Hello everyone! hope yall are all doing well.. I had a question about IVIG .. I had been getting it every 2 weeks, and am trying to stretch it out to every 3.. though I don't know how good of an idea it is, as I get jello fingered, can't swallow well, waddle and jello legs during the few days I have before that 3 week mark (I'm due for it on Monday, but typing is difficult as my fingers are so jelly like)!

As nice as it has been doing every 3 weeks, i think i probably need to do every 2 again.. but honestly my veins were getting so messed up from it.. and still are that I don't think they can tolerate it any more often.. Does anyone else have this problem?? My veins HURT after the IVIG.. from where they put the IV (usually wrist).. all the way up the arm, and both legs will have phlebitis/tender veins for at least 2 weeks afterwards..they just feel raw.. anyone have this?? I used to get rashes from the IVIG.. but no longer do

What do yall think would be the next step- since I don't have a firm diagnosis.. is trying an immunosuppressant what most people do, or mestinon just to see if it helps? They think I may have crohns too, so in that case an immunosuppresant would be what I would need for that. The thought of suppressing my immune system scares me so much as I am always sick from my kiddos already!

Most of us on IVIG for a prolonged period have been on large doses of mestinon, prednisone and another immunosupressant before we started IVIG. It doesn't sound like you are being treated for the MG - IVIG as a monotherapy isn't going to do it if immunomodulation isn't being done. A lot of us on longterm IVIG in addition to our other meds will have a port placed as our veins can no longer tolerate repeated infusions. Sometimes you just have to swallow, know that there are side effects to all of these meds and deal with them as best you can. It's up to you to decided what quality of life you want to have and if taking meds is part of it it's up to you. Good luck on your decision.

Robocar is exactly right. Those are the exact words my Dr. put to me. However if I were younger I would think long and hard about it.
Mike

I have to differ with Robocar in that I have never been treated with immunosuppressants. There are also many people in the Facebook MG groups on IVIG and Mestinon alone. My neuro and my hem/onc doc who does the IVIG at a Cancer Center are both adamant that IVIG is far safer than immunosuppressants and are avoiding them. I have been on IVIG for 2 1/2 years. My neuro said the reason why most MG patients don't go on IVIG first is because of the prohibitive cost and the difficulty in getting insurance approval long term.

With all that said, I hope to avoid immunosuppressants forever because the side effects are irreversible and can be life threatening. As hard as it is to have to spend 2 days every other week at a Cancer Center for the rest of my life, I choose that.

As for your question, I am in the exact same boat as you with the scheduling. I have been on every two weeks for 2 1/2 years. I did improve and went down to every 3 weeks and did just fine on that for a while, but I went into crisis a month ago. There were a few factors; I skipped a week of IVIG, had a tragic death in the family, and overdid it a bit at Christmas. Since the crisis, I've been back to every two weeks. It will be a little bit before I try and space it out to every three again, but I'll do it.

A couple questions and hints; when I went down to every three weeks, my hem/onc doc increased the dosage a bit to help carry me through. And above all else, I HIGHLY RECOMMEND getting a port! I went through a year of those painful sticks, blown veins, and all the bruises that would sometimes still be there two weeks later when I went back...getting a port was the best thing I ever did! No more lines or IVs hanging out of your hands or arms, it saves your veins, little to no pain with your infusions, it's dreamy!

Thanks yall so much... so do yall get sore veins with the IVIG??

The sticks of the IV's don't bother me so much, and as of now I still have decent veins (I never let them use my AC veins, as I want to save those for emergencies - yes I'm paranoid. but I don't want to get in an emergency and not have any access).. I worry though.... If my peripheral veins feel so irritated and mad, if I got a port, would that just mean the deeper "more important" larger veins were mad!? I can deal with discomfort.. it's not fun, but it's the least of my worries.. I just don't know if the reaction I have is adverse, or normal? or if getting a port would eliminate the vein irritation part?

robocar- I think my Dr was trying to avoid the immunosuppressants, as I work around sick people, and I have two small kids who are always sick... they have their own risks too.. I think they have the mentality that IVIG is the lowest risk of all these things.. they tend to add on cellcept or imuran if IVIG alone isn't working.. they seem to not be as big of fans of steriods..

Mike- when you say if you were younger you'd think harder about it - what do you mean? You would WANT the immunosuppresants, or be more afraid of them? I did steriods once (i started out on 60mg though).. and was so weak and felt like I was gonna drop dead.. I realized from here that I should have been started low and worked up though.. it was awful!

Tracy - are you on anything else besides IVIG? I'll put more thought into that whole port idea too- thanks! I think I need to do it every 2 weeks, but with full time job, kids etc.. it's hard to find the time.. though when I can't breathe or swallow or walk well I feel completely stupid! The best I ever did was the 2nd round of IVIG (did 3 days of loading dose in the hospital, and then 3 weeks later had another round and BAM I felt CURED!!! ) I often wonder if I should have another 3 day loading dose to boost me up?? You ever do this? I feel like I build a tolerance or something!?!

