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Informal Survey re: IVIG

Gingergrrl

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@Gingergrrl I got notified of your latest post on the other thread--but myself have no insight, I don't know anything about the uses of Cortef. I will say I don't think it's the glycine, that's just a much better more physiologically tolerable medium than dextrose and sodium. It could be a combo of 1) passive antibodies 2) there is a polysaccharide in IVIG that I recall reading some years ago they had isolated and thought was largely responsible for the immune modulation and 3) there are probably metabolic modulators, and molecules [to use the vernacular of this thread] that we don't understand, that work as well. Glad you are feeling better!!

I found the quote from @boohealth and moved it over here and I bolded the main part that I wanted to reply to. I have another thread where I inquired how IVIG could give me a 3-4 week complete remission from MCAS so I am not certain, boohealth, if you are replying to parts of that thread or strictly to this thread which is what I wanted to clarify.

Do you mean that my (prior) 3-4 week complete remission of MCAS from IVIG could be due to passive antibodies, polysaccharide (sugar?) in IVIG causing immune modulation, or metabolic modulators and molecules? Or did you mean that these things could be leading to my improved blood pressure and arm strength (and not the MCAS remission)?

Multiple people have sent me very interesting articles re: IVIG and I have read two of them but still have several to go. I am really wanting to learn more about how the autoimmune dose (and even the lower dose) is helping with all of these aspects (muscle strength, improved BP, prior MCAS remission, and possibly fighting viruses by this slight fever!)

Even though I am tagging BooHealth, would love to hear from anyone with ideas. And apologies to those who sent me articles that I have not read yet. They are all printed out and on my desk!
 

Gingergrrl

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16,171
Hi @Gingergrrl . I would do it several days in a row to be sure it's slow. Have a cushion of several hours. Hydrate well orally and w IV before but not w isotonic saline unless you can change or flush the line. Sounds very promising

We cross-posted but I will definitely do it for two days in a row if permitted to raise the dose. All my doctors said that 36 grams is the highest dose that I would ever do in one day. So if I do 50 grams, it would be a split dose of 25 grams for two days in a row (at the slowest infusion rate possible of 35 ml/hr for 6-7 hours). I try to hydrate well orally but drinking enough water remains a challenge for me b/c I rarely feel thirsty. But for IVIG, I try to force it b/c I know it is important.

The nurses know that you cannot mix saline with Gamunex b/c it crystalizes so I get D5 Dextrose solution prior to the Gamunex while I am getting the Solu-Cortef (all 30 min before we start the infusion as a pre-med). However you actually can flush the line with saline (if you stop the Gamunex during the flush) and the nurse showed me this in the new package insert b/c I actually asked (thanks to you telling me)! And I would have a cushion of at least 16 hours between infusions (if I do the split dose) and then each one is at a three week interval.

But my gut instinct is that my MCAS doc will want me to do one more infusion at 36 grams before we raise it (but I could be wrong and will find out on Thurs). I love this infusion center b/c they are a cancer center and treat patients with such kindness and respect, they do a LOT of IVIG so they understand it well, and they get many MCAS patients from my doc and understand that I have to take my own pre-meds (like Atarax vs. Benadryl) or dye-free Tylenol, etc, and are not only okay with it but support it!
 

boohealth

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@Gingergrrl I think the IVIG is helping your MCAS, which may be pathogen driven (why does one get MCAS? Maybe a genetic tendency but imho something is really annoying those mast cells constantly). It might work by all the above methods I mentioned--I doubt it's just one.

You might even do fine at 36. If your symptoms went into complete remission on 36, that might be a perfectly fine dose for you. I'm always a less is more person. IVIG is hard on the kidneys--keep monitoring kidney function please--and so those high doses might be well tolerated or might be a strain on the kidneys. Also it increases blood viscosity thus raising the risk of thrombosis. I don't think docs necessarily pay enough attention to this, but it's something to keep in mind with higher doses (yes you can monitor for that, too, via clotting time)
 

Gingergrrl

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16,171
@Gingergrrl I think the IVIG is helping your MCAS, which may be pathogen driven (why does one get MCAS? Maybe a genetic tendency but imho something is really annoying those mast cells constantly). It might work by all the above methods I mentioned--I doubt it's just one.

