nomadic lifestyle and Rheumatoid arthritis

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Violet Green
New Member

Date Joined Jun 2008
Total Posts : 3
   Posted 6/8/2008 9:17 AM (GMT -7)   
Hi everyone,
I'm on Methotrexate for RA, and was on Infliximab until recently, but now it's not working for me any more. With my partner we want to live a fairly wandering lifestyle, so I'd like to choose a drug that does not require too frequent visits to the doctor, if possible.
I know Enbrel has to be kept in a fridge, but if I could get around this difficulty (for example, collecting it from a pharmacy on injection day only), how often do you see your doctor on Enbrel, for check-ups?
I'm living in France where the public health system is good. In the hospital they are proposing that I go on Rituximab (Mabthera), for free, either as part of a research "protocol" conducted by the laboratory Roche, or even outside of this protocol. If I'm not in the protocol group I won't see the same doctor every time. If I'm in the protocol group, I see the same doctor every time, and he seems to be a good doctor. Whether I'm in the protocol group or not, I won't have to pay, either for the drug or for consultations with a hospital doctor.
What I haven't been able to find out is the frequency of check-ups if not in the protocol group.
Are any of you taking Rituximab, and could you please tell me how often you have to "report back" to your doctor, between infusions?
Thank you for any answers.

Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 6/8/2008 1:44 PM (GMT -7)   
Here in the U.S, it is not common to get your Enbrel on the day of injection..most doctors use mail order pharmacies that deliver in bulk.  As far as going in for check ups..even with the Methotrexate you should be getting labs done at the very least every two months, the same for the Enbrel.
Sorry I don't know anything about the other meds you mentioned.  If I were you, I would want to get checked out at least every couple of months if you are on the Enbrel/Methotrexate combo..even without the Enbrel.
I take both and I have labs done every 6 weeks.

Violet Green
New Member

Date Joined Jun 2008
Total Posts : 3
   Posted 6/8/2008 2:38 PM (GMT -7)   

Thank you very much for your answers!

As regards the lab tests, the system here usually is:

You can get them done anywhere in France, and fax or mail them to your hospital, where a doctor looks at them and calls you if anything's wrong.

When I was just on Methotrexate, this was the system: lab every 2 months, results faxed to doctor; I saw the doctor herself only every 6 months.

On Metho + infliximab, saw a doctor (a different one each time, at the public hospital) and had lab tests done every 2 months.



Violet Green
New Member

Date Joined Jun 2008
Total Posts : 3
   Posted 7/28/2008 3:50 AM (GMT -7)   

Dear Debbie Lou,

Yes, Mabthera = Rituximab.

Infliximab is another drug I've had before; it's also called Remicade.

I had my first two infusions of Rituximab this month (July), because Remicade had stopped working for me. Apparently that tends to happen after a few years. I decided not to be in the Protocol group after all, because I could get the drug without being in the protocol group, and in the end I managed to find out that there was a big difference in the number of visits to the hospital, if you're in the protocol group or not.

The aim of this research is to see if two infusions of Mabthera 15 days apart are necessary in treatment sessions after the first two infusions, or if just one infusion would be sufficient each time (after the first six months). So everybody in the resaerch group gets two infusions first; then, six months later, half of them get one infusion and the other half, two. But Roche laboratories make you come in very regularly for check-ups for 2 years. I didn't want that, I was looking for as free a lifestyle as possible with this disease, and I had told the doctor that. But he withheld info from me as to the difference between being in this group or not. He was very angry when I told him that in the end I wouldn't be in the group; he said I'd wasted his time during the initial screening, etc. So I replied that I'd put my questions to him very clearly from the start, that his answers hadn't been clear to me (in fact to put it bluntly I believe he lied), and that the screening and other procedures had taken up my time, too. And do you know what he replied? He said: "Mais vous, vous ĂȘtes une malade" = "But you're a sick person," - as if it were only doctors' time that was valuable.

How did I find out that I'd really only have to see a doctor every 6 months or so?  - I wrote an e-mail to Professor Berenbaum, the head of the rhumatology section, who I'd been lucky enough to meet a few times. He answered my questions very courteously.

So now I'm nearly ready for my trip, and hoping the Mabthera will be efficient!

'Bye for now,





Regular Member

Date Joined Jul 2008
Total Posts : 117
   Posted 7/29/2008 6:40 AM (GMT -7)   
Hey Violet
So glad that you are strong enough to take you stand and point out that your time is as valuable as the doctors
                            GOOD ON YOU VIOLET!!!! yeah yeah yeah
I"m quite timid when it comes to doctors
and i have broken down on occassions in the surgery, mad which does have a good impact
So the procedure of having MabThera is the same for me
(1 infusion , then another in 2 weeks---and if deemed necessary repeated in 6 mths. time)
I haven't heard of having a single infusion 6 mths. later......mmmmmmmm....interesting......
I am still going strong, but my rheumatologist said that i would most likely qualify for another infusion in August
but to wait until sept. when she is back from hoildays
My health fund would not nono cover the cost of my infusion in the hospital,
even though i am in the top cover!!!!
The total for the year is $1,000!!!
This is to cover the cost of a nurse giving me the infusion in hospital for 6 hrs x4....crazy!!!
Violet, I hope you have lots of pleasant surprises of super strength for the mabThera,
give it time to kick in though, say 4mths.
Enjoy your trip, and keep me posted on what you get up to tongue
Are you going alone??
How long do you plan to be a nomad???
Love DebbieLou


Post Edited (Kangaroo) : 7/29/2008 7:45:55 AM (GMT-6)

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 7/30/2008 8:11 AM (GMT -7)   
I started tx for RA with enbrel alone for several months and then added mtx.  Also, I went off mtx and took enbrel alone while being treated for a lung infection.  With enbrel alone, I only had to see my doctor about every 3-4 months and I usually had bloodwork done at that time.  Since I've added the mtx, I see my doctor every 2 months and have routine labs done.  I wish I could just have bloodwork done--that would save me some time--but so far, I've had to physically see him as well.  Fortunately, he's usually pretty prompt, so I'm in and out fairly quickly. 
My father has RA, and was recently taken off of mtx because he was living in Brazil at the time and could not get regular bloodwork done.  Once he comes back to the states, he can begin mtx again, but his doctor refused to prescribe it without proper monitoring. 
While it's important to be monitored with enbrel alone, I think the mtx is the one that requires the really close monitoring.  I think every 6 months with enbrel, though, is not enough; better every 3-4 months (only 4 times a year).
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex

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