Forum

Farewell Copaxone

It was not planned to be this month.
I already knew that I would be re-assessed as SPMS at my next Neuro appointment in August, and that Copaxone would be stopped then.

Just one little problem: my delivery comes via Healthcare at Home - or in this case did not come!
No call to check stock (why they cannot figure out that a monthly supply needs replacing every month I do not know).
No can get through on the phone.
The delivery date came on Monday and went, without anyone stopping to drop the Copaxone off.

An e-mail exchange with my MS Nurse gave me the option of having her chase up this terrible firm (when she could be seeing patients), or just stopping now. I made the decision - stop now, and have e-mailed her to that effect.

Now, I am keeping a daily log of what changes I notice, as the Copaxone wears off.

Geoff

hi geoff

evolution homecare deliver my copaxone and i’ve never had a problem with them.

do you have the option to choose who delivers?

good luck with your new regime.

carole x

No, Carole, I do not get any choice. I do understand that the HaH contract is being looked at, though.

Geoff

Hi DrGeoff

Sorry to hear that you’re now 2P. I hope the transition is not too noticeable for you, in the absence of your usual DMD.

Best of luck

Tracyann x

A significnat milestone, Geoff.

It will no doubt take some coming to terms with.

All the best.

Anne

Hi Geoff

I came off of Copaxone and then Rebif following going on to SPMS from RRMS and I saw no effect at all. Everything just stayed the same to be honest. I was really worried that I would go down hill fast but that hasn’t happened. I stopped DMDs 18 months ago now.

Hope you get on ok.

Shazzie x

I hope things are not too bad for you Geoff as the Copaxone wears off.

Noreen x

I hope the SPMS reaches a plateau Geoff and that you can keep wobbling along. In a way, and please do excuse the weak metaphor, it’s like removing a crutch.

If you ever want to have a rant at someone, do email me. I have enjoyed reading your well-aimed ripostes at thisisms - especially at that biking idiot.

saludos!

K

Thanks, everyone for the messages of support. I am still officially RRMS, and will remain so until August. I had suspected SPMS last year, and the thought does not worry me too much. What gets me just a little bit is the way SPMS is diagnosed.

I was walking with one stick when I was assessed prior to starting a DMD - that gave me an EDSS score of 1.5.
Then my walking got worse. and I needed two sticks - and subsequently a 3-wheel rollator. That gave me an EDSS score of 6.5. I have been that way since last autumn.

It is the “got worse, then stable” that will get me officially reclassified. That I have not had a relapse since February 2012 (which I personally put down to the Copaxone) does not count.

So, comes the daily log. Will be interesting to see if I have a relapse (or not) between now and August 6th. You can expect some sort of reports on this from time to time.

Geoff