I absolutely believe that the IVIG is helping my MCAS but I am not sure that the MCAS is pathogen driven. My feeling is that severe mold exposure for three years in prior rental pushed my immune system to MCAS when it just couldn't fight it anymore. I had been recovering from mono/EBV and was basically well for ten months when we moved into the rental with toxic mold so my immune system never stood a chance IMO. I also believe that I had sub-clinical MCAS all of my life when I first read the list of symptoms from the Masto Society.

You might even do fine at 36. If your symptoms went into complete remission on 36, that might be a perfectly fine dose for you.

My MCAS symptoms went into complete remission at a dose of 24 except that I continue to take all MCAS meds 2x/day plus Cortef. If I stop those meds, I am certain the remission is over.

In addition, I have severe breathing problems, pulmonary restriction, muscle weakness and multiple autoantibodies that we think might be weakening my neuromuscular junctions and phrenic nerve functioning to diaphragm. We want to see if IVIG at the true autoimmune dose can block or lower the antibody. The 3-4 week remission of the MCAS was something that we did not expect and was amazing and I think it would have continued if I did not attempt to taper off of Cortef.

I'm always a less is more person.

I am too and I take micro doses of just about everything but with IVIG, I really want to make it up to at least the beginning of the autoimmune dose or I will always wonder if it could have helped me.

IVIG is hard on the kidneys--keep monitoring kidney function please--and so those high doses might be well tolerated or might be a strain on the kidneys. Also it increases blood viscosity thus raising the risk of thrombosis. I don't think docs necessarily pay enough attention to this, but it's something to keep in mind with higher doses (yes you can monitor for that, too, via clotting time)

So far my kidney functioning is normal. I don't believe blood viscosity is an issue for me. I did the anti-phospholipid panel (Hughes Syndrome) prior to IVIG and it was normal. My SED rate is six and people have told me that it would be around 1-2 to have a blood viscosity issue. In addition, b/c of my MCAS, I bleed and bruise very easily which I think means my blood is thin? However, thank you for mentioning this to me and I am going to ask my MCAS doc at my appt on Thurs.

PS @Gingergrrl I sent you a PM yesterday.

I got the PM and was having IVIG all day yesterday and was not able to answer it yet. I mentioned it to you in the other thread but you might not have seen it. I said in there that it is all good and no hard feelings on my part whatsoever. I got about 8-9 PM's yesterday and am trying to catch up! But I will definitely respond to it as soon as I can.
 

boohealth

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Sounds good, as do your docs. Still, monitoring kidney function and clotting time is wise with high doses--I think the kidney monitoring is more common than considering the blood viscosity issues. In the doc's office years ago where I first tried (low dose--I do very low dose) IVIG, two HIV patients on high doses (simply as a preventative and a sort of immune boost, as they were on ARVs, but for HIV, most meds are free)--had heart attacks. I don't know if it was a coincidence, but I wondered.
 

Gingergrrl

Senior Member
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16,171
Sounds good, as do your docs. Still, monitoring kidney function and clotting time is wise with high doses--I think the kidney monitoring is more common than considering the blood viscosity issues. In the doc's office years ago where I first tried (low dose--I do very low dose) IVIG, two HIV patients on high doses (simply as a preventative and a sort of immune boost, as they were on ARVs, but for HIV, most meds are free)--had heart attacks. I don't know if it was a coincidence, but I wondered.

Anything is possible so I really do not know if it was a coincidence or some other factor due to their HIV or other medical issues? I do not have any traditional cardiac problems but I do have POTS/tachycardia and I do get chest pain with exertion. My cardio 100% supports me having IVIG and is not involved with it but referred me to a Neuromuscular doc who also endorsed it for me and it was her letter that helped with the insurance approval.

