Hi there, Just a general question. I have been experiencing major swelling in my legs, feet and hands over the last 4 to 5 weeks. I dont think I am in active flare up, in fact I am in my second week of Prednisone treatment while waiting to hear back on the approval or denial for IVIG. the swelling makes the pain I am already experiencing so much worse but I cant seem to find relief. We have tried compression socks and gloves. Soaking them in warm salt water then cool compression afterwards. Elevation etc. When I talk to my Neurologist about it he doesn't seem too concerned then yesterday I went to my PCP and he is concerned but doesn't know anything about CIDP and was concerned about making things worse.
I am on a mild diuretic I have high blood pressure, but with the mediation I am on the BP is perfect and increasing the diuretic would possible make my BP too low and cause other problems. I have a Physical therapist and Clinical Occupational Therapist visiting me weekly so I am becoming more mobile bit for 4 weeks mt mobility was just from bed to chair to restroom and back.
Is swelling something others experience? Any recommendations? I keep worrying the swelling could be something else :(
I too experienced swelling in my hands and feet. I was,taking Lyrica but discontinued taking it. I also do not eat any processed foods and limit my salt and sugar intakes. I also visited my cardiologist to make sure nothing else was going on. Massages helped also.
Thank you! So far they only have me on Prednisone which can add to the swelling. In fact I am really discouraged because the Prednisone was only supposed to be temporary while the doctor gets approval for IVIG. Now doctor has decided not to submit for IVIG because the Prednisone is helping. I really don’t want to take it long term. I am already over weight and pre-diabetic. I don’t want to gain more weight or worry about the other side affects :(.
I did go to my PC yesterday. I have been getting shortness of breath, they checked my lungs which are clear and asked questions to scale if I could have a blood clot but we’re not concerned.
Ask your neuro to reconsider. Steroids aren’t good for you at all. At least you could try a steroid/ivig combo, lowering your prednisone dosage. The doc should be concerned because of the weight issue. Weight & CIDP is not a good combo. (Not judging you for the weight)
My Dr told me NO to steroids unless IVIG wasn’t successful. He is accredited through the GBS/IVIG foundation. IVIG has the least amount of side effects of the options available. Consider another opinion? Best of luck to you.
We all have to fight for the best health care possible! My wife is the best advocate for me, she reads about the disease and knowledge is power. I definitely wouldn’t be where I am today without a advocate to help with all the overwhelming information.
I’m not recommending anything, but I would not take Prednisone if I had pre-diabetes/diabetes AND high blood pressure ( unless necessary and then for relatively short terms around >4-6 wk.) b/c steroids can worsen each of those conditions! Swelling is common and acceptable with Gabapentin, Lyrica, etc.IF it produces pronounced benefits with minimum swelling say 5# or so, without any rise in bp AND without any significant compromise in cardiac function, e.g. Shortness of breath, peripheral edema, extreme tiredness, etc. My neurologist never seems concerned about my swelling but my cardiologist is. Perhaps your PCP should call your neuro and talk about your swelling which is a major concern to you - and rightly so. Good luck and keep us posted.
I would seek a different neurologist if the one you currently are with will not switch to IVIG. I was also started on Pred in the beginning while they got my IVIG approved. I stopped the Pred after about two weeks. It was a horrible drug and gave me horrible side effects. I will never take that stuff again. I am doing so much better on IVIG. I felt the difference within days of starting IVIG. This is just my opinion but if your neurologist wants you on Pred long-term then he doesn't have your best welfare in mind. There are a lot of great neurologists out there. See if you can find one that specializes in CIPD or at least has some other patients with CIDP.
Thank you so much for all the feedback. I am requesting a list of Neurologists from the GBS/CIDP Foundation, hopefully I can find a good one. I thought I was finally with a good one he spent a lot of time with me was very informative about CIDP and has other patients with the condition that he treats. When he started me on the Prednisone I told him all my concerns and told him I really wanted the IVIG. We discussed that it was going to be a fight with my insurance because they require specific EMG and Lumbar Puncture results. My EMG was indicative of CIDP and met all the insurance requirements but the lumbar puncture results did not. Which probably just meant I was not in an active flare up; I started with the flare up in January and it took months of testing all spread out with me losing all mobility through those 4 months. I now think the Neurologist is trying to take the easier way out instead of submitting and helping me fight for the IVIG approval :(.
The Prednisone has helped in the last two weeks I gained the use of my hands and arms back, they strength is still an issue but at one point I couldn't even push myself out of the chair to get to the restroom. I can now be a bit more mobile, my legs are still really weak and I cannot walk or stand for long but I am gradually getting stronger. I have a physical therapist and clinical occupational therapist that come to my home and give me exercises so we are headed in the right direction. I just need him to hear me on the IVIG now.
Let’s remember that we are here to support one another, share our experiences with doctors, treatment protocols, side effects, and the whole gamut of things that heve happened to us, both good and bad---- HERE COMES THE “BUT” — let’s leave the specific advising and recommending to the doctors who are the most qualified to do so b/c they have this patient in front of them and are privy to facts unknown to us. Granted some docs don’t “seem” as qualified when we read the online accounts but we don’t have anywhere near the whole picture! We know the presentation and treatment of CIPD is as varied as grains of sand on the beach so let’s try to leave our recommendations limited to the doctors and centers that we can say something positive about. Good advice for me too!
