I have an auto-immune condition and 10wks pg- anyone else in the same boat?

[corneliusedgar]

A bit scared as having a slight flare up. Just wanted to know if anyone out there have some experience? Thanks

I have ITP and am 26 ish weeks pg with #2. It's an auto immune condition. i was fine with #1- no probs throughout the pg but massive problems at the birth.

This time I have serious problems in that my blood levels are very low. The consultant has told me that my body seems to be destroying my blood cells so hard to do anything for it apart for rest.

I have an auto-immune disease (Anklyosing Spondylitis) and it was terrible when pregnant. But apparently I am unusual in that - most women experience remission when pregnant and a flare after the birth. Can you speak to your GP/consultant and see what they say? You may be surprised at what things you can actually take safely whilst pregnant.

Weegle - I have AS too and am currently TTC. Did you take anything for pain at all during your pregnancy? I am off the painkillers (celebrex) 2nd weeks each cycle and the pain is pretty bad - really not looking forward to 9 months of it!

erm, my story is not particularly positive, but I think quite unusual. In a nutshell my AS came on for the first (noticeable) time when I was 12 weeks pregnant. No one took me seriously, said it was pregnancy pains etc would go after birth. I was immobile at 8 months pregnant. It got worse after birth and has been pretty bad since, but it wasn't diagnosed as AS until Jan this year when DS was 7 months old (after me pushing to be referred to a specialist privately in the end). Since then it's gradually been getting better as it's brought under control with drugs. Apparently though it is VERY unusual for women to have a flare/it come on when they are pregnant - most women in fact go in to remission. However it is quite common to flare after birth so I think from my planning our next baby point of view I accept I won't be breast-feeding to enable myself to go straight back on to medication. I know some drugs are safe for use in pregnancy but obviously the DMARDs aren't. What I would advise is getting as much info beforehand as possible and also get a framework of help/support in place as it's really hard caring for a baby when you have flares as it's so difficult to lift and you aggravate it! I now have quite a bit of help and simultaneously my AS is better because I'm not lifting 27lb of toddler all day every day and that makes a HUGE difference. Also, think really carefully about what products/equipment you get as with a bit of thought you can get ones which limit lifting/twisting - I'd be more than happy to give you my reviews on things! Pay particular attention to car seats, weight of pushchair, highchair, cot. It's hard when you don't actually know what caring for a baby/young child truly involves so please shout if I can help with this. I've loved my DS's first year despite the whole AS thing so it is possible - and most of that has been spent in flares and not on drugs so it is possible to make it good with some planning. Good luck at TTC!

Thanks everyone for responding. I have a combination of lupus and systemic sclerosis. I also suffer from trigeminal neuropathy on the right side of my face as a result of the inflammation. My condition was pretty stable until last week where I began to have excrutiating pain on the left side of my face. I think I'm starting to have a flare up. I am terrified as I don't want to have both sides of my face all numb and painful.

Smellywelly: Not on painkillers, only steroids and anti-malarials. How are coping with the pain?

Weegle: would appreciate all the advice, tips and help that you can dish out. I feel very alone atm and very scared. The pg hasn't been easy so far as been bleeding lightly since 6-7wks, very nauseauous and had terrible heartburn. Also worried about m/c as had one earlier in the year. TBH I can take all the pg symptoms but not the trigeminal pain. I'm also scared that I won't be capable of looking after the baby.
Am I being selfish wanting to have a child??

Corneliusedgar - sorry to hear you are suffering so much, it sounds really miserable. I wish I was able to suggest something but can only empathise. My pain is frustrating for me right now because it is making that 2WW all the more unbearable. At least if I was pg then I could feel it was all worth it - the arrival of AF can be quite depressing.

Weegle - thanks for the long reply and advice. Sometimes I do wonder what I am getting myself into but it definitely outweighs the thought of no children! Am keeping my fingers crossed I am in the "no flare during pg" category. Have had AS for 10 years since I was 22 so I think I am due a break

cornelius - can they up your steroid dosage to help get on top of your current flare? My sister was prescibed prednisolone for the first trimester so I guess that is safe. I don't know anything about your particular condition - where abouts is the pain? Paracetamol is also safe to take, although I admit this has rarely had any effect on my pain. The most important advice I can give is do not be afraid to ask for help. Pregnancy is scary at the best of times, let alone when you have other factors coming in to play. Speak to your GP/consultant and see what they can advise. Also, take the time whilst you are pregnant to see what help is out there for parents in your area e.g. Homestart, any charities that can send someone round to help with the baby when you are really tired etc. I have a lady come from a charity called Crossroads twice a week and she takes DS off my hands so I can rest. I've also recently applied for DLA and we're hoping to get an au pair. It took me a long time to accept I needed help but now I have I seem to be making progress because I get breaks.