I am looking at my most recent tests and my creatinine and GFR were totally normal but the test called "BUN" (I forgot what that stands for) was slightly elevated at 24 and top of range was 20. The nurse at IVIG said it was okay but I plan to ask my doc on Thurs. I have had this test elevated in years past, long prior to IVIG, so I think it is okay. Does it relate to dehydration b/c I often do not drink enough.

You mentioned to monitor blood clotting time and I assume that is PT, PTT and INR. In the past when I did those tests, my blood clotting time was slightly slow and I now suspect this is b/c of MCAS. I actually have not done those tests recently so I guess I could ask for them?
 

boohealth

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@Gingergrrl I am not a doctor but I'm not surprised about the BUN being high. I am fairly certain the ivig can do that.

I'm not an expert on clotting time either. Those tests sound right but I am pretty sure you can do an in office finger prick and count the minutes it takes to clot. You might google this. There is a range. From all you are saying it doesn't sound an issue for you but theoretically over time as ivig normalizes you, clotting time might speed up?

I agree on trying the high dose but I'm your place I might do that for a while and if all was good, taper down to the lowest dose where I maintained health. There is unlikely to be a single dose for everybody.
 

Gingergrrl

Senior Member
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16,171
@Gingergrrl I am not a doctor but I'm not surprised about the BUN being high. I am fairly certain the ivig can do that.

I'm not a doctor either (as we can all tell LOL) but I remember that the "BUN" test was high for me back to 2013 when I first got sick so I know it pre-dates my IVIG. So far doctors have not been concerned by it and I think it might relate to dehydration?

I'm not an expert on clotting time either. Those tests sound right but I am pretty sure you can do an in office finger prick and count the minutes it takes to clot. You might google this. There is a range. From all you are saying it doesn't sound an issue for you but theoretically over time as ivig normalizes you, clotting time might speed up?

I hadn't thought of that but it makes sense that IVIG could normalize your clotting time. I will get this checked out eventually.

I agree on trying the high dose but I'm your place I might do that for a while and if all was good, taper down to the lowest dose where I maintained health. There is unlikely to be a single dose for everybody.

The high dose has a range up to 108 grams for me and starting around mid 50's. My goal is just to make it to the bottom of the range (50's) in a split dose, two day infusion and not to the top of the range which would be a four day infusion. I calculated the number of units my insurance allowed and will need a new authorization to do this so will have to wait and see what my doctor wants me to do on Thurs. My next infusion will be around Sept 30th but don't know the dose yet.

I want to stay with the higher dose if tolerable (and if permitted by insurance) as this is the only way to truly know if it will be able to reduce the autoantibodies that we suspect are affecting my ability to breathe and my muscle strength. I am willing to take any and all risks that could come from this. ITA that there is no one single dose for everyone and am just trying to find the best dose for me by starting slow and building up (and using techniques like the pre and post-meds, slow infusion time and speed, etc, to increase my chances of toleration).
 

Gingergrrl

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16,171
I wanted to post an update and don't see my mast cell doc for two more days so I have not discussed this with him yet. I had a 3-4 week remission (for lack of a better word) from my MCAS symptoms post IVIG and it was absolutely one of the most amazing things I have ever experienced. Now, it has reversed and I am reacting to basically all foods again where I need to take my rescue med (Atarax) both yesterday and today. It is not at the level of anaphylaxis but it is bad again and it is so frustrating to have had this remission and now it is gone. I am going to go back to the most basic foods again like lamb and rice and hope I can reverse it.

I am not sure if I am reacting to this 3rd batch of IVIG or if it is b/c I tried to taper off Cortef and that Cortef was a crucial piece of the puzzle that was keeping the allergic reactions in check but I just did not realize the level that it played. It never appears to be doing anything until I try to taper and then I lose the ability to eat food so I guess I will be on it for the rest of my life. I stopped the taper the day prior to IVIG and resumed the full dose (15 mg) for five days but my reactions are worsening. I had a high dose of Solu-Cortef as pre-med with the IVIG plus a small dose of Decadron so in theory, I should not be having any allergic reactions now even if just from the steroid but I am!

