Sjogrens World Forums

Hello all

Not been logged on for a while but was diagnosed officially this week so thought it made sense to get back in touch.

Went to Guy's Hosp in London on Tuesday and they have confirmed full SJS, with all the trimmings, ie lupus and arthritis.  Biggest surprise was that my B cells have cloned which apparently is the very first stage of lymphoma, so all in all, not a very good day.  No need for radiotherapy yet though, starting with meds initially.

Just wondered if anyone out there had been prescribed Plaquenil when they were pregnant/planning a pregnancy?

My clinic are fully aware of my plans and have therefore started me on Plaquenil as my rheumatologist is saying this is safe for pregnancy.  However, I have found conflicting information about this and wondered if anyone else has actually been taking it whilst pregnant?

Any info would be helpful.

Many thanks
Sarah

Can't help you with that question but wanted to send you a hug.

Much appreciated perry :-)

Sarah,

I am so sorry your news was not so good.

Hugs and prayers for you.  For good and caring Drs, and a very strong attitude- for you to kick all those health issues out of your way.

I wish I had info you on the lymphoma question, although I am positive some one will jump in and give you encouragements and advice earned from their experience.

blessings kimbo

Hi Sarah

You must be feeling pretty overwhelmed today.  It sounds as though you had a thorough check-up at Guy's and that they really know what they're talking about.  That's reassuring, but the diagnosis is a lot to take on board.  Please let us know how you are feeling and what support you need.

I haven't taken Plaquenil while pregnant but I also thought it was contraindicated.  What other meds have they prescribed?  I assume you can't take any chemo/immunosuppressants like CellCept or Methotrexate because they're not suitable for pregnancy.  Did they give you a chance to talk about timing for treatment delaying pregnancy, or delaying treatment until after the baby's born?  Do you have children already?

There are quite a few people here who have had successful treatment for lymphoma and I'm sure they'll be along soon with specific help.  Everything that I've read about SjS and lymphoma looks hopeful.  Look in the discussion threads, particularly for a post from Heather in NY.

Thinking of you - Chickpea

Thanks for all your messages of support, they really are all appreciated.

Yes, feeling a bit overwhelmed at the moment.  Was pretty set up for the SJS diagnosis, but the B-cell changes came right out of the blue.  They are a brilliant team at Guy's and they said that they would look after me and that I was to have faith in them.

No other meds at the moment, I'm off to the Lupus/pregnancy care clinic at St Thomas' hosp in June so they can decide exactly how to treat me.  Rheumatologist did want to put me on some other meds (can't remember the name as it's all a bit of a blur), but she decided against it as they can make you really depressed and she feels I am quite down at the moment so they wouldn't be a good idea.   Not pregnant now, nor have any children, but already had one miscarriage a while back.

I'll check out the other discussion threads for more info.

Cheers
Sarah

Hi Sarah

Another hug coming your way. It's a mixed blessing being diagnosed, isn't it? All I can say is that you seem t have found a good team to treat you, and I think that's half the battle.

As Chickpea says, let us know how we can support you.

Kathyx

PS - one of our very new members, Minty, is looking for a good doctor in London. Would you be able to let him/her have information about the team at Guys?

Hi Sarah,  Thoughts and prayers are with you.  My 4 year old has sjs and I worry alot about lymphnoma.  My little girl is also on Plaquinil on 50 mg a day.  But all the information Ive read said not to take while pregnant but Im not a doctor.  Best of luck to you.   Hugs and Kissess    Jonnell and Jenna

hi sarah

just wanted to send you a big hug also, im sure the people at guys are going to look after you and keep a close eye on you and will be able to jump on anything as it happens.  I have also wondered about plaq and pregnancy and i would like to have another baby.  I asked my rheumie about it and he said there is no problem with taking it during pregnancy and that even though it hasnt been officially stated as safe (apparantly they havent done enough trials on pregnant women) he has had many many women with lupus and sjogrens that have taken it with no problems to the feotus.  He also said sometimes you have to consider the benefits (fewer flares, less severe) etc to over ride the very small risks.

I have considered this and have decided that if i decide to go forward with planning another baby i will stay on my medication as i feel so much better and would not want to be as ill as i was before after my first baby.  He was fine by the way, no heartblock, neonatal lupus etc and i have ssa antibodies.

On monday i am going to see Dr Elizabeth Price in swindon who is apparantly one of the top sjogrens drs in the uk and i shall ask her about this, obviously it is personal choice though.

hope this helps annie x

Hi Sarah,

I too want to send you giant



that must have been one heck of a scary day for you!  I can't say about being on Plaquenil and pregnant, but there are a couple of members that have done it and hopefully they'll stop by and give you some advice.

Hang in there and keep us updated, okay?

Take care -

Patze

Annie

I heard Dr Elizabeth Price speak at the UK Sjogren's conference last October. She is a wonderful and very knowledgeable woman. I think you will have a good appointment with her. I wish I lived near enough to have her as my doctor.

Kathyx

hi kathy

thanks, yes i have heard she is good also, its worth travelling from surrey to swindon to see her, its a 2nd opinion (my rheumie is good but i wanted to ask some questions from an expert) i shall let you all know how i get on!!!

annie x

Many thanks for all your responses.

Annie - very glad to hear your success story with your baby, it's a great comfort to know that others have been there before you and it can go well.  Be very interested to hear how you get on on Monday.

I'm pleased that I'm back on the site, sometimes find it hard talking about myself, if you know what I mean, feels a little self indulgent, but I do feel better after sharing info with you all.

Cheers
Sarah x

Hi Sarah

Yes, I recognise that 'self indulgent' fear when you talk about yourself.  Maybe our mothers are related! 

I'm much more comfortable offering support than accepting it.  One of the many wonderful things about SjS World is that we're able to do both.  Right now you need support, but I'm sure very soon you'll be offering it to others.  Either way, you're welcome here anytime to tell us just how you're feeling.  No judgements and no expectations; just friends around the world with listening ears and open hearts.

Thinking of you - Chickpea

Annie - let us know how it goes tomorrow.  You'll be in our thoughts.  C xxx