Starting SCIG/ Cellcept Very Soon!

[crypt0cu1t]

Wow, if you have anti HU antibodies that alone should be enough to warrant further investigation. Have you had an MRI?

 

[Hoosierfans]

Wow, if you have anti HU antibodies that alone should be enough to warrant further investigation. Have you had an MRI?

Yeah for whatever reason my neuro didn’t trust the result so he wants it redone. It’s been 4 months since my first test and I *still* haven’t gotten the order from them to have it redone! It’s infuriating!

My internist did order a chest X-ray to check for lung cancer as that is what is commonly associated w Anti-Hu. Thankfully, it was clear.

And yes, I’ve had more MRIs over the last 7-8 years than I can count. All clear. I had a Neuroquant MRI that did show some areas of hypometabolism but the follow up on that was not great (basically a doc took me down the “mold” rabbit hole and we wasted 2 years and tens of thousands on treatmenr that didn’t work).

 

[Gingergrrl]

So far I am not positive on any “traditional” antibodies EXCEPT for Anti- Hu antibodies. My neurologist was a little weird about the result, so he asked that I be retested (still working on that).

Have you had a full panel to check for paraneoplastic autoantibodies (like one of the Mayo Panels)? I find that doctors all have different opinions re: what are considered "traditional" autoantibodies. Some only consider things like Lupus or RA, while others consider all of the paraneoplastic autoantibodies to be very serious but would still dismiss the Cell Trend panels, and others would take ALL of them seriously.

Yeah for whatever reason my neuro didn’t trust the result so he wants it redone. It’s been 4 months since my first test and I *still* haven’t gotten the order from them to have it redone! It’s infuriating!

I hope that you will be able to get the testing re-done. I was never able to find a Neuro that was willing to help me but luckily I had two other doctors who took my case very seriously and I was able to get the treatments that I needed without a Neuro.

My internist did order a chest X-ray to check for lung cancer as that is what is commonly associated w Anti-Hu. Thankfully, it was clear.

Are Anti-Hu antibodies associated w/small cell lung cancer (SCLC)? The most concerning autoantibody that I have (for LEMS) was associated with SCLC and I had to do high resolution lung cat scans for 3-years in a row. I considered doing them even longer than 3-years but my doctor felt that it was not necessary and I trust his opinion.

 

[crypt0cu1t]

Yeah for whatever reason my neuro didn’t trust the result so he wants it redone. It’s been 4 months since my first test and I *still* haven’t gotten the order from them to have it redone! It’s infuriating!

My internist did order a chest X-ray to check for lung cancer as that is what is commonly associated w Anti-Hu. Thankfully, it was clear.

And yes, I’ve had more MRIs over the last 7-8 years than I can count. All clear. I had a Neuroquant MRI that did show some areas of hypometabolism but the follow up on that was not great (basically a doc took me down the “mold” rabbit hole and we wasted 2 years and tens of thousands on treatmenr that didn’t work).

Yeah I've been down the mold rabbit hole as well. For me it was a big waste of time as was the lyme rabbit hole.

The only thing that's ever helped me was IVIG and PLEX slightly.

 

[pattismith]

The rationale for cellcept in my case is that I may have an issue with T cells as well as B cells., we don't k ow if B cells are the main issue because Plasmapheresis only helped very slightly (if at all) I'm not sure..

I am pretty worried about being immune compromised around covid, but its a risk I'm.willing to take honestly.

I hope your SCIG will start soon, do you have something showing up in your T lymphocytes count

 

[Gingergrrl]

@crypt0cu1t I cannot remember if I’ve discussed this w/you but what have your doctors advised you re: the vaccine? I don’t want to take this thread off track but am VERY curious with your history of autoimmunity combined with your proposed treatments, what they are advising re: the vaccine? Thanks.

Edit: I just sent you a PM re: this vaccine question in case you didn't see my post here.

 

[Hoosierfans]

Sorry @crypt0cu1t for kind of hijacking your thread! Didn’t mean to!!! Ok, let me try and answer some questions....

Have you had a full panel to check for paraneoplastic autoantibodies (like one of the Mayo Panels)? I find that doctors all have different opinions re: what are considered "traditional" autoantibodies. Some only consider things like Lupus or RA, while others consider all of the paraneoplastic autoantibodies to be very serious but would still dismiss the Cell Trend panels, and others would take ALL of them seriously.

I was supposed to but I just looked back and they never ran it. Just sent a message to my neuro — hey you forgot to order this!!! Lol! I did have a Small Fiber Motor Neuropathy panel done, and that where the anti- Hu came up.

Are Anti-Hu antibodies associated w/small cell lung cancer (SCLC)?

. Yes. My internist had me to the chest X-ray for that reason. But apparently they can be associated with other cancer or just appear on their own, although it’s rarer.

Yeah I've been down the mold rabbit hole as well. For me it was a big waste of time as was the lyme rabbit hole.

. Yes, I was taken down the lyme rabbit hole as well. I am really encouraged that you responded to IVIG and Plex, gives me hope that after all these years of treatments that haven’t worked, this may really help me.

 

[crypt0cu1t]

Sorry @crypt0cu1t for kind of hijacking your thread! Didn’t mean to!!! Ok, let me try and answer some questions....




I was supposed to but I just looked back and they never ran it. Just sent a message to my neuro — hey you forgot to order this!!! Lol! I did have a Small Fiber Motor Neuropathy panel done, and that where the anti- Hu came up.

. Yes. My internist had me to the chest X-ray for that reason. But apparently they can be associated with other cancer or just appear on their own, although it’s rarer.

. Yes, I was taken down the lyme rabbit hole as well. I am really encouraged that you responded to IVIG and Plex, gives me hope that after all these years of treatments that haven’t worked, this may really help me.

You've gotta keep the hope bro! (Sorry if you're a girl idk I call everyone bro )

 

[Hoosierfans]

Hahaha @crypt0cu1t I will let it pass!

Have an appointment Monday to discuss next steps with my internist. Here’s hoping he’s willing and able to order IVIG / SCIG and get me going down the path!! I am curious, for you and @Gingergrrl, what kind of docs do you see that order your IVIG? And how did you end up finding those docs?

 

[Gingergrrl]

Have an appointment Monday to discuss next steps with my internist. Here’s hoping he’s willing and able to order IVIG / SCIG and get me going down the path!! I am curious, for you and @Gingergrrl, what kind of docs do you see that order your IVIG? And how did you end up finding those docs?

I'm so sorry I missed this and just saw it now! For some reason I don't always get alerts for everything. Was the appt w/your internist today @Hoosierfans? How did it go?

You asked what type of doctor ordered my IVIG and it was my former mast cell specialist (who was an allergist/ immunologist). He was the prescriber so I could do it locally at the infusion center at his hospital. But he prescribed it in conjunction w/my main doctor (who is not local) who is an ME/CFS specialist (and internist). My main doctor treats all types of immune disorders in addition to ME/CFS (Autoimmune diseases, POTS, MCAS, etc).

 

[Hoosierfans]

I'm so sorry I missed this and just saw it now! For some reason I don't always get alerts for everything. Was the appt w/your internist today @Hoosierfans? How did it go?

You asked what type of doctor ordered my IVIG and it was my former mast cell specialist (who was an allergist/ immunologist). He was the prescriber so I could do it locally at the infusion center at his hospital. But he prescribed it in conjunction w/my main doctor (who is not local) who is an ME/CFS specialist (and internist). My main doctor treats all types of immune disorders in addition to ME/CFS (Autoimmune diseases, POTS, MCAS, etc).

Thanks for the check-in @Gingergrrl! The appointment went really well. He said that with my high levels of CellTrend antibodies, other signs of an overactive immune system (high TGFB-1, high MMP-9), and my “non-response” to other treatments (lyme, mold / CIRS) over many years, that the autoimmunity is definetly driving things and therefore IVIG and / or plasmapheresis is absolutely warranted.

We discussed the list of autoimmune antibodies that @Learner1 shared with me (and I added to) to identify any holes in testing and we agreed that a Cunningham panel would be a good idea.

For right now we are staying on the Valcyte (which is starting to make me super sick), and will start working on getting IVIG. He’s going to pull in a local immunologist who he has worked with before on PANDAS cases, to consult on my case and build a case for insurance coverage. I’ve got to call in to the immunologist today and make an initial appointment.

I am so excited to have a great doc in my corner who is willing to fight for me!

 

[Gingergrrl]

Thanks for the check-in @Gingergrrl! The appointment went really well. He said that with my high levels of CellTrend antibodies, other signs of an overactive immune system (high TGFB-1, high MMP-9), and my “non-response” to other treatments (lyme, mold / CIRS) over many years, that the autoimmunity is definetly driving things and therefore IVIG and / or plasmapheresis is absolutely warranted.

Wow that is all great news!

For right now we are staying on the Valcyte (which is starting to make me super sick), and will start working on getting IVIG. He’s going to pull in a local immunologist who he has worked with before on PANDAS cases, to consult on my case and build a case for insurance coverage. I’ve got to call in to the immunologist today and make an initial appointment.

I was never able to tolerate Valcyte (even at a toothpick dose) and it was part of a series of treatments that I tried that did not help me (but everyone is different). It was not until I started IVIG that my illness stopped the progressive downward spiral and I felt hope that it could truly improve.

I am so excited to have a great doc in my corner who is willing to fight for me!

Is he a Neuro or another type of specialist?

 

[Hoosierfans]

Hey @Gingergrrl, he’s a DO / internist.

So I called the immunologist and they can’t see me until late August . I can’t imagine waiting 4 months just for the appointment and then...what...maybe another 2 or 3 to get IVIG started!

I wanted to ask you about your Anti-Hu antibodies. What was the follow up on that. I got a cryptic message from my neuro yesterday that suggested that they re-ran the Anti-Hu test and it returned positive. I looked up what that meant and it’s terrifying. It also means there is no WAY I should be waiting 4 months to see an immunologist!

 

[crypt0cu1t]

Hey @Gingergrrl, he’s a DO / internist.

So I called the immunologist and they can’t see me until late August . I can’t imagine waiting 4 months just for the appointment and then...what...maybe another 2 or 3 to get IVIG started!

I wanted to ask you about your Anti-Hu antibodies. What was the follow up on that. I got a cryptic message from my neuro yesterday that suggested that they re-ran the Anti-Hu test and it returned positive. I looked up what that meant and it’s terrifying. It also means there is no WAY I should be waiting 4 months to see an immunologist!

Anti HU antibodies are pretty serious. This is a BIG finding that NEEDS investigation.

 

[Gingergrrl]

Hey @Gingergrrl, he’s a DO / internist.

So I called the immunologist and they can’t see me until late August . I can’t imagine waiting 4 months just for the appointment and then...what...maybe another 2 or 3 to get IVIG started!

I hope that you will be able to get a sooner appt!

I wanted to ask you about your Anti-Hu antibodies.

I do not have Anti-Hu antibodies and I think you are confusing me with someone else. The two paraneoplastic autoantibodies that I have are the N-type Calcium Channel Abs and Anti-GAD65 (plus the two Hashimoto's Abs and 7-9 of the Cell Trend Abs).

What was the follow up on that. I got a cryptic message from my neuro yesterday that suggested that they re-ran the Anti-Hu test and it returned positive. I looked up what that meant and it’s terrifying. It also means there is no WAY I should be waiting 4 months to see an immunologist!

Can you call the Neuro back or schedule a phone or Telemed appt? Maybe the Neuro can help you to get a sooner appt w/the immunologist?

Anti HU antibodies are pretty serious. This is a BIG finding that NEEDS investigation.

I totally agree. Also, how are you doing @crypt0cu1t? I'm sorry we took your thread off-track!

 

[Hoosierfans]

Anti HU antibodies are pretty serious. This is a BIG finding that NEEDS investigation.

Yeah, reading about them online is really scary. My internist did some follow up when the first test came back positive....so he checked blood counts and had me to a chest X-ray (all clear). I had an MRI w contrast just before the blood test and that was clear too.

I guess that was my question — is there any other follow up to do? Or have we covered the bases that this isn’t associated with some type of cancer.

