Finally started IVIG

[wigglethemouse]

All future IVIG infusions were done at a MUCH slower speed and the nurses followed my MCAS doctor's orders precisely and I never had that problem again. I hope this helps!

Thanks @Gingergrrl . I hope that gives @crypt0cu1t some hope being that you also had such a bad reaction at first, although a different kind.

I was really interested in how quickly people see a response from IVIG after reading @crypt0cu1t almost instantaneous improvement after horrible side effects waned. You've mentioned Dr. Jill Schofield a few times and I found my answer in this paper by her.
https://www.ncbi.nlm.nih.gov/pubmed/29781817

RESULTS:
There were 38 patients, 84% female and mean age of 28.4 years. Of patients, 83.5% improved on IVIG as defined by at least 20% improvement in the composite autonomic symptom scale 31 and/or functional ability score. The mean pretreatment functional ability score was 21% (mostly bedridden), which improved to a mean of 74% (nearing able to return to work/school) for responsive patients after at least 1 year of IVIG. The mean time to the first sign of response was 5.3 weeks. There were no serious adverse events. The Mayo autoimmune dysautonomia panel antibodies and traditional Sjögren antibodies were present in only 13% and 8% of patients, respectively, but antiphospholipid antibodies and novel Sjögren antibodies were present in 76% and 42% of patients, respectively.

CONCLUSIONS:
There is increasing evidence that IVIG is safe and effective in a subset of patients with autonomic disorders and evidence for autoimmunity. A 4-month IVIG trial should be considered in severely affected patients who are refractory to lifestyle and pharmacological therapies. Antiphospholipid antibodies and novel Sjögren antibodies are often present in these patients and correlate with a high response rate to IVIG.

The last sentence was interesting. Annie Oaklander also did a study that showed 77% of patients responded if they had similar autoimmune markers and also small fiber neuropathy.
https://www.ncbi.nlm.nih.gov/pubmed/29403541

Hoping you and your doctor can come up with a plan that helps you regain your improvement @crypt0cu1t. Thanks for sharing your story.

 

[Gingergrrl]

Thanks @Gingergrrl . I hope that gives @crypt0cu1t some hope being that you also had such a bad reaction at first, although a different kind.

@wigglethemouse I am happy to share as much of my medical journey as possible and am glad that it has been helpful for others. In case you missed it (and I am often confused which thread I am in and have to scroll up to the top to check !), @crypt0cu1t posted this on Mon in Whitney's thread and he is doing a lot better now:

I was on in the verge of suicide, bedridden for 4 months and seriously sick but after IVIG, I've gone back to work part time, see friends regularly and function at about a 7/10.

Yay! Great news and I am hoping it is still the case.

I was really interested in how quickly people see a response from IVIG after reading @crypt0cu1t almost instantaneous improvement after horrible side effects waned.

I think there are some that have an acute autoimmune trigger (like Guillain Barre) and 4-5 days of IVIG completely cures them. This was not the case for me and my symptoms had progressively been getting worse from 2013 to 2016 (when I started the IVIG).

You've mentioned Dr. Jill Schofield a few times and I found my answer in this paper by her.

I have mentioned her b/c she is literally researching and treating my exact scenario and is a wealth of information. I have watched some of her videos on Dysautonomia International and e-mailed her about a year ago and she actually replied! She felt the course of my treatment was exactly what I should be doing given my eleven autoantibodies and symptoms.

She is (sadly for me) in Colorado vs. my state but I know she is helping a lot of people. Her new center is called "Center for Multisystem Disease" and sounds very similar to my doctor whose clinic is "Center for Complex Diseases". I wish I could clone them both and have these types of clinics all over the world. Here is the info and link for Dr. Schofield in case helpful for anyone:

Center for Multisystem Disease
Jill R. Schofield, MD
Autoimmune Disease and Dysautonomia Practice located in Denver, CO

https://www.centerformultisystemdisease.com/

The last sentence was interesting. Annie Oaklander also did a study that showed 77% of patients responded if they had similar autoimmune markers and also small fiber neuropathy.

