serum sickness

[Lynn del]

I just had rabbit ATG and I have severe serum sickness. My legs are numb and all my joints hurt and I get muscle spasms. I also have been running fevers. After the treatment all my counts bottomed out. So I have been getting alot of transfusions. My platelets were 4 before the transfusion yesterday. My red cells are holding now and the white cell were .5 and now they are 4.2. I'm also very weak and can't take the pain. Has anyone had serum sickness for over 2 weeks and counting? Any help would be great !! Lynn

[ccartbmw]

Hi Lynne,
Yes, I got serem sicknes, it lasted about 2 months and I got shingles for about 3.5 months.It was the most painful thing. But I finally got over everything, it was 1 year ago on April 1st that I had my treatment. I cannot believe how great I feel. I am now in remission. I have been training for the breast care walk in September. My goal is to walk 39 miles. I am up to 6 miles and working out 3 times a week, yoga once a week and water arobeics twice a week. My levels are all up. I was so scared to have the ATG treatment again after having it in Jan.2005. I spent 5 long months in the hospital the first time. The second time it went alot better 5 days. But alot easier than the first. It was all worth it. Smile and never give up. Try and keep as postive as you can.

Thanks for listening
Carol
Dr Paquette is the Best!!!!!

[michelle_lapuz]

I hope you feel better....serum sickness is the worst - I couldn't move and had to be admitted again for IV steroid treatment followed by high dose steroids for a month and a half. The ATG is 'supposed' to be completely out of your system at about a month - are you close? If not, I would definitely talk to your doctor about it....good luck!!

Michelle

[Lynn del]

Thanks Michelle and Carol, my last infusion of rabbit-ATG was March 22, so it's not a month yet. When I had the horse ATG 10 years ago, I had joint pain for 2 years. I don't think this one will be as bad because I didn't get the bad rash all over, and I found out later that I was allergic to horse before because they use that in tetnaus shots and I got a high fever and rash with the shot. I'm trying not to take the steriods because I get really shakey and my hearts pounds and my pulse races with the steriods. They only problem with this treatment is that my counts keep bottoming out and I need alot of transfusions. Is this normal? Thank you for all your help, Lynn

[ccartbmw]

Hi Again,
I had transfusions for around 2 or 3 weeks. But than I did not need them any more. I have not had any since that time a year ago.

[Lynn del]

I went to Sloan-Kettering to see Dr Castro for a follow up. I'm in the middle of severe serum sickness. All he wanted was for me to sign up for a bone marrow transplant. The cost to me would be $20,000.00. I just had Rabbit ATG and he didn't even care to see if the treatment worked yet. When I didn't sign the papers and said I have to think about it, I don't have $20,000.00, he got really mad at me. This is not how a doctor should treat a patient. He should have empathy and caring about what the patient is going through at the moment.
Now I have nausea and shaking, I can hardly stand alone. I have to get a platelet transfusion, they are down to 6.
Thanks for the support, Lynn

[rschem]

I had ATG (horse) serum aug. 08. Iwas luckey to have almost no side efects to the serum. I had a bad reaction to one of the platlet tx. I had the chills and shakes.I am now partially recovered and don"t need tx"s My hg is @ 100 platlets 50 ,wt.3.5,nf 4. Hope you are feeling better soon and get transfusion free.Good luck.
Robert

[Hawaii Bill]

Hi Lynn,
I had horse ATG back in Dec 2006, but no serum sickness. I think that was because of the Prednisone they gave me (although maybe some patients still have serum sickness despite it, I don't know).

My hemotologist told me a few days after the last ATG that my prognosis was good because my white blood cells were responding.

Perhaps your doctor is basing his suggestion of the BMT on some early indicators of your response to the ATG treatment? Maybe he thinks that the second round will not be helpful?

I had 5 days of ATG, followed by 21 days of confinement in the hospital, getting transfusions, mostly platelets because the ATG tends to wipe them out, as I understood it. Once I got out, I did not need platelet transfusions again until my relapse 9 months later.

