serum sickness

[Lynn del]

Hi everyone:
I have "good news" my platelets went from 1000 to 23000 yesterday. Maybe the rabbit ATG is finally working. Unfortunately, the reds are crashing and the whites are 2. It's been 3 1/2 months since the rabbit ATG. Lynn

[Ruth Cuadra]

Hi, Lynn.

It good to hear you've finally seen an upturn in your counts. You've really had a terrible time through this process, but it sounds like your hard work and patience may now be paying off. My fingers are crossed that the rest of your counts start to come up too.

Regards,
Ruth

[Lynn del]

Hi everyone:

Today my platelets were 4. How could they go from 23000 to 4000 in 2 days, they must have made a mistake. Whites 2,anc 800, red 7. My doctor wants me go for for a BMT. The rabbit ATG hasn't had time to work yet, right !!! Now I'm down to 5 mg. prednisone and have bad joint pains again and I'm very weak. I've had a headache now for 4 days. So I'm still in serum sickness! I was looking up immunosuppresents and I found Imuran not to have really bad side effects as the others. Has anyone taken Imuran and found it worked? This is really a long haul, and without marrowforum I don't know what I would have done, thanks for the support. Lynn

[Chirley]

Hi, just wanted to let you know what happened to me last time I went to day care.

I usually have my blood test the day before my day care visit because the nurses can't get blood out of my port. Last time the nurse did get blood from my port but it came out slowly and with lots of fiddling around. So this means I had blood taken 2 days in a row.

The first test showed Hb of 78 neuts of 0.5 and lymphs of 0.3 and platelets of 220 the second test (from my port) showed Hb of 73 neuts of 0.9 and lymphs of 0.5 and platelets of 5 ????. I've never had a low platelet count before. The nurse said that I had to have a platelet transfusion and called the doctor back to day care to see me. He said that because the platelet problem had developed so quickly that I had to have an immediate BMB and commence chemo as soon as possible. I asked for another blood test because I couldn't believe the results. This time they took the blood from my arm and the results were almost exactly the same as the test from the day before. It turns out that the blood from my port had small clots in it that had interfered with the results.

It's scary to think that I could have been treated on the results of a faulty test.

I know I don't have AA but the possibility of the same problem happening with your blood results is very real. I now know that if I think the results are out of the norm that I need to ask for them to be repeated.

Best of luck

Chirley

[Marlene]

Our doc will recheck counts if he gets something that doesn't make sense. I cannot believe they jumped to conclusions so quickly based on one blood draw.

We never rely on just one CBC, instead, we look at trends.

Marlene

[Neil Cuadra]

Good for you, Chirley.

This is an example of why it's important for patients to pay attention to their own counts. Sometimes you just have a feeling that the results aren't right because they are way out of line with previous tests. Some patients can even predict their red cell count by how they feel.

A phlebotomist or lab technician won't know what your counts are "supposed to be" so you have to be confident enough to speak up when you think something is wrong.

[Lynn del]

Hi everyone:
Yesterday my platelet count went down to 1, and my red cells were 7.0 on Monday and Tues. 6.2. I got rigors after the 2ned bag of platelets, they gave me demerol. Then they started the red cell transfusion and I kept getting rigors, 3 times. They kept giving me benadryl and demoral. I had a fever of 101.5 and a horrible headache. So I have to go again today for new red cells. THe nurse thought the blood was contaminated. I never had such a bad reaction, and never to red cells. The fever stopped last night but the headache is still there. I can't take the Prograf because of the side effects, so I asked about cellcept or Imuran. Has anyone taked these meds? I also asked about Procrit and the doctor said it probably won't work. No testing. I feel that I'm doing this alone and the doctor just wants me to have a BMT. It's only been 3 1/2 months since the ATG. I'm reducing the prednisone, I'm at 5 mg now and the serum sickness is coming back. Any help would be appreciated. Thanks, Lynn

[Lynn del]

Hi everyone:

I just talked to my doctor and he said my only option now is a BMT. He said the rabbit ATG isn't working and I'm going for too many blood products.I want to talk to another doctor and get another opinion. Can anyone give me the name and number of a doctor they trust. The problem is that I can't go far away because I need platelet transfusions every other day. I live in the New York area. I can go as far as 1 day away. Thanks, Lynn

[Hawaii Bill]

Hi Lynn,
The National Institutes of Health is in Bethesda, MD, and they offer clinical trials for patients with AA. The evaluation is free, and if you are selected, the treatment is free as well (as long as you follow their protocol).
You can get on a train and go there from NYC in just a few hours.
Here's a link:
http://patientrecruitment.nhlbi.nih....ticAnemia.aspx

The best of luck to you!