In my case, I did not do a biopsy for small fiber neuropathy and never tested for Sjogrens b/c Dr. K said that I had so many other autoantibodies, and abnormal autonomic testing (TTT, QSART, etc) that regardless of the outcome, it would not change my treatment plan of high dose IVIG and Rituximab.

I have learned from this that in many cases, people have a collection of pathogenic autoantibodies that might not meet the full criteria for one illness but they can still make a dramatic improvement, or even remission, of their symptoms with IVIG and/or Ritux (or the proper combination of autoimmune treatments for their individual case).

 

[Stacey1121]

I apologize ahead of time for the long response here but feel like the details might spark some thoughts.

I am so glad I found this thread - lots of background but it is relevant to my (ultimate) questions. I have had ivig infusions for a 2+ years and have slowly worked my way up to 120 grams of Gamagaurd spread over two days every three weeks. What started as CVID (at 30 grams) then upped the dose bc of neuropathy\CIDP and finally autoimmune. I never had a single autoimmune marker positive until the infusions. My IGG started out at about 380 (range 700-1400). In 2015 I was diagnosed with 2 forms of borrelia, babesia divergens, ehrlichia, finally with a PCR test from DNA Connexions) because all of my Igenex tests\bloodwork had a few suspicious bands but were never positive. I never remember having a tick bite but I grew up in Chicago and went to summer camps in both WI & MI so it does make sense. I also had elevated titers for a whole host of other critters (Chlamydia pneumonia, Mycoplasma, HHV-6, EBV, Cytomeglis, etc) before I had lyme treatment in 2015 at Envita medical center in AZ for 4 months. I also had mold toxicity from a house we were living in in CA (we moved back to CO 2 years ago where I have steadily improved) until recently.

I did two years of binders and got rid of all of the mycotoxins and had all of my lyme treatment before I started IVIG as they mistakenly told me kill the lyme and your immune system will work again (WRONG!). It seemed everyone in treatment (all IV's - abx, ozone, hydrogen peroxide, high dose vitamin c, artesurnate, & heavy metal chelation) was herxing except for me - I barely herxed.

Leftover symptoms have been fatigue, on and off brain fog, Reynaud's, neuropathy, tons of autonomic nervous dysfunction - I even had the AN system balloon surgery which did absolutely nothing in LA. I tried LDN to help regulate my immune system (helped a little for a little while but then made me crash) and I can't take the other drug (can't remember the name) bc I have retinal issues. I did finally start to herx when I got to CO in late 2016 after some IVIG infusions and Vit C infusions. I was def improving up until Christmas this year. I have been on the 120g for the past 6 or 7 infusions and switched from Octagam to Gamagaurd bc of side effects and have steadily improved to about 60-70% of what I was on a good day. However, during xmas I got a concussion and it’s been a freaking nightmare since - I had a dental X-ray machine fall on my head (don’t ask). I really thought I was fine and I have NO idea if that is what has set off a cascade of worsening returning symptoms but here I am .

The problems did not start right away but now I am back to 25% functionality most days. What is interesting is that I think I am herxing BIG time (more than I ever have) with low grade fever, body aches, headaches, neck pain - pain that is not structural, brain fog, big increase in AN symptoms and debilitating fatigue. Since my last infusion I have had a daily fever (and I never used to get a fever - ran very low at about 97) with all of the other symptoms for the past almost 2 weeks. It did not start right away - but I had a couple of vitamin C infusions to see if they would help and since then fevers and increased symptoms. Maybe it was the hit on the head (but the symptoms really picked up about 4 weeks ago and it’s been almost 8 weeks since the hit on my head). My IGG levels are at about 2200 so maybe now I have enough immunoglobulins to actually fight the infections? I just had blood taken to see if any of the titers have significantly increased. So far very low blood counts (RBC, WBC) but I always have that and iron does not seem to help.

Supposed to have my first 60g infusion of this 3 week cycle tomorrow - maybe it will help but I am also nervous I might feel even worse. Just curious if any of you have any thoughts or ideas. I was SO glad to find Jill R. Schofield, MD info on this thread - I am absolutely going to make an apt to see her. Thank you in advance for reading and/or any ideas you want to throw out. Sometimes it takes a diff perspective (as I am sure you are all aware) and my family I am sure is worn out by now. I can’t barely stand to think about it anymore (as I am SURE you can all relate )

I hope you all are having a great Sunday!

