Fluid Retention adding to my walking difficulty - PMRGCAuk

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Fluid Retention adding to my walking difficulty

HappyDiamonds profile image
22 Replies

I have fluid retention in my lower legs, ankles and feet, more in right ankle than left one, the right is where I have achilles problem, its not horrendous but enough to make walking more difficult for me. Hospital physio said I had muscle wastage and I'm doing the recommended exercises. The fluid problem started at the beginning of the year, I was on 13mg Pred then (now 6) and around that time I started Actemra injections which raised my blood pressure and I was put on Losartan & Indapamide which has worked for BP well. The fluid builds up during the day but I'm getting up several time during the night so today I thought I would leave off my BP tablets and maybe take them tonight. Guess what - no fluid retention or muscle aches and heavy legs yet and Im walking well which is strange because Indapamide is a diuretic. I don't know whether its a co-incidence, to blame one of the tablets, but which one, or if its part of adrenals so would appreciate any suggestions from people who have maybe had a similar experience.

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22 Replies
PMRpro profile image
PMRproAmbassador

How bizarre!!! I have a similar problem - right ankle and foot swells more than left and the right achilles is a pain!! I already had it pre-Actemra and it seems to be a bit better since the 3rd Actemra injection. I also invested in a lymph drainage session a couple of weeks ago - may have helped. I'm not on diuretics, just bisoprolol and not a low dose of pred as I haven't reduced yet.

HappyDiamonds profile image
HappyDiamonds in reply to PMRpro

We do appear to have a lot of the same symptoms and tbh I have never understood how I have a lot of things people with PMR describe yet only have GCA. The only thing that is totally different is Im at my best first thing in the morning and go downhill whereas PMR sufferers improve during the day after Pred. Just to add my GP has just stopped indapamide and put up Spiralatone another diuretic for me instead. Will let you know how I get on.

HappyDiamonds profile image
HappyDiamonds in reply to HappyDiamonds

Sorry should be Spironolactone

PMRpro profile image
PMRproAmbassador in reply to HappyDiamonds

This brain read it as that!!!!

Viv54 profile image
Viv54 in reply to HappyDiamonds

My husband take it, he has a heart condition, mine are less strong and work fine .

PMRpro profile image
PMRproAmbassador in reply to HappyDiamonds

Mmmm - but PMR can be part of GCA and there is no way of proving its presence or not. If only ...

HappyDiamonds profile image
HappyDiamonds in reply to PMRpro

I told you previously, according to the Rheumy its not PMR if you can put your arms above your head!!!!!!!!

Seacat30 profile image
Seacat30 in reply to HappyDiamonds

They are very suspicious of how well I can stand up so I had better not admit that I can reach above my head too!

PMRpro profile image
PMRproAmbassador in reply to Seacat30

I can barely walk at the moment - but I can stand from a relatively low chair without using my hands to push me up. Remember being told by a fitness instructor that some amazing percentage of over 55s can't manage that. So I think I can be proubd f myself at nearly 70 and with PMR and 13 years of pred ..

HappyDiamonds profile image
HappyDiamonds in reply to PMRpro

I can get up from the chair now too. I was so pleased when I was able to take away the toilet frame which I needed when I had spinal fractures I would have done a little jig if my legs would have allowed me. Some times we don't realise we are making progress until we look back. Frame is in the garage though just in case. Hope you see some improvement soon.

PMRpro profile image
PMRproAmbassador in reply to HappyDiamonds

Silly ass ....

cycli profile image
cycli in reply to HappyDiamonds

rheumy is clearly a nutter then

piglette profile image
piglette

I have the fluid problem but more in my left leg than my right leg. It does improve in the morning when I get up.

PMRpro profile image
PMRproAmbassador in reply to piglette

That'll be the beer then?

piglette profile image
piglette in reply to PMRpro

🍺🍻🍻

Viv54 profile image
Viv54 in reply to PMRpro

😂😜

Viv54 profile image
Viv54

Hi, i take Losarten for my Bp , i sometimes get water retention around my ankles and my fingers swell. It is the Losarten that causes this. My GP gave me Furosemide ,i only take them occasionally but they do the trick. She also advised me that BP tablets should be taken in the morning and not at night as they will not be as effective at controlling it. It makes sense when you think about it, your not moving around like in the day. The only draw back is you have to be very near a loo !! Because when you have to go you have to go ! But its no big deal i take them early and when im not going out . Normally all fine by lunchtime. Good Luck it worked fine for me 🌷

HappyDiamonds profile image
HappyDiamonds in reply to Viv54

Thank you Viv54, you know I suspected the Losartan not Indapamide so yesterday I didn't take either Losartan or Indapamide and I walked better than I have in months. Today I have taken Losartan only and if my legs swell up guess where they will be going? Getting any of the doctors to agree that any tablet has a side effect is nigh on impossible. I have walking problems already don't need any added ones 😀

Viv54 profile image
Viv54

How strange it was the Indapamide that's caused my fluid ! I missed this when reading your post ! I hardly get it with Lorsartan.But as I said only use water tablets as a as and when basis .Fingers crossed for you.I know exactly what you mean both about Drs and walking, we are trying to make life easier not harder.But please don't stop your BP tablets , just sort out the right one for you .Sounds like your on your way to doing that !Good luck 😊

HappyDiamonds profile image
HappyDiamonds in reply to Viv54

50/50 chance I suppose, but I will find the culprit😀

ShadyLady165 profile image
ShadyLady165

I think we all (including - especially? - the docs) need to remember that everyone responds to drugs differently. I remember someone I worked with asking me if I had an antihistamine they could take. The only thing I had was Sudafed, which I took in order to drive home late at night from Boston to Cape Cod - because it kept me awake. She said she couldn't take it because it reliably put her to sleep. . . so there ya go! Same drug, two different bodies. Why don't doctors remember that???

cycli profile image
cycli

I have fluid in Legs/ankles feet. It's worse end of each day. Today especially bad. Elevation above torso is the only answer to reduction. I discussed this at length with my GP who confirmed it was due to a weakened heart which could not pump blood around adequately. It causes systolic issues and leaks fluid through into the lymph system. I can actuallt feel the strain on my heart now and amjust off to run a hot bath, lie back with feet elevated nicely on the bath rim and soak whilst the legs reduce. Then off to bed after pred for hopefully a good nights rest and a better day tomorrow.

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