And it is corny but true that having DS outweighs the pain, by far. It makes it all worthwhile.

smellywelly- so glad you are in the no flare category. I know what you mean about the dreaded 2ww. I hope this is the month for you Good luck and keep us posted.

weegle- the pain is basically all over my face from the inner to jaw area, cheekbones, gum and also the tongue. ATM, I can't feel anything on the tongue, everything taste like sawdust. I have moved near the in-laws so that they can help out if needed but I am very independent and find it difficult to ask for help. They are not exactly young themselves and don't really want to saddle them with childcare unless emergencies. I've not heard of Crossroads, will do some research on that to see if there's one in my area. What is DLA?

This baby is really really wanted and I've already bonded with little one. But the last few days I've been in so much pain that I don't have time/space in my head to think of the baby. I feel so guilty... I'm paranoid that my flare has harm the baby so I've arranged for a private scan next week. Silly I know but after the 1st m/c, I'm a bit anxious about it all. After the m/c I sowre that I'll enjoy the next pg come what may but the pain is making it all so difficult. I know it'll be worthwhile and I hold on to that thought tightly to keep my sanity. x

weegle-forgot to ask if you know what dosage of prednisolone was your sister on? I'm on 10mg ATM. Been trying to get hold of consultant for the last few days but no luck and GP refused to do anything unless instructed by consultant.

Get the GP to phone the consultant directly. I know it's tough, but I'm learning fast - when it's not just you but also your little one you have to be assertive - things only come to you if you push unfortunately. You bug that GP until they get back to you. You should not be in pain if it's possible to do anything. I don't know what dose my sis was on but hoping to speak to her later so I'll ask. And please try not to worry about bubs - they are resilient little things - you might feel dreadful but they will be getting everything they need from you.

DLA is Disability Living Allowance. I'm hoping I qualify for it because my mobility is affected quite noticeably but who knows?!

It is hard when you are a very independent person to accept help. I really hope you're just having a mini-flare and it ends soon. Auto-immune conditions are the pits.

just to add my own personal experience;

I have had inflammatory sero-negative(non rheumatoid factor but same symptoms) arthritis for 17 years now. It affects my feet, ankles, knees, hips, spine, neck and hands.

Fought very hard against original Rheum consultant's wishes to stop Methotrexate to TTC and transferred to Sulphasalazine (was also taking Arcoxia, Tramadol and Amitryptaline). TTCd after reading that stopping anti-inflammatory drugs can interfer with ovulation (I stopped taking them for 1 week from day 12). GP and new Rheum consultant said I had to stop all medication and manage on paracetamol.

Felt much better (than before pg) until around 26 weeks. Rheum consultant said I could only have steroid injections, Ob consultant went ballistic and made me see a different Rheum consultant and they both agreed I should go back on Sulphasalazine and take co-dydramol for pain relief.

Everything improved and against all expectations I delivered dd exactly as I wished, squatting and leaning over bed with only the TENS and gas and air.

Also felt pretty good until around 8 weeks after birth and sadly had to stop BF so I return to the Arcoxia anti inflammatory. I am now appreciating how good I really did feel joint wise when pg and its been a little difficult to accept my limitations again and re-learn to cope with constant pain but I don't have any regrets.

I am lucky that I have plenty of family around who are desperate to help out and a wonderful dh although at first it was very difficult for me to accept that I couldn't cope at times, I felt like I was failing dd but 6 months on I am slowly starting to enjoy being a mum and to realise that it doesn't matter if I can't sit on the floor to play with her, we lie on the bed together instead and have lots of cuddles in my special chair.

so after all that rambling about me, I hope this has helped a little, let me know if you have any further questions or need any advice.

weegle-have decided to make a trip to the hospital tomorrow and see if I can get hold of consultant for a few minutes. I think I've been assessed for DLA before (didn't realise that's what it was called) and refused. Apparently I wasn't disable enough even though I was lying in bed almost 24/7 for about 10mths!

marmitehead-love your name but I can't eat the stuff although it's DH's favourite! Thank you for sharing your experience with me. It sounds like you've been through hell and back too. I'm glad it all went well with the labour. Luckily you have a good ob consultant. I think I might be assigned a high risk Ob, I hope so. Must admit a bit worried about labour but can't let myself think too far ahead. I'm putting all my remaining energy into willing the little one to get through to 14wks where the danger of m/c is significantly reduced.

