One swollen ankle

[Madmusiclover]

UPDATE

phoned helpline as flaring and got face to face appt with nurse and she called in registrar. No steroid shot as flare abating slightly: got full inspection and they confirmed swollen ankle and other joints. Nurse promised to try to get me review as clear disease progressing and baricitinib not getting it. So no change but I feel I’m back in the system. Such as it is.

I’ve got an unexplained swollen left forefoot. Had it for couple of years at least. Rheumy could not find cause. I now have a swollen, slightly puffy right ankle and puffiness at bottom of right leg. Never diagnosed with OA/RA in right ankle but I have complained of pain in ankle before. Never been followed up. Anyone else experienced one ankle swelling up? What would you recommend I do.? I should say I know I’ve got OA/RA in right knee and had a steroid injection (trying to delay replacement) in it just before lockdown in March. I’m on Baricitinib and RA currently pretty well controlled ATM. I’m not flaring this week! 🙄 Thanks for reading.

[Pippy25]

So sorry to hear this and while not a doctor I would get your ankle checked out and especially as you have mentioned the problem with your right knee. I have OA/RD in my right knee and a swollen left ankle and in my experience I have unfortunately had to shift my weight onto the left side to help me mobilise which is not good and has put pressure on my left leg and my ankle is swollen. So best to get this looked at and then you can identify what is going on and take it from there. Hope you get it sorted and sending my best wishes to you, take care.

[Madmusiclover in reply to Pippy25]

Thank you so much. Getting it looked at is not easy where I live but I’ll try nurse helpline next week.

[Pippy25 in reply to Madmusiclover]

Take care and let us know how you get on x

[Neonkittie17]

I amsorry to hear this. Sounds very familiar too I have a swollen right knee and a baker cyst on and off but I manage it and it isn’t bad enough yet to have surgery but I’m stubborn that way too. I have RA and OA due to old joint damage and my left foot and ankle are far worse than the right and permanently bigger as I go heavier to that side just as Pippy describes, to avoid putting pressure on the right knee. I have had a lot of expert advice from the rheumatology physio and hydro helped a lot to get it moving as it can seize up, but it had to stop due to the virus.

AAlso having good support under my feet is really important and is to us all with foot and ankle problems. I have had shoes and boots made and orthotics for them. The ankle boots are very cool actually! I hope you get the help and relief you need very soon. Sounds like the steroid injection is wearing off that you had. Shame they do as they work so well for me and usually last about 9 months, The physio told me the way my left foot and ankle go down flat and quite heavy when I walk doesn’t disperse the fluid enough back to that leg to stop it pooling in the ankle. I’ve had it xrayed end of last year and apparently I’have bone thinning there over the top of the foot. I do exercises for it every day as given by the physio. My physio is excellent at diagnostics but he’s been doing his job for almost 40 years now so he can tell what’s going on by a quick exam and a look. Can you ask your rheumy to see a physio at your hospital.? Has the rheumy seen the puffed up right anole? They can usually tell from touch and exam if it is inflammation. I would tell your rheumy nurse. The humidity/weather is also causing quite a few of us to have swollen ankles and feet. Ugh. 🤨 Good luck. x

[Madmusiclover in reply to Neonkittie17]

Thank you. Last time I phoned rheumatology there were no appointments of any kind. Only the nurse helpline. In fact my GP has been ‘filling the gap’ as best he can bless him. I’ll try ringing helpline next week.

[Neonkittie17 in reply to Madmusiclover]

Sorry to hear this but not entirely surprised. Hope you can get through and speak to your nurse next week.

[Madmusiclover in reply to Neonkittie17]

Thank you. It’s a lottery for sure. Read with envy of people who have seen or talked to a rheumy!

[Neonkittie17 in reply to Madmusiclover]

Haven’t spoken to my rheumy since I was last there in routine clinic in January. Have spoken to my biologics specialist nurse three times since March so she’s keeping in touch.

[Madmusiclover in reply to Neonkittie17]

That’s good. My last appt was October 2019. I’ll be lucky to get another this year.

[Neonkittie17 in reply to Madmusiclover]

Whereabouts are you?

[Madmusiclover in reply to Neonkittie17]

Leicester. It’s never been great appointment wise.

[Neonkittie17 in reply to Madmusiclover]

Sorry to hear this. On my med (Rtx) we are supposed to see someone every three months in accordance with the NICE guidelines I was told when starting my med in 2014. Whether that guideline has changed I don’t know over the years, but I was every four months until the virus crisis. Now of course it’s erratic and gone out of sync as would be expected.

[Pippy25 in reply to Madmusiclover]

Sound like a few GP's are filling in gaps and not only during this pandemic too.

[nomoreheels]

Well, I can tell you what I have had/had done, though nothing has been found for mine either. My right is slightly worse than my left but the first attempt was diuretics prescribed by my GP. They didn't help but as I was due to see my Rheumy we decided to take it up with her. As it happened it was an SpR who took the appointment but nevertheless he arranged for me to have an echocardiogram which didn’t shed any more light, not relative to my swollen feet & legs anyhow. That's as far as we've got, interest has been lost, they're still swollen with no signs of it abating. Like me yours obviously isn't weather related so I'm sorry I can't really been of help, other to say I empathise & hope it's not causing you pain.