If I were younger (I'm 72) I would think harder about cellcept, imuran or prednisone. I have been at this for 2 1/2 years and had 4 skin cancers removed in the last 12 months. Now I'm not saying it was the drugs but could well be. I now have a couple more places that need checked next appt. Imuran made me so sick, I lost 35 pounds. High doses of Prednisone got my legs so weak I could only lift my feet 2 inches. IVIG hasn't done much for me nor has Mestinon. I am on 17 1/2 mg of Prednisone, 2500MG Cellcept and Mestinon 60mg 4x a day. I'm doing ok but what works for me may not work for anyone else. I have 4 positive antibodies.
Mike

I don't mean to offend you at all but heading down the immunosuppressant road is like putting the cart before the horse.

Do you believe you have been thorough diagnosed for everything that is going on with you? If not, maybe you too need more doctoring.

We've already had this discussion about cancer and immuno's. If cancer runs in your immediate family or you've already had it, they are contraindicated.

More isn't always better. Drugs are useful but they can make you worse.

You really need a smart internist who can pull of this together for you. Do you have one? Did you ever find out why your blood was so dark (it was you, right?).

Ditto on the port. Though I know you are also at risk for infections. And a port can cause issues with clotting, which is also a concern for you.

I hope you will consult more doctors to find answers before you look for solutions. I don't envy the situation you are in.


Annie

Mike- yea.. I feel like I have been doing so much better since it's been cold. I'll never forget right before I crashed almost 2 years ago, I got out of a hot shower and couldn't move or breathe.. I just lied there like a lump of jello on the floor.. ugh.. last time I took a hot shower!

Annie - thank you.. No, I don't feel like I have been thoroughly diagnosed whatsoever.. I Have a good internest, I have a GI dr, a rheumy, a neuro (i've seen like ten or fifteen of those).. i've had cardiology evals too.. I've had so much testing.. They are talking about seronegative MG and doing a SFEMG... however I do have numbness too (documented non length dependent neuropathy diagnosed by epidermal nerve biopsy).. .. So it's hard for everyone to wrap their head around all of this - the fast crazy onset, post partum too.. is it all one disease process causing everything, or do I have multiple issues..

I took time off from the being a lab rat for a while, as it took months and months and months of going from dr to dr and SOO much testing that once I got treated and got IVIG.. i needed just to simply live my life best to my ability and take a break, as my soul was beat down from it all!

I have been doing well, and as I said the mentally tough part is - do I accept this is as good as I can get, I am soooo thankful for where I am at.. but every second of everyday I feel sooo abnormal still.. so I also wonder if I am cheating myself and my family by not pushing forward and trying to find a better treatment ... though everything has risks.. and if something went wrong I'd regret it! (My mind is tired from thinking about this all)!!

Anyhow.. I am getting back on the testing bandwagon.. I saw my internest last week , my GI dr tomorrow, rheumy next week and neuro in March or May (can't remember).. so I still have PTSD from my previous dr's appointments and HATE going to them with a passion.. but I am going to give it another try! Though multiple dr's are talking immunosuppresants, and I dont' know if I'm up for that! My sibling has crohns and is feeling so much better on meds.. I have a raging family history of autoimmune stuff.. ugh

Have you been tested for Celiac Disease and IgA (if it's low, it can be a false negative)?

Do you take acidophilus or eat yogurt to keep good bacteria in your body?

If you have clinical PTSD, you have to seek out an expert to talk to about it or it WILL get worse. There are tools you can use to keep it from happening too much, even while doctoring. Although I have to say that I saw a new doctor last week and had one of my worst PTSD episodes ever. I was able to work my way out of it though! This is not a thing you should handle on your own. There's a new "touch" therapy they're doing with Vets and other people with PTSD and it seems to be working.

I wish you had a very good immunologist to pull some of this together for you. And if you haven't demanded to get that immunoglobulin testing for your records, just write a letter to the medical records department and get it. They are expensive tests and you don't want to have them redone if you don't have to! It's your right to have the results.

I know how much doctoring can wear you out and it's useful to take a break from time to time. You can get to the point where all you see is the health issues and not WHO you are! I am not the sum of my health issues but it can feel that way, especially when you see yet another doctor and have to list everything wrong with you. I try not to think about what's wrong with me on a daily basis but what's RIGHT with me.

It has not been a fun time for you. The more difficult the situation is you're going through the more fun and the more coping skills you'll need. The most important thing is taking care of yourself, no matter what that means.


Annie

Thanks so much Annie!!! I appreciate that!

As far as the IgA, I was tested once, but i was already on IVIG, so they weren't sure if it was accurate.. it was normal

The celiac, I have been tested for several times as well.... however I was already gluten free.. As i had GI issues that started the entire mess.. I was desperate to feel better, I was hospitalized for the GI stuff .. and researched it all, and have 2 family members with posible celiac.. so i went strictly gluten free and have been for 2 years now.. however I'm starting to have GI flares despite the diet now that I'm stretching the IVIG further out. I still stay gluten free, as i'll try anything to help, and frankly if I can control something in this whole mess, then that makes it feel better.

as far as the PTSD thing.. it's mostly from that first dr appointment when he said he thought I had ALS ( i was 30 years old, just had a baby.. it was a friday afternoon he said it so casually and then said see ya monday for the the emg etc).. ugh.. now I fear going to the Dr and hearing bad news again.. I was alone in the office at that time.. I'm getting better about it.. but I have feared the Dr's offfice extremely since then.. ugh.. too many practioners out there that need to brush up on their patient and clinical skills!