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Thread: A chuckle for all.....

  1. #11
    Distinguished Community Member agate's Avatar
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    Rose, I'm wondering too if it's the Copaxone that is bringing on this arthritic pain. If so, I hope it will subside with time. I haven't been doing anything especially strenuous or out of the ordinary, and I do have arthritis in my spine. It's osteo, not RA, luckily.

    I was in and out of sleep all night while listening to a rather interesting book. I was glad the book was there to as a distraction.

    I'm going to see about Aspercreme. I've never tried it and appreciate the suggestion.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate (generic Copaxone) since December 2020.

    "A person with multiple sclerosis walks into a bar ... and a table, and a chair, and a wall."


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  3. #12
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    Agate, are you feeling any better? I wonder about the Copaxone, but I have heard you say you hurt in your shoulder before. I wonder if you suffer from Neuralgia? I think we discussed that possibility once before, back before Copaxone. If so, I guess we would have to name it "roaming neuralgia" since it seems to like to move around. Hope you are on the mend now.
    Virginia

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  5. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    agate ~

    Since Virginia mentioned neuralgia, I looked it up and found this:

    https://www.healthline.com/health/neuralgia

    It is so difficult sometimes to identify the source of pain. Is your current pain similar to the pain you had previously, to which Virginia referred? Can you distinguish a difference between joint pain and nerve pain? That's got to be a hard one, because to me, pain is pain.

    Healing, positive energy and prayers on the way to you ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  7. #14
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    agate ~

    Since Virginia mentioned neuralgia, I looked it up and found this:

    https://www.healthline.com/health/neuralgia

    It is so difficult sometimes to identify the source of pain. Is your current pain similar to the pain you had previously, to which Virginia referred? Can you distinguish a difference between joint pain and nerve pain? That's got to be a hard one, because to me, pain is pain.

    Healing, positive energy and prayers on the way to you ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Thank you for the helpful suggestion. The shoulder/neck pain I've been having could be due to any number of issues, including arthritis, diabetic problems, MS problems, or just bad habits on my part, like tensing up my shoulders quite often. I don't even know I'm doing this but whenever I think to check my shoulders, I find them all tensed up, as if I'm trying to keep off the cold.

    Whatever the cause is, I'm mainly interested in making the pain go away. "Correlation is not causation" as the saying goes but I can't help wondering at how odd it is that within hours after a shot in the right arm, I develop neck/shoulder pain on the right side that is quite intense for a day or two, and then after a shot in the left arm, I develop neck/shoulder pain on the left side that is similarly intense and lasts a day or two.

    Just as a starting point, I called the company that puts out generic Copaxone (Mylan is their name except that they're changing it to Viatris. Are they trying to hide, I wonder?) I wanted to know if I could just skip the arm sites for a while.

    They didn't have much of a problem with that, even though the official line always is that you should use all 7 sites and rotate them in a regular way so that no site gets used more often than once a week, etc.

    We'll see.

    Any more days like yesterday will definitely not be welcome. Yesterday I went through the day asking myself how I could possibly pick up that pencil or spoon or comb or how I could get the words out if I had to talk to anyone. There have been several nights in a row when I was in and out of sleep because the pain was always there. Last night was a bit better because I applied warm gelpacks. I did have to get up several times in the night to reheat the gelpack but it was helpful.

    Today was a much much better day. The pain is bearable now. I'll still be sleeping with a gelpack but I do believe I'm coming out of this bad patch.

    It seems to be one muscle in particular that is affected. I looked up a chart of muscles, and the trapezius muscle seems to be the one. The pain is over the entire area that happens to be that of that muscle. I don't know why a Copaxone shot in the arm could set this off, and the Mylan/Viatris people hadn't a clue either, but they wanted to file an Adverse Event report, and so they gave me an "AE" number, just to make me feel important.

    They did say that the medicine is "highly irritating."
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate (generic Copaxone) since December 2020.

    "A person with multiple sclerosis walks into a bar ... and a table, and a chair, and a wall."


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  9. #15
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    Agate, I have been skipping my arms with Rebif for the past 20 years. I have much worse site reactions due to not using all the sites. But what I do is I use my stomach on the left side, my thigh on my left side and my rear on the left side. The following week I do the same with my right side. Therefore, I only use a site every other week. It has worked, but I guess due to giving so many the site reactions have been worse in the last year or two.

    I do wish you could do without doing your arms for awhile and see if you get better.

