This past March, after we announced that the research paper “Therapeutic Plasma Exchange for the Treatment of Systemic Sclerosis: A Comprehensive Review and Analysis” had been published in the Journal of Scleroderma and Related Disorders, we were asked by a number of patients about how to approach their doctors to talk about this potential treatment approach. After discussions with a number of physicians about how best to initiate these discussions, we have written several articles and produced a new YouTube video on therapeutic plasma exchange that should help to facilitate discussions between doctors and interested patients about TPE as a potential treatment option.
IMPORTANT: Please note that the Scleroderma Education Project does not endorse or recommend ANY specific treatment option. Our role is only to provide information that can be used to facilitate and support educated discussions between patients and clinicians.
Here is a link to a new document titled “Talking to Your Doctor About Therapeutic Plasma Exchange”: SclerodermaInfo.org/pdf/TPE-Talking.pdf.
Key points from this document:
- Clinicians, even scleroderma experts, are not likely to be familiar with the research literature on TPE as a treatment for systemic scleroderma. Unfortunately, many clinicians have a number of incorrect beliefs about TPE that will make these discussions challenging in many cases.
- The first step in initiating these discussions will be for you (the patient) to become as knowledgeable as possible about TPE. We have a number of articles that can help with this, including a new YouTube video presentation on TPE: https://youtu.be/iWT0oW8FRdE. We would encourage you to start your educational journey about TPE by watching this video and then read the other articles mentioned in the “Talking to your doctor…” article. Anything you don’t understand, please ask us through the comment form on this website or by sending an email to firstname.lastname@example.org.
- Your initial goal in talking with your doctor will only be to get her/him to read the research on TPE so you can then have an informed discussion to see if this is a treatment option that makes sense given your unique individual situation.
How do you know if you are “ready” to start this discussion with your doctor? Suppose you start the discussion with your doctor (before s/he reads the review paper) and you get comments such as these (all of these are actual comments from doctors when TPE has been brought up by interested patients):
- I’ve never heard of the Journal of Scleroderma and Related Disorders. It’s probably not a reputable journal. (While JSRD is a relatively new journal, if you look at the Editorial Board for this journal, it includes many top scleroderma researchers: SclerodermaInfo.org/pdf/JSRD-Editorial-Board.pdf.
- TPE is too dangerous.
- TPE is way too expensive.
- You can’t do long-term TPE with having a port surgically installed and these have problems with infections.
(Probably the best way to deal with the last three examples above is to tell the doctor that these topics are all dealt with in the review paper and that you are happy to discuss these issues at a follow-up visit focused on discussing TPE.)
Note: If any of you are seeing a scleroderma specialist and decide to initiate discussions about TPE in the next couple of weeks, please ask your doctor if s/he will be attending the Scleroderma Foundation national patient education conference in Philadelphia at the end of this month. If so, feel free to mention that the corresponding author of the review paper (Ed Harris) will be at that conference also and will be happy to meet with them if they have any questions about TPE. Ed’s contact information is at the end of the “Talking to Your Doctor…” article.
If you go to the Scleroderma Foundation website at Scleroderma.org, they have a list of scleroderma centers around the country. Also, if you post a query on any of the major Facebook scleroderma focused patient support groups, you should be able to get recommendations for specific specialists.
I have CREST, limited scleroderma and have recently moved to Tucson, AZ. My previous rheumatologist was at the U of MN and I am looking for a rheumatologist who specializes in scleroderma in the Tucson or Phoenix area. Any information or recommendations are appreciated.
As I noted to another person who was told that they wouldn’t read the review because they already knew that it doesn’t work, think of the time these clinicians save since they don’t have to do any continuing education or reading research since they already know everything!
Many patients have been on TPE for SSc for years. The longest report in the research literature was 22 years. In almost every study, the vast majority of patients showed clear benefit. I agree that it is considered experimental, but so is pretty much everything used in treating SSc.
This will take time…
I hady 3 month follow-up withy Rheumatologist and I printed out the referenced matierial for my doctor to review. I was really disappointed because they wouldn’t take the time to just read it. Their minds were made up already that it is experimental, insurance doesn’t cover it and there has not been any benefits to patients who have tried it. They said that the patients who have tried TPE have done so for anywhere from 2 months to 6 months.
I see ARNP who is overseen by a group of Rheumatologist s at the Mayo. She brought the papers back and discussed it with my Rheumatologist and then came back and gave me my papers back with my summary. I was disappointed they didn’t at least keep them to look at or even thrown them away after I left.