Legs and feet swelling

[jakekell]

I am wondering if a lot of you have problems with the legs/feet swelling with warm weather the worst?
I am keeping my salt down blood pressure is like a lot of you to high, other than getting my feet up not found much else to do.

I saw this issue when I first came on or I said it not sure which, but don't remember if anyone had any answer's. I am 8 years in although my old doc thinks I had it for about 6 years prior to putting a name to it. I am noting this as I think the swelling puffiness is a little more in the last few years.

Mary :drool:

[pwc51]

I suffer paricularly from swollen ankles. It is usually worst at the end of the day and putting my feet up is the best option. My rheumy is fairly sure it is caused by one of my blood pressure medicines.

[jakekell]

I will ask the doc when I am in as the ankles are the worse for me also maybe they can change it. Thanks for the idea it maybe worth a try.

[MikeG-2012]

I am wondering if a lot of you have problems with the legs/feet swelling with warm weather the worst?
I am keeping my salt down blood pressure is like a lot of you to high, other than getting my feet up not found much else to do.

I saw this issue when I first came on or I said it not sure which, but don't remember if anyone had any answer's. I am 8 years in although my old doc thinks I had it for about 6 years prior to putting a name to it. I am noting this as I think the swelling puffiness is a little more in the last few years.

Mary :drool:

Mary, I have a couple pairs of over the calf (almost to the knees) diabetic socks that I wear if I know that I am going to be on my feet the entire day. They help push the swelling out a little bit. Putting them up whenever you can helps too. I noticed that once I started tapering the pred off, mine got better.

[Alysia]

are these your joints that are swelling ?
I think you should also sheck your kidneys. creatinine. urine analysis.

[renidrag]

The first notable symptom I had of WG was swollen ankles and feet accompanied with acute pain. They are not swollen now but left me with ugly brown,black,blue,yellow neuropathic feet and lower legs. I would certainly ask doc and try to get a handle on this swelling. The pressure stockings are a great help.
Dale

[jakekell]

I am pretty sure they did that test 8 months ago, but good idea I will ask him when we go home in May as we vacation where it is warm. I would say it is more the joints when it starts swelling.

[jakekell]

I think I will get the stockings and I am sure your right about time to get a hold of this if possible. I had some swelling on the onset also, but not as bad as your sorry yours was so bad.

Mary

[ingemlb]

I have had problems with my left leg (foot ankle and lower leg) swelling for absolutely years. I can't spend a lot of time sitting with my legs on the floor. I had to invest in a recliner chair and even typing on the computer I do with my legs raised. I had all sorts of tests / checks done over the years but nobody has been able to explain it. I seem to be ok moving around it only happens sitting still for even short periods with the knees bent.

I arrived at the hospital earlier this year with all joints swollen. Then after I started Prednisolone the joint swelling went down but the first few weeks on Pred made both my feet and lower legs swell quite badly even making it difficult to walk. That was despite lying in bed all day with the feet raised. That has now totally disappeared and both feet look very good actually. At home I do move around more and when I sit I am always in my recliner chair with the feet raised.

Have you noticed Mary if it gets worse on sitting? or moving around? I have real trouble with both legs when flying. Hard to raise your legs on long haul economy flights:(

[jakekell]

My swelling is in the same areas and starts when sitting as does yours. We travel through the Mountains going/coming from our summer home to our winter home and when in the higher elevations they swell more like being in an airplane.

Mine has also gone on for sometime and nothing found as yet. I am going to be sure that the kidney check was done when I think it was, which wasn't real long ago. I do notice my ankle bones get really puffy first usually then if I don't get them up they continue to swell. I will pay attention, but if I am moving I think they are not bad.

I have been trying to ride my bike around here a couple of times a day as that seems to help some. I am going to get a recliner for our winter place as don't have one, but use a recliner in the summer up north.

I have a funny feeling this is one of those things that just come with the weggies for some of us. I am wondering if being older than some weggies maybe a factor also as not far from 70, circulation gets a little less on top of having wegs. Thanks for letting me know your having the same issue, hopefully it isn't anything more than "just the way it is"

Mary

[ingemlb]

Yes well Mary this "just the way it is" gets one rather annoyed after a while :( It was "just the way it is" with my shocking cough and my initial Family Doctor didn't refer me to a specialist just told me to "get used to it" he didn't mention in 2003 it could be connected with Post Nasal Drip either. That was also accept "just the way it is" :( So I am not a fan of "just the way it is". Sorry not having a go at you just venting my own frustration and you must feel the same way.

