Lymphedema disappeared temporarily after cortisone (Me... - LSN

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Lymphedema disappeared temporarily after cortisone (Medrol)

multimarcus
multimarcus

Hello,

Just wanted to share this experience with you. I suffer from secondary lymphedema in my right leg following a regional clearance operation performed 3yy ago. 6 months ago I had a skin rash on my right ankle, I was on holiday in Italy and the doctors, fearing it would escalate to cellulitis, gave me a cure of cortisone (Medrinol) and antibiotics (Augmentin) in pills which I have taken for about 3weeks. During those weeks the swelling of my right leg went down and pretty much disappeared completely for a few weeks. After finishing the cure it started to swell again. Has anybody else experienced this type of reaction to cortisone? I spoke to a few doctors and they knew nothing about it, my MLD therapist couldn't believe her eyes when she saw me after I returned from the holidays with a 'normal' leg. Many thanks for your replies. Best wishes. M

37 Replies
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Dear Multimarcus,

Wow! What an interesting post. Which area are you from?

Obviously we can't self medicate ourselves, but at least something seems to have worked for you.

I am not surprised you had such a negative response from several doctors - unfortunately the majority of them are clueless about LE and do little or no research into the condition. Despite the fact there are millions of sufferers very few medicos bother to get involved. Either we are too quiet about the neglect we face or there are not any big drug bucks to be made.

Anyway, before this turns into a rant - lol - good luck and keep us updated on your progress.

Cheers

Christo

multimarcus
multimarcus
in reply to Christo

Dear Christo,

I was very surprised too to witness such a reduction of the swelling.

And to be completely honest, during those days I was suggested by the same dermatologists not to wear any compression sleeve as to improve the chances of getting rid of the skin rash.

I even remember walking around (I was on holiday back then) without wearing any compression stocking, for the first time since I had the operation. The leg resisted until mid afternoon when I had to relax as it felt I was putting too much stress on it. Soon after that I noticed the reduction of the swelling, which I have related to the cortisone I was taking.

I am always cautious when it comes to cortisone, as I am not a big fan of it, but I have to admit that the results were spectacular; I even felt like taking it again as an experiment to see if the reduction of the swelling can be connected solely to Medrol (that cortisone I was taking).

Mr Ramsay of the Royal Marsden in Sutton has shown sincere interest and asked me more details about it.

Thanks for your kind words, I wish you all the very best

I live in London btw

M

Cortisone will reduce inflammation related to infection (so by default lymphoedema) if used to treat a specific symptom (the rash) in the short term, but causes problems if used long term.

multimarcus
multimarcus
in reply to Lynora

Agree with you, I was pretty scared at the beginning and not very happy to have to take cortisone. I haven't used it again since then, but I wonder if it could be used to reduce the inflammation before undergoing an operation such as microsurgery in the case of lymphoedema.

I did little research but in so far I wasn't able to track down any documented relation between Medrol and lymphoedema.

Lynora
Lynora
in reply to multimarcus

Not sure it would be of benefit pre-operatively - but would possibly be given, short term, post-operatively.

Hi Multimarcus,

This is very interesting indeed, i wonder if a cure for lymphoedema will ever come from a simple coincidence such as the one you describe. (I.e.The cure for hemangiomas has been found only 3 years ago in a very similar way..). Let's see what Dr Ramsey has to say about it..

I agree taking cortisone is no heaven but still a lot better than swollen legs, many people out there suffer from conditions which force them to use it in quantity and regularly so i don't see a big problem myself!

Thanks so much for sharing this and good luck!

Hi Panzanella, thanks for sharing your thought, yes, it'd be great if a cure could ever be found starting from a coincidence, an apparent casual event... I will keep you up to date, will hopefully be able to go see Mr Ramsey soon. In so far I was discouraged from taking the cortisone again, but I kinda feel like experimenting to see if it makes any difference. Bit hard to be prescribed this medicine in the UK though, I might try getting some in Italy next time I will go there. Good luck to you too!

Wow. Maybe, it is a scientific discovery that will change something. Please, let researchers know about this.

Best wishes to you!

multimarcus
multimarcus
in reply to Alla

Hi Alla, who do you suggest I contact? I thought that cortisone had already quite a reputation for reducing the inflammation, as Lynora remarked... perhaps it hasn't been used in conjunction with Lymphoedema yet?

