Rituximab

[Connorscotland]

Hi All,

Another question.

You may need to read my previous post to understand this one.

My wife is going into to hospital on Wednesday for an overnight stay to have this put into her via IV.

Her platelet count keeps dropping and she had a platelet transfusion last week and they were at 127 then 1 week later 62.

She is on dapsone which they don't think is working hence the above.

Apixaban/Folic Acid

She was on Clexine and Warfarin but took her off it even tho her INR was bang on it put her platelets to 7.

They advised my wife NOT to fall pregnant for 6months after this treatment also which upset her a bit but I told her it's for the best as we need to get her "fixed" so we don't have a recurrence of last month which has been hellish.

Has anyone on here been on this?

Thanks in advance all, appreciate the responses.

[MaryF Administrator]

Hi, I have not, but others on here have had a similar infusion, do hang on for some personal answers regarding this. Please do remember our list of specialists under pinned posts on here and also some listed on the charity website: ghic.world/ It is crucial that you have a consultant in this picture who understand the condition in it's entirety. I hope it goes well for you both. MaryF

[Fra22-57]

I have had couple of these but mine was for RA and didn't help it.hope it is successful for your wife

[Ray46]

You both have a lot to understand, and come to terms with. Even without the rituximab, rushing into another pregnancy will, with APS, most likely only end in more heartbreak.

Your wife has a more immediate medical problem (platelets) that needs "fixing" - but you should be aware that it may not stay fixed, or may need more treatment.

Then there is the APS, this is a lifelong condition, it cannot be "fixed". It can be managed and treated, but the treatment only treats the symptoms, not the cause - and you hope that is enough to stop it killing you. However, successful management is possible and successful pregnancies are possible, IF managed properly.

I would suggest you need an APS specialist or specialist team, because your wife's case is complicated (platelets) even for APS, and you need to get the condition treated and stable. Then you need an obstetric APS team or specialist to manage a pregnancy - that may not be the same specialist or team as before. You want (in my opinion) to be under the care of a team with a track record of managing APS cases through pregnancy - don't be afraid to ask if they've done this before with a similar case, and beware if they haven't (or won't answer). You should fully understand the risks (to both mother and baby) - to the extent that medical science can determine them at all.

Then you are ready to try again. I wouldn't be surprised if that is more than six months. Good luck, don't rush it.

[Holley]

I did Rituximab back when I first got diagnosed with APS. They were trying to target the antibodies. It did not have the intended results. I did four infusions.

[KellyInTexas Administrator]

Connor, it’s a lot! I think Gemma has just been slammed. That’s all. Let’s slow this down. She’s only 28. Take a breath. I think her body just got too many , “ hits” . ( Dr Hughes talks about the two hit theory.”)

Did they explain to you in Scotland that all women are a bit hypercoaguable when pregnant? So if you have APS ,” lurking in the shadows “ , becoming pregnant will be a sort of like a “ hit” for her system? You can think of it like a ,” trigger “ in a very layman’s way. She will become even more hyper coaguable then the ,” normal” pregnant woman sitting next to her at the Obgyn surgery reception.

Now, now I personally have been through most of this at different stages. I started out with a bang. My ITP kicked in hard at 18 months of age, so in 1971?) I was given massive amounts of steroids and put in a children’s cancer hospital critical care unit. In 6 weeks time I improved. My doctors now think I was in micro caps.

I’ve not had major problems with this since. So just because you’ve had problems once doesn’t necessarily mean you will have problems again. I was told as a child ( my parents were told) that when I began my periods and with each pregnancy I would have to be careful- and have to have my pro time / clotting time checked. Always perfect!

I did have several miscarriages...(thankfully early ) and ectopic rupture- life threatening- horrible ...) With clotting. No ITP.

We did manage, as I told you- two very successful children.

I had terrible complications systemically of APs, classic APS. We just didn’t realize what it was and neither did my doctors.

In November 2016 I was screened for antibodies and also had a large DVT so that was my official diagnosis/ hospitalized/ treatment for life began. I had never heard of this disease.

If you read Ray46’s post- this is why we - Ray46, I and APsnotFab encourage you to seek top hematologist. Not only for immediate care, but one who can transition with you and be the one to follow you with OBGYN specialization when Gemma is fit. ( when specialist hematologist says Gemma is fit...) So make sure this Hematologist is APS/ OBGYN dual credentialed.

But I think you already have this figured out, Connor. I’m not telling you anything you don’t already know. But I it is encouraging maybe to hear that I personally had such a severe case of ITP, and then it did resolve without further serious relapses and I was able to have children. I have been on a razors edge with it a bit- and we are all different. But I did get past it ok. Gemma needs to think about 28 being young. ( our daughter Sarah is 28. She’s going through a little of the same thing. My mom died of this when I was 27 and our 16 year old son has the antibodies. Sarah has a few minor symptoms- very minor- negative tests for antibodies. She’d like to think about starting her family soon just in case she has complications. She has been told she will need a high risk OBGYN just because of family history. She is still in PhD program and feels very pressured... I tell her... 28 is YOUNG! Take a breath. Snuggle on the couch together... enjoy a cup of tea... breathe...perspective for your overall well being within your body and mind- it’s so much to come to terms with.

28 is young. You have some time. Gotta this “Gem” sparkling again😊.

One foot in front of the other for right now for Gemma. Get past the platelet issue- and this is tied together with securing a top tier APS specialist With OBGYN tagged on. As I said, Hannah Cohen is great and told me, I will be available to email and answer questions to your Hematologist in Texas.

I just wanted to send this note to you and Gemma before tomorrow’s appointment- all the best tomorrow, you two.

[bernieembleton]

I have not had this problem. My platelets have stayed in range. I am sure they will do whats best for your partner. I wish her all the best. X

[Connorscotland]

Hi All,

Just a little update on this.

She had the infusion and had a reaction to it, very bad chills, headache and vomiting so they slowed it down, took 8 hours in total but her side effects went away, she will have her blood test tomorrow so here is hoping there is a sign it's helping.

She goes back in on Thursday for another session of it.

The frustrating thing is she feels great, looks great doesn't feel ill at all. Well I say frustrating but you understand what I mean.

Oh well fingers crossed.