Water Retention & Pred
Posted , 12 users are following.
I've been on prednisone for about 2 years, starting at 15 mg and working my way down, now at 5 mg. About a month ago, I woke up one morning with horrible swelling in my calves, ankles, and feet. Doctor gave me a bunch of tests, couldn't find any reason for it. Prescribed spironolactone 25 mg daily, compression socks, reduced salt, elevated feet. This helped, but I had bad side effects from the drug and had to discontinue. Now the swelling is increasing and increasing. Not only calves, ankles, and feet but up my thighs, abdominal distention, and fingers (can't wear my wedding ring).
The only cause the doctors could guess at was prednisone. This doesn't really make sense to me, since I've been on it quite a while and am at the lowest dose I've been in a long time. Doctor said pred could take a while to have this effect. Is that true? Could this be from pred?
If so, is there anything I can do about it? My skin feels like it's getting very tight. I'm afraid how bad this might get.
I've read about the rebound effect from spironolactone and wonder if this increased water retention is due to that. I know this drug affects hormones, and hormones can cause swelling.
I've now been prescribed Lasix, planning to start later today, but concerned about side effects.
Anyone who has experience with water retention due to pred (or anything else), I would love to hear from you and know whether you think this could be prednisone related or if it sounds like something else. And if there's anything I can do beside what I'm already doing and starting the Lasix.
Thanks!
0 likes, 27 replies
karenjaninaz jeannecatlover
Edited
Jeanne,
Not every symptom we get is from prednisone. I lost most of my swelling by 5 mgm. Are you on any other medications which could have their own side effects? Any drug can suddenly turn onus after taking it for years. I was taking Pepcid(famotidine) an H2 inhibiter to protect stomach from prednisone. for many years. Last few weeks developed more frequent palpitations than in my usual past history. No other symptoms like high blood pressure, dizziness etc. I looked up famotidine in my professional drug database and indeed saw arrhythmia as an adverse effect. All my tests in the past were negative for heart disease. I stopped the famotidine and, after 3 days the palpitations ceased. I also have the same result with H2 blockers used for allergies like cetirizine.
Supplements can also have effects. They are not benign and can turn on someone after many years of "successful " use. High dose ginger can also cause palpitations.
That's not your problem. I suggest you demand complete blood chemistry test to make sure it's nothing else.
jeannecatlover karenjaninaz
Posted
Thanks for sharing your experience. I was given a bunch of blood tests when the swelling first started; everything looked normal. I'm going for an echocardiogram on Tuesday, since heart is the one potential cause they haven't eliminated. I expect it will show normal, since that's pretty much the story of my life. Many chronic conditions, no explanations. They're also re-doing all the blood tests.
It sounds like I'll have to double-check possible side effects on all my other drugs and supplements.
ptolemy jeannecatlover
Edited
I have had exactly the same problem, my ankle in one leg started to swell, then the other, then my feet, then my legs.... doctors shrug and say it is caused by pred. I have been to two people for lymphatic drainage which was expensive and did not really work. I have also had various leg massages, some have been really good and others not so good depending on who was doing it. I do find my calves are particularly tender, I don't know if you do. The skin on my legs is incredibly thin and every so often I get nasty blisters which I need to get dressed by the local nurse.
jeannecatlover ptolemy
Posted
Leg massage sounds good. I haven't tried that. Mine are a little tender, but not too bad.
