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Old 10-18-2009, 04:39 PM   #1
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Question IVIG Infustion for Polymyositis

Has anyone had experience with IVIG as a treatment for Polymyositis or Mixed Connective Tissue Disease? Were there any side effects? How quickly did the treatment work?

 
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Old 10-19-2009, 11:08 PM   #2
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Re: IVIG Infustion for Polymyositis

Hi,
I have Dermatomyositis, which is one of the three myositis diesases, but I do know each is treated differently.
I did try IVIG and it was showing progress, but unfortunately before my 5th session I had a blood clot to the heart causing a heart attack. I was afraid to try any more, even though there was absolutely no evidence the IVIG had anything to do with it. I was just scared to continue as I'm sure you could understand. The IVIG was showing it was improving my condition, and I was so excited to think if it did work I could get off the other drugs which have such bad side effects. So all I can offer you is that I did try, and it was showing good results but never got to finish to see if it would have gotten me off the drugs and caused my symptoms to get better alot faster than the medications do. Sorry couldn't be more help.

 
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Old 10-21-2009, 11:29 AM   #3
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Re: IVIG Infustion for Polymyositis

Quote:
Originally Posted by sammyandcompany View Post
Hi,
I have Dermatomyositis, which is one of the three myositis diesases, but I do know each is treated differently.
I did try IVIG and it was showing progress, but unfortunately before my 5th session I had a blood clot to the heart causing a heart attack. I was afraid to try any more, even though there was absolutely no evidence the IVIG had anything to do with it. I was just scared to continue as I'm sure you could understand. The IVIG was showing it was improving my condition, and I was so excited to think if it did work I could get off the other drugs which have such bad side effects. So all I can offer you is that I did try, and it was showing good results but never got to finish to see if it would have gotten me off the drugs and caused my symptoms to get better alot faster than the medications do. Sorry couldn't be more help.

 
Old 11-03-2009, 06:55 PM   #4
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Re: IVIG Infustion for Polymyositis

I did IVIG and it brought my CPK numbers down but it didn't do anything to help with the terrible muscle pain that I suffer from so I discontinued them. I just didn't think it was worth sitting in the hospital 3 days a month and all that expense if it wasn't working. It's been a number of months since I did the IVIG and even my last blood work still showed my muscle numbers holding where before they were off the charts.

 
Old 11-04-2009, 11:54 AM   #5
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Re: IVIG Infustion for Polymyositis

I am sorry IVIG didn't decrease your pain. Did you find it decreased the your CK level?

I enjoy hearing from you and others who have had this treatment. So far I have not found the proper treatment. Yes, IVIG is very expensive, too.

Thanks for responding to my message. Let me know if your CK did decrease after your treatments. Have you stopped the infusions for good?

NK

 
Old 11-05-2009, 03:26 AM   #6
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Re: IVIG Infustion for Polymyositis

I use IVIG for my dermatomyositis (DM). I've been getting it off and on for 2 years now.

We've also been trying other drugs on me, and the breaks in the IVIG are to see if the other drugs are working. When I go back on IVIG after a break, my CK will (usually) drop by half each time, and then level off around 1,000. (I have not made it into remission once in the 3 years I've had DM.)

The only 2 things that have worked on my DM, at least to make it liveable, are high doses of prednisone and IVIG. And of course high doses of prednisone are only a short term solution, so I depend on the IVIG. (Methotrexate, azathioprine, cyclosporine, mycophenolate and cyclophosphamide have all failed to reduce my CK or boost my muscle strength.)

I get the IVIG in 2 six hour sessions in a clinic sitting in a layzboy type recliner. I suggest sleeping, reading, listening to an MP3 player. It is painless, just a bit weird having this tube in me.

And it seemed very weird going home with the IV still in me at night. I sleep with my arms around a pillow, to keep from sleeping on the IV site. What stays in your arm is just a flexible plastic tube. If there are every any problems, you just pull it out and put a bandage over it. I've never had any problems.

I can feel the benefits of an IVIG infusion after a few days. They last about 3 weeks and then slowly wear off a bit in the last week before the next infusion.

They give me an acetaminophen tablet and sudafed tablet around when the IVIG starts. I take the acetaminophen and sudafed again when I get home and before I go to bed. That helps keep minimize the headaches and body aches that I get for 1 to 2 days afterwards.

If also eat a banana a day and drink a reasonable amount of water the day before, during, and 3 days after I get the IVIG.

The IVIG gave me a bit of high blood pressure, which gave me terrible horrible migraines. If you find your blood pressure is high, discuss with your specialist if it is (s)he or your family doctor who should prescribe the high blood pressure medicine.