Alla
Alla
in reply to multimarcus

Multimarcus, there exist some anti-inflammatory drugs that really help to decrease common swelling, but not swelling caused by limphoedema. As for as I know, Dr. Stanley Rockson in Stanford Hospital in USA works at the research with some kind of anti-inflammatory to treat LE. I’ve seen his lecture, but I really don’t know any details. You can find it here:


Maybe it'll be interesting to contact to his research team?

multimarcus
multimarcus
in reply to Alla

Thanks Alla, this sounds very interesting, I will watch it asap!

Alla
Alla
in reply to multimarcus

Good luck! :-)

I too have swelling in my right leg following lymph node removal after cervical cancer. I would try anything to get me back to normality. Even if I could take it in order to start from scratch as a means of managing lymphoedema!!

Like others I am amazed by this result, and while cortisone use is not great for you long term, it would be great to think it could be used on a short term basis to reduce cellulitis risk, improve skin condition and allow less compression use for a while. It would be really interesting to see some research into this.

I will certainly be trying to contact researchers or doctors and tell them about my story, hoping this might help them or even help triggering an interest on cortisone in relation to Lymphoedema. I will publish any update I might have in the future.

Just an information that I've found on the page of the Hospital of Stanford:

"If you are interested in potentially participating in these studies, or have any research related questions, please contact our clinical research coordinators at (650) 723-1396, or at lymphatic@stanfordmed".

stanfordhospital.org/cardio...

multimarcus
multimarcus
in reply to Alla

Thanks Alla, will be sending an email very soon!

Hi Multimarcus,

Have you got any news on the medrol front? Have you managed to see Dr Ramsey at the royal Marsden?

Hi panzanella, no news on the me drool. I decided to try another run of me drool with antibiotic for the usual cycle (about four weeks in total) swelling went down although not as dramatically as it did the first time, yet good improvement. Seen Mr Ramsey but wasn't eligible off the treatment. I didn't receive a lymphatic MRI nor lymphoscintigraphy. I was suggested to wait for three years before investigating other types of operations such as the transplant. At the same time I read about this new drug Collategene that is undergoing clinic trial 3 in Japan to cure primary lymphedema and which sounds promising despite being a symptomatic cure it might help those with our condition.

hi multimarcus

Collategene is now in stage 3 clinical testing for perifery artery disease worldwideand in stage 1 for lymphedema in Japan. it might take a while before getting finally on the market but it can be the first trur treatment. with this i mean the first non symptomatic treatment. conservative treatment and surgical treatment treat the symptoms (swelling), collategene can be first ever to solve the bottom line problem: a lacking,undeveloped lymphatic system by make new system grow!

Hi Kharimata, I went to see Dr Michelini in Rome recently. He has a good point when he says that this therapy, in the case of a secondary lymphedema derived mostly by a regional lymphnodes removal post cancerous events, might be a bit risky for this type of patients because it promotes the (bit uncontrollable) growth of blood of blood vessels which might increase the chance of a recurrence.... uhmmmm... bit of a dilemma... but still I am keeping an eye on it and looking ffwd to seeing the first results which were due for publication in late 2014.... basically now!!!! keeping all fingers crossed!

Hi. Yes that might be true. Therefor currently the trial in Japan is only for primary le ... which I have. The strange thing is that in Finland, Herantis is developing Lymfactin: a growth factor to combine with lymph node transfer and this is first for secondary. I think they are working now together with Stanford hospital and Dr. Rockson because in his video he mentioned this too. Maybe the risk is not that big? I have read a theory somewhere that said that bad cells are always in the body. The nodes usually take care of them. If they don't, bad cells can spread to another place causing metastasis. So with less nodes and vessels you are more likely to have infection because your immune system does not work well.

A bit strange : if you have vessels, it can help to spread bad cells. If you don't have any... it can't fight bad cells either...

Collate gene should have posted an update already... guess it is taking longer (like all the research ). Too bad

As an update, I wanted to mention this page from Stanford University med.stanford.edu/clinicaltr... about a trial to explore potential benefits of an oral anti-inflammatory drug against placebo in the management of Lymphedema. The trial is taking place in the US.