I had 3-4 weeks of being able to eat all these amazing fruits, vegetables, yogurt and even things like hot chocolate and eat dinner in a restaurant and it's all gone now. I am trying not to cry but it is so frustrating. Somehow I'd gotten used to being the person in the wheelchair but being the person in the wheelchair who also cannot eat food at someone's home, at an event, or even just in my own home makes me like a complete freak. Now I have to be watched and monitored again b/c of everyone's fear that I could progress to needing an EpiPen.

I am sure my doctor will say not to increase the IVIG to the autoimmune dose if I am not tolerating the 36 grams but part of me thinks this reaction is from me attempting to lower the Cortef and might have occurred even in the absence of IVIG (but I am not certain of this of course). I am absolutely fine with taking the IVIG as slow as possible if I knew my insurance would allow me this luxury but am afraid they really will not and I lose my chance.
 

godlovesatrier

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Hey @Gingergrrl

Are you able to sum up how useful ivig was to you in the end now that it's 5 years on and whether you feel it was instrumental in getting you to where you are now.

Also are you able to tell us your level of function now Vs what it was in 2016?

And did the ivig eventually fully resolve your mcas or did you continue to take various mcas medications to control it?

I'm considering sub q ivig for very low igm and low igg.

Thanks,
 

Gingergrrl

Senior Member
Messages
16,171
Are you able to sum up how useful ivig was to you in the end now that it's 5 years on and whether you feel it was instrumental in getting you to where you are now.

I am happy to summarize my experience with IVIG but wasn't able to re-read this thread right now (so please let me know if there was anything specific from earlier in the thread that you wanted me to address).

Overall, IVIG was incredibly helpful for me and it was the combination of high dose IVIG and Rituximab that led to my remission. Each played a critical role in my case and I would not be where I am today without each of them (and the sequence that I did them).

I did IVIG from approx July 2016 to July 2018 and when I wrote the last post in this thread (in 2016), I was still very new and early to IVIG and still had a LOT to learn about it. It is currently approx four years since my last IVIG infusion (in case that makes the time-frame more clear)?

Also are you able to tell us your level of function now Vs what it was in 2016?

My level of functioning when I started IVIG was almost non-existent. I could not stand or walk without a wheelchair for more than about 30 to 60 seconds, I could not drive, and I required assistance from family, friends, and a paid caregiver throughout the week. I had extreme shortness of breath, chest pain, severe muscle weakness, uncontrolled POTS, and uncontrolled MCAS with constant anaphylaxis reactions. I had reached the point of being allergic to all food but water and ended up in the hospital.

My level of functioning now is that I can walk unlimited distance (several miles) as long as it is on a flat surface. I still have some difficulty with stairs but I can climb one flight of stairs if there is no other option (vs. for many years, I could not climb one single stair/step). I no longer require assistance from anyone and I can take care of everything at home that I need by myself and I can drive.

My muscle strength and my breathing are completely normal again and once this went into remission (from the IVIG & Rituximab), the muscle weakness never returned. In my case, this weakness was from Lambert Eaton Syndrome (LEMS) and ME/CFS turned out not to be my diagnosis (even though I also had severe POTS & MCAS which commonly occur with ME/CFS).

And did the ivig eventually fully resolve your mcas or did you continue to take various mcas medications to control it?

For MCAS, I still take Ketotifen daily (1 mg) vs. I used to take 4 mg. I no longer take any MCAS meds except the Ketotifen (vs. I used to take 8-9 MCAS meds just to eat a few bites of food without anaphylaxis). Prior to IVIG, I was receiving IV Benadryl and then Benadryl injections. I still carry an EpiPen in my purse and wear a Medic Alert bracelet (for life) and will always be considered an anaphylaxis risk.

I avoid all dyes (in food & meds) and everything I ingest is dye-free. I also still carry Atarax (which is similar to Benadryl) as my "rescue med" but I very rarely need it (maybe once a month at the most)? If I am doing something that could trigger an allergic reaction (like dental work), then I will take the Atarax as a pre-med to be safe. I no longer take Zyrtec & Pepcid (my prior H1 & H2 blockers) b/c I don't need them unless I'm taking Zyrtec for regular allergies (not MCAS) but this is also rare at present.