Bill

[JEZ]

Lynn,

I was on cyclosporine for 2 years with great results after ATG (remsission) but recently had increasing kidney toxicity so I weaned off of the cyclosporine in May/June and started generic Imuran (AZAT). I have only been on it a little over a month. I started it with my platelets at 148K and they dropped to 131K at my last lab. My WBC went from 7 to 5. But my doctor tells me that as long as they did not crash we are on the right course and will watch and see. Apparently the RBC would take 3 mos to gradually go down if they were going to. My hemoglobin did drop to 10 (from normal). My hope is that the counts stabilize high and do not continue to trend down... I feel a thousand times better than I have in months so it sure would be nice if the Imuran does the trick. For me, there are no side effects where as on the cyclosporine I did have some. I do not think that your situation is similar to mine however because so far you have not responded to the ATG... but I don't know. I sure hope you find your healthy place in all of this.

JEZ

[Marlene]

Lynn,

Anywhere you go your doctor should be able to set you up to get blood products if needed during your consult. Like Bill said, both NIH and Hopkins are doable regarding distance and both are served by Amtrak.

Marlene

[Lynn del]

Hi everyone:
Yesterday I had red cells, Tues platelets with rigors and fever. Today I woke up with huge blood blisters in my mouth and tongue and my gums are bleeding. I had the horse ATG 11 years ago and it worked in 3 weeks. It's been 3 1/2 months since the rabbit ATG and it's made me worse then I was before it. Is it too soon to have the the horse ATG? My platelets are 1 and the reds drop as soon as I get them, and the whites are not holding. Before the ATG I had to go once a month for red cells now every blood line is crashing. THey won't give my cyclosporine or Prograf again because they said that it would bring my counts down. NOw I'm really scared and don't know what to do, and I'm running out of time. Lynn

[Hopeful]

Lynn,

My heart goes out to you.

I agree that you should contact Neil Young at NIH *immediately* for a 2nd opinion.

You can email his nurse Olga at nunezo[at sign]nhlbi.nih.gov

Don't procrastinate. Do it now! Second opinion appointments are free there. Treatment is too - if you are part of their clinical trials.

There is no harm in sending that email now.

[Lynn del]

What was Olga's e-mail. I tryed to use it and it didn't work. Lynn

[Hopeful]

Lynn,

replace the [at sign] with @

His other nurse is Barbara:
weinsbar[at sign]nhlbi.nih.gov

I didn't want to type the whole email address to prevent them from getting spam'ed.

Good Luck!

[Hawaii Bill]

I agree with Hopeful. NIH seems to be within your reach. Get in touch with them asap. I hope they can arrange to see you right away. They will probably want a copy of your medical records (they wanted mine).
Please keep us posted!
Bill

[Lynn del]

I have an appt with a doctor from NYU next Wed. Sunday I were to ER because I have horrible pressure in my head. They did a CT-scan and there were no brain bleeds or swelling. I have a severe sinus infection and my right ear canal is completely blocked so I can't hear. I've been on antibiotics for 1 week and it's not helping. The pain is unbearable. I've also been taking guifensen and it's really not loosing it up. I've never had anything this bad before. Sun, red 9.6, wht 4, platelet 5, Tues, red 9.2, wht 5.2,anc 3100, platelets 1.
I called the NIH and my doctor has to call them. Thanks for all your concern. Lynn

[JEZ]

