Has anyone suffered like this????

[holdinghope]

Help!  Has anyone had this experience???  Background on husband - ITP, post-splenectomy, grade 2 state 4 Hep C, possible SLE, NEVER presents fever upon infection.  Had a couple infections last nine months, thought he was getting another cold 4 weeks ago, started feeling ill immediately went on antibiotics for precaution, starting feeling better but had a lot of joint pain in ankles and wrists, along with severe tingling and numbness.  Went to the Primary complaining of severe pain in joints, developed severe, large areas of purpura growing rapidly over 8 hour period, almost flowering over his calves and thighs.  He was admitted to the hospital, WBC was elevated, purpura started to blister and has now spread to his arms, still in a lot of pain.  They biopsied the purpura and said it was leukocytoplastic vasculitis, possibly caused by cryoblobulemia, but that the liver was not currently enlarged and the virus was not "active" at the present time.  Waiting to see the 2nd round of VL tests.  I can't believe how bad the vasculitis and purpura is and how quickly it has spread over his body.  Many spots have ruptured, very painful for him.  Currently kidneys are not involved.  Rheumatologist and GI doc aren't convinced it's from the Hep C.  We just found out the confirmation of Hep C due to mis-diagnosis a couple of years ago, thought to be false positive from SLE.  Has anyone had similar symptoms????  Docs won't treat with Prednisone or any other steroid until the biopsy the lymphatic system for possible lymphoma?  None of the doctors have any answers and just keep saying they don't know.  My husband is getting so depressed and frustrated and we can't seem to get a straight answer or even prognosis?  Any similar experiences?

[RHEBA324]

This is the 1st time I have found or heard of people struggling with what I have been going thru from the sounds of things my journey has just began & I have been suffering since august of 2008 being ran from DR to DR started with ruq abdominal pain that sent me to the ER I couldnt lie flat for the CT scan & after  3 tries they just took it w/me all sitting 1/2 up crunched over & then said it was limited due to me not cooperating Im overweight so they also called it limited due to that but they did pick up a lung nodule on the base of my right lung & said I should do a follow up in 6 months - the pain in my abdominal area went on for the next six weeks I was out of work suffering then it subsided & just kind of came & went I went thru all kinds of test's they just could never give me any answers as to why it was- as the months passed the next thing that happened was a neuropathy of sorts pain across the tops of my feet searing intense pain it was crippling & I had to go on a cane it was effecting me in everyway then came these little brown dots feckley looking dots next came a burning sensation after the burning came the lesions the purple spots all over both feet traveling up the calf area - i found it hard to wear shoes and would just cry at work - i thought it was a foot problem so i went to a podiatriest that had been treating me for plantar facitis I thought i had another foot problem he put me on a medryl dose pak of predisoane and it helped me so after many other combos of meds he put me on a low dose of predisone and indocine for swelling he tested me for lupus & rhuematoid arth - i had a out of range c4 serum & cold agglutin/cryoglobulin suspect in the lab report wich i had seen on my labs for the past 9 years i was always told it was nothing to worry about that it was comen to be a false positive - so the podietriest sends me to a rhuematoligst - he uped the predisone to 20 mg a day and after amonth treid to wean me off everytime i stopped the predisone everything would come back so he sent me to a hematoligst/oncologist he explained to me that people with cold aggluntinin/cryoglobulin in thier blood had a 5% chance of going on to develope cancer leukemeia /lymphoma said it was a small % not to worry but he would do me a favor & test me for it - it came back I had a large population of monoclononal B cells and a marginal positive for lyphoplasmatic lymphoma but the viability of the blood was bad do to the cryo/cold agg so he order a pet/ct scan & it came back no active cancer so then he called it treated low grade lyphoma treated because I had been taking predisone - & he sent me to another rhuematologist to get me off the predisone - this one had the consult with me & sent me to nuerologist who is doing a nerve conduction study this week she said its oncologist that needs to treat me so thats back where I started none of them no how or what to treat me with it so now ive been diagnosed - marginal lymphoplasmatic lymphoma - treated low grade lyphoma - cryoglobulemia - vasculitis - mediastinal lymphadenopathy and arthropathy - everytime i see him he changes the diagnosis ive seen 7 dr's none of them treating me or know how to get me off the predisone what confuses me is mayo clinic has a web site and they say they specialize in treating cryo and it says its treated with 6 months of predisone followed by 6 months of low dose kemo im so confused i dont even know what i have on top of all this my father was just diagnosed terminal with cancer they are not treating him becaus it has spread all over - i dont even know what to do next or is it cryo or cancer or what ? each dr says they dont treat it - the pain in my abdominal area is back and i had such intese pressure i felt something burst inside im still suffering with my side -

[holdinghope]