I currently take 6 prescriptions daily (for different things) but the only one for MCAS is the Ketotifen. I debate (with myself) if taking 6 meds (plus 5-6 supplements) to maintain this level of functioning is truly considered "remission" (because I took zero meds before I got sick). But at this point, I use the word "remission" for lack of a better word and will never use the word "cure".

I will always have to be very careful and I feel like my remission is fragile. I avoid anything that is immuno-stimulatory and could re-trigger my MCAS, POTS, LEMS and other autoimmunity that is in remission. I also continue to have endocrine issues that I carefully manage (with thyroid medication & hydrocortisone) and I continue to take Atenolol for POTS.

I'm considering sub q ivig for very low igm and low igg.

I never had low IgM or IgG and my IgM was actually very elevated to the point that my doctor ran some tests to make sure that I did not have MGUS or cancer. Luckily, I did not and we suspect that the elevated IgM was all part of the autoimmunity in my case. So I never did SubQ IVIG (SCIG) b/c it would not have been a high enough dose for autoimmunity (in my case).

Edited to Add: In case it is helpful, the brand of IVIG that I used was Gamunex.
 
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godlovesatrier

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Thank you. Great summary for anyone who's in your ball park with symptoms I think. Although extemelet hard work getting ivig on insurance but even so.

As for me I think while it might help I'd have to be more severe to give it a go. But it seems like this and the ritumixab worked really well for you.

Thanks again.
 

Booble

Senior Member
Messages
1,359
I am happy to summarize my experience with IVIG but wasn't able to re-read this thread right now (so please let me know if there was anything specific from earlier in the thread that you wanted me to address).

Overall, IVIG was incredibly helpful for me and it was the combination of high dose IVIG and Rituximab that led to my remission. Each played a critical role in my case and I would not be where I am today without each of them (and the sequence that I did them).

I did IVIG from approx July 2016 to July 2018 and when I wrote the last post in this thread (in 2016), I was still very new and early to IVIG and still had a LOT to learn about it. It is currently approx four years since my last IVIG infusion (in case that makes the time-frame more clear)?



My level of functioning when I started IVIG was almost non-existent. I could not stand or walk without a wheelchair for more than about 30 to 60 seconds, I could not drive, and I required assistance from family, friends, and a paid caregiver throughout the week. I had extreme shortness of breath, chest pain, severe muscle weakness, uncontrolled POTS, and uncontrolled MCAS with constant anaphylaxis reactions. I had reached the point of being allergic to all food but water and ended up in the hospital.

My level of functioning now is that I can walk unlimited distance (several miles) as long as it is on a flat surface. I still have some difficulty with stairs but I can climb one flight of stairs if there is no other option (vs. for many years, I could not climb one single stair/step). I no longer require assistance from anyone and I can take care of everything at home that I need by myself and I can drive.

My muscle strength and my breathing are completely normal again and once this went into remission (from the IVIG & Rituximab), the muscle weakness never returned. In my case, this weakness was from Lambert Eaton Syndrome (LEMS) and ME/CFS turned out not to be my diagnosis (even though I also had severe POTS & MCAS which commonly occur with ME/CFS).



For MCAS, I still take Ketotifen daily (1 mg) vs. I used to take 4 mg. I no longer take any MCAS meds except the Ketotifen (vs. I used to take 8-9 MCAS meds just to eat a few bites of food without anaphylaxis). Prior to IVIG, I was receiving IV Benadryl and then Benadryl injections. I still carry an EpiPen in my purse and wear a Medic Alert bracelet (for life) and will always be considered an anaphylaxis risk.

