Copaxone = low blood pressure for me

Question

Went to see my family doctor today and since starting Copaxone my blood pressure has been dropping but not to an extreme until today when I went to see her and it was 92/60. She said that the med I am on for my fatigue should increase my blood pressure so she wanted me to call my neuro to see what he wants to do.

I of course put a call into him but not really expecting him to return my call any time soon lol. I also called shared solutions and the nurse told me that there is a study of 1000 people and it shows that 1 in those 1000 people showed a drop in blood pressure. She told me to contact my neuro to see what he would like me to do lol. At least everyone is thinking the same, but as I said I am not expecting my neuro to call back any time soon cause he never does. 

So have any of you Copaxone users out there experienced low blood pressure with the injections? Not sure if I should inject today or just wait to talk with neuro...what to do, what to do?! Oh well I will see what he says if and when he calls me back. 

If I have to switch DMD's would I have to be off the Copaxone for a certain amount of time before starting something new? If so then maybe I will stop taking it as of now so that I can start fresh when I see my neuro on the 4th of June.


Thank you,
Paula

figuerpa · Answer

Yeah I decided I am not going to take it. I am feeling much better as of now and my BP is back to my normal so I am going to call Monday and tell them I decided against taking it. I am sure he just wants me to take it so he can test my BP in his office but I am not going to have low BP for a month when I know there is something I can do about it. 

Paula

sllowe · Answer

I'm surprised they wanted you to keep taking it w/out being seen. You know how you are feeling best, if the low bp is making you feel horrible (I imagine it must be) then simply call them back and advise the nurse that you feel a bit stuck between a rock and a hard place...That is, go against their guidance and keep injecting, but suffer the low bp and potentially create problems physically. 

Low bp can drop you lady - and, quick. A fall is of concern for sure. Surely the nurse would understand your anxst over it.

figuerpa · Answer

Ok so here goes. I stopped taking the Copaxone for a few days. Did my blood pressure this morning and it was 118/78 which is around my normal. So now my delima is should I do the shots again and see if my BP drops again or should I not take them and wait for my appointment with my neuro on June 6th. HHMMMM decisions....decisions 

Paula

SarahL2491 · Answer

its like we've said to other people, its YOUR MS and you are the ultimate judge. If you do not feel comfortable with this low BP and it can be a danger, then don't continue it.......if your neuro objects then perhaps he is not the neuro for you...just saying

figuerpa · Answer

Talked with my MS nurse and Dr. wants me to continue with the Copaxone until I see him on the June 6th and if I need to see him sooner then I should call. I am not sure I want to continue taking it due to my blood pressure dropping. Why would I want to give myself problems that I can avoid. 

Last thing I need is more problems than I already have. I will think about this one and decide what to do. 

Paula

figuerpa · Answer

I called my neuro this morning and talked with his nurse. She said she doesn't know what his plan is but that she would talk to him when he gets there and he will either call me or she will see what he wants me to do and call me back herself. I told her I would have my phone turned up and with me so that I don't miss the call again. Yesterday my phone was on vibrate because of all th doctors appointments and I just never turned it back up. I should know more later this afternoon and I will be sure to let everyone know what he suggests. 

I am going to take all options into consideration. Avonex is just what my sister takes and has great success with it. I went with Copaxone because it has less side affects but now I may need to reconsider my therapy. 

Paula

sllowe · Answer

HI Paula,

I've read this, but can't put my finger on where I read it. Thought it was written somewhere along with Gilenya.

As for the switch -
I don't know the specific guidelines on it. But, just something to consider, incase the doc says "a few weeks"  .... If it were me, I'd wait longer, for the simple reason to have the benefit of time to recognize new med side affects vs old (possibly) lingering side affects of the last. I'd get stabilized, i.e., few test of stabe bp's, etc. some labs, and then introduce the new one. Kind of a re-establishment of baseline where labs and checks and body reactiions are concerned.

zoefromsussex · Answer

Hiya Paula, I didn't realise Copaxone could do that either. Will you let us know what the neuro has to say? My bp is really low anyway so I wonder what will happen once I start my copaxone?! lol

debgen · Answer

Hi Paula,
I too have always had low blood pressure. I have been on Cooaxone for 18 months. I had a dr. Appt. last week and my blood pressure was also 92/60!
My neuro wasn't overly concerned because my blood pressure is always low but he does want to keep monitoring it.  I think it is very interesting what your neuro said about Copaxone and low blood pressure. I will definitely talk to my neuro about this. I don't know much about Avonex. Please keep me posted about how this turns out.
Thanks,
Deb

figuerpa · Answer

Well my neuro called me after hours and of course I missed his call :( He left a message for me to call and talk to him tomorrow. I am just not doing my shots until I know what to do. 

Thank goodness the fatigue med increases blood pressure lol It could have been much lower I suppose. My blood pressure is usually low but since being on Copaxone it has dropped a lot. Could explain some of the lightheadedness I have been having. 

I never really thought about the Copaxone either but my doc mentioned it then researched it and said that it has shown to lower blood pressure in some patients so she wanted me to call my neuro. 

I will talk with him tomorrow to see what he suggests. If I have to switch I am thinking about Avonex cause it is a weekly shot versus every day or 3 times a week, but I will see what he suggests and we can go from there. 

Paula

Lulu54 · Answer

Paula,
I have low blood pressure normally and never gave the copaxone a thought as the cause.  Perhaps that is why one time at the cardio I was 85/54?  I was also on a heart drug at that time, too, though and didn't give the copaxone a second thought.

Some drugs have washout periods, but it would depend on what your new DMD would be.  Going to Tysabri required me to do at least 30 days off Copaxone.  Going from gilenya to Tysabri is something like a 90 day washout period but they haven't decided what the timing should be to go from Tysabri to Gilenya.    Or I may have that reversed, but you get the general idea.  I'm not sure what would be required if you go from copaxone to one of the interferons.

It used to be there were so few choices that this wasn't an issue.  Now with all these options and even more coming soon, it is much more complicated.

You'll have to do this serious talk with your neuro and figure out the best approach.

good luck,
L

saucygrl · Answer

My blood pressure dropped a little when I was on Copaxone, but not as low as yours did.  It's typically very low anyway.  I was one of the lucky 4% that got migraines with it.  The Shared Solutions nurse had me stop using it until my neuro called me back.  At that point, she also told me not to use it anymore.  I think it's a wonderful medication, just not for me!  Good luck!

Chris