Hi Marcus,

I have been reading your post (and replies) with much interest. I have secondary L in my arm. I am Australian but am in Rome regularly as my boyfriend is Roman and lives there. I am moving permanently to live in Rome either Nov 2015 or possibly Jan 2016. I was in Rome for a month this May. I have been back and forth since 2012. I speak only limited Italian (still learning!). Me too, I have seen Michelini at the hospital.

Yes, I discovered this Rockson lecture in August last year. He is re-trialling his anti-inflammatory drug now. It will be ready for FDA reassessment in 2017. The first drug he trialled caused liver problems. So this is a "remake" of that drug. this is a drug specifically designed for secondary L. Rockson said in his lecture:

50:00

Gene Therapy

Cure for primary lymphoedema Milroy's Disease

54:08

Why do some people who have (node dissection and other damaging cancer treatments) NOT get lymphoedema while the rest do? (Rockson says all breast cancer patients in fact have damaged lymphatics after cancer treatments). He says that it's actually a skin disease that (those who get lymphoedema get):

"...their skin no longer tolerates that lymphatic problem...the skin is responding negatively to that lymphatic defect....and if it's a (genetic) switch that's being turned on, then maybe we can turn it off..."

56:12

"...what we found is that, in fact, what Lymphoedema is, is a profound inflammation of the skin...and we found that if we get rid of this INFLAMMATION OF THE SKIN, then in as little as a week, we can get rid of the LYMPHOEDEMA..."

56:45

Stanley reinforces the fact again: "...we haven't done ANYTHING to fix the damaged lymphatics...we have simply turned-off the inflammation switch"

I thought these comments of his extremely interesting. What do you think?

Why is it that people with the same physical trauma (node removal and severed lymphatic system) have such different "reactions" (one gets L and one does not).

Why is it that an anti inflammatory (which doesn't change the damaged lymphatic system) can restore the limb to either normal or close to.

Why can switching off a GENE rid the limb of lymphoedema (Milroy's disease is what was successfully treated with the mouse), with absolutely NO treatment to the lymphatics. (Indeed, in the quotations above, we can read that Rockson ponders whether he may be able to "simply" discover the genetic switch to turn off secondary Lymphoedema as well.)

And something else I found intriguing were these posts. These are comments posted in response to Rockson's Lecture.

I have cut and pasted those I want to draw attention to, however, you can find them all here lymphaticnetwork.org/news-e...

Jill Cummings

a year ago

I would do anything to be able to get rid of my

Lymphadema and I don't suffer nearly as bad as many others do. I was diagnosed at 27. I am now 45. I just had my lymphatic system tested and it came back as perfect! How does one have Lymphadema when their lymphatic system is perfect???? Nobody knows what to do with me. So frustrating. Wish I could find someone to get to the bottom of things. I am so excited to see someone give this some attention! Thank you!!!!!

disqus_HQuf9hmZIe

a year ago

Hey Jill, could it not be another problem? Heart problem, venous insufficiency? My mother has the same. She has similar problems like me (diagnosed with congenital lymphedema) and my grandmother. When she had a lymfescintography done, however, this did not show any problems of lymphatic system... Doctors always believed we have the inherited lymphedema since it occurs in every generation. But, like with you, test did not show lymphatic problems... It is very strange indeed....

END QUOTES

So....what I am interested in, are these people who are told by specialists "well, we don't know what to think...your lymphatics are perfect...etc. etc." It simply doesn't make sense. The text book definition of ALL types of lymphoedema is that the person has damaged or non performing lymphatics which are the root cause of all the symptoms.

