Rituximab V Azathiioprine (Imuran) advise

[BenHornsby]

Hay gang,

Please could you help with some advise or pointers on what i should be doing/asking, i have been loving reading your posts but not found answers that satisfy me yet.

I have just had a meeting with my new rheumatology doctor (Dr. Shirley Rigby UK Warwickshire) and although new to me as my normal doctor who was amazing has retired (Dr. Nigel Dunn) I did not feel very confident still with her after my 4th meeting.

Firstly i do/did not have confidence in her due to I keep telling her it feels like i am having flairs but my bloods dont show much and I see you guys always mention ANCA and i have only had this once that i can see in my blood history online. it seems that everything i tell her is ignored until my bloods confirm it? They test me every 6 weeks for the below, if i feel bad i take myself in for a test regardless of the 6 week tests:

Haematology:
FBC
PV

Biochemistry:
Renal
Liver
CRP
CGP-V (not sure on this acronym due to Dr's hand writing could be CSP-T??)

They have just started asking in the last 6 weeks to tick Immunology box IgG,A,M for each infusion i have and I have started to tick the ANCA box although did not get that result online when i looked.


I have just had 15% of my right lung out due to lumps 10 weeks ago and about to be booked in for sinus surgery as i have a nasel bone problem and have a nasal polyp they want to remove and been getting very bad head pains.

I am getting bad night sweats that soak the sheets again, limbs are hurting muscle and joints, very itchy head and upper-body with random spots i cant leave alone, but mostly in my hair lines.

Since they have started doing the IgG,A,M test they have canceled my Rituximab infusions as the levels are too low, i have now convinced them to give me the infusions this time but Dr. has said she wants to move me on to Imuran and take me off the Rituximab infusions as my renal bloods have been rising above normal levels. They pointed out that the only reason they used Rituximab was due to still wanting to have children and at present have 2 and not looking to increase the clan at the moment.

I am very nervous of the above move as its an unknown for me with Imuran and i like the infusions as i have been working full time and not had time off work apart from surgery recovery.

I am a little grumpy as i write this as i am struggling to hold my 8 month old son for more than a couple of min's and has now started to affect my job, I am sure this is down to the fact i am going to be 8 weeks late on my infusions this time and my body is reacting.

I have discussed with the Dr. about a referral to Dr David Jane (Uk top Weggie DR) and she mentioned she shares a patient with Dr Jane at the moment and has a few Weggies on her books (passed from Dr Dunn's retirement) but I did not confirm the referral as stupidly was just interested in getting my infusions, she was really understanding and almost thought we clicked on our appointment at the beginning of the week, but in receiving the review letter from her about our meeting this week it does mention my concerns and that i think i am having a flair, but and there is always a bloody BUT she keeps saying throughout the letter there is no evidence of active vasculitis and repeats it in most paragraphs of the letter.


So my real question from all the above ranting/info is what is peoples feelings on Rituximab V Azathiioprine (Imuran)?


It makes it harder to accept that when looking online at my blood results 50% of them say Abnormal.... Wish i understood the blood results a little better and is my next research mission to work out what it all means.... Happy to post/pm them if anyone has blood skills here?

Ow this is rubbish and if i could have any super power it would be the power of healing!!!!!!

Thanks in advance for advise and help you beautiful lot :-) xx

[Pete]

Hi Ben,

FWIW, here are a few thoughts...

1. Be as aggressive as you can about getting a referral to Dr Jayne at Addenbrooke’s.

2. If your local doc insists on azathioprine/immuran, make sure they order an enzyme (TMPT?) test before giving this drug to you. This will determine if you can tolerate it. Aza acts more quickly than rtx, and it sounds like that’s your local doc’s logic for the treatment plan.