 

[Gingergrrl]

My internist did some follow up when the first test came back positive....so he checked blood counts and had me to a chest X-ray (all clear). I had an MRI w contrast just before the blood test and that was clear too.

I've never researched Anti-Hu Abs but w/the calcium channel Ab that I have the risk was for Small Cell Lung Cancer (SCLC) and my doctors had me do a "high resolution lung CT" for three consecutive years. Luckily for me they said that this type of CT scan was done without contrast dye (which was ideal since I am allergic to it). They said that an x-ray or a regular lung CT scan (non high resolution) was not enough. Although I am not sure how this would compare to the MRI that you did since I would assume that an MRI would be equally good or better?

Edit: I also did tests for muscle weakness/abnormalities (nerve conduction test, EMG, Sniff Test of Diaphragm, etc) but this was to assess for LEMS which also correlates with the autoantibody that I have and was not part of the cancer assessment.

Edit #2: Now I am confused if the MRI with contrast was of your lungs or of your brain?

 

[Hoosierfans]

I've never researched Anti-Hu Abs but w/the calcium channel Ab that I have the risk was for Small Cell Lung Cancer (SCLC) and my doctors had me do a "high resolution lung CT" for three consecutive years. Luckily for me they said that this type of CT scan was done without contrast dye (which was ideal since I am allergic to it). They said that an x-ray or a regular lung CT scan (non high resolution) was not enough. Although I am not sure how this would compare to the MRI that you did since I would assume that an MRI would be equally good or better?

Edit: I also did tests for muscle weakness/abnormalities (nerve conduction test, EMG, Sniff Test of Diaphragm, etc) but this was to assess for LEMS which also correlates with the autoantibody that I have and was not part of the cancer assessment.

Edit #2: Now I am confused if the MRI with contrast was of your lungs or of your brain?

Oh gosh! My bad....I thought you had Anti-Hu since they were scanning you for SCLC.

yes, I wasn’t clear — the MRI w contrast was for my brain, not my lungs.

So here’s something to brighten our collective day — I just got a hold of my insurance’s IVIG policy and amongst the 3 1/2 pages of listed conditions that they cover IVIG for — Chronic Fatigue Syndrome!! And also peripheral neuropathy, idiopathic neuropathy, idiopathic environmental illness and other things that show up on my medical chart. Woot!!!

 

[Gingergrrl]

Oh gosh! My bad....I thought you had Anti-Hu since they were scanning you for SCLC.

No worries! The main autoantibody that I have (N-type Calcium Channel Ab) is also linked to SCLC so you remembered correctly (it's just a different autoantibody).

yes, I wasn’t clear — the MRI w contrast was for my brain, not my lungs.

Thank you for clarifying and now I can answer your earlier question better. My doctors felt that a regular chest x-ray was not adequate for the SCLC cancer screening and that the gold standard was a high resolution lung CT scan. My main doc had me do it for 3-years in a row until giving me the all clear. It's now over 5-years since learning that I have the N-type VGCC autoantibody and my doctor is confident that it is autoimmune disease in my case (and was never a paraneoplastic syndrome and no cancer was ever found in my case).

So here’s something to brighten our collective day — I just got a hold of my insurance’s IVIG policy and amongst the 3 1/2 pages of listed conditions that they cover IVIG for — Chronic Fatigue Syndrome!! And also peripheral neuropathy, idiopathic neuropathy, idiopathic environmental illness and other things that show up on my medical chart. Woot!!!

I have literally never heard of this before! What insurance do you have? And if you don't feel comfortable posting this (which I totally understand), can you let me know via PM?

 

[crypt0cu1t]

I just wanted to post a quick update here;


I'm feeling pretty hopeless, my SCIG was approved, but the pharmacist said my dose was too high and they lowered it. Now, I have to wait all over again for an authorization for the lower dose T___T

My symptoms are still waxing and waning, I'll have 2 weeks of severe symptoms followed by a lessening of symptoms where I can function a bit better.

I'm really trying not to lose hope but being in a constant state of derealization, dizziness, confusion, visual loss and feeling almost comatose is starting to eat at me.