Update on my husband....still in the hospital, going on 17 days.  They are now treating the vasculitis with Immuran.  They started him on 50 mg, then dropped to 25mg, now back up to 50mg.  His WBC count is 16.5, but his Eosinophils are also high, indicating immune system response.  The really odd thing is his platelets are actually climbing daily, which with ITP, is unheard of.  The doctors, I believe, are still baffled.  I have sat down and gone over his chart, I check his levels daily and the doctors are now asking me what I our daily goals are.  I have elevated myself as his healthcare surrogate and demand the response and the respect that I have done my research and am very involved in his care.  He is still in an enormous amount of pain from the vasculitis and purpura that has developed in the blisters, that now look like chemical burns.  I'm going to request the hepatologist run the IGF-1 test and see if HGH will help.  He does not sleep and doesn't eat right now.  They finally confirmed he has HEP-C, HCV PCR is 5,960,000 IU/ML.  

[merryBe]

ITP, idiopathic thrombocytopenic purpura, also known as immune thrombocytopenic purpura, is classified as an autoimmune disease. In an autoimmune disease the body mounts an attack toward one or more otherwise normal organ systems. In ITP, platelets are the target. They are marked as foreign by the immune system and eliminated in the spleen, or sometimes the liver.

since your husband has no spleen this is complicating his treatment. the retuxin is not the only way to boost blood, and if he is getting neuropathy why not try a different drug? Also, growth hormone can boost blood and is no more expensive than Procit, and has fewer side effects. It will also greatly improve his sleep and 4th stage (repair stage) sleep. I'd get him on this and Ambien for the rest is crucial to keep complications in line. HGH boosts your immune system, so helps you fight the disease. Your Pituitary makes HGH. Ask for a IGF-1 blood test. If he is low on HGH, he can't sleep, or heal, or make new tissue or blood. Normal range on this test is age dependant. Around 160 to 220. Mine was 40 (or 20 percent of normal. So now I inject it each night and am doing MUCH better. I would not want to even THINK of going on tx next week, if I didn't have this drug to help also. (plus HCV sufferers are often low on pituitary function. (docs don't like to test cause treatment is expensive. INSIST, as this is crucial to all healing and tissue repair, and blood replication, etc etc.
GET PUSHY before you lose him!!!!!


FDA NEWS: FDA Warns of Safety Concern Regarding Rituxan in New Patient Population


FOR IMMEDIATE RELEASE
P06-206
December 18, 2006  
The Food and Drug Administration (FDA) is alerting health care professionals and patients treated with Rituxan (rituximab) to reports of an emerging risk of a serious side effect in patients receiving or who have used Rituxan. FDA recently learned that two patients who were treated with Rituxan for systemic lupus erythematosus (SLE) developed progressive multifocal leukoencephalopathy (PML), a fatal viral infection of the central nervous system. This side effect has been reported in patients as late as 12 months after their last dose of Rituxan.
SLE is not an approved indication for Rituxan. Rituxan is approved only for the treatment of patients with non-Hodgkin's lymphoma and patients with rheumatoid arthritis whose disease no longer responds to other common treatments.
"Rituxan is used in both approved and off-label settings, and therefore it is very important for prescribers as well as patients to be aware of these new reports of the risk of PML," said Dr. Steven Galson, director of FDA's Center for Drug Evaluation and Research. "Patients who are being treated or have been treated with Rituxan who experience any major changes in vision, balance, or coordination, or who experience confusion, should promptly call their doctor."
Rituxan, which has been marketed since 1997, acts on the body's immune system by decreasing certain types of white blood cells. This makes the drug effective in treating lymphoma and rheumatoid arthritis, but it also increases the body's susceptibility to infection. The Rituxan label was updated in February 2006 to include postmarketing reports of cases of serious viral illnesses, including PML, in patients with lymphoma who received Rituxan. There have been 23 confirmed cases of PML in patients with lymphoid malignancies either during or after completion of treatment with Rituxan. The majority of these patients also had received other drugs known to affect the immune system.
Additionally, cases of PML have occurred in patients who have not received Rituxan. Most reports have been in patients with a compromised immune system, either due to medical conditions (lymphoma or blood cancers, HIV infection and congenital immunodeficiency syndromes) or medical treatments (cancer chemotherapy and immunosuppressive medications in organ transplant recipients). There also have been literature reports of PML in patients with SLE who did not receive Rituxan, but had received other immunosuppressive drugs. Currently FDA is working with Genentech, the drug's sponsor, to add this recent information on PML to the drug label.
Health care professionals should report any serious adverse events possibly associated with the use of Rituxan to FDA's MedWatch Adverse Event Reporting program online [at www.fda.gov/MedWatch/report.htm], by phone [1-800-FDA-1088], or by returning the postage-paid FDA form 3500 [which may be downloaded from www.fda.gov/MedWatch/getforms.htm] by mail [to MedWatch, 5600 Fishers Lane, Rockville, MD 20852-9787] or fax [1-800-FDA-0178].
Rituxan is manufactured by Genentech, Inc. of South San Francisco, Calif.  

