IVIG - weak response
 

I don’t seem to be getting strong or sustained relief from monthly IVIG treatments. It took 21 days before I got symptom relief from the first round, which seems way too long and only lasted 3 days. The second month, symptom relief started at day 14 and lasted 4 days. This month, it’s day 12 and I am feeling pretty bad. Last night, I had really bad leg/arm weakness, slurred speech and could not swallow my mushy dinner. I have lost hope that IVIG is working for me at all.

Has IVIG failed for others? My MG symptoms are debilitating except for a random few hours here and there where I feel fine, always in the mornings. I cannot walk unaided, have double and blurry vision, generalized weakness, neck weakness, body temperature regulation issues and horrible intestinal cramping from Mestinon. I’m currently on Cellcept (6 months), Mestinon q4h and on a Prednisone taper (currently at 35 MG). If so, what did your Neurologist change? I sent a message to mine and he is halting any further IVIG treatments until he sees me at my next appointment in May.

Hi Barbi-Girl,

I am sorry you are not feeling well, and IVIG is not helping as much as you need right now. When you had your original dose of IVIG, did you just have one dose, or were you in the hospital and had multiple doses over the course of a week or so? It could be possible that they are not giving you enough, or frequently enough.

It is also possible that it is not working for you, and maybe they need to try a different treatment, like plasmapheresis. If you are too weak, and you cannot swallow, this can be dangerous. You did not say if your breathing is also affected, but please consider going to the ER (or A&E, depending on where you live). If you need to contact your Neurologist before you go to the ER, please tell him that you are unable to eat because you are choking too much, even on mushy food. That should get his attention, and make him aware that you are in need of additional help.

Hang in there! Let us know how you are doing.

Take care,
Erin

Erin,

First IVIG was done over 2 days and was termed “loading dose”. It was done in an outpatient infusion center. I had a bad reaction to it and for other reasons, switched Neurologists. The new Neuro wanted to continue monthly infusions but lowered the dose (and switched brand) of IVIG given over 2 days each month. I don’t think it’s working. Those good days I’m having could just be typical MG good days. They don’t last long.

Regarding how I felt last night with not being able to swallow, it was the soft food (mashed potato consistency) which I could not get my throat to move! I could drink water and swallow dryer food. The slurred speech and tiredness were bad and I upped my dose of Mestinon, waited for it to kick in, then fell asleep. I had no breathing issues last night. Today, I’m so very tired, can’t walk or raise my arms. I’m feeling bad but I am not having trouble breathing, although if I push myself to move, I do have shortness of breath.

Barbi-girl

I guess the "loading doses" have gotten cut along with so many other things that are medical. When I began, I had 5 consecutive days in a row with a full dose, followed by one day a month. That was not enough, and I went to every 3 weeks, and eventually went to subq IG. It never really worked. I was a lot like you. I also took Cellcept for about 15 years.

The only thing that has worked for me has been Rituxan. That and Solaris really seem to be making some lasting difference in the lives of folks with MG. Personally, I've had 3 doses of Rituxan since January 2017, and am now on no other MG meds and also am 97% symptom free.

Keep looking for options! The more "failures" you have the quicker you may be able to try one of the "big gun" meds. In the meantime, be very careful. I'm sorry you, too, are suffering.

Barbi-girl, You can't wait until May for further treatments. If you are as bad as you say, a more urgent call to the neuro and/or a trip to the ER is in order. As these guys have said, if IVIG is not working, there are other treatments to try. Plasmapheresis can be done in the hospital.

Don't get to a point where you can't do anything (like even dial 911!). You need immediate care. Did you tell your neuro how badly you are doing? Some people need IVIG more often, or another treatment. To just drop something without adding something else is fairly dangerous!

Sometimes it helps to have another person speak for you. That might scare the doctor into action! ;) But don't you be scared. Just get the help you need NOW.

I hope they can find a regimen that works for you!

:grouphug:
Annie

Annie....I am going to send him a message tonight. He’s really good about responding to emails. I am feeling so bad today.

Barbie I'm going through the same thing. IVIG hasn't never worked for me. I just finished 10 IVIG's and nothing. Went to neuro he cut my statin (for heart stents) and I feel a LITTLE better but we are starting process for Soliras. Waiting for shot. He said Rituxan was too rough for me since my case is very complicated (4 different antibodies). I wish you the best. Best thing for me is no breathing issues. Keep us posted.
Prayers
Mike

I just sent my Neurologist a secured email and laid it all out, how my symptoms are getting worse plus I now have new ones. This is stressing me and the stress is a bad feedback loop for MG deterioration. I do not expect a response from him until tomorrow morning, but he will respond.

I didn’t mention this, but I also have fibromyalgia (over 10 years) and the stress of the worsening MG has caused a fibromyalgia flair and I’m in pain. Again, it is a bad stress feedback loop.

Since I’m seronegative MG, diagnosed by a positive SFMG, I don’t know what treatment will be appropriate for me. Is 6 months on Cellcept long enough to judge it’s not working? For sure, IVIG is not effective. Could the prednisone taper be the root of the deterioration? The last dose lowering was 3/16, so it seems unlikely. I’m due to lower again at the end of this week.

