View Full Version : Iron infusion

12-31-2009, 12:20 AM
Hi all

I had a clinic appt yesterday with renal docs and things aren't looking so good. I'm having a flare so it looks like Cellcept can't hold the WG for me, even though I tolerate it really well. I have to up my dose to 1 gram twice a day and pred up to 20mg from 5mg, then drop to 15mg for two weeks etc back to 5mg.
I'm back at the clinic in a month and if the increased meds haven't worked I get to try lovely Rituximab! My doc doesn't want to put me back on the cyclo as I've already had 6 months of it and they're concerned about fertility amongst other things. I'd appreciate some feedback from anyone who's had Rituximab as to what I can expect.

Also, my Hb and iron is low so I have to go in as a day patient to receive an Iron infusion by IV. Has anyone else had this and if so, is it a breeze?

On the plus side my liver and kidney function are good, lungs sound ok, I've lost a couple of kilos and my cholesterol is 4.8. I think the flare may be affecting sinuses and ears this time as I constantly feel congested and am deaf in one ear for a lot of the time. I've not had involvement here before but it looks like I get to experience more of a full range of WG symptoms.

Disappointing as I've been steadily improving for months now, but the only problems I notice are the deafness and being even more tired than usual due to the anaemia.

I guess I may as well end this year in the same way I started it, but the wedding is going ahead whatever!

12-31-2009, 02:02 AM
Oh, Luce, I'm sorry to hear you're in a flare. What dose of Cellcept have you been on? The usual is 2,000 mg/day. The problem with increasing it once a flare has started is that it takes a month to kick in.

That's what happened to me. I was on 2,000 mg/day for a long time and it never felt like enough. We increased it to 3,000 mg/day once the flare was in full swing but it was too late and the Wegs outran it. That's how I wound up on cytoxan. But it destroyed too much bone marrow, and that's how I wound up on Ritux!

I haven't had iron infusions. When I got my rtx infusions several people were getting iron. One had an immediate allergic reaction (treated with benadryl and IV pred) to one type. She later did just fine on another type.

12-31-2009, 02:16 AM
I've only been on 1500mg a day, do you think that's a little low?
I am very much a larger girl but I'm not sure if dose is decided on weight like with ctx, my doc said yesterday that a max dose is 3g a day but they're reluctant to go much higher because of the low haemoglobin levels and anaemia. I'm also worried that this might be too little too late and wonder if a 4 month gap between blood tests and check ups was too long. I've not worried because my ANCA has to be way up before I feel ill and I've not really had any definite symptoms. ANCA's always been a reliable marker for me and I've gone from 10 to 53 in four months, which is the smallest flare I've seen since being diagnosed.
I'm also wondering if having the seasonal and swine flu shots are responsible for the flare...

12-31-2009, 02:23 AM
Cellcept isn't dosed by body weight. It seems odd to me that they wouldn't fix your anemia if it's interfering with you taking a full dose of Cellcept. Seems backwards to drop the Cellcept because of anemia! 1,500mg/day is very low.

A 4-month gap is definitely too long. Three months is the usual for a check-up until you are well into a solid remission. Blood tests should be done more often than every 3 months unless you are doing very well and improving all the time.

The shots may have something to do with it, but there's nothing you can do about that now.

12-31-2009, 02:28 AM
I feel a little annoyed now that I've been let down a bit by doctors and their bad decisions have caused the flare.
Let's hope they can put it right before any damage is done...

12-31-2009, 02:36 AM
Believe me, I understand.... My past docs really screwed things up!

For my current flare, though I'm not upset at my docs. I knew I was flaring in Feb/Mar but it didn't show on blood work. My inflammatory markers were fine! By the time the symptoms went wild it was too late to get it under control with Cellcept, and it also meant having to go back on pred. But now my docs know that my symptoms are more accurate than the blood work, so it shouldn't happen again.

I hope they get your flare under control easily and quickly.

12-31-2009, 04:00 AM
Sorry to hear about your flare up Luce, hope the increased meds work for you.

When I have had trouble in the past, I've had weekly visits to my doc for bloods etc, but perhaps it is easier for me because I live so close. I do think that your condition needs more detailed monitoring though. It is all to easy for things to run away and get bad if you don't keep a close eye on them.

12-31-2009, 05:17 AM
Sorry Luce about your flare. I agree with Sangye 1500 of cellcept is low. I'm on 2000mg of cellcept. Need to have a check up at least once a month since your flaring. Hang in there, we are holding your hand for support.