    Everything is such a hassle with this disease. I am glad you are some better with the gel packs. I am sure the lack of sleep is not doing you any good.
    Virginia

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  11. #16
    Distinguished Community Member agate's Avatar
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    Virginia, yes, lack of sleep really does me in. Last night I slept pretty well. I went to sleep with a heated gelpack on my neck and shoulder, and it must have lasted quite a while because the pain didn't wake me up again until about 2:30 but even then it wasn't bad enough for a trip to the kitchen to heat up the gelpack.

    I've been using pillows in various ways to ease up on the pain. If my back is at one angle, the pain is difficult but change the angle somewhat by positioning a pillow and it's much better.

    I used to make decorator pillows, and so did my SIL. So I have an assortment of small pillows that can be appropriated for pain relief.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate (generic Copaxone) since December 2020.

    "A person with multiple sclerosis walks into a bar ... and a table, and a chair, and a wall."


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  13. #17
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    agate ~

    Did the Mylan/Viatris people elaborate on the meaning of "highly irritating?" Irritating what? The nerves, the muscles, the joints? You, as you battle the pain?

    When you took Copaxone previously, did you take the brand name or the generic version? Did you experience similar pain then, when you injected into your arms? Sometimes the excipients in drugs are the source of the problem with side effects.

    For example, after several people in San Diego had an allergic reaction to the COVID vaccine, one "expert" mentioned that it could have been from the polyethylene glycol in the vaccine. That is in many OTC, especially laxatives, and prescription drugs for some reason.

    https://en.wikipedia.org/wiki/Polyethylene_glycol

    I hope using your other sites and rotating will work for you and that you'll be rid of this neck and shoulder pain.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  15. #18
    Distinguished Community Member agate's Avatar
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    I believe that "highly irritating" meant irritating to the tissues and organs in the body, apt to cause reactions, such as the inflammation, swelling and pain that routinely occurs after each shot?

    I wish I'd asked for an amplification of that phrase.

    I was eager to find out just what kind of neck pain others who reported it had been having but that question wasn't answered. They were too busy with "we just need to get a little information from you." They really wanted to record this as an adverse event--to add to their collection.

    If you look at the possible adverse events for this drug (or for most drugs on the market!) the list includes just about every adverse event anyone could think of, and I believe that the drug companies are trying ultra-hard to protect themselves by making sure they have information on every little problem anyone has while on the drug.

    About 30 years ago I noticed an odd swelling across my upper back, a sort of large butterfly shape. It was there only sometimes. At about that time I began noticing occasional upper back pain as well. I've had episodes like this over the years. These particular two episodes were far worse pain than before however.

    Since both of them came within hours of an arm shot, I'd guess that I have a touch of arthritis in my cervical spine and that it gets triggered by Copaxone shots in the arm.

    I had pretty severe problems with the arm shots when I was on Copaxone 10 years ago though with the autoinjector they were easier shots. That was the brand name version in a somewhat different dosage--20 mg daily compared to 40 mg 3 times a week.

    It could be the additives as you suggest. The generic forms of a drug often use different additives compared to the brand-named ones, and I've heard of cases where that matters.

    I'm going to wait and see but I don't want to try any more arm shots if I can get away with it, and it looks as if Mylan/Viatris isn't having any major problem with this change.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate (generic Copaxone) since December 2020.

    "A person with multiple sclerosis walks into a bar ... and a table, and a chair, and a wall."


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  17. #19
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    agate ~

    It seems that Copaxone has had an irritating affect on you in the past, but it sounds like it was only associated with arm shots. Is that correct? The only way to test this is to stop giving arm shots to see if your pain subsides, which is what you are doing.

    I pray that it works for you, as it has for Virginia.

    Healing prayers on the way ~

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  19. #20
    Distinguished Community Member agate's Avatar
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    Yes, that's the picture, Rose. To be on the safe side, for now I'll be skipping the arm shots and giving that day's shots on some other site.

    This pain isn't getting any better. After several nights of having to get up to heat up gel packs, when even getting up out of bed can be an intense experience, I'm going to try a sling to oblige me to immobilize the left arm as much as possible. I've been trying to go easy on it but a sling might force me to be better about that.

    Everything is going forward here but at a snail's pace.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate (generic Copaxone) since December 2020.

    "A person with multiple sclerosis walks into a bar ... and a table, and a chair, and a wall."


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