I avoid all dyes (in food & meds) and everything I ingest is dye-free. I also still carry Atarax (which is similar to Benadryl) as my "rescue med" but I very rarely need it (maybe once a month at the most)? If I am doing something that could trigger an allergic reaction (like dental work), then I will take the Atarax as a pre-med to be safe. I no longer take Zyrtec & Pepcid (my prior H1 & H2 blockers) b/c I don't need them unless I'm taking Zyrtec for regular allergies (not MCAS) but this is also rare at present.

I currently take 6 prescriptions daily (for different things) but the only one for MCAS is the Ketotifen. I debate (with myself) if taking 6 meds (plus 5-6 supplements) to maintain this level of functioning is truly considered "remission" (because I took zero meds before I got sick). But at this point, I use the word "remission" for lack of a better word and will never use the word "cure".

I will always have to be very careful and I feel like my remission is fragile. I avoid anything that is immuno-stimulatory and could re-trigger my MCAS, POTS, LEMS and other autoimmunity that is in remission. I also continue to have endocrine issues that I carefully manage (with thyroid medication & hydrocortisone) and I continue to take Atenolol for POTS.



I never had low IgM or IgG and my IgM was actually very elevated to the point that my doctor ran some tests to make sure that I did not have MGUS or cancer. Luckily, I did not and we suspect that the elevated IgM was all part of the autoimmunity in my case. So I never did SubQ IVIG (SCIG) b/c it would not have been a high enough dose for autoimmunity (in my case).

Edited to Add: In case it is helpful, the brand of IVIG that I used was Gamunex.


That's a remarkable recovery, GingerG.
It's very inspiring.
 

Gingergrrl

Senior Member
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16,171
Thank you. Great summary for anyone who's in your ball park with symptoms I think. Although extemelet hard work getting ivig on insurance but even so.

No problem and I am glad that I could help! It was unbelievably challenging to get the IVIG approved by insurance, and it was an ongoing battle, but my doctors managed to do it which I am forever grateful.

As for me I think while it might help I'd have to be more severe to give it a go. But it seems like this and the ritumixab worked really well for you.

I agree that each individual case is different and I did a full year of IVIG and was a responder to it before I started the Rituximab. It was definitely the right choice for me b/c all tests showed that I had B-cell driven autoimmunity and I did not have any active infections. But for other people, it would not be the right choice like you said.
 

hapl808

Senior Member
Messages
1,396
My muscle strength and my breathing are completely normal again and once this went into remission (from the IVIG & Rituximab), the muscle weakness never returned. In my case, this weakness was from Lambert Eaton Syndrome (LEMS) and ME/CFS turned out not to be my diagnosis (even though I also had severe POTS & MCAS which commonly occur with ME/CFS).

How was LEMS diagnosed in your case? I have wondered about some disorders like LEMS or MS or similar, but I felt the neurologists that I've seen weren't very useful. After examination, they usually referred me to rheumatology or whatever. One offered to do a biopsy or EMG, but I crash so easily even from a blood test that I wasn't sure the value of that. Of course there's always a concern with ME/CFS that there are different or additional disorders that could be missed. I have a lot of connective tissue problems, muscle weakness, etc.
 

Gingergrrl

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16,171
How was LEMS diagnosed in your case?

It was a combination of my symptoms, autoantibodies on blood-work, EMG & nerve conduction testing and pulmonology testing (and also ruling out that the autoantibodies were not due to cancer or a paraneoplastic syndrome).

I have wondered about some disorders like LEMS or MS or similar, but I felt the neurologists that I've seen weren't very useful.

I never found a neurologist (or neuromuscular specialist) that was willing to help in my case either. I saw three Neuro's in 2016 who were all awful and mean-spirited. The tests that they ran were very helpful but they were not willing to prescribe the treatments that I needed so my doctors proceeded without having a Neuro on board.

One offered to do a biopsy or EMG, but I crash so easily even from a blood test that I wasn't sure the value of that.

I have never done a muscle biopsy but I did do an EMG in 2016.

Of course there's always a concern with ME/CFS that there are different or additional disorders that could be missed. I have a lot of connective tissue problems, muscle weakness, etc.

