8 mgs now. Are you on Actemra too? I remember there was some shot you were getting at the hospital??

[Glennda in reply to Mikb]

Yes, I did prolia for my bones. I have only done Prednisone for the PMR and GCA. I see the rheumy again tomorrow.

[Glennda in reply to Glennda]

Glad to hear that you are down to 8 mg. Are you working?

[Mikb in reply to Glennda]

Not back to work yet. Hopefully later this year!

[lesley2015 in reply to Mikb]

how interesting my Rheumy has not mentioned it could be a side effect of steroids?

[Mikb in reply to lesley2015]

My rheumy didn't either. It was when I went to my GP with sore (not stiff I guess) ankles that I was told it. Not everyone gets the same side effects, and if they listed them all off it would be too scary!

[lesley2015 in reply to Mikb]

Mmmm like many here I have had quite a few that continue to cause problems even though my dose is much reduced, ankles and tinnitus which can be caused by preds also. Would I have taken it if I had known? if not for the risk of going blind I would not have .....

[Mikb in reply to lesley2015]

I have tinnitus too...

[lesley2015 in reply to Mikb]

If we can see the pattern not sure why the medics don’t seem to?

[PMRpro Ambassador]

I had problems with feet and ankles in the first 5 years of PMR with no pred - it improved after about 6 months on 15mg pred.

Having read the other posts - I have also had achilles tendonitis which was totally different to the stiff ankles and foot problems.

[lesley2015 in reply to PMRpro]

Do you think this was steroid/condition add ons or unrelated?

Mine have been scanned and show thickening in both.....

[PMRpro Ambassador in reply to lesley2015]

Mine was definitely NOT pred - I wasn't on it. Since it resolved with pred - I think it was PMR.

[lesley2015 in reply to PMRpro]

Interesting - my pmr/FC’s is apparently non active according to bloods therefor Rheumy says all current pain is Fibro and inflammatory arthritis- I have no energy left to argue! And there is no connection th the fact my ankles are bad - just being sent to physio .... 😏

[PMRpro Ambassador in reply to lesley2015]

Hmmm - you can have PMR symptoms without having raised blood markers, and that also applies to people whose marker WERE raised originally but are on slightly too low a dose of pred. They don't know why but the pred seems to inhibit the liver making the proteins that raise those markers in some way. If a bit more pred helps the pain - it ain't fibro. And if a bit more pred helps the pain when nothing else does - what's the matter with that? Grrrr!

[lesley2015 in reply to PMRpro]

I cannot understand why these consultants don’t seem to have or accept this information?

[PMRpro Ambassador in reply to lesley2015]

Because it is often patients they hear it from - and how on earth could WE know? We are only patients - they are the experts. And all too often arrogant as h*££.

[lesley2015 in reply to PMRpro]

are there any medical papers to support this do you know?

My current Rheumy, who is more approachable than my first, seems to disagree with my GCA/PMR diagnosis - 3 years ago and keeps asking me questions - did my jaw hurt more after chewing - for me it was a constant ache, a wish to grind to relieve pain and yes worse after eating, that apparently wasn't good enough ....... It feels that she is deliberatley trying to undermine the first diagnosis, although all symptoms went once on steroids - I have actually lost faith in all I have seen except my GP, who is off on extended leave ... so feel a bit stranded really ...

[PMRpro Ambassador in reply to lesley2015]

To support what?

I do wish that doctors would be a bit more professional about disagreeing with previous diagnoses. They did not see you at the time - and exactly what is wrong with having MORE pain than they expect? Every patient with PMR or GCA is different and rarely fit their image. Not all patients have headache, or jaw pain, or visual symptoms or scalp pain - but they still have GCA. There are articles in the literature quoting rates for each so-called typical GCA symptom and the is none that occurs in more than about half of patients at presentation - even headache although it does occur in a high percentage at some point, But even then, it isn't 100%.