Originally Posted by Lynn del

I have an appt with a doctor from NYU next Wed. Sunday I were to ER because I have horrible pressure in my head. They did a CT-scan and there were no brain bleeds or swelling. I have a severe sinus infection and my right ear canal is completely blocked so I can't hear. I've been on antibiotics for 1 week and it's not helping. The pain is unbearable. I've also been taking guifensen and it's really not loosing it up. I've never had anything this bad before. Sun, red 9.6, wht 4, platelet 5, Tues, red 9.2, wht 5.2,anc 3100, platelets 1.
I called the NIH and my doctor has to call them. Thanks for all your concern. Lynn

My heart goes out to you, Lynn.... I hope you get the absolute best medical interventions that you can .... keep us posted.
JEZ

[Lynn del]

Hi everyone:

I went to the ER Sat. night because there was blood in my urine. The put me ICU and I had platelets and red blood. My plt were 11, after the plt they went to 3 then 5. Today there is alot of blood and I had an MRI on
Fri and they found a brain bleed on the right side top of head. It seems the more I go for platelets the lower the number goes. I have a bad cold and both my ears are clogged and head and stomach hurts. Lynn

[Margie]

Dear Lynn Del,

I can't advise you because I also have very low platelets and I don't know what to do either. I would like you to know though that you are in my thoughts & that I am pulling for you. Also I am praying for you.

Margie

[michelle_lapuz]

Hi Lynn:

hang in there, sounds like a bit of a rough patch but it shall pass.....i hope you feel better soon - my platelets are also chronically low - had the 'blood' behind the ear drum (took over a month to clear up), had the blood on the head (couldn't speak for 5-minutes) and all the other fun bloody things but thankfully at different times - you will get through it

Michelle

[Lynn del]

The dr from NYU is proposing Horse ATG and maybe rituxan, but it's not FDA approved for AA. I have to have a BMB on Monday, and another MRI. He thinks I might also have ITP, and the rituxan will bring the platelets up. Now my red cell are dropping fast also. The whites are holding. I guess the rabbit ATG isn't working. Is it too soon to have the horse ATG, it's been 4 months since the rabbit? We are all in this together and the support is great !!! Lynn

[Lynn del]

Hi,
The doctor wants to put me on cyclosporine, but want I've read about the side effects and skin cancer, lymphoma, and kidney failure is horrible. Has anyone gotten skin cancer or lymphome from cyclosporine? They tried to give it to me 11 years ago but my body wouldn't tolerate it. Any info would be helpful, thanks. Lynn

[JEZ]

Originally Posted by Lynn del

Hi,
The doctor wants to put me on cyclosporine, but want I've read about the side effects and skin cancer, lymphoma, and kidney failure is horrible. Has anyone gotten skin cancer or lymphome from cyclosporine? They tried to give it to me 11 years ago but my body wouldn't tolerate it. Any info would be helpful, thanks. Lynn

I understand your concern but, as my doctor said when I went on it, powerful drugs to control something as serious as bone marrow failure sometimes have powerful side effects. I personally felt it was worth the risk and had an excellent response over the two years I was able to take it. My counts went back to normal gradually. When my doctor noticed that it was starting to have an effect on my kidneys, she took my off and I am in the process of trying other drugs. My kidneys recovered when the drug was discontinued. I do not know if any of these immunosuppressent drugs will eventually cause cancer but I do believe they are significantly prolonging my life and allowing me quality of life. Each person has to weigh this in their own situation and life.

My best wishes are always with you, Lynn... I know you have been on a very tough journey.

JEZ

[Lynn del]

Hi everyone:
My platelets have been around 3 to 6, but Tues they went to 2 and Friday thet went to 19. Now Monday they went to 5 again. They are spiking and trying to work. I have been though so much and practically lived at the hospital for 5 months, I have such bad reactions to meds, so I'm afraid to take the cyclosporine because everything I have taken before brought my counts down. Does the cyclo bring your count down before they respond because I don't have much to work with? I had a BMB to see if I had ITP also because they wanted to give me Rituxan but I didn't. It's not FDA approved for AA.
My brain bleeds are stopping, one was a hemorage and that is why I was getting such pressure and pain in my head, but after the last MRI the pain got worse again for about a week. The report said that the bleeds were interfering with signals. I still get some pain from the large bleed.
Thanks, Lynn