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Living with Polyneuropathy CIDP, GBS, & CMT

DVT from IVIG


#1

Hi All,

I was just diagnosed this past week with a deep vein thrombosis in my left calf. Since I have no other risk factors, the vascular surgeon has determined that the cause is most likely the IVIG, since blood clots are one of the common risks of the medication. I did have the infusions for two days back-to-back at the end of June and my left leg swelled up pretty badly. What may have contributed to it was that two days later I had an extended car ride lasting about 5 hours. Since it is hot and humid in NJ this time of year, and I do tend to swell somewhat when I get the infusions due to the liter of fluid they give me with them, I didn't think much of it. The swelling went down somewhat, but then I still had pain in the left ankle and walking was more difficult than usual due to the pain. I went to my PMD who thought I had an ankle sprain, but decided to order a doppler of my lower extremities because she felt it was about time we checked the circulatory status of my lower limbs. Thank goodness she did or I would not have found out about this clot. My left leg is the one I call my "dead leg" since it feels heavy from the knee down and always feels like I have a too tight ACE bandage wrapped around it. I really didn't notice much difference in it except for the ankle pain and swelling.

When I went to the vascular surgeon today he did another doppler and said he is going to watch the clot by doing a series of dopplers over the next couple of weeks. I'm also taking one regular strength aspirin a day. He said there is minimal risk that this type of DVT in the lower part of the calf will migrate upwards to obstruct the veins up into the upper leg and groin or will break free and become a pulmonary embolis. I am grateful that the clot did not develop higher up the leg or the situation could have been much worse.

Has anyone else had a similar experience?


#2

That's pretty scary! I have not had a blood clot, but last December when I was in the hospital with a broken left shoulder (from falling due to loss of balance fron the CIDP), the surgeon was concerned about the swelling in my left foot and calf; so he ordered an ultrasound to check for a blood clot. There was none, so I went to see a specialist for the swelling. He had me purchase compression socks. My swelling only decreases if I wear the socks. The main reason for the swelling, according to the compression and nerve specialists, is lack of circulation from my neuropathy and corresponding loss of muscle. And because I'm not as active, they also said that is a factor....and of note, the swelling is only on my left side where the neuropathy is advanced.

.


#3

Dear Struggling,

The vascular surgeon did say if I continue the IVIG I will need to take the daily aspirin and put on compression stockings during infusion weeks to prevent another DVT from happening in the future. I guess prevention is key because with the neuropathy we really can't feel the first signs of pain when something is developing in the leg. All the reasons you state are also causes of blood clots in the legs. I guess this problem is a real risk for people with CIDP, but for most the benefits of the IVIG outweigh the risks of the clots.



Struggling said:

That's pretty scary! I have not had a blood clot, but last December when I was in the hospital with a broken left shoulder (from falling due to loss of balance fron the CIDP), the surgeon was concerned about the swelling in my left foot and calf; so he ordered an ultrasound to check for a blood clot. There was none, so I went to see a specialist for the swelling. He had me purchase compression socks. My swelling only decreases if I wear the socks. The main reason for the swelling, according to the compression and nerve specialists, is lack of circulation from my neuropathy and corresponding loss of muscle. And because I'm not as active, they also said that is a factor....and of note, the swelling is only on my left side where the neuropathy is advanced.

.


#4

Cookie- I swim everyday. I also have dead leg; a foot drop where almost all the muscles below the knee have failed in my left leg. BUT, swimming for the past 18 months has built me up so when the nasty, gnarly ravages of CIDP hit me on relapse I have the strength to fight on and on. Listen! Muscle disease required constant muscle activation! Joy the YWCA! You have to create your own physical therapy. NOW! Any exercise is a start and it beats being a dart board for prescribed medications!


#5

Dear Estaban,

You are so right in saying that exercise is so important with this condition. It's so much easier to give into not doing anything because the muscles are so weak. I know I have to really inspire myself to get onto the exercise bike again and definitely keep up the swimming--walking is out for sure, since I can't walk any long distances any more. Swimming is fine now because I have a pool in my yard and it's summer here in New Jersey, but once the fall comes, I'll need to find an indoor swimming facility to use. I do find that swimming is the best thing because I do not feel the stress that other forms of exercise seem to put on my body. I would really like to find a good exercise class that simply has me gently stretch muscles rather than try to contort into set positions. The last time I tried a "gentle" yoga class I pulled something in my back and was stiff for weeks. I think the key is to find an activity and be consistent with it because not moving is more detrimental to our bodies than exercise. I found out this the hard way by learning I had developed the DVT in my leg after being sedentary in the days following my IVIG infusions.



estaban said:

Cookie- I swim everyday. I also have dead leg; a foot drop where almost all the muscles below the knee have failed in my left leg. BUT, swimming for the past 18 months has built me up so when the nasty, gnarly ravages of CIDP hit me on relapse I have the strength to fight on and on. Listen! Muscle disease required constant muscle activation! Joy the YWCA! You have to create your own physical therapy. NOW! Any exercise is a start and it beats being a dart board for prescribed medications!