12-31-2009, 07:01 AM
Thanks everyone, I didn't realise my dose of Cellcept was so low - the doc who prescribed is a bit of a maverick and I think he acted too rashly to the good progress. Most of the other docs at the clinic have been far more cautious and use the softly softly approach, unfortunately the renal team is made up of about 8 docs and I just see whoever is taking the clinic that day and they al have differing opinions.
Thanks for all your kind messages :)

12-31-2009, 07:17 AM
The more I learn about Wegs, the more I appreciate the "softly softly" approach. Each time I've started to feel a bit better I've asked my Wegs specialist if I can stop pred or whatever drug I'm on. He's taught me that you have to let the Wegs fire get completely extinguished-- no smoldering embers-- before you start lowering doses or removing drugs. Of course, you have to lower pred doses as you improve, but there's a threshold dose that you can't cross until you're out of the woods-- different for everyone.

12-31-2009, 07:27 AM
Luce, Luce, Luce! My heart goes out for you! You were doing so well. I agree with all the comments above, and add this somewhat biased comment about the hearing: ENT doctors are the worst I ever dealt with. Please, please, please make sure any ENT doctor dealing with you head issues actually has a license to practice! I joke- slightly!- but please quiz the doctors very closely about their familiarity not only with weggie issues but with their familiarity with those doctors you've been seeing with weggie issues. I'm deaf in my right ear because of the lousy care from ENT doctors in three hospitals. One was indecisive, one was God's gift to weggie patients and didn't need to consult with any doctors involved in my care for the long term, and the other dismissed any practical approach to dealing with the scar tissue in my right ear that covers the eardrum and came up with the alternative- more expensive!- of a cochlear implant. Oh, one was OK, but he didn't have me as a patient for the full course of my ear infection/shingles attack. I've settled with being deaf in one ear until I die or I learn of a change in staff in any of the three hospitals.

I don't have any thoughts on the renal care. Herding eight doctors to one path would be like herding cats, I fear. Is there any way you can learn the schedule of the eight doctors, then select the one or two you feel have done the best job for you, and make an effort to see them exclusively? I don't recall if you had to travel very far for your appointments, so this might not be practical. The other thing would be to become more your own advocate, quizzing the doctors you feel are acting less in youR best interest, pointing out what the other doctors did and their reasoning (you, of course, will have to quiz the doctors you feel best serve your best interests so you can do this). I thought Jack said you do have some say in which doctors you see in the NHS scheme of things. If I understood correctly, you especially want renal doctors who are specialists in the weggie sense of the word, not just generally specialists (that sounds like an oxymoron). Anyway, I mean specialists in kidney disease who don't have experience with weggie care when I say "not just generally specialists".

My best wishes to you, Luce, and may you get back on track!

12-31-2009, 05:37 PM
Luce wishing you get back to health soon. It seems that your docs are like you said a bit maverick, but with this disease so many different drug coctails and doses are used that I am not surprised. if this gets you onto rituximab, that may be for the best.

12-31-2009, 11:30 PM
Doug, they're not sending me to an ENT as far as I know. I guess they're hoping the symptoms subside with the increased meds and/or rituximab. It very much depends where you live in the UK as to how much choice you have in who treats you as it is all based on doctor referral. You can't phone a particular consuultant's office and ask for an appointment out of the blue.
I'm stuck under renal doctors because of the initial kidney involvement and need for plasmapharesis, so they now call the shots as they have my history. These renal doctors serve the whole county, holding clinics in hospitals in various towns as well as working from the county hospital - so if you live in Dorset and have a renal problem you will see these doctors and the clinics are massively over-subscribed. They assure me they have lots of weggies under them who they treat and that they're in a better position than the rheumy doctors in the county to provide my primary care, I don't know but have to go along with what they say.

Jolanta, I do wonder if the maverick doc I saw who put me on the low dose of Cellcept may have had an alterior motive now you mention it. When I saw him we talked about Rituximab to help me conceive but he said I was too well to justify the treatment. I now can't help wondering if he almost induced a flare to help me get on to Rtx??? Pretty risky way to do it if that's the case but I will welcome the rtx with open arms!

01-01-2010, 12:01 AM
I now can't help wondering if he almost induced a flare to help me get on to Rtx???
I can't imagine any consultant doing that with a potentially fatal disease. For your own peace of mind, don't start brewing up conspiracy theories.