 

[crypt0cu1t]

Hey everyone, hope you're all doing well! Sorry I haven't been replying to this thread like I promised. I have been pretty busy lately with work and my new girlfriend who also happens to have ME/CFS lol.

Although I am still nowhere near as disabled as I was before trying IVIG, I can definitely feel my derealization, headaches, dysautonomia and other symptoms slowly creeping up and getting worse each week.

Dr. Chheda feels that I will keep declining without treatment, so I will be restarting IVIG at a very low dose once a week to hopefully build my.tolerance to it and work my way up to 1g/kg. If this doesn't work, then rituxan is the other option, but being that I did respond so well to high dose IVIG (Aside from the ulcers and anemia) I'd say that makes me a great candidate for rituximab.

I'm going on vacation to Monterey this week and will most likely be starting treatment when I get back, so I'll update everyone then. Feel free to PM me or follow me on Instagram @crypt0cu1t if you guys want to keep in touch because I'm always on there

 

[Gingergrrl]

I have been pretty busy lately with work and my new girlfriend who also happens to have ME/CFS lol.

Dr. Chheda feels that I will keep declining without treatment, so I will be restarting IVIG at a very low dose once a week to hopefully build my.tolerance to it and work my way up to 1g/kg. If this doesn't work, then rituxan is the other option, but being that I did respond so well to high dose IVIG (Aside from the ulcers and anemia) I'd say that makes me a great candidate for rituximab.

This sounds like a good plan.

I'm going on vacation to Monterey this week and will most likely be starting treatment when I get back, so I'll update everyone then. Feel free to PM me or follow me on Instagram @crypt0cu1t if you guys want to keep in touch because I'm always on there

I'm not on Instagram but will definitely be following your updates here on PR. I am so thrilled with all of your improvements!

 

[crypt0cu1t]

So I wanted to post a quick update. I started IVIG on Friday at a very small dose of just 5 grams. I was fine for the first day after the Infusion and felt the same as I did before, but then yesterday 2 days after the infusion, I started to develop severe fatigue, muscle weakness and a severe stiff back but no headache. No ulcers (thank God!)

It seems like IVIG at least in low dose has exacerbated my original symptoms and put set me back quite a bit, so we have cancelled the following infusion until I get some blood work back and find out what's going on.

After my almost 3 month remission with very minor symptoms, I almost seemed to forget how severely Ill I once was and it's pretty depressing to know that my last hope was IVIG and it seems to not be working..

I'm wondering if my remission after my first IVIG was simply a coincidence now and if autoimmunity is really even my problem..

If anyone has any advice I'd really appreciate it.

 

[ebethc]

So I wanted to post a quick update. I started IVIG on Friday at a very small dose of just 5 grams. I was fine for the first day after the Infusion and felt the same as I did before, but then yesterday 2 days after the infusion, I started to develop severe fatigue, muscle weakness and a severe stiff back but no headache. No ulcers (thank God!)

It seems like IVIG at least in low dose has exacerbated my original symptoms and put set me back quite a bit, so we have cancelled the following infusion until I get some blood work back and find out what's going on.

After my almost 3 month remission with very minor symptoms, I almost seemed to forget how severely Ill I once was and it's pretty depressing to know that my last hope was IVIG and it seems to not be working..

I'm wondering if my remission after my first IVIG was simply a coincidence now and if autoimmunity is really even my problem..

If anyone has any advice I'd really appreciate it.

from what I understand, the immunoglobulins that are injected into patients have been taken from MANY different donors, and you don't get the same "batch" w every infusion... so, you could react to one batch (ie, from donor group A) and then not react from the next batch (donor group B)... This one thought, so ask your doc if they think you might be reacting to a particular donor batch b/c I believe this is one of the problems w IVIG... it's somewhat unpredictable even if the overall effect is positive.... however, it sounds like you had a particularly bad reaction..

who's your doc?

