New member with question regarding Rituximab

[gurs]

Cheez, feel so bad for what you have gone through. Ive been pretty much bedridden for the last 5 years...trying to find something to calm this autoimmune stuff down.

I tried multiple Rituxan infusions over the last 4 years...had different reactions to each treatment...I too, am allergic to just about everything now. I think my extra steriods just made my immune system worse.

We did all the pre-med stuff....IV medrol, benedryl, Tylenol, and also my doc had them run a saline the entire time of the infusion, to help
with all the extra dryness you will experience. I also had them "Double"  my infusion time because the slower the infusion, the less side effects..seriously!!! this is the biggest thing. One gal turned up the infusion rate, and I felt sooooooo sick immediately..as soon as they slowed it down, It was much better...safer too. So if they say 4 hours, have your doc write the order for 8 hours...makes  a huge difference afterwards too. I didnt seem to be 'Allergic to it" but I had horrible headaches, fatigue, joint pain for a for a week afterwards...a day or two after, felt a huge blow when the steriods were gone. I had my doc give me a script for some medrol and stayed on that..still cant get off of it after 2 years.

Im not sure if it ever helped me. My last infusion was almost 2 years ago and my body has had it now...i might need to try another round of this stuff. I really cant function anymore...but, I have severe systemic yeast issues so that is a big concern right now. If your body is sick with any form of infection, I would say NO......have you tried Imuran or has your doc recommended IVIG to possibly help first?  my doc even recommended plasmapharesis to me?

wish I had some better advice...I didnt notice any major changes with rituxan, but then again, i think it may have slowed the progression down a bit? Im not sure what im going to do next...docs dont know either...its soooo frustrating when we have to make the best decision for us?

Gursie

[Belinda]

Saw another specialist out of my team of Rheumatologists today and after all that soul searching he has agreed Rituximab is no longer recommended for me right now. He listened to all my fears and worries and totally understood. Like you all said to me, he said it is my body and I have a say in what I put into me.

He said because of the severe infection I had in hospital and the sinus infections and salivary gland infections I keep getting (sjogrens causing them), that any TNF or B Cell drug will make these worse and cause major problems.

He said we need to take you back to basics because of the fact I am allergic to so many medications and even ones I was not before.

He goes now lets diagnosis exactly what you have Psoriatic Arthritis, Rheumatoid Arthritis, Sjorgrens Syndrome, and now Osteoarthritis I am so greedy lol.

I am seriously anaemic and my iron levels are in their boots, which explains the severe fatigue (even more than usual), shortness of breath, and loss of hair. So I am on a hefty dose of iron supplements. Best get the prune juice ready haha,

He looked at my xrays that I had done a month ago and I have got osteoarthritis in my knees, feet, back and hands. The bottom of my spine is crushing together which is why I keep getting back spasms and my left leg keeps going numb from the hip to my knee. I am going to have steroid injections straight into my knees to help with the pain and inflammation. He wants me to go for hydrotherapy and physiotherapy . Where I have the OA in my thumbs it is causing tendonitis, which explains the burning pain and dropping things, so he wants a different splint on my hands.

He got the ultra sound thingy out and ultrasounded my thumb joint and knees and showed me exactly what was there, I have never had any of this done before. He did say unfortunately we cannot repair the damage that has been done but we can try and relieve some of the pain. I have alot of muscle wastage in my legs which he said also causes alot of pain.

He is starting me on plaquenil 2 x 200mg which he is hoping will help a little with the Sjogrens Syndrome and yes I am worried about taking a new drug but I do know it will be out my system relatively quickly if I get a reaction. If it flares up my psoriasis I will have to stop it straight away.

I have got to stay on the methotrexate because that is helping to keep some of the inflammation levels down.

I was dreading this appointment and even though he told me he cannot repair the damage and that means I really may not be totally out the wheelchair and can hope only to get a little more mobile I am relieved.

He was amazing, need less to say I will be most definently staying with him. Told him for his sins he now has me for life haha...

Love
Belinda
xx

[Still in the hunt]

when you say salivarygland infections,, are you getting stones in them or just infections,, I only ask becsue I have a condition called chronic sclerosing silidinitis,, what it is basically is your salivary glands turn fibrotic,, rendering them useless,, i get nothing out the ducts from the paratoid glands,,,,
  If you decide to get a lip biopsy,, get good referrals,, some are good,, some are a nightmare,, both of mine just shwoed chronic inflamation,, which never raised red flads to anyone aboutt he glands going downhill,,

[gurs]

Why didnt they have you on plaquenil to begin with? I have the same issue as alot of us do...cant tolerate or allergic to most medications.
You might have some stomach upset with plaquenil, but give it time. I would start with a small dose, even half the 200mg tablet, take it
after dinner so if you dont feel  good, at least you can try to sleep it off.