My doctor has been mad at me a couple of times. They're human. But it sure was not very nice...

You know the difference between God and doctors, right?
God knows He's not a doctor.

Hold fast!

[Lisa V]

Originally Posted by Lynn del

I'm trying not to take the steriods because I get really shakey and my hearts pounds and my pulse races with the steriods.

That sounds pretty unpleasant, Lynn, but is it worse than the serum sickness? As far as I know, prednisone is the best treatment for serum sickness, along with Tylenol or some other non-NSAID pain reliever. Unfortunately you may have to choose between the lesser of two evils. I sure hope it gets better soon!

Some people respond to ATG faster than others, but it's certainly not unusual for your counts to get worse before they get better, and to still be needing transfusions for weeks or months afterwards. My husband took 10 weeks to become transfusion-independant after his first ATG, but it only took him 5 weeks to get to that point after his second round.

I don't know what's going on with your doctor, but he sounds out of line to me. Pushing you to transplant before you've had time to see if the ATG is going to work is bad enough, but getting mad because you can't afford it??? What are you supposed to do? A BMT is a big deal! It's even more bizarre because that's practically the opposite of the experience we had. In order to find out if Ken had a sibling match, we were required to meet with a social worker and submit a financial plan proving to them that a transplant wouldn't bankrupt us. The thing is, it very well might, and we had no intention of going to transplant at that point anyway, since he's been doing fairly well on IST, but we just wanted to know if he had a match, just in case. We were told, however, that unless we had a viable plan in place for the whole deal, they wouldn't even do the sibling testing! Naturally we told them what they wanted to hear just so they'd do the tests, but we definitely got the feeling that it was all about the $$$, not about what was best for him.

[Lynn del]

Hi Lisa:

I started to take prednisone for the serum sickness, I took 20 mg. but I need to take more.
The doctor was really out of line. It took alot for me to go to NYC and to be around all those people when my counts are so low, and I was in so much pain. He just wanted me to sign my life away without any financial help. I want to see if this rabbit ATG works.
Last year I went to Yale in CT. and they cross-matched my sister and brother free, but they weren't a match to me. I've been going to my local doctor and have been getting alot of transfusions and neuprogen shots. I hope the ATG will soon kick in. When I had the horse ATG I had 1 platelet transfusion and in a few weeks my count came up, the red were 13, the whte 6, but the platelets only came up to 40, it lasted for 18 months then I needed transfusions again, but only once a year.
What is IST? Thanks, Lynn

[Lynn del]

Originally Posted by rschem

I had ATG (horse) serum aug. 08. Iwas luckey to have almost no side efects to the serum. I had a bad reaction to one of the platlet tx. I had the chills and shakes.I am now partially recovered and don"t need tx"s My hg is @ 100 platlets 50 ,wt.3.5,nf 4. Hope you are feeling better soon and get transfusion free.Good luck.
Robert

Hi Robert:
When I get platelets I also get chills and shakes, they call it rigors, and I found out that demerol stops them. If they give it to you right away a 12.5 dose works. Thanks, Lynn

[Lynn del]

Originally Posted by Hawaii Bill

Hi Lynn,
I had horse ATG back in Dec 2006, but no serum sickness. I think that was because of the Prednisone they gave me (although maybe some patients still have serum sickness despite it, I don't know).

My hemotologist told me a few days after the last ATG that my prognosis was good because my white blood cells were responding.

Perhaps your doctor is basing his suggestion of the BMT on some early indicators of your response to the ATG treatment? Maybe he thinks that the second round will not be helpful?

I had 5 days of ATG, followed by 21 days of confinement in the hospital, getting transfusions, mostly platelets because the ATG tends to wipe them out, as I understood it. Once I got out, I did not need platelet transfusions again until my relapse 9 months later.

My doctor has been mad at me a couple of times. They're human. But it sure was not very nice...

You know the difference between God and doctors, right?
God knows He's not a doctor.

Hold fast!