What do you mean by connective tissue problems? I see this term a lot but am never certain what it means in each individual case. Did you have CCI or issues with your neck? I have chronic neck pain that shoots down my right arm (but in my case it is not due to CCI and is a separate issue).

I guess if you are trying to assess if your case is similar to mine, I found that one of the main differences between myself and many things that I read here on PR was PEM. I never had a delayed reaction to exertion (24 to 48 hours) like others described and my reactions were literally instant.

If I crossed what I called "the invisible line" (which might have been trying to stand up from the wheelchair for more than 30 seconds), then the reaction was instant (my lungs stopped expanding and I was gasping for air, chest pain, muscle weakness, etc). It was not related to how much I rested vs. physical muscle activity if that makes sense?

I also never had cognitive issues/brain fog and had no limits with cognitive or mental exertion. I could spend unlimited hours doing cognitive or social tasks with no negative consequences but if I stood up from the wheelchair to attempt to open my front door, I would have an immediate reaction that could make me suffer for days (from POTS, chest pain, shortness of breath, muscle weakness, etc).

Plus by 2015, I had the severe MCAS reactions and constant anaphylaxis (and that part I did not have in 2013 and 2014). I hope this is helpful and I continue to hope that some aspect of what I went through is helpful to others.
 

hapl808

Senior Member
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1,396
I guess if you are trying to assess if your case is similar to mine, I found that one of the main differences between myself and many things that I read here on PR was PEM. I never had a delayed reaction to exertion (24 to 48 hours) like others described and my reactions were literally instant.

This is quite different for me, as I often find when I overdo it, I feel great…for a few hours maybe. Then I usually feel more tired, and then the following day the real misery starts.

I also never had cognitive issues/brain fog and had no limits with cognitive or mental exertion. I could spend unlimited hours doing cognitive or social tasks with no negative consequences but if I stood up from the wheelchair to attempt to open my front door, I would have an immediate reaction that could make me suffer for days (from POTS, chest pain, shortness of breath, muscle weakness, etc).

I have constant brain fog, low grade headache, slightly blurry vision, PEM from mental exertion or social activity, etc.

What do you mean by connective tissue problems? I see this term a lot but am never certain what it means in each individual case. Did you have CCI or issues with your neck? I have chronic neck pain that shoots down my right arm (but in my case it is not due to CCI and is a separate issue).

For me, most of my pain is muscle or tendon pain, not joint pain. If I pick up a heavy shopping bag, my bicep will hurt for hours or days. When I was more moderate, if I did an activity like carrying a suitcase or something, I might wake up the next day with a pulled muscle that could takes days or weeks or longer to heal. I also can't strengthen my muscles. For years I tried resistance bands, physical therapy, etc. All of which seemed to probably make things worse. But I couldn't really accept or understand the danger of GET type things for this type of disorder.

My neck hurts all the time, but I don't think it's likely CCI even though I haven't had the MRI for it. The reason I think it's unrelated is cold and anti-inflammatories don't help it that much, but things like antibiotics or allicin improve my neck pain significantly. Always feels like there's some infection I can't get rid of.
 

Gingergrrl

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16,171
This is quite different for me, as I often find when I overdo it, I feel great…for a few hours maybe. Then I usually feel more tired, and then the following day the real misery starts.

We are definitely different in this regard and there has never been a point in my illness (at my most severe or now) that I felt better if I overdid it.

I have constant brain fog, low grade headache, slightly blurry vision, PEM from mental exertion or social activity, etc.

I have never experienced any of these symptoms.

For me, most of my pain is muscle or tendon pain, not joint pain.

In this regard we are similar and my pain is also muscle and tendon pain and never joint pain.

When I was more moderate, if I did an activity like carrying a suitcase

This was another area where I seemed to differ from others on PR in that many people described that they could carry a suitcase in the moment but then got delayed PEM and were very sick for days/weeks. Vs. when I was sick (before IVIG & Rituximab put me into remission), I could not lift a suitcase, or even things that were objectively lightweight to the average/normal person. Back then, if someone had (hypothetically) offered me a million dollars to lift a suitcase for a few seconds, I could not have done it. I remember being in tears when I could no longer open my own water bottle or turn on the shower faucets by myself.