3. For some people, the ANCA tests are inconclusive about the presence of wegs.

4. Here are the labs I get now. I go bi-monthly as my disease activity has been low.
> complete blood count with differential platelets (CBC)
> comprehensive metabolic panel (CMP)
> C-reactive protein (it’s an indicator of systemic inflammation)
> sedimentation rate
> urinalysis with microscopy. Red blood cells present in urine accompanied by wegs have a unique appearance.

5. It sounds like you are very sick right now. You’ll need to be your strongest advocate for getting care. When you next see your local doc, you should have a prepared list of questions including:
> What is the logic/rationale for your treatment plan?
> Medication side effects?
> When should I start feeling better?
> what should I do if I don’t feel better or get worse?
> Can your doc consult with Dr Jayne about you?
> You may also want to discuss your confidence (or lack thereof) about your local doc’s treatment of you. I’d ask how many weggies/Vasculitis patients s/he treats in a year. A specialist will see several hundred annually.

6. IMHO (after all, I’m not a doctor) your local doc seems to be pussyfooting around with your treatment. I was put on cyclophosphamide (stop the disease activity) as induction therapy along with a high dose (60 mg/day) of prednisone to reduce inflammation. I also continue to take bactrim DS three times a week as prophylaxis against PCP pneumonia.

I hope you get the treatment you need quickly!!

[gilders]

Hi Ben. Sounds like stressful times for you!

When I was originally diagnosed with Wegener's, apart from plasmatheresis and dialysis, my treatment was just prednisolone and Azathioprine. Rituximab hadn't been created back then and I couldn't tolerate Cyclophosphamide. For approx 18 years pred and Aza have been the drugs that have worked well in getting me into remission with each relapse that I've had. But my last relapse was stopped in it's tracks with pred and Aza, but I didn't achieve remission. So I ended up seeing Prof David Jayne at Addenbrooke's who started me on Rituximab.

So although azathioprine is considered to be a maintenance drug, it can also be very effective as a front line drug that helps you achieve remission (at least with me).

In regards to your blood tests. If you're happy to post them we can all try to explain them. But take any responses with caution. Trends in blood tests are more important than one off results. A high, or low figure, may have more than one reason and you may get hung up and worry about something that isn't as serious as it may initially sound.

[drz]

The above info is good. The only thing I can add is that sometimes one can feel lousy and know a flare is starting before your labs confirm one. Usually though some abnormal labs or some changes will show up a few days later. Depending upon the damage you have from active GPA and the meds you are taking, some lab results may never be normal so the main thing is how stable they are and if there are any bad trends happening.

And that there is a borderline area between remission and an active GPA flare where you can feel poorly but not be ill enough for more aggressive treatment. My doctors have called this fluctuations of residual symptoms which tend to persist even in a state of remission. Some of these are from damage done by the GPA when it was more active. My residual symptoms usually got worse whenever I had any infections. Some times I thought i was starting a flare and felt anxious but my treating doctors only made minor changes in my meds (aza and pred) and had a wait and see approach and things usually improved in a few days or weeks.

Second opinions from a recognized expert are always good even if they just reduce one's anxiety.

[BenHornsby]

Hay guys,

Thanks for the sound advise, i did read it soon after you posted, but been batterling with this for a bit again..

just had it confirmed with labs that I am in the middle of a flare up last week. I have just had 2/2 infusions (every 4 months) but 10 weeks over due and feeling rubbish today....

Thinking about timing with treatment it's only just about covering me with the 4 month infusions now, when I was on 6 month infusions 5 or 5 1/2 months was about the best I could last without a flare, so, now it's 4 months and not much more.

I can guess it's one of two things, i am ether getting more tolerant to the treatment or the GPA is putting up the good fight... I will give it a run for its money.

I have a loads of appointments through now and have sinus surgery on the 26th of this month, renal team are involved doing samples and meeting in October, lots of rumatoligy appointments throughout the next 3 months. My local GP/doctor has been brilliant again and booked other things like bone scans ect and put me back on the pred at 50mg a day, just starting to calmb the pains in the evening. Although may have somthing to do with the extra pred when I had the infusion, they gave me an extra 100mg on top of my oral 50mg I take in the morning, no sleeping for me Monday night...