A PMR research rheumy asked me last week what was the most needed thing in PMR. I said it is the same thing as for GCA: a reliable test to identify the disease. If a temporal artery biopsy is positive that is wonderful and 100% sure but that only happens in under half of patients - and having a negative biopsy doesn't mean it isn't GCA. The rest of us, and above all the PMR patients, risk meeting a doctor at some later stage who says it it isn't/wasn't without having seen us originally just because we don't fit their ideal - especially when it comes to duration. The median duration of PMR is 5.9 years - not the 2 years they bang on about. And I suspect GCA lasts a lot longer than 2 years too - most people I know have had it for at least 4 or 5 years.

[lesley2015 in reply to PMRpro]

Literature to support the fact that blood markers go not necessarily need to be high for pmr etc.

So interesting - wish I was as good with the info as you!

[PMRpro Ambassador in reply to lesley2015]

This

uptodate.com/contents/clini...

mentions it under Laboratory findings and there are 3 references listed (32-34)

I've had a lot of practice!!!!

[lesley2015 in reply to PMRpro]

Thanks - I will a have a look and if I feel brave, get the highlighter pen out!

[Grants148]

Yes Glenda,l often have stiffness in my ankles,toes and legs,l presume it is part of PMR, this seemed a lot better when l was started on a high dose of prednisolone,,but has come back now l am on a low dose.lt does depend on how much walking l do,and l cannot kneel down without my legs going really numb which means l have to bend right over when cleaning things near the floor or gardening,rather ungainly to say the least !

[kay7954]

Yes, they get very stiff and painful at times. I thought it was old age, but maybe not.

[Glennda]

Thank you everyone for letting me know that I am not alone. Nor is this something "more".

[Rimmy]

Yes achilles tendonitis can cause that stiff ankle feeling too - and like some others here I have that. Mine has improved recently as I mentioned in a response but hard to tell why - it may be because I am taking MORE Pred altho elsewhere there are suggestions Pred can 'cause' this kind of problem.

Best wishes

Rimmy

[Mikb in reply to Rimmy]

Glad to hear your ankles are improving!

[Suedeshayes]

Hi. I too have suffered from a ruptured Achilles’ tendon and ended up in plaster then a boot, took a 6 months to heal. Apparently, Prednisone weakens the Achilles’ tendons, so take care. There are exercises that I got from the physio to strengthen them, but caution is required. As an exeriseaholic, I ignored the warning signs of the Achilles becoming sore, which ended in a rupture after jumping. 🤦‍♀️

[Rimmy in reply to Suedeshayes]

Yes I am concerned about doing exercises to strengthen achilles when they aren't necessarily 'designed' to be sensitive for those of us on Pred. I am in fact generally a wee bit nervous around physios these days as EVERY time I have visited one I have ended up with a worse problem - often a completely 'new' one. It is now clear to me that undertaking some exercises can cause problems if they don't take into account your whole body and what it can or should be subjected to at any point in time ...

[Hidden]

Yes all the time, it contributes to me walking funny. That and stiff wrists.

[powerwalk]

Do you mean "painful"? Well yes - I do.

[yogabonnie]

I have stiff ankles. but not painful. just stiff. I am assuming it will all go away !

[saffron52]

Hi Glennda

Sorry a bit late answering, but I also have this problem along with very stiff knees and hips. It was down to PMR cleared when I was on higher dose of Preds but now I am tapering has come back somewhat. Also if I overdo things ankles, knees certainly let me know. I found that putting a good supportive pillow between my legs for sleeping does help. I can still sleep on my right side still for a certain amount of time and it does help keeping them in a good position overnight supporting ankles I find is espcially helpful. I have a memory foam pillow I use which does stretch from knees to ankles, though I do have hobbit like legs without the furry feet! Its worth a try and you might get a bit of benefit from it. Take care of yourself.

Angie xxx

[Tulabula]

Me too. Also really painful finger joints but think that might just be arthritis. Down to 2.5 mg now.

[Flrchrs]

yes i too suffer with a very sore achilles tendon .makes it a little hard to walk first thing in the morning .been try ice packs