I also can't strengthen my muscles. For years I tried resistance bands, physical therapy, etc. All of which seemed to probably make things worse. But I couldn't really accept or understand the danger of GET type things for this type of disorder.

I was the same (although possibly for a different reason). In my case, I had autoantibodies that were weakening my muscles (it related to calcium ion channelopathy although I still lack the science background to fully explain it). Prior to my treatment, there was no form of "GET" or PT or exercise that could have helped me b/c my muscles were progressively weakening from the autoantibodies. I could not have done resistance training (at that time) to save my life. But after IVIG (and while still getting Rituximab), I was able to do PT and Rehab Pilates to strengthen my muscles and to reverse the de-conditioning from 4 yrs of using a wheelchair.

My neck hurts all the time, but I don't think it's likely CCI even though I haven't had the MRI for it.

I had the cervical MRI (either 2018 or 2019?) and I did not have CCI. My original neck injury was from a very bad car accident in 2006 followed by an injury to my arm from the antibiotic Levaquin in 2010.

The reason I think it's unrelated is cold and anti-inflammatories don't help it that much, but things like antibiotics or allicin improve my neck pain significantly. Always feels like there's some infection I can't get rid of.

I avoid antibiotics like the plague (even when I might need them) because of what happened to me from Levaquin and b/c I am allergic to so many of them (and would need to get the antibiotic from a compounding pharmacy so it is dye-free). Even when an antibiotic lists a "rare" side effect that will affect one in a million people, I am that one person. I've never had a situation (as an adult) in which an antibiotic helped to improve my symptoms. I am going out shortly in case I am slow to reply to this thread (but will check it again later tonight).
 

junkcrap50

Senior Member
Messages
1,246
I wanted to clarify that I did not have the IVIG b/c of the anti-GAD65 autoantibodies (which cause the GABA/ Glutamate imbalance). I had IVIG to treat LEMS which caused me severe muscle weakness that was weakening my lungs and also to treat my POTS & MCAS. The fact that it ended up also helping reduce the anti GAD65 autoantibodies was an additional bonus :)

I had (high dose) IVIG for two full years for autoimmunity (everything that I mentioned above). I did not feel better after the first one b/c the infusion speed was WAY too high which caused severe headache & side effects. But in the upcoming months when the infusion speed was lower (and we split each infusion cycle into a 3-day split-dose, etc), then I started to have significant improvements from IVIG.

@Vineyard1 thank you so much for your detailed responses and I do have another question re: the dosage and my lack of math translation skills!

My MCAS doc said the immune deficiency dose is approx 400-500 mg/kg and the autoimmune dose is approx 1000-2000 mg/kg.

So it goes by weight and my closest current weight is approx 120 lbs which on internet I translated equals approx 54 kg.

I cannot figure out how to relate this number to your 40 gram infusion? I Have been playing around and dividing or multiplying different things but not getting anywhere near the numbers I was told.

Do you know how I would calculate the ratio? I plan to start very slow and build to the autoimmune dose and b/c of MCAS my infusion would be 8-10 hrs long with pre-meds etc but still can't figure out the numbers!

Any help to the math challenged would be great!

ETA: Lastly I've been told by several people that with Gamunex (what I think I'll be getting but not certain yet) that saline clogs the line and causes crystallization so they'd use dextrose solution instead or nothing. It sounds like Gammaguard doesn't have that issue and saline is okay?

Do you have any info or sources or anything I can learn more about the dosing of IVIG? I see you say it's 1000-2000mg/kg vs 400-500mg/kg. But I would like to do more research. I've brought up high dose IVIG for autoimmunity and two docs who use it occassionally (for CFS/low IgG & other for PANDAS) didn't know anything about that. I'm considering it or a sibling who has/had PANDA (now an adult), now vax injured & worsened after COVID infection (so now CFS). Also what type of doctor treated you? A neurologist or rheumatologist?