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Discussion Starter · #1 ·
My husband was searching about the John Hopkins University Hospital site one night, and came across this piece on chemotherapy as a treatment for lupus. The link to the site is below, and the information is about 2/3 of the way down the page, under the heading chemotherapy.

http://www.hopkins-arthritis.org/arthritis-info/lupus/

To sum it up shortly, some oncologists were using a short 4 day burst of chemotherapy for aplastic anemia with good results, and wondered if it would work for lupus.

The piece goes on to state that some research was done, and the results were promising. What I can't find is the actual research paper itself, what kind of chemo are they talking about, ect. ect. :scratch:

I told my husband that if this was such a great soloution, a lot more people would know about it and be standing in line to try. He's ready to fly me out there and give it go right now - argh :eek:hno: - but he means well.

Has anyone else tried this therapy, or know anything further about it? If it really is out there, I know this is the group that can tell me. :bigsmile:
 

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Hi tbunny,


That is a very interesting article. There are a number of members here on a form of chemotherapy and it's not just for those that are very ill. These are a few of the drugs currently used:
  • methotrexate (Rheumatrex)
  • azathioprine (Imuran)
  • cyclophosphamide (Cytoxan)
  • leflunomide (Arava)
  • mycophenolate mofetil (CellCept)
I am on Cellcept for connective tissue pain which has helped immensely. My rheumatologist prefers it to using pred as it has better results with fewer side effects. I am on a very low dose compared to a cancer or organ transplant patient but other members here have been admitted for higher does infusions like Rituxan.

Hope that helps.

Hugz, :hug:

Pam xxx
 

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Discussion Starter · #3 ·
Thanks Pam! :bunny:

I myself have been on both Imuran and Cellcept (which are immunosuppresants, not a true chemotherapy) and now am taking metho.

The article led me to beleive that these patients were given high dose chemo treatments inpatient, such as a cancer patient might receive. Am I just reading this wrong, or did you get a different impression? :lens:
 

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Hi Tracey

I couldnt find any research papers either. I did come across this additional article though. Im not sure when it was written but there is a copyright tag at the very bottom with 2003 on it. The basic principle is high dose chemo to totally wipe out the immune system (like cancer patients) and about 50% of people reported that when their 'new' immune system kicked they were Lupus free.

http://www.wchstv.com/newsroom/healthyforlife/2049.shtml

It also says for more information contact:

Philip Seaman
The Johns Hopkins Lupus Center
1830 East Monument Street Suite 7500
Baltimore, MD 21287
(410) 614-1573
[email protected]

Why not email them and see what they have to say? It would be interesting to find out if there have been any clinical trials.

There was another article on the same site about using similar treatment to treat scleroderma

http://www.wchstv.com/newsroom/healthyforlife/2535.shtml

Again there are contact details at the end of it.

I laughed at your husband wanting to fly you out right now! I can understand why though :hugbetter:

Luv n stuff
Joan:rose:
 

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Hi Tracy,

I read it as you did, although Michelle Petri doesn't say which form of chemotherapy they are talking about.

There is a risk of overwhelming infection I guess, but as they mention it should only be for around 14 days but it would be a real risk not to be taken lightly as many Lupus patients can die from overwhelming septicemia so I imagine this would all happen in a well controlled hospital setting.

She is saying that 40% go into remission, that's pretty impressive with those remissions lasting up to 5 years! However read the fineprint and there was an example of a patient that took 18 months after the treatment to achieve remission, so it didn't happen overnight.

I wonder if these patients were still on other meds during that time and the chemo was 'added' one would assume it was? It would be helpful to know that.

Another 30% had significant improvement. 25% had no change and she doesn't mention the other 5%.

