Rituxan and Blood Cots

[rebekah]

I found out I have a blood cot in my leg earlier today while I was having my Rituxan infusion. I mentioned my leg pain to one of the nurses that came to check on me and she asked if I noticed any discoloration. I said no and rolled up my yoga pants to show her and she said she'd be right back. She left and came back with a doctor who wanted to look at it after I was done. Sure enough it was a blood clot, and we discussed starting Warfarin (Coumadin). Are blood clots common when on Rituxan that the doctor was concerned just when I asked about my leg pain? It doesn't seem like it would be as I don't remember reading it on the list of side effects. I have my last Rituxan infusion next Friday and am worried as to whether this is going to affect me getting it. Rituxan just started to kick in, and I am beginning to feeling a little better. He also wants me to get a spiral CT to see if it’s spread to my lungs. I was told that Warfarin can interact with Rituxan and cause kidney damage or raise the risk of bleeding during treatment with Rituxan. He said that he would prefer I start Warfarin and not get my last infusion, but he is not familiar with WG. I called my doctor and she is going to get in touch with the Wegs specialist to see what he recommends. I feel if I wait to start it, it will spread, but if I don’t finish Rituxan that things could get worse. I know that blood clots can go away on their own, so I think I want to wait to start Warfarin till after my last infusion and go from there... unless it's in my lungs, of course. Has anyone experienced this while on Rituxan? After this news, I’m definitely going to make an appointment with a specialist as soon as I can.

[drz]

This sounds like a tough break. Sorry to hear it. You have good questions but lets hope the doctors can consult together or even get some outside experts to advise on best course of action. One of the specialty clinics might be good resource for this. I know my doctors consulted with Mayo about these kind of questions and did a lot of discussing before deciding on a course of action.

[mishb]

People with WG will be susceptible to blood clots no matter what suppressant they are on.

Also females taking birth control pills will be at even greater risk.

Sangye has mentioned this a few times in different threads and my GP also mentioned it when I was first diagnosed (prior to any treatment)


I hope your doctors can consult with one of the specialists as drz as mentioned

[rebekah]

My doctor called to let me know she is currently in contact with someone at Mayo to find out what the best thing to do is... Hopefully I'll hear back Monday.

Michelle - Thanks for letting me know. I noticed the search box after posting this and found Sangye's post. It has a lot of great information on this topic!

[drz]

My doctor called to let me know she is currently in contact with someone at Mayo to find out what the best thing to do is... Hopefully I'll hear back Monday.

Michelle - Thanks for letting me know. I noticed the search box after posting this and found Sangye's post. It has a lot of great information on this topic!

Great news to hear about such a consult. At least you can be assured you are getting a thoughtful consideration of what is best course of action for you. I found having confidence in my treatment plan and team was great help during recovery during the crucial phases.

[JeanMarie]

Hi Rebekah,
So sorry you are having this problem. Have you had a sonogram. I was told that's the only way to be sure it's a clot. If it is you shouldn't wait for treatment. Weggies are more susceptible to clots and pulmonary embolism & it doesn't have anything to do with rituxan—Michele is right.

To diagnose an embolism, you need a CT with contrast—or else it won't show an embolism. If you have kidney involvement you can't have contrast & will need a VQ scan – this is important, you don't want to further mess up your kidneys. Do you have a GP or internist you can contact. I know it's Sat. but you might consider a trip to the emergency room.

[rebekah]

Hi JeanMarie,
Thanks so much for the info! I had the sonogram yesterday after my infusion, and that's how I found out I definitely have a clot. I made an appointment yesterday for this morning at the radiology center near me for the CT to hopefully save some costs, but because of my recent kidney transplant they didn't want to do it. I'm really glad they caught that; I don't want to risk any damage to my new kidney. I called my doctor, and she apologized and told me to go to the hospital to have the VQ scan. She called so I was admitted right away and I just had the scan.

I'm glad to hear it's not linked to Rituxan (I thought it might have been because the nurse made the connection). Hopefully I'll have the results soon to see if it's spread to my lungs, and I can get a definitive treatment as to whether I should start Warfarin. I'll keep you posted as I get updates.

[drz]

It sounds like they are giving you good care. Nice to hear about cases where they seem to be doing things right.

[Alysia]

good luck rebekah !
you really are very strong !

[rebekah]

Good news – it hasn’t spread to my lungs! Sorry for the little scare there… I can breathe now. I'm so glad I ended up needing to go to the hospital for the VQ scan (thanks again JeanMarie!). That definitely sped the process up. I’m going to start Coumadin, to hopefully prevent it from going to my lungs. I read in Sangye’s thread it’s better than the generic Warfarin, so I made sure to tell my doctor I didn’t want generic... Thanks for posting it, Sangye! I’m looking forward to this helping and getting on my way to feeling better.

[rebekah]

Update: I had my last Rituxan infusion today, and found out the blood clot is gone!! I am now officially off of bed rest - I'm so happy! Between the pain, tiredness, and it being 45 degrees when I woke up I couldn't find the energy to get out of my bed and make it to my appointments (blood work and ultrasound)... I even had to push my infusion back an hour. So glad I was able to make it to Tampa General eventually for my infusion. A doctor even snuck me back when I was done with the infusion to get my ultrasound done so I could get the results today. The doctors and nurses there are amazing, it's no wonder they're the #1 hospital in Florida... definitely baking them cookies now that I can to thank them. No matter how I feel I'm going to get blood work tomorrow to check my INR levels... the blood clot is gone, so Coumadin seems to be doing its job. A big THANK YOU to everyone on here for the help and support! :)

[Jaha]

So happy to hear that you don't have that to deal with and you can now possibly concentrate on feeling better after infusions. Best wishes for great results from the rtx.:thumbsup: