Relapse?

Autoimmune Hemolytic Anemia
#1

Hi everyone,

I was a member of the yahoo AIHA group and noticed a link to Careplace. I thought I would check it out but noticed that the board hasn’t been very active since July. Perhaps everyone is feeling better?

My story: I was dx’d with AIHA in October 2003, did the Prednisone thing for most of the next year. In July 2004 my hemo gave me 4 rounds of Retuxin which bumped me into remission.

I’m no longer in remission…waiting on a blood test result tomorrow for sure, but I can tell it’s back. You know: racing pulse, tea-coloured urine, thudding head, etc…

I was wondering for those of you with relapsing AIHA, did you go back on prednisone with the relapse and does it work? As well, anyone who had the Retux treatment, if you relapsed, have you had another round of treatments?

I am not happy about this starting up again…brings back very bad memories.

Thanks in advance

(On a happier note, I very much wanted to start a family before the first time with AIHA, and I had a son in July 2006…a bit of hope for anyone struggling with this awful disease).

Jackie

#2

Jackie,
You have the classic signs of a relapse - it’s always the same for me. Yes, whenever I relapse, they usually reach for the Prednisone. I hate it, and every time I take it and gain weight, I say, “Never Again.” But I feel so bad during a relapse that I usually don’t have the strength to refuse, because luckily the Prednisone makes me feel better within days.

There are other treatments. There’s Imuran and IVIG, too. I would think that since it’s been a few years since your Rituxan treatments that it would be ok to give that to you again. Whatever works, right? It’s great if your dr and your insurance agree to it.

How much Pred does it take for you? They used to start me on 60mg, but now they know that 40mg are usually enough to stop the AIHA. My last round of Pred lasted, start to finish 7 months. Yuck. I’m only just now starting to lose the weight I gained on it.

Ask about more Rituxan and the Intervenous Gamma Globulin as well.

Take care and hang in there - and congrats about your son. I have a 7 year old little boy too.

Jill

#3

Thanks so much for your prompt response, Jill. Though I hate this disease and would never wish it on anyone it means so much to have others who know what it’s like.

I’m just waiting until my appointment with my GP this afternoon, hopefully we can get rolling soon after.

I started with 100 mg of pred for 2 weeks the last time, then down to 60 then to 40 then did the dance with weaning it over the next 12 months. In the end, I couldn’t stop taking pred without hemolyzing again…hence the Retuxin. I gained weight and I hate looking at photos of my face from that year…very puffy.

I love my hemo. Ironically, his dog had just passed away from AIHA right before my initial referral and he was very aggressive about getting the hospital to pay for Retux. I’m in Canada and I’m sure you know about our universal health care. It’s a great system but it doesn’t cover experimental treatments like Retux. and I have no additional insurance except a drug plan through my employer. So, hopefully, the hospital will pick up the $15000 again.

I will ask about Imuran and IVIG. I was hoping that a magic bullet was invented since I went into remission that made it go away forever. :slight_smile:

Jackie

#4

Hi Jackie,

I too have had a recent relapse, not bad but my hem/onc wants to me to do another round of retuxin. I had one round in Nov. 05 and did great up until two weeks ago when my hct was consistantly 40-41, it dropped to 35. For some reason I am hemolyzing again.

I was bumped up on the pred to 10. I was on 2.5 everyday. In the past whenever I tried to go off the pred I would always relapse. So we decided to just stay on the low dose - obviously my body needs it. I was diagnosed in July of 98.

If I am remembering correctly, you used to post on Health Boards and told me about the list on Yahoo? They delete everything that contains a webpage. But luckily I caught it before they did.

Congrats on your son!

Lori

Hi everyone,

I was a member of the yahoo AIHA group and noticed a link to Careplace. I
thought I would check it out but noticed that the board hasn’t been very active
since July. Perhaps everyone is feeling better?

My story: I was dx’d with AIHA in October 2003, did the Prednisone thing for
most of the next year. In July 2004 my hemo gave me 4 rounds of Retuxin which
bumped me into remission.

I’m no longer in remission…waiting on a blood test result tomorrow for sure,
but I can tell it’s back. You know: racing pulse, tea-coloured urine, thudding
head, etc…

I was wondering for those of you with relapsing AIHA, did you go back on
prednisone with the relapse and does it work? As well, anyone who had the Retux
treatment, if you relapsed, have you had another round of treatments?

I am not happy about this starting up again…brings back very bad memories.

Thanks in advance

(On a happier note, I very much wanted to start a family before the first time
with AIHA, and I had a son in July 2006…a bit of hope for anyone struggling
with this awful disease).

Jackie

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#5

Hi Lori, good to hear from you again…I remember when I was bumped off of Healthboards. I was checking it out the other day and still there is only a little bit of discussion about AIHA…Careplace seems like a better spot.

Well, I am definately hemolyzing again: hemoglobin on Monday was 8.1 and yesterday was 7.6. I’m on the 100 mg of prednisone and feeling agitated and sleepless. I didn’t miss this feeling. The prednisone hasn’t stopped the hemolysis but it is slowing it down…hopefully a few more days and my hemoglobin will start to go in the right direction.

I start Retuxin on the 2nd of November and will have 4 rounds again. I’m so happy that my hemo didn’t waste any time getting this set up for me.

I just want to feel better – the little guy is busy busy busy and doesn’t understand why Mommy is just lying on the couch while he plays on the floor. As well, my hemo and GP have given me a threshold hemoglobin count before I have to be treated in hospital – I’m thinking rich blood thoughts.

Lori, I’ve been thinking that I might have a conversation if there is any value in giving people with relapsing AIHA a preventitive round of Retux on a yearly basis…it seems to work for a while, then just stops. But, while it was working for me, it was great … I’ve been steroid free for 3 years (until Tuesday).

Thanks for the kind words and thoughts.

Jackie

#6

Hello to all, I have been diagnosed with Sweets syndrome 3 years ago then a month ago I was told some of the symptoms I have are sjogrens syndrome I also have scleroderma. I was sleeping up to 18 hours a day and was so tired I didn’t want to get out of bed. Then I started clements tonic which is a multi vitamin in liquid form, now I only sleep 8 to 12 hours a day and feel so much better. I was told by the doctors to use the liquid form of vitamins as it is absorbed into the blood stream quicker, so it works better. Just wondering if this would also help others with chronic fatigue syndrome or those who are anemic. Good luck to you all. Love and Hugs Robyn