 

[Stacey1121]

I am not sure what all of your health issues are but I have been getting ivig for years and it definitely has it's ups and downs. The brand you got may have something to do with it - there are many different additives with different brands - it is possible (and maybe likely) that you are reacting to something in the actual product\brand. I would bet it would be an additive over a donor but anything is possible. Another possibility is that you are experiencing some kind of die off of a virus or bacteria called herxing. You got a very very small dose - my first dose was 10 grams - but it could be killing something and now you have toxins which can make you feel really bad. You might want to make sure you are doing some kind of detoxing in case that is it. Last possibility is that it did activate auto immune issues - but it was such a tiny dose that would be my last guess. Feeling bad after an infusion is VERY common - especially feeling tired. Absolutely call your doctor and tell them what specifically you are experiencing - your specific symptoms will help decipher what is happening. I am happy to help answer any other questions you have. Sorry about the backtrack - sometimes you have to take a few steps back before you go forward again - although I personally know that SUCKS!

I just reread your symptoms and it really does sound like herxing to me, which in the long run is a good thing if it is but it is not fun to go thru.

Take good care.

 

[crypt0cu1t]

I am not sure what all of your health issues are but I have been getting ivig for years and it definitely has it's ups and downs. The brand you got may have something to do with it - there are many different additives with different brands - it is possible (and maybe likely) that you are reacting to something in the actual product\brand. I would bet it would be an additive over a donor but anything is possible. Another possibility is that you are experiencing some kind of die off of a virus or bacteria called herxing. You got a very very small dose - my first dose was 10 grams - but it could be killing something and now you have toxins which can make you feel really bad. You might want to make sure you are doing some kind of detoxing in case that is it. Last possibility is that it did activate auto immune issues - but it was such a tiny dose that would be my last guess. Feeling bad after an infusion is VERY common - especially feeling tired. Absolutely call your doctor and tell them what specifically you are experiencing - your specific symptoms will help decipher what is happening. I am happy to help answer any other questions you have. Sorry about the backtrack - sometimes you have to take a few steps back before you go forward again - although I personally know that SUCKS!

I just reread your symptoms and it really does sound like herxing to me, which in the long run is a good thing if it is but it is not fun to go thru.

Take good care.

I am not so sure I have lyme & co. To be completely honest. I've had extensive testing (Quest, Igenex, Labcorp) and it's all been completely negative.

I dont seem to have any evidence of any kind of infection which is what scares me because the only thing that has shown up is autoimmunity and inflammation.

My symptoms are Dry eyes, dry mouth, double vision, light sensitivity, severe fatigue, confusion, GI issues, visual snow and a few other dysautonomia symptoms.

 

[fredam7]

I received 2 messages this morning asking where i was because I didn't show to IVIg . I get what you're dealing with .

If IVIg helped you and you just need to get through those side effects , maybe it's worth it .

On the other hand , if you feel you're too sick to endure it , then maybe back off . I get the only hope thing and that's why I just went through the hell.

I got stiff back , neck , horrid head pain , chills , sweating , total mental confusion , mucus pouring out , cough , fatigue and being so sick and wishing for death . I mean horribly sick to the point the neuro said she wanted to stop treatment but I wanted to keep going

So that is my experience if it lends any support to your own . Maybe we are too sick
To take on this drug because I saw that most people getting IVIg were reading or watching tv or even sleeping ! Like nothing was happening .

Those of us who get violently ill, I don't know , maybe we are too weakened and I dislike that term but it seems to be the case .On the other hand , it comes down to if you have anything left to lose .

For me , I have nothing left to lose so I kept going and now have made a firm decision on what happens next . For you , if you are traveling and are conducting a relationship and have some quality of life , maybe you don't want to force a potentially dangerous treatment

Are the IVIg symptoms one thing but you were also set back overall because of IVIg ?

I wondered if the horrible agony was a sign it was "working " but I don't know . No one knows much of anything.

To note , I got 75g over 3 days and am a thin person . No idea if amount is the main issue .

Im sorry you were let down . IVIg can really be a hell unleashed and I don't know why it's that way for some people. I tend to think the thousands of donors is the main reason . The fillers can't cause weeks of horrid symptoms . It's like it helps in some ways and is hell in others .