I will see if we can find the actual study if it was published.

love
Lily
 

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Hi,

Apparently it was 50mg of Cyclo per kilogram that was used and it was published in 1998.

http://www.ncbi.nlm.nih.gov/pubmed/9867758

http://www.ima.org.il/imaj/ar02jan-20.pdf (This article contains some other regimes used by medicos around the world)

Michelle Petri reported the Johns
Hopkins experience with immunoabla-
tive high dose cyclophosphamide for
refractory SLE [2]. The treatment proto-
col was based on 4 consecutive days of
50 mg/kg/day cyclophosphamide. Of the
14 patients included in the study, 9 had
renal disease, 3 had severe neuro-
psychiatric disease and 2 had refractory
cutaneous lesions. Of the nine patients
with renal involvement, four had com-
plete remission, three showed a partial
response and two did not respond to the
therapy. One patient with ataxia and
another with pyoderma gangrenosum
responded completely. One patient with
encephalopathy had a partial response,
but he developed membranous nephri-
tis. The data indicate that some patients
with refractory SLE may achieve partial
or complete remission following high
dose cyclophosphamide.

love
Lily
 

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Discussion Starter · #7 ·
:thanx: Many, many thanks Joan and Lily, for the time and effort you both put into being mods. It is so appreciated!

Good sleuthing, finding what information you did. It seems that this line of research just died off, and no one followed up. One would think with remission rates that high, and continued remissions that long, that more would be looking into it.:shrug:

Personally, I would jump at the chance to spend two weeks in a plastic bubble, do the chemo, lose the hair, get sick, all of it, for a chance at sustained remission.

Since becoming symptomatic in Jan 2003, my longest "remission" has been 15 days. I don't remember what it is like not to be in pain, to have energy, to be able to think clearly. I am getting a few good days a week with increased metho injections, so guess I shouldn't complain, but I still do! :wink2:

My husbands' new promotion will have him in Philadelphia a large amount of the time, and he will be getting a corporate apartment there. I might just have to make an appt. with Dr. Peitri and find out what happened with this!
 

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It's certainly worth speaking with her Tracy :hugbetter: she is a leader in the field, she may even have something else up her sleeve!

love
Lily
 

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It kinda made me smile when I read this. I've had mtx, cellcept, and most recently aza, and all of them have suppressed my bone marrow as an unfortunate side effect. The cellcept was by far the worst culprit (after working brilliantly for a year), and to make me feel better my consultant said that some people go into remission after their bone marrow is suppressed so much. I suppose this is what he was referring to - good to know he wasn't making it up :) Sadly it didn't work for me - I get a dose of rituximab next week, heigh-ho...
 

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I actually sent a email to them. Sent it out thursday night and got an answer back friday morning which btw was July 4th, let me tell you that was a huge shocker, a doctor in his office on a holiday.


They gave me some information and a brief discription on how it worked. Told me to have my doctor contact them, gave me a number to do so. So July 29th when I see my rhuemy I will give him the email and let me know what he thinks.


Right now I am on the rituxan infusions, and metho shots once a week. The first infusion went well, no side effects, my doctor was please. I was pleased !!! It took 8 hours for the first infusion was only suppose to be 6. Second infusion was June 24th, this time my blood pressure went up some, but hey I have low blood pressure to begin with so getting into a normal range excites my doctor. It took 6 hours when it was suppose to be only 4hours. But since the second infusion I have been battling a queasy tummy, almost to the point I feel like I am having morning sickness, It kinda hits me in waves. And trust me I am not pregnant.


So now I wait.....Did I mention I hate waiting. Well I do, I am lousey at it.:lol:
 

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Good for you! How amazing to get a response so quick and on such a major holiday as well!

It would be very interesting to hear what your Rheumy thinks of the treatment. Do let us know and your job now is to find something to do to make the waiting easier. ;)

Im sorry you are feeling so sick with the Rituxan. I hope it passes soon for you :hugbetter:

Luv n stuff
Joan:rose:
 

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When I was recently diagnosed with Lupus (4/2008) one of the treatments discussed was using a short-term Chemo type program. They ended up not using that because I responded so well to the other drugs, but it was discussed. I'm sorry I can't be more specific but this was discussed with my husband since I was in a drug-induced sleep at the time and don't remember the 1st 7 days of my 11 day hospital stay.
Sonya in KS
 
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