Then all of last year I put up with incredible joint pain thinking it's the immune system healing my inflammation instead of getting it checked and finding it's the immune system attacking my body :(

Now that I have no joint pain I realise in how much pain I was most of last year :(

Anyway I guess I did get a diagnosis finally so all's well that ends well however would have been nice to understand years ago what was really going on. Guess there are many here in the same boat.

If you do find out more would be interested in hearing :) Yes ... get that recliner. They are worth it.

[jakekell]

Venting is no problem have heard a lot of it myself grrrrrrr! My specialist said that years ago I could have had a diagnosis with wegs if they were listening to me.

I will get the recliner for here as your so right it does help and been missing my one at the other house. I will let you if I find out anything different.

Mary

[Victoriaitsnosecret]

My ankles and feet were very swollen as were my lower legs. Sitting with my feet on the floor definitely made it worse. The doc said maybe the prednisone but at that time I was only taking like 5mg. No high blood pressure and I don't eat a lot of salt. Even if my feet or legs aren't swollen I now have these little I don't know fat pockets around my ankles.


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[jakekell]

Victoria,

Interesting I notice the ankle thing even my legs aren't swollen also. I did some reading on the internet and is looks like some of us wegs just have a problem in the leg area. I wonder if the veins are more effected there is some of us and other places in other wegs? I don't know, but glad to know I am not the only one. We are in FL for the winter and riding my funky 3 wheel bike does help some.

Mary

[Victoriaitsnosecret]

It sure is nice to know I'm not the only one. Because I don't "look" sick I think sometimes people think I'm full of crap. Anyway enjoy Florida. I'm in Boston where we are still in the midst of the never ending winter.


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[drz]

When I was in nursing home for long rehab shortly after my hospital treatment for Wegs, I remember my legs were still so swollen I couldn't wear shoes for several weeks and had to wear those inflatable braces that pulsed every few minutes at night to massage the legs and reduce the swelling. Was real hard much to sleep then. I don't know what part of my Wegs or the Wegs treatment caused the bad swelling but it seemed to decrease as i slowly improved. I remember the swelling was so bad the bottom of my feet were round. I wonder if that is part of reason my shoe size grew two sizes after diagnosis of Wegs.

[ingemlb]

It sure is nice to know I'm not the only one. Because I don't "look" sick I think sometimes people think I'm full of crap.

Victoria you are not alone in that. Many many people with chronic illness face the same dilemma in that they are written off as imagining it. Also by many medical professionals. And the other issue is one gets so used to being sick that it starts to feel normal. Over the last few years as symptoms disappeared I only actually realised I had had them when they stopped!!! Or when someone else mentioned they had a certain problem I suddenly remembered I had been living with it for years.
Our original family doctor had on his wall a sign "Don't come to me with a shopping list of symptoms" that REALLY hit home so I would go to him with one symptom at a time and hence a lot of my symptoms never got discussed :( I had of course no idea that symptoms at opposite ends of the body could in any way be related.

Chronic illness is the pits :(

[MikeG-2012]

Our original family doctor had on his wall a sign "Don't come to me with a shopping list of symptoms"...

I sure hope he's your FORMER family doctor now. That is pretty arrogant. With this disease, if they don't know all the symptoms, then they will never be able to diagnose it! WOW, how arrogant!

[ingemlb]

I sure hope he's your FORMER family doctor now. That is pretty arrogant. With this disease, if they don't know all the symptoms, then they will never be able to diagnose it! WOW, how arrogant!

He is definitely former in more ways than one. Six foot under by now :( He did have his good points and I think the sign was put up by the office staff who wanted him to keep on time with his appointments lol. I just took everything too seriously. Since then I have had a really good GP the last 10 years and he definitely encouraged discussing all symptoms. However I had to swap yet again to find someone closer to home and as I am now mainly under the Rheumatologist with Wegener's I see the GP's role not quite so important. However it seems we did strike a very efficient GP just down the road from us. He did come highly recommended.

[jakekell]

I am betting it does have something to do with the size change. I have never been as bad as your situation unfortunate you got that bad before getting the right help. How long have you had wegs now?

Mary

[Victoriaitsnosecret]

I have a pulmonary doc and I see a rheumatologist. I'm part of an HMO. I haven't been to a doctor that specializes in vasculitis. I'm starting to think I should. What's your experience? Thank you.


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[jakekell]

That maybe the thing to do is see a vasculitis doc as I have never seen one. My Rhemy had to retire after surgery gone wrong. We are in a small area when in MI/not found one I want. I am going to look for one in Naples next winter.