Thank you so much for all your replies. It's such a relief being able to voice my pain and fears. We've not told anyone about the pg apart from DH parents. I feel a bit better now that I'm not bottling it all up, waiting for it to explode! x

cornelious - thats probably the best thing to do as I reckon your consultant wouldn't be evil enough to turn you away in person (although the clinic receptionists are another matter).

Have you already tried to speak to your consultant's secretary by phone? thats always worked best for me when needing to be seen urgently although it does depend on how understanding your consultant is.

Persevere with DLA as I think they always reject a first application, I had to apply 3 times and only got accepted after getting help with the form from a disability advice service (apparently I was always too positive as I don't like to think about what I can't do) and seeing one of their doctors.

Good luck for tomorrow and hoping the future brings you much happiness .

oops, sorry I spelt your name wrong.

you need CD.

marmitemad-no probs re. name, got yours wrong too

sophable-CD? as in music CD or something else. Sorry am I being thick??

good luck with the consultant cornelius. As others have said you really have to put yourself and baby first and push for the help you need.

marmitehead, hadn't even noticed but just made me really giggle , in fact I could change to that, hmmmmm

oh hi I'm CD!

I have crohn's disease, mine flared up during pg and I was on 15 mg of prednisolone for 18 months plus azathioprine (do you take immunosuppressants?)

Hi CountessD: I used to take Mycophenolate for about 8mths but stopped since early last year due to TTC. ATM, only am on prednisolone 10mg and plaquenil 200mg. Can I ask if your baby was born underweight as I heard that can happen on steroids during pg. Were you allowed to breastfeed at that dosage of prednisolone? Sorry for all the Qs, I am so frustrated at the lack of info given to me. Thank Gog for MN! x

No dd was 8lb 15oz!! (she was a couple of weeks overdue). I was on Azathioprine right through my pregnancy (was terrified at the 12 weeks scan as they say they don't know whether it causes birth defects but if I came off was so ill that would never have had a child).

I had no adverse effects, I wasn't allowed to breastfeed because of the azathioprine, not sure about prednisolone though. I think they both contaminate breast milk but I'm not sure to what extent. You need to discuss with your consultant, mine wrote away to the drug specialist unit at Imperial College to find out the risks of bf while on azathioprine, they said they definitely didn't recommend it. I guess if you bf while on pred you may have to wean off breast milk gradually, the same way you would if you stopped taking steriods.

I did look in to getting my breastmilk cleansed of the drugs ie expressing and sending it off etc but it was a nightmare.

(what is plaquenil btw?)

I had three pregnancies and bf three babies while on azathioprine (50mg) -- I did have various less-informed medics tell me contractictory things about pregnancy and bf while on immunosuppressants, but my consultant (high-powered Professor, Chair at Oxford, blahdiblah) told me that the risks of malformation were verylow, and that benefits of bf would outweight the theoretical risks and to carry right on. He had a wall-full of photos of kids born to mothers on immunosuppressants, so there's more of it about than you'd think when you talk to less-informed medical staff (lack of knowledge never seems to stop them having opinions, sadly).

All my children were healthy weights (8lb 10oz; 10lb; 9lb 12oz) and all seem to have immune systems like armoured tanks.

I'd stopped taking prednisolone by that time, though was taking 70mg a day at one point. Yuk.

I was on 150mg (not sure if that makes a diff). Prof Steer at C&W and the Imperial college peeps defo said that being pg was fine but bf on that dose was not recommended. Believe me I hassled them beyond belief about it!

Oh yes yuck to 70mg
I have had that sort of dose several times is is NOT fun. Plus my hair fell out when taken in combo with azathioprine. AND i got a big fat face and a moustache

I actually once put on nearly 3st in 3 weeks while eating nothing when I was on IV steriods!!!

Yup, pukeorama.

I was on 150mg azathioprine at one stage, but pretty sure I had reduced to about 50mg by the time I was pg with dd1 (accidentally, eeek). I gather it is metabolized to 6-mercaptopurine in the liver, so it is actually quite a freaky substance. In fact it was bfeeding dd2 which finally motivated me to take the risk of coming off altogether.

I first started taking it in 1984 when it was pretty new, and was told all sorts of quite scary things about it, most of which fortunately did not materialise. But glad to be shot of it now, and hopefully will stay that way.