Hi Bill:
Thanks for your response. What are you doing now, since you relapsed? When I had the horse ATG it was 4 days and it took a few weeks to respond but I didn't need transfusions. It lasted 18 months then I needed red cell transfusions but only once a year. This time the rabbit ATG was 5 days then I went home the next day. I had the same doctor last time and he knew that it took a few weeks for me to respond. Last week I had transfusions almost everyday. I started to take the prednisone because my joints are so painful and my legs and arms are numb. I have to go tomorrow to my local oncologist to check my counts. I hope they stabilized. I have to put myself in God's hands. Thanks, Lynn

[Hawaii Bill]

Hi,

My doctor and I were thinking it was time for me to go thru a second ATG treatment early last year. I decided that I wanted to get into a clinical trial if I could, and found a trial using Sirolimus instead of ATG. I went to UCLA, one of the trial sites, and was evaluated by Dr Paquette. He reviewed my medical records for about 30 minutes with me, and suggested trying a "therapeutic" dose of Cyclosporine (CsA) for a few months to see if it would have a response.

This made perfect sense, because my disease was still moderate AA (it was VSAA before my first ATG treatment) and I had the "luxury" of time to see if it worked, and I knew from all of the reading I did that CsA alone can be an effective treatment (it is just better when used with ATG).

So I started on CsA 200mg twice a day in June 2008. I had a red blood tx in July. By October, my counts stopped declining, and now they are rising very slowly. Last week my hgb was 11.3, white was 4.4, platelets 40, and ANC 2.0.

THANKS, DR PAQUETTE!

The thing that worries me now is what will happen when we start to taper. But at least I avoided another month in the hospital and the risks associated with ATG and Prednisone. CsA is no angel either, but I'm blessed that I can tolerate it. I lost a lot of hearing in one of my ears in October, and my hemo thinks it could have been the CsA. Paquette disagrees. Who knows? I am in my late 50s, and hearing loss happens.

[Lisa V]

Originally Posted by Lynn del

What is IST? Thanks, Lynn

IST = Immune Suppressant Therapy, i.e. ATG & cyclosporine.

Ken's had 2 rounds of ATG. The first time his Plts never got above about 30k on their own, and then he relapsed during the cyclo taper. For that reason (plus the fact that he has a trisomy 8 mutation), we haven't even attempted to taper him off the CsA this time, even though it's been over 3 years. He's still taking 175 mg/day (which is a concern), but the good news is that he has continued to show gradual improvement, with his Plts now over 115k and Hgb in normal range. It's been very slow progress, but we'll take it!

[Lynn del]

Hi everyone:

It's been 1 month since the rabbit ATG and my counts are not responding. I have to have transfusions all the time and neuprogen shots. I started to take 20 mg. of prednisone for the joint pains and it takes the edge off but now I have yeast infections and thrush. I feel weaker. I'm worst then before the tx. before I was having 1 red cell transfusion a month, now I'm at the hospital 3 times a week for transfusions and neuprogen shots. They didn't give me cyclosporin. Last time I had the horse ATG my counts responded slowly but I didn't need transfusions, the serum sickness was worse with the horse ATG. Now I'm sick with congestion and a head cold and very weak. Has anyone had numbness down their legs and arms, if so, how long does it last, it's so painful? Thanks, Lynn

[Hawaii Bill]

Originally Posted by Lynn del

Hi everyone:

It's been 1 month since the rabbit ATG and my counts are not responding. I have to have transfusions all the time and neuprogen shots. I started to take 20 mg. of prednisone for the joint pains and it takes the edge off but now I have yeast infections and thrush. I feel weaker. I'm worst then before the tx. before I was having 1 red cell transfusion a month, now I'm at the hospital 3 times a week for transfusions and neuprogen shots. They didn't give me cyclosporin. Last time I had the horse ATG my counts responded slowly but I didn't need transfusions, the serum sickness was worse with the horse ATG. Now I'm sick with congestion and a head cold and very weak. Has anyone had numbness down their legs and arms, if so, how long does it last, it's so painful? Thanks, Lynn

Hi Lynn,
My first treatment was with ATG, Cyclosporine, Prednisone, and Neupogen. I was in the hospital for 21 days after the last bottle of ATG. For that time and for about a month after I got out, I had to take a lozenge 5 times a day and let it dissolve in my mouth. That was to prevent thrush, which is merely a sign that your immune system is very compromised. The lozenges were nothing more than an oral form of the kind of meds they give for vaginal yeast infections. They also wanted me to rinse my mouth with a salt-water prep as much as possible.