Do the doctors say the swelling will go away when you reduce to a certain level of pred?
ptolemy jeannecatlover
Posted
They have not said anything, probably because they do not know! They did test for heart failure and that was about it.
andre68439 jeannecatlover
Edited
Hi Jeanne. A fairly unknown side of PMR is a set of symptoms in a minority of patients that include swelling of extremities including hands, ankles, feet, before PMR diagnosis or Pred. Some even mimic carpal tunnel. I had 6 traditional PMR symptoms but not swelling. A relapse ten years later was limited to swelling of calves, ankles, hands and feet, and Carpal Tunnel symptoms. . However, Pred cleared all of them up quickly. So I am not sure why you have it or why it has gone to other than extremities. Suggest you look up "Distil Extremity Swelling with Pitting Adema in Polymyalgia Rheumatica" https://www.ncbi.nlm.nih.gov/pubmed/8546741 . You may also look into RS3PE on the web. Good Luck, hope you get to the bottom of it.
jeannecatlover andre68439
Posted
Thanks for the leads! I had no idea PMR could express itself that way.
ptolemy jeannecatlover
Posted
It is not usually PMR that is expressing itself but the steroids!
peggy_56092 jeannecatlover
Edited
During my first year or two of pmr, my knees were swollen. xrays showed bone on bone. Arthritis was blamed. My knees were drained twice within two years and I was given steroid shots . The second year of PMR (at 6 mgs) I had one successful knee replacement. Both legs were very swollen for months after this operation. I had no further trouble with my other knee, didn't need shots or anything. I did up pred to 7 mgs.
Before pred and pmr was diagnosed, my fingers were so swollen I couldn't wear my many rings. Eventually the swelling went down after 15 mg pred.
I am guessing you have reduced pred too quickly. It took me almost five years to get to 5 mgs. I am now on 4 mgs and my body says not to go any further. I recently tried for 3 1/2 twice and my legs began to hurt, couldn't walk around the block without pain.
jeannecatlover peggy_56092
Posted
You have totally blown my mind with the idea that the swelling is from too LITTLE pred. I kept telling the doctors it didn't make sense to blame pred when I was at my lowest dose ever. Now I see that the swelling may be caused by being on the lowest dose ever.
I spent the month of February reducing pred from 5.5 mg to 5 mg using the DSNS method. I woke up with my calves, ankles, and feet horribly swollen on March 4.
If the swelling is due to the reduction in pred, then will it go away as my body adjusts? (Admittedly, the swelling only seems to be increasing almost 3 months later.) Or do I have to go back up with my pred dose?
I have worked so hard for so long to reduce little by little, and I have virtually no PMR pain right now. I would hate to go back up and lose my progress.
I'm wondering if I could do a test, go back up to 5.5 for a couple days and see if that helps. How long do you think I would need to be on the increased dose to see a reduction in swelling, if there's going to be one? I'd like to be able to drop back down to 5 mg if it doesn't help, rather than doing the whole DSNS process again.
One more question, if you don't mind, if the swelling is caused by too little pred, is it possible Lasix, a diurectic I started yesterday, could solve the problem so I don't need to increase the pred?
Thanks so much for sharing your experience.
EileenH jeannecatlover
Edited
RS3PE that was mentioned above might appear at too low a dose of pred but when it was a symptom at the start of PMR it usually resolved when you go onto pred and doesn't return. I don't know if it can develop later - that's a really interesting question that I'd like to know the answer to!!!
If your doctor is trying you on diuretics do please ask them to check your electrolytes now and again. Care is needed combining pred and diuretics - better safe than sorry! Pred itself can act as a diuretic - that may be what happened for you.
jeannecatlover EileenH
Posted
I'm not sure if I have this right or am confused. Hoping you can help. The impression I'm getting from people's responses is that there are several possibilities.
First, the swelling could be another symptom of PMR, though one that is less common. In that case, it may have shown up now because the amount of pred I'm taking is enough to handle the pain symptoms of PMR but not the swelling. Does that sound right?
Second, the swelling could be from a related disorder, RS3PE, which perhaps I also have, or recently developed. Perhaps the pred was treating it and now I'm not taking enough, or perhaps I just developed this.
Are these two distinct possibilities or are they the same? I'm not quite sure.
Then there's the possibility that this is some delayed side effect of the pred itself (the doctors' theory) or an effect of something else I'm taking (I'm taking many supplements, but none are new; I'm very consistent in what I take and what I eat so I can track any effects).