Well...for now, I'd better get off my iPad and do my midday lymph exercises! 😁😂😀

I took steroids ( prednisolone) for my asthma and it helped clear my lymphedema in my breast after 2 years of treatment. Not sure why they cannot prescribe this to help

It is suspected that I have lymphedema; the pictures of swollen legs sure look just like mine! After years of no one having any idea what was wrong with me, recently I'm being told that's probably the culprit. In April, 2016, I was given prednisolone related to a rotor cuff injury and woke up the next morning with normal-looking legs and ankles for the first time in years. When I'd completed that course of treatment, I was switched to prednisone (I have a history of tolerating it well; had to take it for another condition for 15 years and a bone scan showed that at age 55, I had the bones of a 30-year-old woman). It continued to keep the swelling under control, but I also wore compression stockings most days. It was great to have slim legs and ankles again, but slowly the swelling returned. Continuing to take prednisone at least enables me to get the stockings on in the morning (20-30 mg. day). I have had leg fatigue on and off for four years, but for 2-1/2 months now, extreme fatigue; it occurs immediately after rising out of a chair and I have concerns that at some point I won't be able to walk.

Yes, I have had lymphedema ,primary for years & my mother had it .

Hers was so bad her legs oozed water.

I have osteo arthritis also.

I had all swelling disappear for months after cortisone shots in my knees for months!

I asked why & the doctor had no answer for me but I know it works like a miracle.

But my skin has gotten thin & I bruise & bleed easily.

I would really love to have a cure ,

My toes go numb from swelling , it becomes very painful

God bless you and other commenting here for that spark of hope that you gave me!

I was diagnosed with secondary lymphedema about 19 years ago. I rarely ever see the bone structure in my feet and ankles anymore. There are times at night when water seeps from my ankles. I take a diuretic every single day but the fluid never seems to pull from the tissue in my lower legs, ankles and feet. It pulles from everywhere else in my body because I'm in the bathroom every 20 minutes for about 3 hours after taking it, but the swelling in my lower extremities never seems to go down. Elevation helps distribute the water but I have to work so elevating my legs all day isn't an option.

I had my colon removed 33 years ago from UC and Toxic Mega Colon. Everything was reconnected internally and I live a basically normal life, but after having a c-section 19 years ago, I suddenly developed secondary lymphedema. I was told by the vascular surgeon that when my colon was removed the lymphnodes in my abdomen were likely damaged or even partially removed. He belives that the subsequent c-section years later may have aggrivated the area and caused the lymphedema. I was told to wear compression stockings, but my legs and feet still fill up with fluid even with the compression stockings, so I gave up on wearing them. Plus, it's difficult to wear them in the summer with summer clothing. This happened when I was 30 years old, so I really didn't want to look like an 80 year old walking around in shorts and compression hosiery! LOL

Just this week I was given a Medrol dose pack for inflammation in my foot caused by my flat feet and arthritis. I'm on day 4 of the dose pack and for the first time in years I can actually see the bone structure in my ankles and feet. I had no idea that prednisone would help with lymphedema as steriods in the past has caused water retention, or at least it always caused me to balloon up. I went online to search to see if anyone else had ever experienced relief of secondary lymphedema with the use of prednisone and found this site. I'm thankful for stumbling across it because it sounds like there is research being done to help this condition yet my docs have pretty much told me that diuretics and compression stockings are the only treatments. I now have some research and information to show to my doctor and maybe there is more that can be done for me.

The only problem with me taking prednisone is that because of my gastrointestinal disease, it has caused GI bleeding so I can't take it long. Just the 7 days on the Medrol dose pack can cause significant GI issues for me. I can't even take over the counter NSAIDs without GI bleeding. I'm hopeful that someday there will be something that I can take for the lymphedema that won't cause GI issues for me. I've also tried tart cherry extract and turmeric for inflammation from arthirits and they even cause GI issues for me. If anyone out there has gastrointestinal disease, arthritis and secondary lymphedema and have found something that works for them without harming the GI tract, please let me know. My docs and I are at a loss. It sure is nice to not have the swelling in my ankles and feet, but not at the cost of severe GI distress and damage. :(

Well, you might not like this answer, but one thing I have found that works other than prednisone is to not eat meat or milk. Twice I have gone on a short term meatless diet and both times my swelling went down. I keep meaning to do it again, but sometimes I don't have the energy to do anything but go through a drivethru or have soup. And drivethru's don't serve a lot of vegetables.

The first time this happened, I had gone a juice diet where the juices were made form fresh vegetables, mostly carrots, granny smith apples, cucumber, and squash. After ten days I was sick from eating too many carrots, but my legs were flat. The other time this happened, I had gone on a jumpstart diet from Dr. Hans Diehl that allows only whole grain cereal, fruit, and non-dairy milk. I used rice milk. After 3 days my legs were flat. So, I guess I am stupid. Tonight I am having oatmeal for supper. No meat.