Once I was on the high blood pressure medicine, the migraines almost completely disappeared.

I don't get pain with my DM, so I can't comment on pain relief.

DM is a blood product, highly refined and treated to reduce the possibility of disease transmission as much as possible. But there are still theoretical risks of disease transmission.

The amount of IVIG needed to treat DM is so large it must be given over 2 days minimum, to avoid strokes. (Ten or whatever years ago, when IVIG was being tested in 10 patients with DM, they were giving it in one day, and one of the test subjects had a stroke.)

But DM doesn't have the liver and kidney damaging side effects or carcinogenic side effects of some of the other strong medicines used for DM.

Fortunately I live in Canada, and the death panels of our government run socialized medical care system make IVIG available completely free to anyone whose specialist can demonstrate a need for it (i.e. make a 5 minute phone call). I'm told the amount I use costs about US$20,000 every 4 weeks. If it wasn't for our universal medicare I could never afford that. If a co-pay is what I think it is, I couldn't even afford the co-pay.

Just to sum up, if your doctor thinks IVIG might work for you, I suggest you try it. If it doesn't do anything much after 3 treatments 4 weeks apart, abandon it.

 
Old 11-05-2009, 10:30 AM   #7
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Re: IVIG Infustion for Polymyositis

Yes the IVIG brought my numbers from being sky high to complete normal, which was good. They keep monitoring them and even though I haven't done the IVIG for 9 months the levels are still holding normal. I don't plan on re-starting the IVIG unless my rheumatologist would insist on it. I have systemic sclero along with the Polymyositis so for the pain now he's trying methotrexate. So far that hasn't done anything yet so I guess the next step is to really increase the doseage of the methotrexate. Due to the expense of the IVIG I had to appeal my insurance for them to OK it and it wasn't until then that I was diagnosed with the poly in addition to the other 5 diseases that I have that the insurance decision was reversed on appeal and now they have approved unlimited IVIG if I want them. I just don't see doing it though if it's not helping with the pain. I hope this helps.

Warm hugs,
Peggy

 
Old 11-06-2009, 05:55 PM   #8
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Re: IVIG Infustion for Polymyositis

The main thing with PM and DM is the muscle weakness -- it is that that prevents us from working or in extreme cases kills us. DM also comes with skin issues. The IVIG helps with both of those things. Only 1/3 of PM and DM cases have pain as a symptom.

Since your CK is normal, and you have major pain, I am guessing your pain is from one of your other 4 illnesses.

IVIG doesn't work on all autoimmune diseases, DM is the main one, and PM is another one.

So I think you've made the right decision in your case Peggy.

The IVIG put your PM into long term remission, and unless the muscle weakness of PM returns, there is no point to taking any more. But it sure was worth you taking it when you did since it put you into long term remission.

- Keith

 
Old 11-07-2009, 08:57 AM   #9
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Re: IVIG Infustion for Polymyositis

Thanks for your great insight Keith. I wouldn't wish this constant muscle pain on anyone. If I didn't have the pain patches that give constant pain relief, plus the oral meds, I don't knowwhat I'd do. I would be lying if I didn't say that at this point I'm terribly disappointed and depressed that the doctors have tried everything and I am stuck with this and it will be what it is. I also have to realize though that I could be alot worse off in that the Cellcept that I take has really helped slow down the Sclero. I have lung involvement that is worse each time I do a pulmonary function test but I would hate to see how much worse it could be if it weren't for the Cellcept.

So you don't have pain with your disease? And from what I gather from you the CPK numbers that are now normal were the benefit of the IVIG and hopefully they stay down. How will I be able to tell if they start going back up? It's so hard to differentiate the diseases and their symptoms.

Are you able to work? If not, were you able to get disability? I am grateful every day that my disability went through as there is no way I could hold down a job.

Thanks again for your great input. I wish you all the best.

Peggy

 
Old 11-27-2009, 02:36 AM   #10
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Re: IVIG Infustion for Polymyositis

1. Nkron, how did your IVIG go? Are you getting more treatments?

2. Hi Peggy. I have a friend with fibromyalgia and she tells me about the pain. It is very debilitating, and I imagine your pain has a similar effect on your life.

I was "working" up until April of this year. But my condition had worsened to where I was showing up less than 50% of the time, so I finally conceded that I needed to go on long term disability.

I never got into remission. They kept interrupting my IVIG to see if other medications were working. Now we are past that, and there are no other medications to try, they have all failed. So I'll be getting the IVIG every 1 to 2 months steadily now.

Do any of your other medical conditions cause high CK (SCK) or muscle weakness?

I suppose (not being a medical professionl) that muscle weakness would be your main clue to your PM recurring. If you had DM, you might also use the rash as a clue.

Also, your MD would probably see your CK going up. I am guessing he'd be asking you to get that tested at least every 2 to 3 months.

Of course too much prednisone for too long can cause muscle weakness (chemical myopathy) too.

From what I've read, radiologists can often tell the type of myopathy from an MRI. But MRIs aren't cheap so it isn't like they can give you an MRI every few months.

Like I said, I have almost no pain, sometimes just a feeling of having tired muscles, like after a hike, or workout, or helping a friend move. A bit sore, but not painful, they don't keep me awake. But the weakness is awful. If I try to do too much (like 20 curls with 3 pounds, or walking 10 minutes), I'll get a mild cramp, tired muscle pain, and the muscle will stop working -- but when I rest, the cramp goes away in a few minutes.

Last edited by Keith2468; 11-27-2009 at 02:37 AM.

 
Old 11-28-2009, 04:06 PM   #11
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Re: IVIG Infustion for Polymyositis

Thanks for your response! Sorry to hear just how bad your muscle weakness is. I don't know which one of us has it worse...lol. Seriously though, I can't imagine how frustrating it is to be so weak and there's nothing you can do about it. Were you able to get on Social Security disability or did you have your own disability plan at work? I am so thankful that mine went through as I don't know what I'd do without it.

How long do your IVIG's take? When I did mine I would check into the hospital and it would take from 8:30am to 5:00. This would be done for 3 days in a row. I was in a private room which was nice but it sure got to be long, long days. I was in the same ward as other people getting their chemo infusions so I felt guilty as I know it could be a whole lot worse.

The only numbers that I know of are my CPK muscle numbers. I believe these register the muscle damage. This number went from being off the charts to normal, which was great, but that's all it did. It didn't do anything for the pain however.

I also have developed a whole new fun thing in that it feels like my ankles are being literally cut off from my legs, like they're being sawed off. I am also having terrible pain in the bottom of my feet and heel pain. In checking with others with this disease I am now finding that it wears down the padding of our feet so I guess a new doctor will be added to my list of doctors, a podiatrist. I go to my rheumatology apt in January so I will be asking for him to make me an apt, unless I get one scheduled at the same time in January.

Is your muscle weakness going to continue to get worse where you will continue to get weaker and weaker? I so hope not. Also, do you have to have really limited activity so as not to make it worse?

Take care and warm hugs,

Peggy

 
Old 12-01-2009, 01:17 PM   #12
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Re: IVIG Infustion for Polymyositis

Quote:
Originally Posted by Keith2468 View Post
I use IVIG for my dermatomyositis (DM). I've been getting it off and on for 2 years now.

We've also been trying other drugs on me, and the breaks in the IVIG are to see if the other drugs are working. When I go back on IVIG after a break, my CK will (usually) drop by half each time, and then level off around 1,000. (I have not made it into remission once in the 3 years I've had DM.)

The only 2 things that have worked on my DM, at least to make it liveable, are high doses of prednisone and IVIG. And of course high doses of prednisone are only a short term solution, so I depend on the IVIG. (Methotrexate, azathioprine, cyclosporine, mycophenolate and cyclophosphamide have all failed to reduce my CK or boost my muscle strength.)

I get the IVIG in 2 six hour sessions in a clinic sitting in a layzboy type recliner. I suggest sleeping, reading, listening to an MP3 player. It is painless, just a bit weird having this tube in me.

And it seemed very weird going home with the IV still in me at night. I sleep with my arms around a pillow, to keep from sleeping on the IV site. What stays in your arm is just a flexible plastic tube. If there are every any problems, you just pull it out and put a bandage over it. I've never had any problems.

I can feel the benefits of an IVIG infusion after a few days. They last about 3 weeks and then slowly wear off a bit in the last week before the next infusion.

They give me an acetaminophen tablet and sudafed tablet around when the IVIG starts. I take the acetaminophen and sudafed again when I get home and before I go to bed. That helps keep minimize the headaches and body aches that I get for 1 to 2 days afterwards.

If also eat a banana a day and drink a reasonable amount of water the day before, during, and 3 days after I get the IVIG.

The IVIG gave me a bit of high blood pressure, which gave me terrible horrible migraines. If you find your blood pressure is high, discuss with your specialist if it is (s)he or your family doctor who should prescribe the high blood pressure medicine.

Once I was on the high blood pressure medicine, the migraines almost completely disappeared.

I don't get pain with my DM, so I can't comment on pain relief.

DM is a blood product, highly refined and treated to reduce the possibility of disease transmission as much as possible. But there are still theoretical risks of disease transmission.

The amount of IVIG needed to treat DM is so large it must be given over 2 days minimum, to avoid strokes. (Ten or whatever years ago, when IVIG was being tested in 10 patients with DM, they were giving it in one day, and one of the test subjects had a stroke.)

But DM doesn't have the liver and kidney damaging side effects or carcinogenic side effects of some of the other strong medicines used for DM.

Fortunately I live in Canada, and the death panels of our government run socialized medical care system make IVIG available completely free to anyone whose specialist can demonstrate a need for it (i.e. make a 5 minute phone call). I'm told the amount I use costs about US$20,000 every 4 weeks. If it wasn't for our universal medicare I could never afford that. If a co-pay is what I think it is, I couldn't even afford the co-pay.

Just to sum up, if your doctor thinks IVIG might work for you, I suggest you try it. If it doesn't do anything much after 3 treatments 4 weeks apart, abandon it.
Hi Keith, Your explaations on IVIG were very helpful to me as I start the treatment 12-7-09 for five days straight. Is the treatment really 5 hours long and is it easy to stop the treament for bathroom breaks etc? I was DX'd with PM 12 years ago and have all or most of known treatment you mentioned, Methotrxide and Pregnisone put me in the hospital for a week with Infections. I won't try this again.
I currently have much pain in the lower extremities and have become too week to walk without a walker or scooter. I am hoping to regain some strength. Could you drive after your first tratments?
Thanks, Ken

 
Old 12-01-2009, 01:39 PM   #13
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Re: IVIG Infustion for Polymyositis

Hi Peggy,
Thanks for your quick reply. I am fortunate to have private disability insurance and belong to Kaiser Permanente (HMO), they have never refused any treatments including Human Growth Hormone,unfortunately it did not work on me. I have a friend in L.A. who was DX'd with PM the same time I was and he has been getting IVIG treatments once a month since. He still is up and about and walks three miles a day!! I am going to a Pain Specialist this afternoon and I am dreading just getting from my Jeep into the Medical BLGD. I will use my walker but it still is very difficult. Oh well it is what it is and it is sure good to hear from others with the same disorder. One last thing, you mentioned your decreased padding on your feet, I was told that the Myolating (sp) sheild between muscle and bone has been destroyed thus the pain. Have you heard of this?
How cold is it currently in Minnasota, any snow yet?
Hope to hear from you again,

Ken

 
Old 12-02-2009, 05:39 PM   #14
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Re: IVIG Infustion for Polymyositis

Quote:
Originally Posted by desertkwr View Post
Hi Peggy,
Thanks for your quick reply. I am fortunate to have private disability insurance and belong to Kaiser Permanente (HMO), they have never refused any treatments including Human Growth Hormone,unfortunately it did not work on me. I have a friend in L.A. who was DX'd with PM the same time I was and he has been getting IVIG treatments once a month since. He still is up and about and walks three miles a day!! I am going to a Pain Specialist this afternoon and I am dreading just getting from my Jeep into the Medical BLGD. I will use my walker but it still is very difficult. Oh well it is what it is and it is sure good to hear from others with the same disorder. One last thing, you mentioned your decreased padding on your feet, I was told that the Myolating (sp) sheild between muscle and bone has been destroyed thus the pain. Have you heard of this?
How cold is it currently in Minnasota, any snow yet?
Hope to hear from you again,

Ken

 
Old 12-02-2009, 05:47 PM   #15
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Re: IVIG Infustion for Polymyositis

It's great to hear from you. How did the pain clinic go? Did you get any good information or help? I am so sorry that it is so hard to get around. I can't imagine the pain and discomfort you have when not having the ability to walk and having so much weakness.

Even though you have private disability are you also able to get Social Security Disability too? I would think you would be as I have a friend who collects both due to sclero.

I've had crams in my legs and feet and they are so darn painful. I had a horrendous taxing on my muscles over Thanksgiving and have paid for it for 3 days now. I just don't think my family has any idea just how bad it is and just how much it hurts. I hate the fact that I'm only 50 years old and have such restrictions physically and it is so frustrating.

I'm so glad the IVIG is helpful to you. Do you have a port in? I had one put in and just had it taken out as I didn't see any need for it to be in. When the lymphoma arrives (I have a protein marker that they are watching and I will have lymphoma at any time) then I'll have it put back in.

So what do you do to keep you busy? Are you able to manage at home?

I have good mornings but by Noon I am done for the day. It's like I hit a brick wall and the fatigue is overwhelming. That's from the scleroderma. Then the muscle pain is really bad because I've been so active during the morning trying to run errands and get stuff done. I am so, so, so thankful for the disability as there is no way I could work even if I wanted to. I wouldn't be a dependable employee unfortunately.

It was good to hear from you. God bless you.

Peggy

 
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