My plan is to have my list of questions and ask for a referral or at least to be a shared patient with Dr David Jane if possible, to ask about the treatments they are looking at and why they would be good for my case.

I do trust the professionals I see, just once you have amazing care from profesoinals interested in the condition to just becoming a number/patient on the conveyer belt feeling.

Hopefully my anxiety about it will pass soon when not so concerned about myself.

Thanks again for your messages of support this site truly is one in a million and gives me a place to talk freely without worrying a partner or family member with my little daily concerns.

I will keep you updated on how it goes over the next few weeks....

Thanks
Ben ;-)

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[Masha]

Hi Ben, This is just a note of support and to let you know I understand your anxiety. What you are feeling is pretty normal, when this disease controls us and not the other way around. It sounds like after all the tests are done you should have some answers. Hopefully, after the sinus surgery you will have relief.
Try to keep your chin up and think positively......yes, easier said than done.
Masha

[BenHornsby]

Hay peeps,

I have just got out of hospital, i got admitted for 3 days as I could not breath, i thought I was having an asthma attack, but after lots of tests and xrays showed that the chest infection I had did not want to leave my body.

On the mend again and the flare is starting to show signs of slowing down, so the infusion is starting to work, a few more weeks and I should be in a good place.

Had a good meeting with my consaltant and this time had the balls to mention my concerns with everything to do with the responces i have been getting and very happy with the answers, i think I am a little more relaxed about changing treatments as rituximab has been great over the last 6 years but just is not controlling the GPA at the moment, so they are stepping it all up.

One thing I am struggling with on this flare that I have not had before and not sure it's related but timing is perfect, is the amount of cramp I am getting. It's hitting all of my body in strange places and some normal, top of my feet - toes - inside my shoulder blades - mid back - neck, mostly in my toes hand and neck. But some of those places are very hard to stretch it out.. if I stop moving or put my feet up for a rest it just starts and would say I don't have a 2 hour period where it does not hit.

All of my bloods and results show normal for me excluding the flare markers and the Dr said it could be connected..

Does anyone else suffer with c4amos to this level, so far I have not come across it in the forum....

Thanks

Ben ;-)

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[Masha]

Hi Ben, sorry to hear y’all had to go in the hospital. But very smart, this disease moves like grease lightening. We don’t know where, when or how it will strike. So diligence is the name of the game.
Two weeks ago I saw my Rheumatologist, just for tests. I was feeling kind of punk, but nothing specific. The next day yellow sinus mucus. As we all do, I tried to tell myself it was just a cold, the following day the leg pain set in. No more denial, it was a flare. There I was ‘riding along in my pink Cadillac’. No I don’t have a pink Cadillac, but my way of saying I was hoping I was in remission. But due to the advice of all the people on this site I didn’t hesitate. On the phone with my ENT, on antibiotics and increased the Prednisone to 40. Hope I am on the mend. Not surprising, but when the tests came back from Rheumatologist my numbers were up, nothing extraordinary. C-ANCA was 1.8, where I started from. Frustrating.
About your pains. I don’t know. Before I was diagnosed, the bottom of my feet were very itchy. My mother used to say, itchy palms mean you are coming into money. Not so lucky, itchy feet meant I was coming into Wegeners. Now my right foot occasionally feels kind of fuzzy on the bottom. But nothing like what you are going through.
Hope your new medicine works.
Masha

[Alysia]

Hi Ben. I think cramps might be related to lack of pottasium.

Masha, sorry that you have another flare. I know how frustrating it is. Do you understand what caused it ? Any change with meds or something else ?