Before I went in, I was getting a unit of red and platelets once a week. That continued for the 3 weeks that I was in the hospital. The platelets were worse until I was discharged. After that, I only had one platelet tx until my relapsed counts required it nine months later. I still needed red blood a couple of times after I was discharged, but by 3 months out I had my last one for many months.

When I was in the hospital, they drew blood for a CBC every morning and gave me the results. It was VERY depressing to see my counts decline every day. Things looked bad. But they finally slowed their decline and started to stabilize at a low count.

To be frank, I wonder what your docs are up to. No Cyclosporin? No Prednisone (at first)? Well, I guess they have their reasons; after all, Prednisone comes with its own set of possible problems.

Bill

[Lynn del]

Hi Bill:
When I went to Dr Castro he told me to take prednisone, but my heart races on it and I get very hyper. I take 20 mg and it helps with the pain but I have to take adavan with it. Doesn't prednisone cause yeast, and also I'm on antibiotics again and I know that causes yeast. They gave me the losenger also and I eat yogurt everyday. I also had diflucan and the yeast seems to go away then it comes back. He didn't give me cyclosporine because I had an allergic reaction on it after the horse ATG. But I told him to let me try it since it's been 10 years, but he didn't. So since I'm having the yeast problem, that means that my immune system is compromised
so my blood counts should start to come up? It's over a month and I feel so weak, I'm doing more than when I first came home, but there are days I can't function. Now I'm getting the sweats and I can't breath when it happens, I had this for a week after the horse ATG. Maybe the ATG is trying leave my system. Thanks for all your help. Lynn

[Hawaii Bill]

Originally Posted by Lynn del

Hi Bill:
When I went to Dr Castro he told me to take prednisone, but my heart races on it and I get very hyper. I take 20 mg and it helps with the pain but I have to take adavan with it. Doesn't prednisone cause yeast, and also I'm on antibiotics again and I know that causes yeast. They gave me the losenger also and I eat yogurt everyday. I also had diflucan and the yeast seems to go away then it comes back. He didn't give me cyclosporine because I had an allergic reaction on it after the horse ATG. But I told him to let me try it since it's been 10 years, but he didn't. So since I'm having the yeast problem, that means that my immune system is compromised
so my blood counts should start to come up? It's over a month and I feel so weak, I'm doing more than when I first came home, but there are days I can't function. Now I'm getting the sweats and I can't breath when it happens, I had this for a week after the horse ATG. Maybe the ATG is trying leave my system. Thanks for all your help. Lynn

Hi Lynn,
Wow, your situation really makes me feel thankful that I tolerated all those meds as well as I did. Going through ATG without enough Prednisone to counteract it's effects is tough! And rabbit ATG to boot.

My guess (and it is just that), is that since you only had the ATG, and not the CsA with it, as is the norm, that you might take longer for a response. In my case, the second treatment has been CsA alone, and it took 3 months before my counts stopped declining, and another 3 months for them to slowly start inching up.

Given your problems with the usual meds, you might want to consider a clinical trial that uses entirely different ones. There is one with a drug called Campath, and it does not use ATG or CsA. And then there is always Dr Brodsky's alternative treatment.

I sympathize with all you are going through. The 90 days after the ATG treatment are hard. Think of it: you had rabbit antibodies flowing through your system, wiping out lots of different cells and wreaking good havoc as well as bad, and you did it without much help from Prednisone. You are one tough customer!!! Hang in there!