 

[roller]

My symptoms are Dry eyes, dry mouth, double vision, light sensitivity, severe fatigue, confusion, GI issues, visual snow and a few other dysautonomia symptoms.

i may confuse you with someone else, who wrote here a fluid-filled cyst was found in the head?

perhaps such a thing could contribute to adverse reactions since even more liquid is taken up (more pressure, out of homeostasis)?
did you ever have any other IVs before without side effects, like saline IV or so?

 

[Gingergrrl]

I started IVIG on Friday at a very small dose of just 5 grams.

Did you do SCIG since it was such a small dose or were you still doing IVIG?

so we have cancelled the following infusion until I get some blood work back and find out what's going on.

Do you know what blood tests are being run?

it's pretty depressing to know that my last hope was IVIG and it seems to not be working.

Why do you feel that IVIG is your last hope? I relate to the feeling and for several years I thought that with each thing I tried... "Famvir is my last hope... Valcyte is my last hope, etc" (<--- that is all stuff that I said about myself) but I was wondering if you are just feeling discouraged or if there is some evidence re: IVIG being your last hope?

I'm wondering if my remission after my first IVIG was simply a coincidence now and if autoimmunity is really even my problem.

From many conversations with you in the past, I do not feel that it was simply a coincidence and your autoantibody testing was very strong indicating autoimmunity.

from what I understand, the immunoglobulins that are injected into patients have been taken from MANY different donors, and you don't get the same "batch" w every infusion... so, you could react to one batch (ie, from donor group A) and then not react from the next batch (donor group B)...

This is very true and the nurses at my infusion center (where I did two years of IVIG) said that each batch has over 100K donors. I had one batch in my second year of IVIG that I had such a horrific reaction to that my doctor had me speak to the pharmacist at the infusion center/ hospital to make sure that I never received that batch again. She was amazing and checked all the lot numbers so when I came the next month for my infusion, I received a different batch.

i may confuse you with someone else, who wrote here a fluid-filled cyst was found in the head? perhaps such a thing could contribute to adverse reactions since even more liquid is taken up (more pressure, out of homeostasis)? did you ever have any other IVs before without side effects, like saline IV or so?

@roller I think your memory is correct and @crypt0cu1t does have a fluid filled cyst behind his eye (unless I am confused, too)? That is an excellent point and I do wonder if it contributes to the intra-cranial pressure that you experience from IVIG? I got horrible headaches from IVIG without having any kind of cyst. It is worth asking about.

 

[crypt0cu1t]

I received 2 messages this morning asking where i was because I didn't show to IVIg . I get what you're dealing with .

If IVIg helped you and you just need to get through those side effects , maybe it's worth it .

On the other hand , if you feel you're too sick to endure it , then maybe back off . I get the only hope thing and that's why I just went through the hell.

I got stiff back , neck , horrid head pain , chills , sweating , total mental confusion , mucus pouring out , cough , fatigue and being so sick and wishing for death . I mean horribly sick to the point the neuro said she wanted to stop treatment but I wanted to keep going

So that is my experience if it lends any support to your own . Maybe we are too sick
To take on this drug because I saw that most people getting IVIg were reading or watching tv or even sleeping ! Like nothing was happening .

Those of us who get violently ill, I don't know , maybe we are too weakened and I dislike that term but it seems to be the case .On the other hand , it comes down to if you have anything left to lose .

For me , I have nothing left to lose so I kept going and now have made a firm decision on what happens next . For you , if you are traveling and are conducting a relationship and have some quality of life , maybe you don't want to force a potentially dangerous treatment

Are the IVIg symptoms one thing but you were also set back overall because of IVIg ?

I wondered if the horrible agony was a sign it was "working " but I don't know . No one knows much of anything.

To note , I got 75g over 3 days and am a thin person . No idea if amount is the main issue .

Im sorry you were let down . IVIg can really be a hell unleashed and I don't know why it's that way for some people. I tend to think the thousands of donors is the main reason . The fillers can't cause weeks of horrid symptoms . It's like it helps in some ways and is hell in others .

Your experience really made me feel better knowing that I'm not alone in dealing with severe IVIG side effects. Thanks for sharing!