[Pippy25 in reply to nomoreheels]

I was given diuretics and they were awful and had to stop them. They were causing more problems than solving anything.

[nomoreheels in reply to Pippy25]

Fortunately I had no issues with them, they just didn't solve the problem. Sorry you were bad on them Pip.

[Madmusiclover]

Thank you. Actually don’t think it is weather related as it’s only one and tbh I’ve probably been in denial about it for a while but hubby said it was quite clearly swollen....why aren’t people interested in ankles? Poor friend of mine has just had hers fused. Did not go well.

[nomoreheels in reply to Madmusiclover]

No, mine isn't weather related either, it was my GP's initial thought. In my opinion ankles & feet should be included in the DAS 28, rename it DAS 30! Mine used to be always included in my DAS exam, from diagnosis to 2013 but it wasn’t DAS 28 they used.

It doesn’t sound as though your friend's op was successful at all.

[Madmusiclover in reply to nomoreheels]

So agree. I was shocked to be told feet weren’t included!

[Sharonbernt]

I have had a very painful and swollen ankle for over two years. No one would do a scan on it and kept blaming RA I finally had enough and went to see a podiatrist it was the best £45.00 I have ever spent. The podiatrist suspected sinus tarsi syndrome which I had an ultrasound scan for and it was confirmed. She then wrote to my doctor and I had an appointment for orthopaedics within three weeks.

[Madmusiclover]

Thank you. Oh to find an open podiatrist in locked down Leicester.....

[Leics]

I’m in Leicester too but I managed to speak to my consultant when I was having a massive flare which I’m still experiencing. My feet and ankles are always swollen and very sore too sometimes worse on the top of my foot but mainly around the ankle and Achilles. The weather plays a big part with fluid build up. Might I suggest that if you’re worried and it’s having an impact on your ability to be able to walk that you contact your consultants secretary never easy but lots of persistence and they’ll get back to you eventually. I’m not going to have a face to face appointment anytime soon either as I’m clinically very vulnerable and need a new treatment. So I’m with you with respect to finding it difficult to get help atm. That doesn’t stop you seeing your GP though and if it’s fluid related then perhaps they could give you a very short term low dose water tablet which has sometimes helped me in the past. Only other thing I’m told to do is use ice packs drink more water and use compression socks or bandage and raise your feet whenever possible. Can’t say that that has ever helped me much but worth a try. Have to say though that my R.A. affects my hips ankles and knees the most but I’m lucky my consultant treats me as a whole and not just using DAS score.

[Madmusiclover]

Nice to hear from you. Yes I know persistence pays off. Sometimes it’s too much effort when fatigued. During massive flare in lockdown I was offered gabapentin by nurse and even then hospital wrote to my GP to prescribe it who in turn wrote to them to complain they should have prescribed it. By the time the letter arrived at GP I wasn’t flaring! I really think current issue synovitis not fluid retention. Other ankle fine.

[helenlw7]

I have a swollen left ankle, considerably larger than my right one. After x-rays and ct scans it showed that my sub-Taylor joint is damaged, probably osteo rather than R.A. The ankle joint could be fused but the hospital won’t do it because I’m steroid dependent so too big a risk of infection. I’ve been having guided steroid injections instead. They do work but I was due another one in July. Hospital won’t do it because of Covid and increase my risk.

[Madmusiclover in reply to helenlw7]

Ah interesting. Good luck. I was fortunate to get a knee steroid injection just before lockdown; and it’s still working!

[helenlw7]

I had a knee one in February and my knee is still ok. My gp does these. I don’t think he would do another one yet because my lung consultant ( I also have a lung disease, bronchiecstasis, and uncontrolled asthma) increased my daily steroid dose to 20mg because breathing was becoming more difficult. It also improves my R.A. pain and stiffness but does nothing for my ankle!

[Madmusiclover in reply to helenlw7]

You poor love. We are often between a rock and a hard place aren’t we?

[helenlw7]

We definitely are! My breathing is worse because I don’t walk enough, and I can’t walk enough because of my ankle, knees and hips. It’s a vicious circle.

[Sops in reply to helenlw7]

I am in a similar situation to you and am finding a walk difficult with Bronch problems but need to exercise my swollen ankle. Have been under podiatry for 2 years with water based exercise but now passed to rheumy. Also have osteoporosis and osteoarthritis so subject to falls. On Azithromycin for Bronch. and steroids for asthma, am wondering if current damp conditions are making pain flare up although chest is loving it!

Cannot win really , take care Sopsx

[helenlw7]

I had a telephone consultation last week with my lovely lung consultant. He said there has been research done into azithrmycin and asthma. I’m now taking 500mg three times a week and he’s going to ring me back in 2 months to see how I’ve got on.

“Our study provides clear evidence of benefit of add-on azithromycin in reducing asthma exacerbations in adults with uncontrolled asthma who are taking maintenance inhaled corticosteroid and a long-acting bronchodilator. We also show improved quality of life.”