#6


Wow. Either my CIDP is more advanced than yours, Estaban, and/or you are a really strong person. There's no way I could even move well enough to get into a pool, no less swim in it! The most I can do is ride my stationary bike; and that's challenging. More power to you and anyone that can exercise! :-)
Cookie said:

Dear Estaban,

You are so right in saying that exercise is so important with this condition. It's so much easier to give into not doing anything because the muscles are so weak. I know I have to really inspire myself to get onto the exercise bike again and definitely keep up the swimming--walking is out for sure, since I can't walk any long distances any more. Swimming is fine now because I have a pool in my yard and it's summer here in New Jersey, but once the fall comes, I'll need to find an indoor swimming facility to use. I do find that swimming is the best thing because I do not feel the stress that other forms of exercise seem to put on my body. I would really like to find a good exercise class that simply has me gently stretch muscles rather than try to contort into set positions. The last time I tried a "gentle" yoga class I pulled something in my back and was stiff for weeks. I think the key is to find an activity and be consistent with it because not moving is more detrimental to our bodies than exercise. I found out this the hard way by learning I had developed the DVT in my leg after being sedentary in the days following my IVIG infusions.



estaban said:

Cookie- I swim everyday. I also have dead leg; a foot drop where almost all the muscles below the knee have failed in my left leg. BUT, swimming for the past 18 months has built me up so when the nasty, gnarly ravages of CIDP hit me on relapse I have the strength to fight on and on. Listen! Muscle disease required constant muscle activation! Joy the YWCA! You have to create your own physical therapy. NOW! Any exercise is a start and it beats being a dart board for prescribed medications!


#7

No, I haven't but I do take ASA a few days prior to my IVIG infusion and for a few days after.


#8

Just wanted to broadcast a warning: There are people who pretend to be sufferers of a disease, then try to get a conversation going on a more private level, and then ask for help financially. Please be careful because it can surprise you how clever they are.


#9

Thanks for that.

Norbert N Steiner said:

Just wanted to broadcast a warning: There are people who pretend to be sufferers of a disease, then try to get a conversation going on a more private level, and then ask for help financially. Please be careful because it can surprise you how clever they are.


#10

My first grandchild is about to be born in Vietnam in November and Vietnam is a 9 hour flight away.I have coped with a 4.5 hr flight no problem.I also need to see some good friends in San Diego,Seattle and Vancouver.

My IVIG is every 4 weeks.

Hydration and mobility are essential.I'll even wear stockings!

Am I going to take the risk to see my grand-daughter?

You bet I am!


#11

Hi Cookie. I've had 2 PEs one in 2007 and the other in 2010. The 1st started with pain and swelling of the lower left leg and foot. By the time I got an ultrasound, the swelling went down and the DVT did not show. A week later I had a PE. So if it happens again keep an eye out. My PEs were not painful just uncomfortable.


#12

Hi Missy,

How long did it take for the clot in your leg to dissolve each time? The vascular surgeon I saw told me to take a full strength aspirin daily as treatment and to wear compression stockings when I'm doing at risk behaviors such as taking long car rides and plane flights. I am no longer on IVIG, so that is not an issue, but I still have the pain in the same spot in the left ankle and it's been 2 months of taking the aspirin. I was not put on any other blood thinners since the clot was diagnosed as "chronic" since I did not have it diagnosed until about 3 weeks after I had it and after the swelling went down in the leg. I knew it was from the IVIG because it started a couple of days after an IVIG treatment despite 2 liters of IV fluid with the treatment and me drinking bottles of water. I guess it was the hot/humid New Jersey weather and a long car ride I took that week.

I'm just wondering if I can ever consider this clot in the leg "gone"?

Thanks.

Cookie


#13

Geez... this blood clot problem interest me now since I was diagnosed with essetial thrombocythaemia. However, I've read enough to know that many conditions cause blood clots.

http://en.wikipedia.org/wiki/Essential_thrombocythaemia

And, let's talk clotting...

http://en.wikipedia.org/wiki/Platelet


#14

Hi, Cookie,

Last Monday I was diagnosed with a lower left leg DVT. I’ve been getting IVIg for CIDP for about a year and a half. I’m pretty active. I play ice hockey three days a week, but my wife and I take regular car trips of a few hours each. Has your aspirin regimen prevented recurrences? I’m expecting to see my neurologist in a day or two, so I don’t yet know what his thoughts are.

Thanks for you time, and I hope you’re doing well.

Mike


#15

Hi Mike,

Sorry to hear you have a DVT despite your activity level. IVIG is so thick that unless it is diluted with IV fluid adequately (and you drink tons of water during and after the infusion) the tendency is there to produce these clots. This is especially true if you take a long care ride close to when you’ve had the infusion–that’s how mine happened. I finished the infusion at 3pm then jumped in the car at 5pm for a three-hour long ride, sat in a cramped theater watching a show for another 2 hours, then took the long care ride back home. Not smart of me, but you have to live life right?

I have not had another incident of DVT since the one I spoke about online. Shortly after that, I received results from genetic testing I had done which indicated I had Charcot-Marie-Tooth (CMT), an inherited form of peripheral neuropathy, and not CIPD as earlier diagnosed. IVIG is not the treatment for CMT (sadly there is no treatment for CMT) so I never had another dose of IVIG. I did keep taking the aspirin therapy for about a year afterward though, to prevent another DVT. I have not had another one since then, but I’m not sure if it was the aspirin that kept me from having one or the cessation of the IVIG therapy.

Good luck with your healing. I hope your neurologist is supportive.

Sincerely,

Patty

(I think Cookie was my “stage name” for the website😊)


#16

Hi Patty,

Thank you for writing back so promptly! I’m sorry to hear you have CMT. I had never heard of it, and it sounds like it can be a real challenge. I always drink tons of water, but your advice about avoiding car trips for a few days after an infusion seems sound.

I’m glad to hear that you haven’t had more DVTs. Now that i’m part of the neuropathy family my wife and I are constantly amazed to find out how many varieties there are and how many people have them. As you say, though, we have to live life.

I hope to see my neurologist tomorrow, but my primary care doc and another doctor friend both suspected the IVIG as the cause.

Thanks again for your prompt and helpful reply. I hope things go well for you.

Warmly,

Mike