I just dont understand how such a low dose made me so I'll. The only things I can think if are
1) IVIG killed off some sort of chronic infection I have which I think is unlikely
2) such a low dose actually boosted my immune system and caused a flare of my autoimmunity whereas a high dose would be more modulating (if I could tolerate it)

 

[crypt0cu1t]

Did you do SCIG since it was such a small dose or were you still doing IVIG?



Do you know what blood tests are being run?



Why do you feel that IVIG is your last hope? I relate to the feeling and for several years I thought that with each thing I tried... "Famvir is my last hope... Valcyte is my last hope, etc" (<--- that is all stuff that I said about myself) but I was wondering if you are just feeling discouraged or if there is some evidence re: IVIG being your last hope?



From many conversations with you in the past, I do not feel that it was simply a coincidence and your autoantibody testing was very strong indicating autoimmunity.



This is very true and the nurses at my infusion center (where I did two years of IVIG) said that each batch has over 100K donors. I had one batch in my second year of IVIG that I had such a horrific reaction to that my doctor had me speak to the pharmacist at the infusion center/ hospital to make sure that I never received that batch again. She was amazing and checked all the lot numbers so when I came the next month for my infusion, I received a different batch.



@roller I think your memory is correct and @crypt0cu1t does have a fluid filled cyst behind his eye (unless I am confused, too)? That is an excellent point and I do wonder if it contributes to the intra-cranial pressure that you experience from IVIG? I got horrible headaches from IVIG without having any kind of cyst. It is worth asking about.

We are checking for hemolytic anemia since I developed it last time after ivig.

Maybe I was being slightly dramatic, but I'm terrified of rituxan if I do have an infection, it could harm me further and that's the only other treatment my dr is willing to try in terms of immune therapy if IVIG fails because she cant get PLEX approved

I hope this wasnt a coincidence. I mean my illness was relapsing remitting before IVIG, and it would relapse like every week or two but after IVIG my relapses just seemed to stop. My gut tells my it wasnt a coincidence and my dr also feels it wasnt a coincidence.

 

[crypt0cu1t]

I got stiff back , neck , horrid head pain , chills , sweating , total mental confusion , mucus pouring out , cough , fatigue and being so sick and wishing for death . I mean horribly sick to the point the neuro said she wanted to stop treatment but I wanted to keep going

What exactly are you taking it for if you dont mind me asking? Do you have any autoantibodies at all?

 

[fredam7]

What exactly are you taking it for if you dont mind me asking? Do you have any autoantibodies at all?

I am taking it for small fiber neuropathy and a very bad large fiber disorder which is centralized and an immune disorder as well.

I do have a mast cell disorder , they say MCAS , but I was told by the allergist that IVIg does nothing for MCAS and told the same by one of the big MCAS dr's but I hoped it would somehow normalize it by strengthening me. However , over activity of mast cells or over production , is an entirely different problem and mine got much worse during treatment .

I have a lot of neuro symptoms , everything from severe pain to a lot of trouble breathing , speaking , eating , inability to hydrate , blood pressure too low, burning etc .

My labs showed cryoglubuanemia and antibodies to what the dr said "has no name ". I did ask what she was talking about but she yelled "it has no name!" Jesus I'm medically traumatized to say the least

So I can't say I have a clear grasp on the bloodwork , I've looked it over myself. I also was told I have immune deficiency which is true , that I believe .

I guess I'm unclear because they were saying how urgent it was to start IVIg and the approval happened so quickly but no one would answer my questions really .

I'm usually very particular and have to know all the details and be sure but I just got so ill I wanted to die and I don't even know why I did IVIg , I guess to be sure I tried everything

I told the dr at the last visit that this was my last hope and she seemed to agree and told me to get a psychiatrist to deal with the reality that I will have all these symptoms and can't do anything about it . She added I can live in thid condition for even 5 more years ! That deveststed me and I left

I don't think increasing the dose will help the side effects , they may get really bad . I ended up in the er and they wanted to do a spinal tap so I ran away . It was good you started lower

But there is something going on here that we have these huge reactions , they're worse than the typical side effects . I too have problems with anemia .

A heads up if they give you an iron infusion , do not let them administer venifer in only a few hours .

Do you react to a lot of medications and food?