Sending you both prayers ❤❤

[Pete]

When I had cramping issues, I ate at least one banana a day to boost potassium and drank a bottle of tonic water for quinine to reduce inflammation. It helped quite a bit. Unfortunately, most tonic waters sold in the US contain either artificial sweeteners or high fructose corn syrup, so it is a matter of picking one’s poison...

[Masha]

Thanks, I am going to try the banana too. Like many of you I am anemic. I can’t take iron pills because of liver and stomach. Any suggestions. Can’t take B because of folic acid.
Thanks,
Masha

[Masha]

Alysia, You gave me food for thought. No change in medicine or activities. Then I had my AHA moment. I got a pneumonia shot. The pharmacist said that I may possibly have a reaction since I get the Rituxan infusions. I think that set it off. Doctor said I should have pneumonia and flu shot. The flu shot will be available at the end of August and I am scheduled for infusion in mid September. Hope it doesn’t start another flare, but the risk of getting the flu is dangerous for me. Thanks for helping me think about it. How is your vision?
Masha

[Pete]

Thanks, I am going to try the banana too. Like many of you I am anemic. I can’t take iron pills because of liver and stomach. Any suggestions. Can’t take B because of folic acid.
Thanks,
Masha

Some iron rich foods include green, leafy vegetables such as spinach. You can also eat beans, cashews, breakfast cereals that are fortified with iron, whole grain bread, turkey, ham, red meat, liver, shellfish such as clams, mussels and oysters. Many of these foods also contain folic acid. In short, eat a balanced diet of real food and appropriate portions, and avoid processed foods and sweet drinks that have sugar, high fructose corn syrup, or artificial sweeteners in them.

[Masha]

Thanks, I am doing some and I will add the others. Mom used to give me liver on a monthly basis when I was a teen. Not crazy about it but husband loves it- I’ll do it.
I remember you mentioning your doctors told you to get vaccines before treatment. I got the first half of Shindrix. Due for flu. They say wait six months since last infusion. The closest I can pull it is 5 1/2 months after, that will make me 2 weeks before next infusions. Doctors say to get vaccines. Your thoughts? Thanks. Masha

[Pete]

I get a single dose of rtx annually — usually between mid-September and mid-November. I get my flu shot in September. I got the shingrix shots this past spring. As my rtx treatment is not much of a scheduling issue, I have no guidance on vaccine scheduling. Don’t know who “they” are, but I’d take my guidance from my docs, assuming they know your whole medical situation and you have confidence in them.

[Masha]

‘They’ are the articles I read on the Net ie, Johns Hopkins, Mayo, etc. Pro to get non live vaccines. I am going to follow my doctors advice. I don’t think 2 weeks should make that great of a difference. Doctors didn’t either. Want to fit a vacation into this scheduling too. Life must go on.
I really appreciate your guidance , Pete. Some of my questions are so minor to what you and others have faced. I just don’t want to create a problem where there isn’t any. Shopping for liver and shell fish tomorrow.
Did you hear Naples to Sarasota beaches have been overloaded with dead fish? Worst ever.
The greatest wealth is your health.
Masha

[Alysia]

Thanks, I am doing some and I will add the others. Mom used to give me liver on a monthly basis when I was a teen. Not crazy about it but husband loves it- I’ll do it.
I remember you mentioning your doctors told you to get vaccines before treatment. I got the first half of Shindrix. Due for flu. They say wait six months since last infusion. The closest I can pull it is 5 1/2 months after, that will make me 2 weeks before next infusions. Doctors say to get vaccines. Your thoughts? Thanks. Masha
Masha, not sure you saw, I tagged you on a post here

https://www.wegeners-granulomatosis.com/forum/threads/5716-Searching-for-anybody-that-has-connected-their-WG-to-vaccines/page3

[Aneinu]

