suffering from Wegener granulomatosis ,Had 2nd infusion of retuximab but still having haeavyness in foot,&pain?

[sam05]

had retuximab 15days before but still having foot heaviness and pain in foot. not able to walk properly. tired of this pain when this pain stop? continues pain in both foot from last 8to 9 months.

please sujjest when this cycle is stop?

[ZiggyDiego]

Rituximab takes quite a while to work, weeks not days. I had a lot of foot pain because I damaged tendons in my feet while on high dose steroids. My rheumatologist referred me to physiotherapy which was really helpful. Hope you get some help.

[sam05 in reply to ZiggyDiego]

thank you for reply. good sujjation physiotherapy .

[sam05 in reply to sam05]

now how you feel is your foot ok don't have any pain good .

how long time you suffered from this pain.

[ZiggyDiego in reply to sam05]

My feet are great now: the physio did ultrasound and gave me very specific exercises to practice very carefully. The pain started last November for my feet. I had big trouble with my knees for years, but really bad from May 2016. Most recently we've been working on my balance in physio. I have pain from osteoarthritis and was offered toe joint replacements in 2015. Instead I consulted an orthotist and have inserts for my shoes, which are brilliant, custom made for me. It is difficult to make sense of the different types of pain (arthritis, vasculitis, muscle/tendon damage) but I have found a gentle, persistent approach has transformed my mobility. I'm not running and never will, but I can walk my dog without pain most days. Hope it works for you too.

[Christophene47 in reply to ZiggyDiego]

Hi, I am curious to know if you feel that the steroids caused damage to the tendons of your feet. If I may ask what was your highest dose, and what dose are you on now? Thanks much.

[ZiggyDiego in reply to Christophene47]

It was my physio and rheumatologist who suggested the damage was due to prednisolone. Because I have extensive osteoarthritis in my hips, knees, ankles, feet & toes, the pain/stiffness relief from prednisolone is quite significant, and inevitably I move differently. Plus prednisolone relaxes the muscles/tendons, making them more vulnerable to damage. The issue with my feet seemed to be associated particularly with having three methyl pred infusions (1500ml over 3 days) to deal with scleritis, which was threatening my sight. I'm back on 20mg pred at the moment and trying to move around like a ballet dancer to avoid doing damage, not so easy when the dog is off misbehaving, but that's another story 😊

[Balderick in reply to ZiggyDiego]

I have had most of the bone pain get better after the rituxan and I can’t say I felt any real side effects apart from my stomach seem to slow down and bowel habits change but I have IBD so I am seeing someone today. I did have my heart race when they put the speed of infusion up but it settled after a fashion. I always feel worried when I have the infusions but then I think of how many of us would not be here if this were 20 years ago. I do get severe pain in my shoulders and rotor cuff areas though and seems nothing can help with that

[Keithtim10]

Hi sam sorry to hear your troubles but i have the same diagnosis as you and had it since Nov 2015 i had 3 infusions of rituximab over last 18 months but it did take some time to work but if it helps long term it has worked for me to keep me in remission so if it helps stick with it and good luck.

[Lauriescott1]

I have the had same condition since 2013 which has been treated with a combination of differing tablets namely Cyclophosphamide with Prednisone then Aziathiaprine along with steroids and immunosuppressant drugs which generally kept condition in remission although during that period I've suffered a number of flares that rendered me unable to walk from joint pain in legs, arms and hands leading to hospitisation.

The condition requires a fine balancing act with tablets in particular steroids at one point 60mgs a day (now at 15mgs & reducing further soon) which long term are detrimental to our health consequently my Consultant suggested having Rituximab infusions to reduce them - I have responded well to them but aware that at times it takes upwards of 6 months to feel the full effect.

I'm fortunate to have a very knowledgeable team looking after me which is half the battle - Hoping your condition improves as know how you feel when it's rough.

[Hidden]

From my understanding Rituximab takes about 5 weeks to work - at least. Have had 7 repeated infusion sequences since 2010 and this has been my experience as well. Right now in midst of severe relapse with polyneuropathy, joint pain, etc. and waiting for RTX to work.

Physiotherapy does help if you are well enough to get there! Best of luck everyone!