[giddyup]

Could you tell me what ITP is

[giddyup]

I have cryo which causes pain in mostly my knees, hips and ankles. I dont have discoloration, but I have to take narcotic pain meds daily.It sounds like cryo to me of what I know as a patient.I've been told the retuxin can work for some relief.Maybe ask the doc for a second round. Has your husband had tx for hep c?. Sorry .This cryo is an extremely painful disease and it comes from hep c. You should know that the blood test for cryo is sensitive and ihas to be done carefully sometimes for many times to get a pos result.Ridding hep c is suposed to rid Cryo - giddy

[SJL]

After our conversation I attended a "celebration of life", for one of my Dads caregivers. Lorraine was truly an angel for our family in our time of need, and she became part of our family. Only 37 yr's old and had suffered for 20 yrs. with kidney problems. She had multiple transplants, receiving dialysis almost daily, but you never saw her without a smile on her face and I never once heard her complain. She kept my father laughing as well as giving him the best personal care that anyone could ever ask for. I did retire to take care of my parents, but at times I needed a break so Lorraine worked right along with me, allowing me to do the necessary everyday things which needed to be done. I admire you for doing all the things you are doing, with Don, your children and your business. But please leave sometime for Lee. It gets totally overwhelming. My father was a big man(250 lbs.), and none of the caregivers could lift him, so I was always their to do the lifting. I learned this through a stroke rehap and it really came in handy.

I have not had the time to do any research, but I will look into tomorrow. I hope you had a good a night as possible and remember their is tomorrow.

I should have answered this on your personal e-mail & I apologize to the forum. Like I told you, sometimes my mind doesn't work the way I intended .

I will follow up tomorrow on your personal e-mail. I sure do not what to make any enemies on this forum, because everyone has been so helpful to me.

Thinking of you and your family this morning, already 3:32 a.m. Another sleepless night.

SJL

[holdinghope]

I'll give you a call tomorrow.  It's almost 12:30 am.  My husband has been in the hospital for 12 days.  We took him to the doctor a couple of weeks ago because he was feeling so bad and we thought it was an infection.  The vasculitis appeared and spread all over his legs while we were in the emergency room.  I thought it was Henoch Schonlein Purpura because he had gotten over a respitory infection just recently, but it got so much worse.  I saw him tonight.  The back of his calf looks like nothing I've ever seen.  I'm heading over the hospital in the morning to track down the doctor.  I'll give you a call after 10 am.  I'm sure you can give me a list of questions to ask the doctors.  You've been a wonderful help and this forum is great!  I'll be sure to post the outcome and his treatment progress in hopes that it can help someone else going through the same thing.
L

[SJL]

Maybe they will let this go through.
Home-386-424-0828
Cell-386-316-8879
Call anytime. I am up until at least 1 A.M., I'm one of those non-sleepers.

[SJL]

I have been working on my e-mail settings all night & of course spoke to someone in China---His biopsy should give you the results of Hep C, if that is what it is. Do you remember the places on his liver that they biopsied before? If so, have them try differently. Have you considered him going to the hospital,like right now? Maybe they might give him something more for relief, and this would make you feel better also.He could possibly be dehydrated. If you do decide to go, call 911 & you will get seen much faster.( I worked at a hospital prior to Hep C.)You are going to be going there tomorrow anyhow.If he is blistering they could dress the blisters up probably.The poor guy, I can't imagine what he is going through. At least at the hospital they could knock him out with meds, so he wouldn't have to suffer so. I wish I had the knowledge to help you more, I feel your pain. Stay strong & remember that God will see you both through this. I will say a special prayer, right after I send this. Please consider the evac to the hospital. Do you have anyone else there with you?
Keep writing and I will continue researching. I can go through the hospital's library tomorrow and ask the librarian for help.
SJL

Bill, just contact me through medhelp. You are going to love Dr. Johnson & his whole office staff. He is a little hard of hearing, so I look him square in the eyes and sit close. Let Sue or Dana know that we communicate!
Good Luck-take a list of your questions & he will go right through them with you.
SJL

[holdinghope]

Ok, another round of docs!  Just got off the phone with the patient advocate.  I pressed the rhuematologist for a hepatologist consult and they ordered one through Lifelink?  They apparently do all of the transplants at TGH.  The "team" of doctors can't figure his disease out.  One says he has Hep C, another says he doesn't.  They are doing a third liver biopsy tomorrow.  In the meantime, the vasculitis is raging across his body.  The purpura is covering his lower legs and now his arms and they are blistering.  Now his fingers are hurting him.  He is absolutely miserable.  I don't know what else to do for him, I feel so helpless!

