A Hematologist At UCLA Just Diagnosed Me With Systemic Inflammation

Posted on Tue, 4 Dec 2018

Question: A hematologist at UCLA just diagnosed me with systemic inflammation and four autoimmune diseases: severe lupus, CNS vasculitis, hepatitis, and Sjögren’s syndrome. This is based on extensive blood tests, lumbar puncture, CTAs, MRIs and IR Angiogram. The condition has caused 10 lacunar strokes and 50 TIAs over the past year. I have a one to three strokes or mini-strokes every month and have had TPA eight times. She prescribed an IV infusion of low-dose Cytoxan once a month for six months. She said this will put everything in remission. She said pills would not work for me. Do you agree with the treatment? Are there any alternatives in my case? If I refuse the treatment what might be the consequences? She said Cytoxan will lower my overactive immune system. Will is also kill healthy cells and cause other health problems? Please advise.

Answered by Dr. Olgeta Xhufka (1 hour later)

Brief Answer:
You will benefit from its usage.

Detailed Answer:
Hello dear, welcome to Ask a doctor service.
I read your query and here is my advice.
I am sorry to hear this from you.

I agree with the treatment.
This is a life threatening situations with multiple strokes, caused by multiple autoimmune disease and doesn't let too much of any other alternative.
If you refuse the treatment you will continue to have strokes and ministrokes and this may put your life at risk. The consequences depend on the place of the stroke and this may cause different symptoms like impaired speaking, thinking, walking or even death.
Cytoxan is a chemotherapeutic drug. Of course it can damage other cells in your body and lower your immune system.
It can suppress bone marrow, can cause nausea vomiting and diarrhoea, can cause hair loss, can also cause bruising and bleeding, haemorrhagic cystitis etc.
The benefits from its usage are greater than the side effects it will have.
Hope I have answered the question.
Let me know if I can assist you further.

Above answer was peer-reviewed by : Dr. Remy Koshy

Follow up: Dr. Olgeta Xhufka (8 hours later)

When the treatment starts, how long before my immune system starts to get suppressed and the strokes stop and all the blood tests for autoimmune diseases start to become normal again?

Once the treatment is done, how long, if ever, will it take for the damage done by Cytoxan to heal, such as cystitis and bone marrow and hair loss?

Answered by Dr. Olgeta Xhufka (33 minutes later)

Brief Answer:
It will give its effects in 4-8 weeks.

Detailed Answer:
Hello again dear and thank you for asking again.

The Cytoxan needs 4-8 weeks to give its effects in suppressing your immune system and stop stroke reoccurrence.

The blood will be normal every 21 days after taking Cytoxan and it should be monitored with frequent blood tests.

The bladder mucosa may need some months to regenerate (up to 10 months) and you should keep in mind to drink 8-10 glasses of water a day or more to help protect it.

Your hair will start to grow soon after treatment and will be noticeable in two months.

Let me know if I can assist you further.

Above answer was peer-reviewed by : Dr. Arnab Banerjee

Follow up: Dr. Olgeta Xhufka (1 hour later)

Thanks. Why would I need six months of Cytoxan? Could it be stopped sooner? If my bladder mucosa gets injured, what can I do about it during treatment? Is there any way to protect it? Why would the bladder get injured?

Answered by Dr. Olgeta Xhufka (28 minutes later)

Brief Answer:
You may need 6 months therapy as per your complicated situation.

Detailed Answer:
Hello again dear...
Thank you for asking again.

The Cytoxan for the autoimmune disease can be used from 3-6 months.
Knowing your situation with several autoimmune diseases you mentioned above, it is more reasonable to give it for 6 months In order to have good results.

I don't think it can be stopped sooner.

Bladder mucosa bleeding can occur only in 10-20 %of cases.
You should get plenty of fluids and water to prevent it.

The treating doctor can advice saline intravenous solutions and diuretic, can insert saline water irrigations in the bladder, advice antibiotics to prevent infection. The drug may be stopped in this case.

Let me know if I can assist you further.

Above answer was peer-reviewed by : Dr. Arnab Banerjee

Follow up: Dr. Olgeta Xhufka (18 minutes later)

Thanks. You have been most helpful.

Answered by Dr. Olgeta Xhufka (7 minutes later)

Brief Answer:
Get well soon.

Detailed Answer:

Most welcome any time.
Wishing you good health.

Best regards.

Above answer was peer-reviewed by : Dr. Arnab Banerjee

Follow up: Dr. Olgeta Xhufka (11 hours later)

Have you heard of low dose naltrexone for autoimmune diseases? Another doctor just told me about it.

Answered by Dr. Olgeta Xhufka (1 hour later)

Brief Answer:
I don't recommend it.

Detailed Answer:
Hello again. I have heard of usage of naltraxone in autoimmune diseases such crohn but there are not enough studies and facts for its effectiveness and long term consequences.
It's usage in autoimmune disease is not yet approved by the FDA.
I don't recommend it in your case.

Hope you are getting well soon.
Best regards

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Above answer was peer-reviewed by : Dr. Nagamani Ng