Barbi-girl

One more thing, my experience with the local ERs has been nothing short of pitiful. One ER physician asked ME what Myasthenia Gravis was and could I spell that for them. The other ER physician doubted I had MG (even though it was documented in my MR) and said I was having anxiety causing breathing issues so discharged me. I’m not putting myself through that again unless I’m close to death. It’s just humiliating and a waste of time.

I have found local hospitals useless. One hospital had a panel of 4 neuros examine me and my wife knew more than they did. One even said my problem was caused by a tiny lung cancer I had. As for cellcept I can't really answer that. They say 9-12 months. I have been on it about 6 years but not doing much good now. What ever you do don't take any statins and be careful of any antibotics they give you.
The taper could be a problem. I can't go below 20. Don't you just hate this disease!!!
Hang in there
Mike

I would say yes, the pred taper is likely the cause of your exacerbation. Please ask the doc if you can go back up to the dosage at which you were more stable. You simply have to have some symptom relief at this point.

Some feel that pred is the most horrible thing in the world. While not ideal, it is life-saving and life-giving when you are looking for another option. I took prednisone for the majority of the last 20 years and I'm very happy to be done with it as of last June, but also very grateful that it was available, as I doubt I'd be alive if it weren't.

Sorry the ER docs have not been helpful. I guess I'm extremely fortunate as I have never encountered flat out ignorance when in my tiny local ER. I've had nurses go out and do a search on MG, but no one has ever tried to doubt my symptoms. That is a real shame.

Sorry about the fibro as well. I suspect that you having that, which is often considered a "trash can diagnosis" does not help your situation. Don't let that get you down, however, because YOU are the expert on your body. Be persistent!

Yes, I absolutely HATE this disease! My Neurologist advised that I go to a local ER. I’m not doing it, unless I’m close to death. What’s the point? It will be several hours of being evaluated for a stroke ( it’s not a stroke), then I’ll be discharged with instructions to follow up with my PCP. Been there, done that. How many head CTs can a person safely have?? The Myasthenia will be totally ignored or doubted.

Today, I feel better but I’m strictly resting, not exerting myself in any way. I guess I’ll have to start accepting feeling crappy is the new normal.

Barbi-girl

I have started accepting feeling crappy. I agree with 4-eyes about the Pred. A neuro-muscular Dr told me a long time ago about all these bad drugs and said it was my decision to decide what quality of life I wanted. I know a lot of these drugs we take are bad but the other option is not that great.
Mike

Hi Barbie girl, the most important thing is not to give up. I got diagnosed 3 years ago and switched Neuro as well because first one overdosed me on mestinon and I ended up in ICU for 2 weeks. Now I have a wonderful doctor and she gets me, never doubt me even though I am seronegative and I was diagnosed based on my symptoms only. I carry a note
From my neuro in my wallet stating that I have MG so if I ever end up in ER I show it to the doctor there. Then it's not just what you tell them my diagnoses are but it's an official note so they don't question another doctor.
Anyways, I wanted to tell you my experience with ivig. First I was taking it for 2 days in a row every 4 weeks. I was ready to give up on it as I didn't see results. Then we switched the brand of ivig and things got better. The more times I had my ivig the better I would feel after. I could tell it started working but I would have 2 to 3 good weeks and then 1 bad week right before next infusion. My Dr suggested we switch to infusion every 3 weeks and it's amazing how now I'm symptoms free 98% of time. Stopped taking prednisone April last year and I take mestinon only in the morning 60 mg. Also I'm on Imuran for last 2 years. All I'm trying to say by sharing my experience is that maybe give it little more time? I guess ivig is type of medication that is suppose to make you better almost immediately but in my case I needed time. Also how much ivig you get suppose to be based on your weight. My doctor gave me little extra.
I hope you will get better soon. I remember that I was saying exactly what you are saying now that I should get used to my new normal because I won't feel good like before ever again. Be your own advocate and don't give up. It will get better. It has to!

Having a letter from my Neuro ready to give to ignorant ER doctors is a GREAT idea! Thank you for that eye opening suggestion.

I had given up, as everyone could probably tell from my previous post. Two weeks following my last monthly IV infusions, I noticed my arm and limb weakness were not quite as bad as usual and no slurred speech or swallowing issues. As the days went on, I could feel other MG symptoms being milder. The most noticeable improvement was being able to walk around my house without a walker or cane, which is huge. Now, I still have targeted weakness if I push it too far so I’ve been careful to rest when I feel myself sliding. At night, when I’m just plain worn out, I’m having difficulty breathing if I try to talk or exert myself. So far, this improvement has lasted 11 days.

I can’t wait to discuss this improvement with my Neurologist later this week. I honestly don’t know if it’s the Cellcept finally kicking in ( 5 months) or if it’s due to the IVIG. My continued breathing weakness is a bit concerning but it’s not at crisis level. Yesterday, I noticed that I couldn’t sing a song out loud which was playing on the radio! I got winded and had to stop.

Barbi-girl