[SJL]

I am sorry. I don't know what's up with my e-mail. Some come through, some don't. Try again, ***@****

[Bill1950]

I tried to e-mail you also and had no luck.  I have an appointment with your Dr. J next week.  He sounds great.
Bill

[SJL]

we will figure this out!
SJL

[SJL]

Try this Sandra J. Layne is at yaboo dot ,please come
SJL

[holdinghope]

I tried to email you, but it bounced back.  My email is ***@****.  Just got off the phone with the doctor, again, no one knows anything!

[Myown]

Did you husband recently get the Hep A vaccine? I just read this article and maybe you would want to run it by your husbands doctors. This is a rare occurance according to the article, but who knows if others that have LV and doctors maybe didn't make the connection of the hep "A" vaccine?

http://www.newsrx.com/newsletters/Hepatitis-Weekly/1996-03-18/031896764925169HW.html
                                    
"What is perhaps the first reported case of leukocytoplastic vasculitis associated with hepatitis A vaccination has been reported in France."
The case was presented by researcher Firouze Bani-Sadr and colleagues from Rouen, France's Hopital Charles Nicolle and published in the March 1996 issue of Clinical Infectious Diseases ("Vasculitis Related to Hepatitis A Vaccination," March 1996;22:596).

"A previously healthy 24-year-old man received hepatitis A vaccine (HAVRIX 1440 ELISA units/mL; SmithKline Beecham, Rixensaart, Belgium) for the first time and developed fever (38.5 degrees centigrade), arthralgia, and a petechial purpuric rash on the lower extremities"...
Source: Hepatitis Weekly (1996-03-18)

[SJL]

Are you seeing a Hepatologist? If not,it's a must.Shands Hospital is at the University of Florida in Gainesville. It is on the same level as the Mayo Clinic. My Hepatologist in Lakeland, Dr. James Johnson referred me to them & set up all appts., after I treated twice with him and I am still carrying the disease, along with the Cryo and Neuropathy. You would love him and his whole staff. They are the most sincere, caring medical professionals I have ever been associated with.If you would like to make an appt., ask for Helen, Tara or Sue. Tell them that I referred you and I know they will see you asap.

I do have purpura, but no blistering. I have been off treatment for 13 mths. Of course you can reach me sjl at --hoo dot c o m.Your VL will fluctuate and can be low, but I don't understand the stage 4? I am a 1B, stage 3, grade 4., and my liver is not enlarged. I am sorry the Rituxin did not work. We are using this drug to eliminate my B cells where all the cryo usually is. If I can be of any further help, e-mail. I would love to give you all the info I have.

I hope you all have a good day,
SJL

[holdinghope]

We are in Florida!  My husband is at TGH!  The doctors think it's cryoglobulemia, and he's already had the liver biopsy, level 2 stage 4 for the diagnosis, but they keep saying they don't think the liver is involved at this point because the VL is low and the liver is not enlarged.  He had his spleen removed 3 years ago because of the ITP so he is very susceptible to infection.  He was on Rituxin for the ITP and did not respond at all.  He has had difficulty respond to any treatment for ITP and most infections that he gets.  May I contact you offline for the information on the doctors?  We are only about 20 minutes from Lakeland, and I've never heard of Shands University?  Where is it?  Do you have the bouts of purpura and blistering and pain?  You have been so much help, the doctors can't answer any questions and they've convinced my husband he has cancer.  

[holdinghope]

We are in Florida!  My husband is at TGH!  The doctors think it's cryoglobulemia, and he's already had the liver biopsy, level 2 stage 4 for the diagnosis, but they keep saying they don't think the liver is involved at this point because the VL is low and the liver is not enlarged.  He had his spleen removed 3 years ago because of the ITP so he is very susceptible to infection.  He was on Rituxin for the ITP and did not respond at all.  He has had difficulty respond to any treatment for ITP and most infections that he gets.  May I contact you offline for the information on the doctors?  We are only about 20 minutes from Lakeland, and I've never heard of Shands University?  Where is it?  Do you have the bouts of purpura and blistering and pain?  You have been so much help, the doctors can't answer any questions and they've convinced my husband he has cancer.  

[SJL]

The symptoms sound like cryoglobulemia. I am diagnosed with this and have ben told that it is a tag-a-long disease to the Hep C. It is very rare that anyone gets this on it's own. I hope that you are seeing a Hepatologist? Has he had a biopsy of his liver? If not, this is a must! I am not familiar with the post- spleenectomy? I have treated on all 3 interferons and have never cleared, so I am starting Rituxin therapy in Oct. This will eliminate my B cells which hold the cryo.
I am going to Shands University for treatment and I also have a Hepatologist in Lakeland, FL. If I can be of any more assistance or you have further questions, please feel free to comment. I am sure that you will hear from others on the forum also. Remember-This is  only my opinion!
SJL