Hi Ben, sorry to hear y’all had to go in the hospital. But very smart, this disease moves like grease lightening. We don’t know where, when or how it will strike. So diligence is the name of the game.
Two weeks ago I saw my Rheumatologist, just for tests. I was feeling kind of punk, but nothing specific. The next day yellow sinus mucus. As we all do, I tried to tell myself it was just a cold, the following day the leg pain set in. No more denial, it was a flare. There I was ‘riding along in my pink Cadillac’. No I don’t have a pink Cadillac, but my way of saying I was hoping I was in remission. But due to the advice of all the people on this site I didn’t hesitate. On the phone with my ENT, on antibiotics and increased the Prednisone to 40. Hope I am on the mend. Not surprising, but when the tests came back from Rheumatologist my numbers were up, nothing extraordinary. C-ANCA was 1.8, where I started from. Frustrating.
About your pains. I don’t know. Before I was diagnosed, the bottom of my feet were very itchy. My mother used to say, itchy palms mean you are coming into money. Not so lucky, itchy feet meant I was coming into Wegeners. Now my right foot occasionally feels kind of fuzzy on the bottom. But nothing like what you are going through.
Hope your new medicine works.
MashaSorry to hear about the flare up. My son is so good at this denial stuff. He lives by it, until he can't any longer. Like today.

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[BenHornsby]

Hay guys, these things never go away very fast any more...

Getting used to the time it takes to get on the better side if good and still fighting my way back.

I am getting better, flair signs are still slowly reducing, but the cramp is getting worse. Around mid afternoon I am starting to get it, a similar time that my legs start to go during a flair and it continues on and off till I sleep late evening. You know when things start to link and have patterns, it seems like the timing of the cramps are bang on as to when the arthritis pains normaly start.. they have started me on Quinine Sulfate to see if that helps but 2 weeks in and not any change.

On a positive note my doctors and specialists have now agreed to keep me on rituximab 2x every 4 months and start me on methotrexate in a couple of weeks time once back from holliday. They have offered self injection if I suffer with to many side affects or look at some alternative drugs.

I just have to shake this double lung infection and get ride of this soar throat and I will be right as rain ....

Oh the Weggie just keeps giving...



Again thanks so much for all the input, truly is the best forum :-)

Thanks peeps and stay strong

Ben xx

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[drz]

Hay guys, these things never go away very fast any more...

Getting used to the time it takes to get on the better side if good and still fighting my way back.

I am getting better, flair signs are still slowly reducing, but the cramp is getting worse. Around mid afternoon I am starting to get it, a similar time that my legs start to go during a flair and it continues on and off till I sleep late evening. You know when things start to link and have patterns, it seems like the timing of the cramps are bang on as to when the arthritis pains normaly start.. they have started me on Quinine Sulfate to see if that helps but 2 weeks in and not any change.

On a positive note my doctors and specialists have now agreed to keep me on rituximab 2x every 4 months and start me on methotrexate in a couple of weeks time once back from holliday. They have offered self injection if I suffer with to many side affects or look at some alternative drugs.

I just have to shake this double lung infection and get ride of this soar throat and I will be right as rain ....

Oh the Weggie just keeps giving...



Again thanks so much for all the input, truly is the best forum :-)

Thanks peeps and stay strong

Ben xx

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This quote sure fits for GPA, doesn't it?
Never, never, never give up! (Winston Churchill)

[BenHornsby]

This quote sure fits for GPA, doesn't it?
Never, never, never give up! (Winston Churchill)
Does kinda fit well...

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[marta]

One thing I am struggling with on this flare that I have not had before and not sure it's related but timing is perfect, is the amount of cramp I am getting. It's hitting all of my body in strange places and some normal, top of my feet - toes - inside my shoulder blades - mid back - neck, mostly in my toes hand and neck. But some of those places are very hard to stretch it out.. if I stop moving or put my feet up for a rest it just starts and would say I don't have a 2 hour period where it does not hit.

All of my bloods and results show normal for me excluding the flare markers and the Dr said it could be connected..

Does anyone else suffer with c4amos to this level, so far I have not come across it in the forum....