I find this discussion very interesting. I have had swelling in my left leg only since Sept. 2014. I am still waiting on my ins. to authorize my IVIG, and I am not on steroids yet. My dr wants to wait until I begin treatment before I begin them. I have had an MRI, and 2 Doppler's done on my leg from my groin to the end of my toes. No clots, nothing vascular and no fluid retention. My PCP finds it very interesting because the leg that is so swollen is the effected leg with my CIDP, and it should be smaller because my PT said my quads are shot. My neuro is the one that has had the tests run, so he is aware also. When they done my last Doppler almost a month ago, the nurse measured right above my knees, and I have one that is 1 1/4" bigger than the other, and I have some pants that won't even fit over my leg now. So, this discussion on swelling has peaked my interest. I go back to my PCP June1 for any other areas of thought.
Those of us affected by CIDP have the time to take to learn the disease; the other side of everything, as opposed to a neurologist, who may or may not have seen CIDP but is familiar with the general physiology of the disease. We have time to focus on one disease when they have at least 25 different diseases they deal with.
If from your reading and research you believe you are not receiving the correct treatment … Stand up for your self and champion the cause. Provide proof to the medical professionals involved to get what you need.
When the medical professionals don’t know what to do, what do you do? You come to forums like this for suggestions.
Don’t take everyone’s word as the end all be all, but suggestions are not without merit. By finding someone that has experience with a clinical presentation similar to your own, pick that person’s brain.
I have had the doctors I have dealt with thankful that I have taken such time to read and research, and have been grateful for the information I have shared. Without it, someone near and dear to me would be dead now. Because no neurologist has the time to study one rare disease and know the different presentations/variants/etc that someone that frequents the few discussion boards available for the afflicted.
Spoken from my experience dealing with relapsing, remitting, refractory, sensory CIDP for years.
I have had episodes of fluid retention in my feet and legs. It gave me something to think about. What is the function of the heart? To pump fluid ie blood throughout the body. What is in the blood? The fluid that your kidneys have not removed .What is the function of the muscles? To make you mobile. When you are not mobile, the fluid is not moved as efficiently as when you are moving. So the fluid goes to the lowest point in the body. If you are bed bound or chair bound, do you use your muscles? Do you try to wiggle your toes or bend your ankles? Have you had a massage to move the fluid up your legs? A nurse showed me how it should be done and wolla the fluid started to recede. Helped reduce the pain that goes along with those swollen feet and legs. Ask your physical therapist? Ethel
For information on a clinical trial go to Polyneuropathyexchange.com/presentation Dr Vera Bril BSc MD Professor of Neurology at University Health Network in Canada article called "Overview and Treatment of CIDP and then check out Claudia Sommers MD from Germany article "Clinical Studies for Treatment of CIDP"
In Dr. Bril's article she states that "CIDP is a form of polyneuropathy " "..is immune mediated and progressive.. if caught early i.e. before axonal damage can be reversed by medical treatment ie IVIG or cortosteroid therapy " "if allowed to progress axonal damage can result".
I found the whole presentation very interesting. She described the way the disease progresses and what to look for and what the treatments are. I got the impression that she liked IVIG but that's my impression,
Thank you so much for all your feedback. I have an Appt on Tuesday with my current neurologist and plan to discuss all my concerns and anxiety around the Prednisone and the possibility of IVIG again. I thought I saw a place on the GBS/CIDP Foundation site where I could get a list of referrals that specialize in CIDP in my area but now for the life of me I can’t find it.
I have just started methylprednisolone and am experiencing swelling in hands feet and legs. However I am also pregnant but the swelling didn’t start until the steroids. It’s so uncomfortable and feels as tho it’s making my numbness worse. Which in turn is making my mobility worse
Besides the retention of sodium which can lead to fluid retention which in turn can raise BP significantly, prednisone can aggravate diabetes, put you at greater risk of eclampsia of pregnancy by way of the BP rise ans possible renal impairment. Most of these can be minimized by doing multiple lab panels to monitor the chemistries before they get out of control. If your doctors decides thatIVIg is OK for you, remember that the maximum infusion rate must be kept (low <150gm/hr) so that the increased density of IVIg doesn’t raise your BP dangerously — '>180-190.
All that said, get a second opinion if you are not completely satisfied that the doc listened to your concerns, answered your questions, and those answers all make common sense to you!
You’re replacing your fears with facts so you’ll be just fine! Good Luck! Bob the Geepster
I agree with tperri. Those of us with the affliction (I don't like the word 'disease') are the ones who are best positioned to understand how it affects us - and what works and what does not work. I would recommend commencing/keeping a diary of medications and their effects. My local GP requested a copy for this for his files as this is the one place where all the various specialists and professionals are noted together as are their prescriptions and reflected observations.
For me I don't have swelling (yet), but I have feet that constantly feel as if they are in a bucket of icy water. Also I have numbness (lack of tactile feedback) in my fingers. The affliction :-) is now progressing to times of significant nerve pain. I tried Lyrica - but soon discontinued it. At present I deal with the nerve pain with Nurofen.