Swollen feet and ankles

[valrene]

Wondered if any one else has suffered with swollen ankles, swelling and pain on top of feet. Stopped taking pred 18 months ago, but took 20mg Leflunomide for the last 2years, rheumy decided to reduce Leflunomide to10mg 5 months ago, over the last two weeks had a job too walk very far because of pain in thighs, also with the swelling in feet and ankles. Phoned Rheumy a week ago back on 20mg of Leflunomide, wondered if any one knew how long the extra 10mg would take to help the swelling go down.

[PMRpro Ambassador]

There aren't many people on leflunomide on this forum really. You would get more experience on the NRAS forum.

[markranson]

Swollen feet and ankles were discussed some weeks ago. I took an interest because I was suffering from the same. I'm 58 and live in Hong Kong. I started with PMR back in 2015 and reached 0mg of Pred in January this year. For a year or more prior, while on low doses of Pred I experienced what I assume were aches and pains related to a recovering adrenal function.

Anyway, shortly after getting to zero in January, I started to suffer from sore feet and aching legs. In March/April I started to notice swelling of the ankles. In mid-May I recall reading about the issue on this forum and if I remember correctly, PMRpro suggested the following as a possibility:

RS3PE. Specialty. Rheumatology. Remitting seronegative symmetrical synovitis with pitting edema (or sometimes RS3PE) is a rare syndrome identified by symmetric polyarthritis, synovitis, acute pitting edema (swelling) of the back of the hands and/or feet, and a negative serum rheumatoid factor.

Treatment[edit]

RS3PE responds excellently to low dose corticosteroids, with sustained and often complete remission. Non-steroidal anti-inflammatory drugs (NSAIDs) have also been used. Hydroxychloroquine has proven effective in some cases.[6]

This prompted me to visit the doctor at the local hospital. here in HK to access the government system one has to go to A&E where you're triaged and and then sit and wait to see the emergency doctor. I waited about 2 hours but was eventually seen. They were excellent: Chest X-Ray, ECG, blood taken to test inflammation markers, liver and kidney function, cortisol etc. and everything was basically normal.

Next was to get me an appointment to see a specialist. This is now scheduled for September 2021 but I'll be called within a few weeks to probably have the appointment re-scheduled to an earlier date.

Anyway, I explained to the emergency doc that Diclofenac helped manage the aches and pains in my legs and feet and so he prescribed plenty of those. I mentioned that I didn't want to be taking a strong NSAID indefinitely and I mentioned the RS3PE described above. He said he didn't know about that and would have to leave that to the specialist to decide. He asked me if, in the meantime, I would also like some Prednisolone "just in case". I said yes.

As is often the case with PMR veterans, I decided on a spot of self-treatment. IE, no munching on Diclofenac but a course of Pred instead. The "just in case" Pred I was given was for a course as follows:

5mg for 7 days

4mg for 7 days

3mg for 7 days

2mg for 7 days

1mg for 7 days

Today I just finished the last of the 4mg doses but by day 3 of the 5mg dose I had already experienced a reduction in the swelling of the feet and ankles. things are not perfect and I can still get aches and pains from standing for too long or walking a lot in the wrong shoes by it's been a huge, huge improvement. I'll keep on the Pred until it runs out and then see if the swelling and pain comes back. Luckily, Pred can be purchased over the counter here in HK at the local pharmacy.

So, PMRpro's postulation that RS3PE might be a cause of the swollen feet and ankles could be correct and my response to the Pred seems to back it up. Thanks PMRpro.

[Jackoh]

I was on Lefludomide for about 18 months at a dose of 20 mg. I would say that I had more swelling in my feet and legs whilst on the Lefludomide. I certainly don’t have it now since I have come off it. I also have peripheral neuropathy, in one foot and around the ankle in the other leg. I was never too sure if the Lefludomide caused this. I was given it as a steroid sparer but I seemed to have so many infections on this drug that it really didn’t help me reduce my steroids- I was constantly yo yoing my dose because of the infections and the resultant flares. This obviously is just my own experience- the experience of others may be totally different.

[PMRpro Ambassador in reply to Jackoh]

I think the neuropathy is not uncommon.

[Dambusters]

I have that problem right now. Got advice here to up my dose - had gone down to 9, doctor said go to 10. That didn't work. Took 14 and swelling is down in the mornings but with this heat is up again at night. Not sure if it is a need for more Pred or an underlying ailment. Waiting for call from doctor.

I

[valrene in reply to Dambusters]

Hi Dambuster thank you for replying, this happened to me while I had been on pred for 3 years, put up dose by 5mg did help, then Rheumy decided to start me on Leflunomide 10mg that helped after 6 months I was occasionally getting swollen ankles, as soon as I started on 20 mg of Leflunomide all of my swelling all over my body just fizzled away, moon face,back hump, legs and ankles, it was itching inside didn’t have any swelling at all, 5 months ago he reduced Leflunomide by 10mg, think that’s why my ankles are swelling again, have gone back to 20mg 10days ago still have some swelling, I just wondered if anyone here was on Leflunomide with the same problem, just wondered how long the extra 10mg would take to work,have been of pred for 18months now. Rheumy phoning me back on the 10th of June. Could you let me know what you dr advises please. Wishing you luck with this damn disease x

[stellafmdm]

I found that raising the bottom of the bed a little bit was a great help in preventing swollen ankles!

[Jeanfkelly]

I suffer from Lymphoedema and had pain like you describe.

I have been on high doses of Prednisolone since 2011but wthvthe help of Tocilizumab am down to 11mgs daily.

I started having trouble with what you describe and more about 3 years ago and my GP diagnosed Lymphoedema. After trying stockings and no re relief I asked to be referred to the Lymphiedena service and am now on regular appointments and access to more successful leggings/ stockings.

I couldn't say the steroids are responbsible for the Lymph.

It was just something g waiting to happen, although it does occur in my family.

All the best.