I just had a whole new battery of tests, including an eccocardiogram, to satisfy a new doc, and they all came back normal, as usual. Perhaps someone should tell that to my body.
I would love some advice on whether I should increase pred for a short time to see if the swelling decreases. How long would I need to increase to know?
Since I decided to start on a very low dose of Lasix (10 mg), I haven't seen any reduction of swelling since I started 5/23. But the increase has stopped.
Thanks for any further advice/information/suggestions!
EileenH jeannecatlover
Posted
Your first and second points could be the same or different - RS3PE can be a symptom in PMR but can also be a separate item. I know - that is SOOOO helpful!!!
I get swollen feet if I eat out for a few days in a row - simply too much salt in commercial or processed food. I didn't find lasix helped my swelling - but manual lymph drainage did, even a single treatment concentrating on the worse leg achieved a minor miracle which has lasted. I also eat a low salt and low carb diet - more salt, more carbs often result in puffy ankles for a few days.
No reason why you can't increase the pred dose for a week and see if it helps - and drop back to the previous dose without any trouble if it doesn't.
jeannecatlover EileenH
Posted
Thank you!
Tinapoly1 jeannecatlover
Posted
Hi Jeanne, I gained 55 lbs. from the Prednisone that I have been one for 2.5 years. I have been thin my entire life & I am almost 66 years old. I am devastated my the way I look & it got so bad that I couldn't get my shoes on let alone having to buy new clothing every 2 months the 1st year not understanding that I was going to gain weight every month until I topped out at 55 lbs. My doctor finally put me on a daily water pill & I lost 15 lbs. in 2 months & have stayed at the same weight for months now but I still hate that I am 40 lbs.up . I am worried about my kidneys though & my blood work shows that my kidneys are getting worse & wonder if that is from long term water pills or just from ageing .What is the spironolactone for ? Best wishes & I'm sure you are starting to loose some water weight from the lasix.
karenjaninaz Tinapoly1
Posted
Care must be taken with pred and diuretics. Are you using any otc supplements? Examine everything you swallow. You can check this with the pharmacist. They know more than the doctor about drug/ supplement interactions. some patients have untoward reactions to many good drugs but, for one reason or another, they cannot take them. Sometimes one drug cancels out another.
jeannecatlover Tinapoly1
Posted
I completely understand. The doctors don't seem to get how upsetting it is to lose control of your body and have it turn into something alien.
Spironolactone is another diuretic, but it works in a different way than Lasix. It suppresses androgens, I believe. I think that may have caused the water retention to worsen. There's a danger of that when you go off it.
Tinapoly1 karenjaninaz
Posted
Thank you Karen. I initially thought my doctor gave me Furosemide for my lupus since that is what the appointment was for . He never mentioned he was giving me a water pill. I know he commented how swollen my face,body, ankles, & feet were. When I found out a few months later what I was taking I was afraid since I know diuretics are not supposed to be taken long term since it's hard on the kidneys. As far as otc suppliments I take a multi vitamin, vit. D, CoQ 10, & get a B12 shot once a month. Why? Can any of these have a negative reaction with my meds. ?
Tinapoly1 jeannecatlover
Posted
Hi Jeanne, Thanks for your input. How ironic that my fiance just picked up what I thought would be the generic for Lasix which is furosemide which I've been on for months & the new drug is Spironolactone like you mentioned. Is this the drug that suppresses androgens or is it the Lasix? I know my endocrinologist said Prednisone shrinks our adrenal glands down so small & no longer functioning & if I ever get off Prednisone that it takes a full year for the adrenal glands to come back & function again & the adrenal glands are what produces our natural androgens. I haven't taken my lasix in a week & other than getting blown up with water again I am feeling my normal crummy self because I have many auto immune problems. I called the pharmacist & she said that the Lasix is the same as spironolactone .Didn't you gain a ton of weight from the Prednisone ? I wasn't put on the lasix for 18 months after I was on the Prednisone & was massive for that entire time even when I went down to 5mgs. for a long time now.