I am overall doing very well going to "Healthy living Dr." He does blood test for everything you can imagine. His deal is why is your body doing this not so much that I am a weggie. He does monitor my levels he needs to, but is trying to fix my body to work right, digestion etc. He put me on the Naltrexone 4.5 (LDN), which helps open the cells while your sleeping among other things lots of info on internet. He uses this on all his autoimmune and this has helped me so much. I have been on it for 4 1/2 years, no infections except for one sinus infection that really wasn't to bad.

The meltrex was killing me and lots of infections couldn't do it. My legs/feet are not changed by it, but from what others have said my aren't as bad as some just uncomfortable. I have some bad days, what I now call bad days with my joints, but nothing next to what I did. I still get very tired that is better, but not apparently going to get a ton better.
My hearing is back to where I haven't used my hearing aids in over 3 years now as I had gone completely deaf.

No one else on here seems to be taking this med, Rhemy said it won't work my pharmacist who was a researcher at one time said he is so wrong so I found a doc that uses it. I feel he has saved my life, but feel I want a Rhemy on call in case I need one for any reason including something happens to my doc as he works alone. Hopefully this gives an overview of where I have been with in in the past now 9 years.

[greenjeep]

This could point to kidney disease. Any recent bloodwork (creatinine) or urinalysis?


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[jakekell]

Yes I both of the test you mentioned above one last summer and the other last October both showed kidney function is good.

[greenjeep]

That's good, but there is obviously water retention. It might be worth an update blood test. My creatinine went from 0.9 to 6 in a little oner a month at the end of 2012. Maybe a diuretic is called for??


Sent from my iPhone while driving on the freeway.

[jakekell]

I will be going back to the doc in May will ask for it to be checked. I had several replies from other weggies that seem to have the ankle leg swelling so it could be just one of those peeps. I will have them look to see if the kidneys are still stable, thanks.

[Tom]

You do need to see a Dr that specializes in auto immune diseases and that would be a rheumatologist. I have lots of leg and ankle swelling. Also have swollen hands. I have renal disease and 20%of my kidneys are destroyed from the wegs. For the kidneys I see an internist who specializes in internal medicine. She also adjusts my diabetic meds and insulin. My lungs are gone from the Wegs and I am on 02 and in severe stage COPD. I see a pulmonary Dr. My sinus' are shot from the disease. It has affected the left ventricle in my heart. My SIL,s who go to a "Healthy Living Dr" for just being well and he puts them on a no sugar diet and then he switches to a low protein diet, and then he my do a 7 day colon cleanse. There is nothing wrong with them and never has been so they feel like their method is better than paying a Dr for treatment. Big difference in making you well if you are sick as opposed to keeping you well if you are otherwise healthy. My dr has me on Lasix for the water retention and a low sodium diet. I'm monitored for creatin levels and checking blood cells because I am a cancer survivor but at a greater risk with the Wegs treatment I get. O all my Drs, when I go to see them I get the same test so I am monitored monthly. Here is what my Reumy told me when my first Pulmo Dr left unexpectedly. I chose one in the same office and he was also new, he was also temporary and they hoped to hire him and other permanent. My reumy said that I could do what I want but suggested I find a pulmo that is hired on a full time basis and not just 6 months at a time. He said the reason is, Wegeners is serious business and if I relapse, They will have to bring new Dr up to speed on " MY" health. They work as a team and if I have a breathing issue, it would be helpful to have a pulmonary Dr that knows me and my history immediately to begin treatment. This would apply to all the Drs I have.

Also, my wife works in an organic spice industry and they have everything from soup to nuts. I have arthritic pain from my Wegs but not arthritis. My wife says to the Dr " I was told that Turmeric will cure or alleviate arthritis pain, Have you ever heard of that?" My Reumy, being from India just chuckled and told her that if it was a cure for arthritis, there would be no arthritis in India where he was born! So there was the turmeric and other cures that were organic or wives tales about making people well. While there are some, most are just myth. He told her that if one believes they are feeling better with a spice or root etc. then by all means keep using it but a Dr should be involved with the disease! I have to agree.

[acker]

Hi Mary,
Get it checked out, my Doc always tells me off, if I don't tell him things, I used to think I was moaning all the time, and he said "no it's called looking after yourself" (he's a great guy ) I was very lucky the first thing I knew anything about WG's was when I was taken by ambulance to hospital at 3am with both legs swollen up to the hips and bleeding from everywhere.
They sorted me out ok, so I'm sure they can do it for you too. When I came out of hospital I couldn't walk for 3wks, now I'm back riding my motorcycle. I've heard people say about WG's and age related things, but a lot of the time, what works for me is the way you think about things. I'm seventy this year, and still don't know what I'm going to do, when I grow up.
Take care Acker :thumbsup:

[jakekell]

Tom,

Thanks for the advice my husband and I just talked about a new Rhemy last night. I agree with you that I need a new one tried 2 after my Rhemy retired both duds. I am not in a large area when at our home up north so it hasn't been much to choose from. When in Naples there are many so will look into one here.

