Start rutiximab Treatment today: Having waited a... - LUPUS UK

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Start rutiximab Treatment today

dzagotskillz profile image
16 Replies

Having waited a year for this treatment which has finally been approved let's see if I notice any difference. I have had chronic ulcers in my ankles for 4 years and they will not heal. Pain is controlled with pregabalin and tramodol and I am taking the usual meds for my lupus. Fingers crossed got to remain positive... Will keep you posted.

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dzagotskillz profile image
dzagotskillz
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16 Replies
joannebond360 profile image
joannebond360

Really good luck! Hope it goes well and that it helps you.

Keep us posted on your progress with it.

Jo

dzagotskillz profile image
dzagotskillz in reply tojoannebond360

Thanks..so far feel OK just a little tired.

Silvergilt profile image
Silvergilt

Ugh, a year? I'm worried I will have to wait that long...on the upswing I have heard good things about the rituximab so fingers crossed it will work for you and hope you get lots of rest

EOLHPC profile image
EOLHPC

Wishing you all the very best with this treatment. Hope you'll keep us posted. Take care

notoverthehill profile image
notoverthehill

dzagotskillz

I have had three infusions of retuximab and am delighted with the results .I still have some signs of lupus but the osteo-arthritis,rheumatoid pain has gone Lupus is now liveable with although i still have other things associated with it

Good luck and I hope it is as effective for you as it is for me

I have about five or six friends on Rituximab who are all really delighted with it - they take it for RA but I believe it's very good for many types of autoimmune arthritis. Good luck!

CMac13 profile image
CMac13

Hello. Just to say- great to get this far & hope you start to feel much better really soon. I've had Rituximab quite a bit & after a while, I noticed a big difference in quite a few symptoms. Tho you may have to be patient, as it can take a wee while to work. Fingers crossed for you, as it's definitely a positive treatment for quite a few other folk I've met- both Lupus & R. Arthritis. TC- C

dzagotskillz profile image
dzagotskillz

Thanks guys for the feedback. I will keep you all posted. I have my second infusion of rituximab on the 15th of this month. I have tried all treatments I just hope that this works.

Smartcar profile image
Smartcar

Hi, I have been suffering with ulcers now for 8/9 years. I am now receiving IV immunoglobulin and it's the only treatment that is working. Google it and if you think it may help ask your rheumatology consultant about it. Good luck.

dzagotskillz profile image
dzagotskillz in reply toSmartcar

Think I spoke to my consultant about this and she was adamant I try rituximab 1st.

Smartcar profile image
Smartcar in reply todzagotskillz

I have had Retuximab for a while prior and it didn't clear my ulcers, but we are all different. Keep it in mind if the Retuximab doesn't clear yours up.

dzagotskillz profile image
dzagotskillz in reply toSmartcar

Hi there. Have your ulcers healed?

Smartcar profile image
Smartcar in reply todzagotskillz

At the worst one in particular was the size of a saucer with a depth to expose the muscle, I was close to having my leg amputated. IV immunoglobulin has healed to the size of a 5 pence piece. I also use a dressing called Hydroferra Blue that is supplied to me, this draws the sluff from the wound allowing the skin to granulate and also keeps bacteria for the wound. Keep in touch and let me know how you get on.

mstr profile image
mstr

Hi, best of luck with your treatment.

dzagotskillz profile image
dzagotskillz in reply tomstr

Thank you. Have second part of Treament Monday. Will keep you posted

Myncare profile image
Myncare

How are you? Hope you are getting better.

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