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Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 37
   Posted 8/17/2017 4:19 PM (GMT -6)   
I was diagnosed with PPMS in October, 2016. Per neuro's orders, I did manual injections of Copaxone 40mg 3x per week for the months of November & December. I had no instructions except the package insert (I knew nothing abut Shared Solutions at the time). I injected into my abdomen areas and the only reactions I had were lump/swelling at injection site, redness, itchiness - nothing I couldn't handle. In January, I discontinued Copaxone because I couldn't afford the high cost and didn't plan to return to the neuro because I really didn't like him, couldn't understand him when he spoke, confused me so much that I found out that I understood the complete opposite of what he said in later visits. In preparation for a hearing of my disability claim, I saw him again in June and he wanted me back on Copaxone. I did my own research and found SS and was able to get financial assistance. Now I am back on Copaxone (same dosage as before) using both manual and Autoject. After 13 injections, I have now had 3 BAD IPIRs. I got chills so bad that my teeth chatter, body aches, esp in legs, that feel like the flu, and the most awful headache. I actually thought I had had every kind of headache there was to have, but this is a new one for me. It starts in the back of my neck at the nape and reaches over the top of my head to my forehead. The chills and aches come on about 30 minutes after I inject. The chills go away in about 1-2 hours, the body and head aches last much longer. I spoke to SS this morning after the latest event which was last night. She recommended I speak to my neuro before I inject again. He won't be back before Aug 28th!! He goes out of the country a lot and my wait time to see him for a regular appointment is FOUR HOURS!! See why I don't like him?! I made an appt in June to see a different neuro, but the soonest she can see me as a new pt is October! Do others have such difficulty getting in to see a neuro? I get so angry when I think of how this guy just prescribed the med and basically showed me the door with no instruction or support. Neither he nor his staff mentioned (or maybe don't know about) Shared Solutions, which I find inexcusable. I have tried different injection sites with both manual and autoject injections. There is no pattern and the severe IPIR does not happen every time. I'm going to contact my PCP tomorrow to get his take on the situation, but I probably won't inject again until I speak to the dreaded neuro - and who knows how long that will be before I can actually reach him when he does return. i'm thinking he'll want me to come in (who knows when I'll get an appt) (and wait 4 hours) to see him. I'm sorry this is so long. I needed to vent to people who have experience with Copaxone and MS.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 8/18/2017 7:28 AM (GMT -6)   
Hi there. I remember you. You asked many questions while in the diagnostic stages. I'm so sorry to hear you've been diagnosed with MS and a progressive form at that!!

The reactions you're describing seem much too severe to be IPIR!! I have had IPIR. For me, it results in some flushing and chest tightness. No headache and certainly nothing that lasts 2 hours!! Mine lasted 10-15 minutes. I'd have a quick lie down and feel fine in a few minutes.

Your neurologist sounds horrible!!! Find a new one!

You may find that you just don't tolerate copaxone. Medications can be very personal. They work for some and not for others. I've only been on copaxone. I've been taking it for about 11 years. It's been a very good medication and I've had very little, slow progression.

The bad part is, if you can't take copaxone, your med choices become few. Most disease modifying medications are effective for RRMS. Many doctors don't prescribe anything for progressive MS beyond treating symptoms.

Good luck and keep us posted. Find a new doctor and do a search on medications for progressive MS.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 37
   Posted 8/18/2017 9:26 AM (GMT -6)   
Thanks so much, Gretchen. I had my doubts about taking Copaxone from the beginning because I know it's for RRMS, which is not what I have, according to this neuro. I went with it because I was so shocked at the diagnosis that I was willing to blindly follow his advice. With the reactions I've had and after speaking with the nurse at SS, then speaking to the neuro's "nurse", then reading about your experience and that of others on HW, I'm going to listen to my body and make no further injections until I speak with the neuro himself (ugh!).

I already have an appt with a different neuro, but I just have to wait some weeks to see her. I'm hopeful but I will keep trying different docs until I find one that I feel confident with. I'm also going to look into meds for PPMS as you suggested.

Gretchen, thank you so much for what you do. You help people who are shocked, scared, confused and even determined. You do good work, in case no one has told you that lately!

Sue
Trigeminal Neurapathy started 2 years after root canal
Bl-polar/Major Depressive

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 8/18/2017 10:01 AM (GMT -6)   
Thanks, Sue, for your kind words. It's an easy thing to help others. I have a few organizations that I enjoy giving my time to. Service is such a feel good deal for me.

Copaxone has been successful for some who have PPMS. It doesn't always work. Over-all in my opinion, it's a good medication. It's just that there's never one medication that helps everyone.

Check out Ocrevus. It's a newer treatment that has been prescribed for both PPMS and RRMS. It's a once ever 6 months IV infusion. Talk to your doctor(s) and see if that's a possibility.

Hang in there. It's hard work to be your own advocate. Take care.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 37
   Posted 8/19/2017 6:03 PM (GMT -6)   
Thanks, G. I will look into Ocrevus and speak to my new neuro about it and any other options I might have.

Have you ever received Ivig infusions? Just curious. I don't know anyone who has. My present neuro mentioned that they "might help."
Major Depressive Disorder
PPMS

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 8/19/2017 9:11 PM (GMT -6)   
I have not received IVIG. I have two friends who are both receiving IVIG, but not for MS. It's extremely expensive. Many insurance companies will fight you on this. Sigh.

What are your worst symptoms?
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 37
   Posted 8/22/2017 3:23 PM (GMT -6)   
My biggest complaint is headache. i can't say there is any time of the day when my head doesn't hurt. I still have the mouth/face pain that started over 4 years ago. (I originally thought that was trigeminal neuralgia.) I also have body aches, mostly in my legs. My balance isn't good. I don't fall down but I lose my balance and have to grab for something at times. I remind myself that a lot of people have it much worse so that I don't feel sorry for myself. Every day is a struggle against letting the pain win.
Major Depressive Disorder
PPMS
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