Thanks

Ben ;-)

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Hi Ben, so good to hear things are looking up.

The advice you got above is amazing. I can say without a doubt that the advice I got on this forum from this group saved my life more than once. I haven't been on here much lately, and there is a funny reason I'm on here today, but that's a different story.

I just wanted to add a couple of thoughts.

First. The cramps. I have gotten them so bad the last couple of flares that a few times I have had to stop driving and get out and stretch my legs and feet because they were cramping up above the gas pedal. My 100% guaranteed-to-work-go-to for cramps is topical magnesium. I have it from a health food place that is no longer in business and treat it like liquid gold... I found it also in our local drugstore where they have epsom salts, and it was called something like epsom salt on the go... I brought it with me during my last RTX infusion and there was a gentleman who was on the other side of the infusion room moaning all morning. Finally I asked the nurse what's wrong with him and she shrugged off the answer that he has cramps in his legs. I told her I have topical magnesium that will help him within a few minutes and she shrugged me off and refused to give it to him. A little while later, I asked another nurse to bring him the magnesium and tell him to just rub a little on his cramps. She complied, and literally (I use the term properly, ha ha) within 5 minutes, he stopped. He rolled himself over to me and with wide eyes asked what the heck did I give him. He had never experienced such immediate relief of his cramps.

So there. I hope that helps.

Second. I just wanted to share that I am on Imuran all the time, and when I have a flare, I'll get an RTX infusion, while on Imuran, and continue taking my Imuran after the infusion. It really seems to do the trick. I have learned that with each subsequent flare, your body has a harder time bouncing back, and the drugs have a harder time with efficacy. I know RTX is used as a maintenance drug in a lot of places, but since I can't take Cytoxin (lifetime max achieved, ha ha) RTX is my only 'big gun' left to deal with substantial flares, so I want to keep it as my Ace in the pocket. I got diagnosed in spring of 2010, I have had 4 flares since (2010 fall, 2012, 2016, and this last spring) and 4 RTX infusions (the last one only being 500mg vs the 2000mg the previous ones) I don't know if any of this helps in any way, but the more stories you read, the more arsenal you have in your holster.

Lastly, I'm glad you spoke up with your doc. It's a scary moment the first time, but it's so empowering, and things only get better from there. Kind, gentle, respectful, but firm in your requests and needs. It's quite cool when you go to a GP, and you know you've got a much better handle on your disease than they do. You end up working things out together, and sometimes they even learn something from you.

I wish you nothing but success.

Peace,
marta

[aewaustin]

For what is it worth I have had two severe Wegs episodes where I had to go through full on Cytoxan for two years for each episode (1992 & 2011) and my ANCA is never positive. The only way my labs show anything is for the kidney doc to spin my urine and see if there are dysmorphic (misshapen) cells. You really have to go on how you feel, and you have to be your best advocate. Best of luck!

[Masha]

Marta,
You have some great advice. I looked on Amazon for topical magnesium. They have lotions and oils, most refer to leg cramps and leg pains. I found my Epsom salts bath before bed does the trick. But my leg cramps only came at night. Think I’ll get a bottle of this stuff just in case.
You are right on about vaccines. Stupidly, I got the pneumonia one and it caused a flare. Per, what you said I am not getting the flu one. The one they gave last year did not even address the flu that was out. I am safer wearing a mask and gloves. My problem is I had the first half of the new shingles shot (Iam 68). Now due for the other half before my next Rituxan series. I read where one in three over 65 get shingles, double that for RA, more for lupus and GPA. But then yesterday a friend from out of state called. She is 75 and has RA. Her Rheumatologist told her she’s met with other Rheumatologists and they don’t feel they have enough data to say this vaccine is safe for autoimmune. Then my friend found an article in a seniors magazine that said not to get it.
You are up on all this. What is your feeling? Do I stop midway or finish it off? To put you in the clear, I am not asking for medical advice, just your informed opinion.
Masha