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Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 40
   Posted 8/17/2017 3:19 PM (GMT -7)   
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 : 3546
   Posted 8/18/2017 6:28 AM (GMT -7)   
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 : 40
   Posted 8/18/2017 8:26 AM (GMT -7)   
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 : 3546
   Posted 8/18/2017 9:01 AM (GMT -7)   
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 : 40
   Posted 8/19/2017 5:03 PM (GMT -7)   
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 : 3546
   Posted 8/19/2017 8:11 PM (GMT -7)   
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 : 40
   Posted 8/22/2017 2:23 PM (GMT -7)   
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

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 10/24/2017 4:23 PM (GMT -7)   
I actually haven't posted in awhile. I was looking for people who may have been on copaxone for awhile and reasons neurologists give for switching a person to a different treatment. So was diagnosed in 2012. Started on the 20 mg daily, got switched to 40 mg copaxone 3 times a week 2 years ago. I did have a severe post injection reaction while on the 20mg, similiar to person that started this thread. Lasted a few hours, teeth chattering, every muscle in a spasim, so scary. I called shared solutions, was told they had heard that before but not often. it only happened the one time-I kept taking my med.

So I got switched to the 40 mg/3 times a week. Been doing pretty good, no major changes on mri, until my most recent one. 1 new lesion, an active one. Keep in mind 1 didn't seem like the worst thing since I had too many to count from the start. When I had my appointment with my neuro, she said the copaxone may just not be working as well. I asked if that means I'm having a relapse. She goes straight to Go Take the test for JC virus to see if I could do the tsabari infusion.

I really would like to not switch meds, I keep reading about these side-effects. I got the impression She wasn't giving me a choice. Had a second opinion, That neuro said he would rather switch me to a different med but was not saying it had to be tsabari. I just don't know what to do.

Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 40
   Posted 10/24/2017 5:29 PM (GMT -7)   
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
Major Depressive Disorder
PPMS

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 10/24/2017 8:00 PM (GMT -7)   
Thank you for your response. I hope that you will finally get a for sure answer. I know doctors are slow to figure these things out sometimes, and I worry too much, which is not good. Good to hear you found a neurologist that you like. I will check back soon to see how things go. Thanks again 😀

Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 40
   Posted 10/25/2017 6:06 AM (GMT -7)   
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
Major Depressive Disorder
PPMS

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 10/25/2017 7:06 AM (GMT -7)   
In the beginning, I went to a support group. Did the ms walk to help raise money for the cure, I get magazines every month from the ms Society and another one I cant think of the name. Lots of great literature for sure. The more I learn, the more optimistic I am that there will be a cure soon.

The stem cell treatment is the best one I have heard about yet. Its not fda approved but I think it will be on the market soon. There are others as well.

Back to the support group, it was not bad. The problem was everyone just quit going. It is nice to have this site where I can ask my questions and not bore people to death with all the crap swirling in my head. If I could help anyone with my experiences over the past 5 and a half years I will.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 10/26/2017 7:53 PM (GMT -7)   
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.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

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

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 10/28/2017 5:21 PM (GMT -7)   
Thank you Gretchen. I feel the same way. I will have to say that to my neurologist and not let myself feel rushed at my appointment. Probably write down my questions. I am in control of myself and my ms. I feel like I'm doing ok on copaxone. There have been a couple new symptoms, a couple times I fell maybe nothing to do with ms. Wearing heels or getting to overheated.

Post Edited (nikki1980) : 10/28/2017 6:32:43 PM (GMT-6)


Mrs NolaVette
Regular Member


Date Joined Oct 2013
Total Posts : 40
   Posted 10/29/2017 11:03 AM (GMT -7)   
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.
Major Depressive Disorder
PPMS

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 10/30/2017 7:09 AM (GMT -7)   
Thank you. I do need to go to that next appointment with a list of questions and demand the doc's attention. It's easy to feel rushed and I get flustered too easy. I do wish the neurologists office wasn't so busy. The others in my area aren't accepting new patients. Had to travel to get that second opinion. I appreciate the response. Hope you're doing ok 😊
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