Copaxone

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.

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

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."

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.

Nikki, I am off Copaxone and I'm not familiar with tsabari, so I can't help you. I'm really sorry. I wish you the best. You are smart to get a second opinion. Gretchen1, you will be happy to hear that I've seen a new neurologist who I really like and who I feel may be able to help me. She told me that I have a LOT of arthritis in my neck. The mouth pain MIGHT be referred pain from that. Oh that this might be so!! She has some reservations about whether I actually have MS, but wasn't prepared to go that far without more tests. She's ordered re-tests: labs x7, MRI brain, MRI spine, etc. Hoping to see her next week when the results are in. She was also concerned that there were white cells in my spinal fluid from the LP the other (ugh) neuro did a year ago. She's hoping to save me from having another LP, but if that would lead to a path where there might be some relief, I say, sharpen up the needles! Another baby step in my quest for an answer and a plan. Regards to all.

Sue

Nikki, have you tried contacting the MS Society in your state? They may be able to provide you with information relative to other options for your meds. I'm very new to the MS community, so I am still learning about the resources that are available to us. What I can do is send words of encouragement, prayers, positive thoughts, and good vibes. Don't stop searching for your best option. Look to your friends and family for emotional support. Use whatever information you can find to be your own best advocate. You have the means to be in touch with people all over the world who are struggling like you are. Lean on the folks in this forum for strength when you need it. <3

Look at you two!!! I flake and don't check the board for a couple of days and you two get it done! Nice job!

Nikki-please remember that you are in charge. You get to decide what you want to do to manage your MS. Do you think you are doing okay on copaxone then stay on it. You could ask if there is something that could be added to copaxone instead of stopping and starting something else. There is bound to be some progression no matter what you take.

Nola-I'm so glad to hear of your new neurologist! Seems like you have a good plan on place to get some answers. Best of luck to you.

Nikki, remember, you and/or your insurance company are paying for that visit. It's natural (I think) to feel rushed because neurologists tend to have a lot of patients. But stand your ground and demand the attention you deserve. Having your questions written down is a great idea! I take notes on the doc's responses because there is much too much (for me) to take in at the appointment. That way when I get home, I can better digest what was said. It helps if you have someone accompany you. Two pair of ears are better than one. Best of luck with your next appointment! Let us know how you are doing.