Fluid Retention

Hi Catie. My Mum had to take diuretics when she was on high steroid doses. After a couple of days she started to feel the benefit although she did moan about keep needing the toilet! The only real side effect she had was occasionally feeling faint. Hope you're starting to feel some benefit.

Take care from Lizzie xx

Things do seem to be moving (?) today, Lizzie Ellen. Will see what happens over the weekend.

I definitely don't feel as bloated as usual.

Catie

Hi Catie,

I too have had fluid retention especially swelling ankles, started off not too swollen , then when I dropped to 20mg it became quite obvious & achy too.

Anyway this week have dropped to 19mg & hey presto reduced swelling!!

No idea why except reducing again.

Hoping it wont get too swollen again.

Cheers Amycakes.

They do seem to be having some effect, the feeling of restriction around my feet and ankles isn't as bad as it was and I can get around a bit quicker. I still have a lot of pain in my legs, which is probably the Fibro. Will see how it goes, I have to go back in two weeks anyway, so will at least give it till then.

Catie

Hi everyone I will have to speak with my doctor about the swelling of my legs etc and see will she give me something to reduce the swelling!!

Pleased you're starting to reap the benefit of the diuretics Catie, hope you don't spend all weekend dashing to the loo! Lovely sunny day here in Basingstoke. Hope it's nice where you are. Take care.

Love from Lizzie xx 8)

Hi Catie,

I hope you had a better day and the diuretics are doing their job for you and that you are feeling the benefit.

I have had a lovely week-end as I went to a BBQ last night in our golf club and played reasonably well today for the first time since my PMR journey began.

Yesterday was our Captain's prize to men and the guy who won 3rd class has been suffering from Muscular Dystrophy for several years now. He is the loveliest ,cheeriest person and never bemoans what life has thrown his way.

He can barely walk in a straight line, has difficulty speaking and drives a specially adapted car. I have never seen anyone so elated at winning a

prize, and the whole room was on their feet when his name was announced as a winner, as we all knew how much it meant to him. I was sitting beside him and felt very humbled, as compared to him my obstacles are small fry, yet HE was concerned for how I was doing :oops:

It just goes to show, even on our worst days, there are folk out there that have far bigger hills to climb and we should all be thankful for what we CAN do :wink:

Hope everyone else had a good week-end aswell and the hills are becoming progressively smaller :idea:

Love to all, Pauline.

Pauline - so glad to hear you were out on the golf course! You must be feeling a bit better then?

What a gracious person your friend must be. I know I couldn't deal with a diagnosis like that which is so much more horrid than mere PMR. It's a pain but won't handicap us like so many other things. Funny how different diseases bring out different aspects of a person - I have never met a person with MS, for example, who wasn't difficult to deal with. They seem to have the entitlement mentality as an added extra to the disease - my nurse daughter says they are exceptionally difficult on the ward too. Maybe it IS part of the disease - they aren't the only ones with a bleak view of their future but others often do seem to manage it better.

Here's hoping for more good golf days - though I imagine some better weather would help you! We are having high summer here at pesent - almsot 2 weeks should be completed by the end of this week, with mid-pm, in the shade temps in the mid 30s, even here at 850m. In the sun it is hopeless trying to do anything, even the balcony got too much in the shade the day before yesterday! But we've had to wait for it!

cheers, Eileen

Hi Eileen & all,

Was on the golf course.....playing might be a very loose interpretation :lol:.

It was onlly nine holes and my real purpose was to drive my hubby home as he did the same for me after the Lady Captain's dinner. The on-going pain and stiffness in my hands makes actually playing with any degree of competence difficult, but I potter around and have lunch with my girlfriends so the social aspect is great 8).

We head back to Spain next tuesday for ten days so hopefully I will loosen up again a bit in the sun, then I start my new injections when get back.

Hope you are starting to see some improvement again after having to increase.

Love to all,

Pauline.

Who cares how loose the description needs to be! You were there! Bit like me and skiing - I ski, but not the sort lots of people would describe as skiing. No black runs, no long runs - at least not without a break in the middle - rests when required. Makes it difficult to ski with others unfortunately. Except with my husband but he takes it to another level - one shortish run, coffee time. Second shortish run, beer time. Which then merges into lunchtime :roll: Then its time to go home. Bah!

Eileen

Hi Nefret,

I am a newbie to this site and saw your post about fluid retention. I am having that problem too! I could really relate to your statement about “feeling of constriction in my feel and ankles”. That is how I feel too and makes it more difficult to walk.

I am tapering my Prednisone and am now at 18 ½ mg. I had been at 17, then had a flareup of my PMR or my FM, they were not sure. So I went up to 20 mg for a week, then 19 for 1-2 weeks. I decided to do 18 ½ for the second week. Then she is going to leave me on 18 for 4 weeks, since we will be out of town for 2 of those weeks.

So far my PCP had me increase my dose of Hydrochlorothiazide, which I take for my blood pressure, but it is also a mild diuretic. It is not helping much, so she said I may need to take some Lasix.

She also started me on Lyrica for the FM. It really seems to be helping with the pain. I even stopped taking my Tramadol at night. The problem is that Lyrica has fluid retention as a side effect too! So now I have Prednisone, PMR, Lyrica, the weather (very hot summer), and my weight to blame for these swollen ankles!

This is the first time I have tried the Lyrica. She said the usual dose for FM is 150 mg twice a day. But I do not like meds so convinced her to start slower for me. I took 100 mg at night for a week and started sleeping better. Then I added 50 mg in the morning and started to have better days too. I am working my way up to the recommended dose.

But one joy seems to always have an accompanying problem! Because I am sleeping better, I now have a stiff neck! (I can only sleep on my right side due to left hip problems). Does it ever seem like we cannot win?????

Going to my PT today and will ask her to work on my neck.

Well, hi there, Nana!

I know your name from the AI site - I do look in there but don't post much, maybe when the winter comes along I will put more time in on the forums.

The diuretic (combined with a couple of chilly weeks here) has helped with the swollen ankles but unfortunately the pain hasn't gone, in fact it seems worse now they are not so swollen. I guess I maybe have some tendon damage or possibly muscle weakness from the Pred. Will have to take them back to the doctor and see what she says.

I've got FM, too, but I can't take Lyrica. I have amitriptylline which helps at night and I spend the days trying to distract myself from it - sometimes it works, sometimes not!

I had a recurrence of the GCA symptoms earlier this week so have gone up to 12.5 Pred (from 11). It's amazing what a difference such a small amount makes, feeling much better at this end of the week.

Hope your weather is being kind to you; nice to 'meet' you!

Nefret aka Catie

Hi Catie,

Thanks for the response. Just got back from PT and she worked on my neck with ultrasound, traction, and some massage. It already feels some better and my ROM is better. :D

I know what you mean about small dose changes making such a difference.I think Eileen was the one who likened it to changing just a little something in a baking recipe with disastrous results. :o

Hope everyone has a nice holiday weekend. I have another PT appointment Tuesday to work on my neck again.

Hi Nana, and a big welcome over to this side of the pond from me, too. It's been a bit quiet over on your usual site in the last few days - do hope everyone is ok.

I'm not sure if I suffered fluid retention as such from the steroids but I certainly suffered from a frequent \"feeling of constriction in my feet and ankles\", also in my knees which I put down to PMR itself. However, if you suffer from swelling as well that may perhaps be aggravated by the \"very hot summer\".

Hope you have a good couple of days away.

MrsO(aka Shirley, aka Celtic/Pearl!)

I'very been taking diuretics for the last 20 years, what would like to know...i'll see if I can help..?