My lungs have been good so far, but I know your right more docs need to be involved. I am a lot better with the "healthy living doc" I have been with for now close to 4 years than I was before so will use him also, but I am sure your right about covering all bases. Thanks it most likely was what I needed to hear.

Mary

[jakekell]

Acker,

Wow that was a really bad start of this lovely WG's. I have been very lucky that I wasn't in that kind of shape even though went totally deaf. That got all the docs attention along with the pain in my head sinus. I am also just around the corner from 70 also do understand about not growing up my husband/I try to go from one fun thing to another to avoid growing up!

Mary

[windchime]

Tom,

Thanks for the advice my husband and I just talked about a new Rhemy last night. I agree with you that I need a new one tried 2 after my Rhemy retired both duds. I am not in a large area when at our home up north so it hasn't been much to choose from. When in Naples there are many so will look into one here.

My lungs have been good so far, but I know your right more docs need to be involved. I am a lot better with the "healthy living doc" I have been with for now close to 4 years than I was before so will use him also, but I am sure your right about covering all bases. Thanks it most likely was what I needed to hear.

Mary

Mary if you don't mind the drive there is a Cleveland Clinic campus in West Palm.

[jakekell]

Thanks, will keep that in mind. Naples has a large number so may start here first, but I know my brother has been to the Cleveland clinic in West Palm Beach. My brother also has an autoimmune disease. Cleveland Clinic told him that a lot of people from Scotland have autoimmune issues, both of our parents families came over from Scotland. I mention this just as a little side note as I have noticed several people from that region of the world.

Mary

[mrtmeo]

I know this is an older thread, but wanted to let people know that swelling of the feet and ankles can be due to low Albumin.
My mom's left foot always swells first when her albumin goes below 3.

[ingemlb]

had not come across this before so looked up where you get Albumin from. Protein esp egg whites. In my case I get plenty of those however illness can reduce the absorption of it. IBD for instance or liver or kidney disease. Here is a good link
giving a bit more details. By the way prednisone is another culprit in causing edema.

More info on Edema (http://www.webmd.com/heart-disease/heart-failure/edema-overview)in case others are interested.

[mrtmeo]

Albumin is the protein that the kidneys can dump and my mom has 4th stage kidney failure due to vasculitis.
Because she is dumping too much protein, her albumin gets too low and higher protein brings it up but it also, raises the BUN.

[jakekell]

I had not ever heard about the albumin either interesting. The doctor has changed my blood pressure medicine, which has helped a lot! My vascuitis is very bad a sudden flair up, which may not help plus more prednisone.

I am going to Cleveland Clinic to see Dr. Ville-Forte, who I hear is wonderful so hoping for a real doc to help out the mess I seem to be done. I don't have much to choose in the Kalamazoo MI area so should have done this sooner.

[ingemlb]

the Edema for me has not been a problem since it flared up very badly when I started Pred early this year. Over the years I have struggled with a badly swollen left foot ankle and lower leg. However I could control it by not sitting too long with my knees bent. For years now I have arranged my computer screen over a table that goes across my recliner chair and use the keyboard on my lap. That seems to work. I can spent hours sitting with my leg raised and it won't cause the swelling. I had loads of tests done but no cause could ever be found. Air travel is real bad because then both legs swell.

When I first started the Prednisolone in early Feb this year both my lower legs swelled up badly for days. I had trouble walking. Then a few weeks later they became normal again and neither leg has swelled up since however, I still us the recliner chair for sitting in with my legs both raised.

I checked with my GP last Tuesday if they tested Albumin levels and apparently its' part of the usual bloodworms they do each month since the beginning of the year and mine are normal. MY GP said they would have to be extremely low to cause edema. So ... no closer to what could have been causing it :(

[jakekell]

That is good to know as they just raised my pred while I am waiting to go to Cleveland Clinic. I use the recliner with my computer also and your so right it does help.

[mrtmeo]

Recently, a couple of months after Rtx infusions, the swelling in my mom's feet went away and has not come back regardless of her low albumin or where her creatinine is at, so it is clearly vasculitis causing her swelling.

[ingemlb]

Probably all linked to the Wegener's