If you research not eating meat for helping lymphedema, you will mostly find sites that say you need to eat protein, which I guess you can get from other sources than meat. Maybe you are stronger than me. The other thing here is that I didn't have any coffee, sodas, or tea, i.e. no caffeine.

Hope this helps.

I had cortisone injection in my shoulder for shoulder impingement 10 days ago , the side affect is my lymphedema swelling has gone for now, usually my legs are so swollen I can not bend my ankles, the swelling overflows the side of my EEEEEE width shoes and I have trouble walking, I wish I could post photos on here as the difference is so shockingly good, there has to be a strong link between the injection and what I am seeing as this happened the last time I had the shoulder injection and it lasted for about 3 months, just wish I could have an injection at regular times to help such a debilitating condition as lymphedema .

hello. I realize your post was five years ago, but maybe you are still around. i had the same experience with prednisone. I was taking prednisone for a separate condition the swelling in my legs and abdomin went down. My pants were so lose they twisted when I got in and out of the car. i shared the experience with my doctor. He said that i was the second person that had shared an experience like that within the month. He also said that shouldn't happen, that the prednisone should make you swell, which it did, once i came off the prednisone.

Hi

Just found this site

My wife has secondary lymphoedema from cervical cancer

She has just started taking prednisone for kidney issues and guess what no more swollen leg

Very interesting this

Hello Multimarcus. Yes, I had something similar happen. I was having a lot of lung/asthma problems and was given prednisone to help clear it up. While I was taking it, I noticed that my swelling went way down, not just in my legs, but also in my abdomen. (I didn't realize I was swollen in my abdomen.) I shared it with the vein specialist I went to see shortly after that and he seemed surprised. Apparently, another patient had reported the same thing happening earlier that month. But I am told that I can't take it on a continual basis because it isn't good for me. Don't know that lymphedema is either. Interestingly, my legs swelled up so bad afterwards that I could hardly walk. I went to the Medstop, where I happened to get a doctor who has treated lymphedema patients before. Yay! She listened to what I said and believed me. Her solution was to prescribe more prednisone and taper it out longer so that the swelling would not come back as bad. It worked. But I was disappointed that my swelling didn't go down as much. So, I'm not a doctor, but it seems that if prednisone suppresses the immune system, then maybe my immune system is over active?

Similar experience. Thank you all for sharing because my doctor’s are baffled by my amazing results. The 13 days of prednisone I was prescribed made me feel fantastic. My swelling went completely down in my legs. I danced around and celebrated. The swelling and pain came back afterwards of course and I spent a week mostly in bed. But I would love to have those 13 days again someday.

My current doc prescribed me pregnenolone yesterday because my blood level of it was low and it’s the precursor to cortisol in the body. I haven’t started taking it yet though. Maybe it will help with the swelling? No one wants to prescribe me prednisone again because of the reported side effects even though my side effects were feeling the best I’ve felt in 20 years, increased happiness, no pain, etc.

I have lymphoedema in my legs .I noticed that when I had to take Prednisone for upper respiratory infection the swelling would be relieved. When I shots of cortisone the swelling would disappear for weeks. So yes there seems to be something to it. But the treatment can raise blood sugar and long term use can weaken bones. So it's great for short term .

Also had cortizone injection in shoulder for some arthritis. Have secondary lypmhodema in lower body and legs especially. I noticed within 3 weeks my very big leg had gone down considerably. I have solidified lymph tissue in it which remained semisolid, but the rest of the leg deflated a lot! the "lump" as I call it, would giggle around when I walked, and the other leg went down as well, which I do wear compression garments on when working. It's too difficult for me to walk with solawraps on both legs, they're like splints. This was all during lockdown in our country for the Covid19 pandemic. I was also almost pain free, it was great. However, within 3 weeks, the legs were back to swelling, though I was working from home, so was able to elevate them a lot. But now, 10 weeks after the injection, Im suffering again, with lots of pain, swelling and immobility issues. Living with lymphedema is one thing, but the pain is something else. It was so good to be a few weeks without a lot of pain.

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