Plaquenil is nothing compared to rituxan..i would save that when nothing else is working etc.

Alot of unknowledgeable doctors seem to diagnose "probable infections" when we have gland issues as well as sinus etc, when we
really have "Inflammation". Im sick of doctors passing out antibiotics for this and sending us on our way. Unless they do a biopsy, or you have
fever, redness, swelling, nothing will really help. My cousin had unnecessary surgery on the salivary gland because they thought it was infected or she had cancer, but she has sjogrens??? hello?

Its terrible because most of us feel like we have an infection, but its really not...its called inflammation from the autoimmune.

Gursie

[Belinda]

Hello Gursie

"why did they not put me on plaquenil before" hmmm you will love this, the rheumatologist I saw before since 2005 told me when I got the diagnosis of sjogrens as well that there was no treatment that would work for sjorgens, other than artificial tears etc... oh yesssssss.

This specialist is treating the whole of me not just the RA.

I am under a Consultant ENT Surgeron and Otolaryngologist who ultrasounds and scans my parotid glands, sinuses and thyroid every nine months.  Because the parotid glands are really swollen and painful he wants to keep checking for lymphoma.   That is the only time I would have them operated on is if I developed a Malt Lymphoma, other than that leave them alone.

I uses a sea salt spray for my nose every night and morning and it really is helping with the dryness and the sinuses.  The scan shows they are damaged by the sjorgrens and enlarged which hurts and makes you feel like you have infection.  So it is a difficult one to tell.

Thank you for the advise about cutting the tablets in half, good plan as my tummy is sensitive , but then the iron tablets might counteract it.. haha... we have to laugh about it dont we.

Thank you again.

Love
Belinda
xx

[Belinda]

when you say salivarygland infections,, are you getting stones in them or just infections,, I only ask becsue I have a condition called chronic sclerosing silidinitis,, what it is basically is your salivary glands turn fibrotic,, rendering them useless,, i get nothing out the ducts from the paratoid glands,,,,
  If you decide to get a lip biopsy,, get good referrals,, some are good,, some are a nightmare,, both of mine just shwoed chronic inflamation,, which never raised red flads to anyone aboutt he glands going downhill,,

I get like a little nodule, like a hard pea just infront of my ears  and in between where my jawbone is and when I swallow a pain goes up into my ear... my GP says infection, not stone.  I dont think i want to risk a lip biopsy.  Sometimes just putting heat on the glands can help .

Thank you
Belinda
xx

[Chickpea]

Hi Belinda

It's good to hear that your doctor actually listened to you and respected your wishes.  What a relief!

Plaquenil could help a lot but you need to be patient because it can take months to kick in.  As the others say, start with a very low dose and always take it with food.  It's very bitter - you'll know if you ever vomit after taking a tablet! - and can make your stomach very sore if you forget to eat.

What did the doctor have to say about your anaemia?  Does he think it's related to your other autoimmune conditions?  I've had years of pretty bad anaemia that didn't respond to iron tablets, plus they made my tummy sore.  The answer was iron infusions.  I had a course of 8 over two months and they helped so much.  Like Gursie says, it's worth asking for infusions to be done extra slowly but there's nothing to worry about with these.

Hope you're having a good week.

Take care - Chickpea

[gurs]

Belinda,

What made the doc think the gland is infected? did he do a biopsy, x-ray-CAT scan, labs to confirm this? A hard nodule does not sound like an infection.?.granted, I am no doctor either.

Ive had the painful stones there, and took weeks to clear up, my ENT said if it didnt clear, surgery would be needed.

Good luck with the Rituxan....I always double check the doctors orders and know exactly what im supposed to be getting prior.
The pre-meds, saline, and double the infusion time written on the orders. Are you having this at a hopspital?

Gursie

[harrigan]

Hi Belinda - have you changed your mind and decided to go for Rituximab then?  Hope you are doing ok on the Plaquenil.

I'm starting Ritximab on 7th and 21st December.  I'm anxious but also aware I need something to stop the progress of this disease.  Let us know how you get on xx Ailsa