Vasculitis and Trying to conceive

[Phpetty86]

Hi, I am new to this but I have been trying to control my vasculitis for about 2 years now. I have small vessel Vasculitis where I get the rash and also my stomach inflames. I am on steriods currently, I was just wondering if any one has had any issues with conceiving with vasculitis. I am trying to conceive and just concerned that it will delay or cause fertility issues.

Thanks

Philippa

[Suzym2u Moderator Vasculitis UK]

It can depend on what treatment you have had and what stage you are at in your treatment for the vasculitis. All the doctors who have a special interest in vasculitis are quite keen to support those who wish to have children. There is a page on the website discussing fertility and vasculitis. it is something you must discuss with your doctor who treats you for your vasculitis. We know quite a few who have conceived after being diagnosed with Vasculitis.

vasculitis.org.uk/living-wi...

Susan

[Phpetty86 in reply to Suzym2u]

Thank you- my specialist has said that I will need to see my GP who will then refer me. I am hoping there won't be any issues with getting referred as I would like to know sooner rather than later if there are any issues. I am currently on Predisnolone - I can't find anything relating to this steriods and it affecting fertility.

It's obviously quite worrying as I didn't ever know it affects fertility.

Thanks

Philippa

[l-j-o in reply to Phpetty86]

Philipa, there are ivf clinics in London such as ARGC who suppress women's immune systems to help them get pregnant and stay pregnant. You may not need ivf but they maybe helpful to go on their forums and you will see what these women are on. l.j.o

[Phpetty86]

That's great thank you. I will look into it. I am hoping that I will get referred quickly and then I can find out what my next steps are.

Has anyone heard of fertility problems whilst on Predisnolone or do the fertility problems occur with vasculitis?

Thanks

Philippa

[RareStap in reply to Phpetty86]

Hi, I have been on prednisolone for over 35 years for eosinophilia and have had two children with no problem at at all. Hope this helps. Sandra

[monikagoyal in reply to Phpetty86]

Hi i want to add on this. I have fertility problem for last 4 months with prednisone. I have been on prednisone since last year.

[Phpetty86 in reply to monikagoyal]

Hi,

I take Predisnolone. Are you fertility problems due to taking Predisnolone?

[Phpetty86]

Thank you, that is reassuring.

[ShortSarah]

I'm currently going back and forth to hospital to find out the percentages of conceiving and successfully being pregnant as well. I've had tests to check fertility levels (because cyclophosphamide can mess with that), have had a consultation about medication (and I've been told tramadol and Rituximab will need to go on hold when pregnant -pred is fine) and the main issue for us is the damage to my heart - they don't think that my body would be able to cope with the extra pressure so waiting for another MRI to be certain. Adoption if not.

Get your GP to refer you to the nearest high risk pregnancy people and they should be able to help you out. And as a general rule - the more you worry, the less likely you are to become pregnant. (Do try not to become too stressed! Which is really hard I know.)

Hope this helps and good luck.

Sarah x

[Phpetty86 in reply to ShortSarah]

Hi Sarah,

Thank you for your message. Were you referred quite quickly?

I was diagnosed with Henoch-Schonlein Vasculitis and have recently come off my pill and my vasculitis is constantly flaring up.

Is the damage to your heart from the vasculitis or from the medication? Sorry if I am asking questions that are too personal, I am new to this although I was diagnosed in 2011 this is the first time I have been on a forum. I am really interested in hearing peoples stories and sharing.

I saw that you live in Essex, I also live in Essex. I have a GP appointment tomorrow so I am hoping they will refer me without making a big deal out of it. Yes your right, I know i should relax about the whole process.

Good luck to you, I hope you get a positive result from your next MRI scan.

Philippa

[ShortSarah]

Hi again - don't worry, you're not being too personal.

I had to ask my Vasc doctor and they then set up a joint 'pregnancy counselling' between them and the high-risk preggars team. Although I live in Dagenham, I was under care of Queens Hosp (in Romford) but they messed up and mis-diagnosed me (said I had depression and fibromyalgia) and generally made life a bit rubbish (they didn't really seem to have a clue sometimes) and so one of my doctors there actually managed to get me referred to Addenbrookes (in Cambridge). so I make the trek there for each appt. not ideal but they have been fantastic and they have the Rosie Hospital (which is specially for high-risk maternity and neonatal issues).

Where abouts in Essex are you? I was also diagnosed in 2011 - first with Central Nervous System Vasc but now they think it GPA/WG. the heart issues stem for original flares - I had 2 mini-strokes and nerve damage and inflammation of the aorta caused it to become dilated (stretched) so too much pressure could make it split.

It's all a bit rubbish, to be honest, I just want to have a little person! The strokes happened while I was away in Cyprus for my wedding so since we've been married, this illness has ruled my life. Some normality would be good but I more MRI of my heart will give us a definitive answers of chances or whether we need to go down the adoption route. There are so many children out there that need loving homes so we wouldn't discount this - it's a long process though.

Hope things look up your end x

[Phpetty86]

It seems that you have been through a lot, I hope you have some good news soon.

I live just outside of Colchester, I was also mis-diagnosed also. I saw many different specialists and none of them have a clue . It took a good 9 months for them to decide what it was and eventually prescribe me steroids to control it. That's great that you have been referred to Addenbrookes, i have heard they have some of the best specialists to deal with Vasculitis. Its worth the commute

I have spent most of my life up until now not wanting to get pregnant and now its all I want. But you are right, there are so many children who need a home and a loving family so there is hope even if its down a different path. I am hoping to get thee testing completed soon after a referral and then go from there.

Do you know what triggered or what causes flare ups for you vasculitis?

Philippa x

[rrahman in reply to Phpetty86]

hi Phillipa. I Hope you are well, I just wanted to ask for an update on your road to pregnancy.

I live in east London and am treated at royal London hospital.

I've not really discussed at length at about vasculitis and getting pregnant as I was single really and had no need to enquire. I find myself in the position of wanting children now and so want to know more of what and where to go for answers really.

I'm on prednisolone mycophenolate and septrin all for the last 4years since diagnosis. Had 4 sessions of cyclophosphamide.

what is this high risk pregnancy team and the Rosie hospital? Thanks so much.

r