[JEZ]

Hi Bill,

I have AA and am in my 50s. I developed serum sickness 2 days after discharge in Jan 2007 after receiving horse serum. I was readmitted to the hospital and received massive IV infusions of steroids which got rid of the serum sickness within a few days but necessitated a longer and higher dose of prednisone at home. It also delayed starting cyclosporine. I started cyclosporine in Feb. and was fully weaned off the prednisone in March. I did not initially respond and felt very sick and discouraged. My doctor switched me to a brand name (NEORAL) for the cyclosporine and I finally responded at the end of April 2007. My counts have steadily climbed. By November 2008 (1 1/2 years later) I got my first normal hematology lab! The side effects of cyclosporine are not so good though and I now have to deal with the possibility that it is toxic to my kidneys... but I soldier on. Hope this helps you see the big picture a bit.... stay the course!

JEZ

[Hawaii Bill]

Aloha,
I also take Neoral. My doc and I think it is the best of the 3 choices for me. Sandimmune seemed too weak, and Gengraf's value was unclear.

The CsA alone this second time around seems to be working, and Dr Paquette wants to keep me on this dose until I have normal counts, absent complications. So far, so good: my whites and ANC are normal or very close to it, my hgb is 11.3, and my platelets are at 40k. I haven't needed PRBC since last July, and my ferritin is now at a safe level, and still declining. I feel very grateful.

I was on a big dosage of Prednisone before I was even treated with ATG. The doctor was hoping that it alone would do some good. It might have, but my marrow was too hypocellular to wait.

This board and AAMDS are fantastic help!!

[Hopeful]

Hi Hawaii Bill,

Can you clarify what you meant when you said Gengraf's value is unclear?

I am currently taking Gengraf but have low trough level readings for the amount that I am taking. I take 6 mg/kg/day (150 bid), but my trough readings are only about 120. My counts have been falling so my doctors want to get my trough up over 200 to see if that will help. To do this, they want me to increase to 200 bid (8 mg/kg/day). I'm guessing that still won't be enough!

I'd appreciate any insight that you have on the types of Cyclosporine and why Gengraf isn't recommended.

thanks!

Hopeful

[Hawaii Bill]

Hi Hopeful,

I hope I did not mislead you. In June 2007, six months after my 1st treatment, the pharmacy began filling my CsA scrip with Gengraf. I assumed at the time that it as was just as good, and the smell of the Neoral I had been taking was something I could easily do without.

But within a month, my counts started declining. Then the sandimmune was used instead by the pharmacy. All in all, it was too fast a taper in the first place, and the alternative meds probably did not help the situation.

I really can't say if the Gengraf was effective or not. But the doctor has said no substitutes for Neoral since then. I read that SandImmune is not bio-equivalent to the other CsA generics, but I really can't say much more than that.

HTH

I weigh around 240, and I have been on 200mg bid of Neoral since Jun 2008.

I think the trough level is really important. Maybe you should ask about Neoral.

[Hopeful]

Thanks for the insight, Bill. Does anyone know if Gengraf is the bioequivalent of Neoral? I way about 110 lbs. So taking 200+mg bid will be huge! It's especially concerning in light of the kidney failure issues that have been recently posted.

[JEZ]

It is my understanding that the brand name NEORAL and other cyclosporines are not the bioequivalent. I was told when first starting to take cyclosporine to be carefully monitored when switching brands and source of manufacturer because they varied with the manufacturer. I was quite ill and my bone marrow did not respond on the first generic cyclosporine I took. It wasn't until I took the brand name drug (NEORAL) that my bone marrow started working. I am 206 lbs. and take 100 mg BID. Your doctor can adjust you dosage. Neoral comes in 25 mg capsules as well... at least that is what my insurance plan covers. I know that no matter what you take, you have to take cyclosporine twice a day as it is not time released.

[helen c.]

my husband has ben asked entering a clinical trial using Telintra- TK199 tablets has anyone been in this trial (how was it) did it help. he has MDS intermediate high risk