Sorry this is so disjointed, I can't answer clearly because I know some of my diagnoses are certain but I feel I don't know the other big piece , the one that makes IVIg intolerable . But my guess is that yes, we have a serious problem with our immune system and dumping a bunch of foreign donors globulins in there , is serious gas on the fire

 

[fredam7]

I forgot , I too wondered about the batches . I had gamunex c and did horribly . Then gammaguard then back to gamunex and I wonder if the gamunex was from a batch that wouldn't work for me. But gammaguard was hell too.

The problem is that there are so many donors . The hematologist told me ahead of time he was against it because it takes just one donor that you can't accept and big problems . Later he said there was no other options and I was deteriorating and to go ahead if I wanted

But it's just so much foreign substance for people who are really compromised which i did know deep down was a very bad idea . I mean , it wasn't unnoticed that even my Med for Hashimotos became a problem after 15 years or that Zyrtec or methadone or anything I took , made me very sick and worse so why would I think IVIg was a good idea ?

I don't know what else there is . I was told it's my last shot and well, it was . I took valtrex for a lip herpes , hsv 1 as I'm sure everyone alrwsdy knows , and my mucus improved .i told this fo
A dr at Mayo and she wrote in my notes that I was delusional thinking valtrex helped my mucus , in so many words . But it did . Maybe we have some virus .

I was so bad after IVIg thid last time but After 3 weeks of being so ill and the coincidental valtrex , my mucus got better and my bad flu feeling got a little better . I then took anotjer gram and yes im still sneezing and blowing my nose but it's a huge difference .

i know nothing of valtrex and our conditions and maybe it was a coincidence but maybe you have a virus .

 

[Gingergrrl]

We are checking for hemolytic anemia since I developed it last time after ivig.

Have you been able to check for this yet? If you have it, what is the treatment?

Maybe I was being slightly dramatic, but I'm terrified of rituxan if I do have an infection, it could harm me further and that's the only other treatment my dr is willing to try in terms of immune therapy if IVIG fails because she cant get PLEX approved

I definitely didn't think that you were being dramatic at all and I really related to it b/c with almost every treatment that I did in prior years, I thought, "this is the one" and I had high hopes. It is definitely possible that you do not tolerate IVIG but I wouldn't rule it out yet. There are variations in brand, and also between batches, that can really make a difference. In addition to the infusion speed and what pre-meds you take. I forgot, are you using Gamunex or another brand?

I also totally agree with you that you would not want to try Rituximab if you have active infections. If this is something that your doctor is considering, you would test for active infections, for Lyme, for the JC virus, for TB & hepatitis, etc. You would also check your IgG subclasses and lymphocyte subset profile.

I hope this wasnt a coincidence. I mean my illness was relapsing remitting before IVIG, and it would relapse like every week or two but after IVIG my relapses just seemed to stop. My gut tells my it wasnt a coincidence and my dr also feels it wasnt a coincidence.

I don't believe it is a coincidence either and agree with you and your doctor.

 

[crypt0cu1t]

also totally agree with you that you would not want to try Rituximab if you have active infections. If this is something that your doctor is considering, you would test for active infections, for Lyme, for the JC virus, for TB & hepatitis, etc. You would also check your IgG subclasses and lymphocyte subset profile.

Dr Chheda doesnt think that I have any active infections at all, she thinks that I have Autoimmune Autonimic Ganglionopathy and MCAS (Even though I dont get rashes or anything)

I just really dont get how IVIG pretty much permanently worsened me back to my pre HDIVIG levels... I'm getting symptoms that I havent had in a long time.

 

[crypt0cu1t]

Okay so I was doing so research and found that Low dose IVIG actually can be pro inflammatory according to this article
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2801035/

It states the following:
"Paradoxically, IgG can exert both pro- and anti-inflammatory activities, depending on its concentration. The proinflammatory activity of low-dose IVIg requires complement activation or binding of the Fc fragment of IgG to IgG-specific receptors (FcγR) on innate immune effector cells."

So maybe this is why I'm feeling so much worse on a very low dose (5g) vs improving from a high dose? What do you think @Gingergrrl @Learner1 @Jesse2233 (I know Jesse hasn't been on for a while, but maybe I'll get lucky and he sees this)