My IVIG treatment has been approved by insurance and my first infusion (Gammagard 500mg) is scheduled for next Thursday. I'm a little anxious about it, but mostly in a good way. I'm hoping it is uneventful with little to no adverse side effects. I suppose no medication is without potential side effects but its never fun to read about them.

I have some other random questions to ask for anyone willing to entertain them.

1) About how many people are active members of this board? Ballpark figure?

2) Do you continue to mask and use great caution to avoid crowds or sick people? Or after receiving IVIG infusions have you relaxed your caution around others and just stay clear of obviously sick people? 

3) Does anyone else run low-ish platelets (mine are 110-140)? Just wondering if it is directly related with this syndrome? Or with MGUS?  Do platelets leak or concentrate during attacks? 

4) Is anyone else being treated for B12 deficiency? I was dxd B12 deficient almost 25 years ago (after 3 years of very frightening symptoms and 8 specialists).  My MGUS diagnosis came about 20 years later, but I was interested to learn there is an increased association between B12 deficiency and MGUS, although they don't know why. It seems everything just keeps fitting for me. My order of dxs go like this: autoimmune thyroid disease, nutritional deficiency (B12 and D), food sensitivity, MGUS, ITP, SCLS. [My MGUS/ITP dx was identified while investigating after my second CLS episode; SCLS dx came 4 years later]  

Thanks for reading and any input you have to share.

Cara

 

Cngratulations on getting your insurance approval. I had just recently gone through this and it took about 6 months of back and forth, including basically writing a dissertation and a phone visit with Dr. Druey (and letter from him as well). I just had my 4th infusion last week, I get 70g of Gammagard, which takes about 4 hours or so. My infusions are usually scheduled at 730am and I generally don't have any reactions (except for getting a little tired shortly after the preventative Benedryl injection). I find I get a bit fatigued early evening on the days of the infusion.

I felt similar to you when I had my first infusion scheduled.  I have to say a few days later I felt better than I had in years, more energy, my joints felt less stiff, felt more 'flexible' overall if that makes any sense. I don't think it was just 'in my head' either.  There are definite, measurable changes.

To answer your questions, where I can...

2) yes I still wear masks and avoid certain situations. Dr Druey recommended no air travel until having IVIG for at least 6 months, same with vaccinations. I take that as a sign to also remain cautious and avoid getting sick.

3) I have a slightly low rbc , but so far my doctors don't seem concerned. Also have MGUS.  AFAIK, blood cells are an order or two larger than albumin (and plasma) and probably don't 'leak' with this condition, but I'm sure someone can chime in that knows more.

4) no B12 deficiency, but I did have slightly low D2, for which I take a prescription suppliment.

 

Glad to hear you're on the road to some relief! 
-Kevin

Cara, here are in brief my answers to your questions:

1) About how many people are active members of this board? Ballpark figure?

More than 400 people are registered but we don't know how many read the posts without contributing to them.  I would say that 20-30 people put in questions or comments at least once a year.

2) Do you continue to mask and use great caution to avoid crowds or sick people? Or after receiving IVIG infusions have you relaxed your caution around others and just stay clear of obviously sick people? 

Yes and no, respectively, and I am much more cautious during the last week before my next infusion than during the first three weeks -- because we are, in fact, more vulnerable to infections when we run low on IVIG in our blood, see https://rareshare.org/topics/2204

3) and 4) Does anyone else run low-ish platelets? Just wondering if it is directly related with this syndrome? Or with MGUS?  Do platelets leak or concentrate during attacks? And  Is anyone else being treated for B12 deficiency?

I recommend you direct these questions to Dr. Kirk Druey, the world's most knowledgeable person on SCLS, at kdruey@niaid.nih.gov, tel. 301-435-8875, see https://irp.nih.gov/pi/kirk-druey  If you haven't yet been in contact with him, take this opportunity to reach out to him.

Thank you both for your responses.

I will most certainly consider reaching out to Dr. Druey. He must be very approachable for you to suggest this.  I find this to be true of doctors who are truly passionate about their niche speciality.

My local hematologist seemed to understand capillary leak but did not realize this was a syndrome or that it was associated with MGUS. I don't fault him for not knowing, but I also don't feel he is the best person to ask questions of. 

Thanks again.

Cara

 

Thank you both for your responses.

I will most certainly consider reaching out to Dr. Druey. He must be very approachable for you to suggest this.  I find this to be true of doctors who are truly passionate about their niche speciality.

My local hematologist seemed to understand capillary leak but did not realize this was a syndrome or that it was associated with MGUS. I don't fault him for not knowing, but I also don't feel he is the best person to ask questions of. 

Thanks again.

Cara