01-01-2010, 12:04 AM
I think the doctor didn't know what he was doing. It makes him look bad if he undertreated you.

01-01-2010, 12:40 AM
I know Jack, it was a bit of a flippant remark and it doesn't really hold any weight with me because as elephant says, there's no way a doctor would make such a decision. I've been watching too much House!
I think it's more likely he thought I was closer to remission than I actually was and was eager for an early success.

01-01-2010, 02:23 AM
Luce, turn that tv OFF! :)

Diagnosis in general is very difficult, and with Wegs it's a nightmare. Test results are often inaccurate indicators. Symptoms can be hard to differentiate from drug side effects or other conditions. And we also look okay, which is subconsciously misleading to doctors. (Those of us who are naturally cheerful look WAY better than we really are)

Add to the pile : Wegs docs know they can't reduce the drugs until the disease is really under control. But they also know they need to get us off the drugs or onto lower doses as soon as possible because they're so damaging.

This is why Wegs specialists are so important. But even they can make mistakes and overtreat or undertreat. I think your doc just jumped the gun with you, Luce.

01-01-2010, 06:34 AM
What's it like to be British watching a British actor in an American television series speaking with a very good American accent (incidentally!)? My first encounter with Hugh Laurie (sp) was in his various roles in the very droll "historical" series, "The Black Adder". All of the main actors were so good in that series, that I hoped more would be produced. Sorry for the aside.

01-01-2010, 07:09 AM
VERY off topic Doug and I don't want to make Andrew angry but Hugh Laurie is very acceptable with an American accent, it never slips. In fact I find it hard to watch the behind the scenes things for House as it's now very hard to hear Hugh speak in his Oxford educated English accent.

Blackadder wasn't that short, there were four series in total and I highly recommend Blackadder goes Forth if you can find it.

I think you're right Sangye, it's very much finding a balance and I obviously still need some fine tuning.

01-01-2010, 07:28 AM
Yes! That's what prompted the question. Hearing him speak perfect American English in House, it shocked me to hear him on a talk show speaking with his "normal" accent. Thanks for the heads up of the fourth series. The set I had had the first three. Hysterically funny stuff played by brilliant actors!

01-01-2010, 08:28 AM
Hi Luce,

So sorry to hear about your flare.

I've had 8 infusions of Ritixumab so far, and it's worked brilliantly, and for me, no side effects whatsoever!! Each infusion takes about 5- 6 hours, as they have to do it v.slowly, but the 'cover' they give you, piriton, just makes you sleepy, so it's actually one of the nicest meds i've ever had!

Good luck, Gwen xx

01-01-2010, 09:51 AM
Ahem... Doug.

01-01-2010, 11:49 AM
Gwen, is that your new addition? Absolutely adorable!
Thank you for sharing your experience with Ritux, I've heard nothing but good things about this drug for weggies.
I can't wait to see this drug being used routinely to spare new weggies the horror of cytoxan.

Doug, the fourth is the last and in my opinion the best - fantastic example of British humour and if you do get to track down the fourth series may I just say "wibble".

01-01-2010, 04:23 PM
Gwen your new daughter is simply adorable. You sure know how to make babies (well some of that goes to your other half too). You are an inspiration to all the young women visiting our forum who want to start a family either now or in the future. When time permits please keep sharing some of your thoughts with us. Best wishes to you in the New Year.

01-01-2010, 06:32 PM
Thanks guys!
Her name is Eirian, and she is 5 months old now.
I have to say that i never thought I would be able to have children, having had so much cytoxan (and reacted so badly to it), but how wrong was i! We have three blessings now (no more, lol!) and we truly have been blessed.

Post pregnancy i've had flare ups soon after the birth,and so being on chemo had to stop breastfeeding, but luckily after this pregnancy, I was giving Ritix, and I was able to breast feed which meant a lot to me.

Truly blessed days. x

PS. Nice to be back. It feels like coming home! Happy new year everyone xxxxx

01-02-2010, 03:50 AM
Eirian is just gorgeous. Snuggly little face! I agree with Jolanta, that you are an inspiration to young Weggies who hope to have families-- whether biological or adopted, parenthood is possible. I'm glad you're back on here, too. Missed you. :)

01-02-2010, 04:31 AM
She is gorgeous. You are certainly blessed to have three wonderful children. You are a strong person.