Hi Lara!
I'm afraid I am totally unfamiliar with the meds you are taking and the tissue salts ... what do they do? Is that like Epsom salts? I had an elderly relative tell me to drink Epsom salts on a regular basis (YUCK!) to help with RA.
I am starting to feel as though I'm not being given alternative options by my rheumy. He just says "you need to take drug X" and I say "OK". But then I read about all the other types of meds that pregnant and breastfeeding women are taking and I think, why can't I take them too? If your rheumy says your drugs are okay, then you just have to trust him I suppose.
It's funny that your RA didn't go into remission during pregnancy like most women. Mine didn't either - I became completely incapacitated during pregnancy until I was put on prednisone.
My flares are becoming more frequent and more intense each week, so I'm praying I get pregnant and go into remission soon!! Got to keep thinking positive!!
I was on plaquenil for a while - it was great while it worked, but I only got around 12 months from it. I'm told it's not safe during pregnancy, too.
Babyjoy, it's stories like yours that really make me appreciate just how wonderful my rheumy is. From the start it's been a team effort. He gives me all the info on the drugs, and helps me decide which one I'm going to use. He gives me instructions on how to vary doses and then sends me away to manage my pain within those instructions. None of this "you will take XX amount of YY drug and I'll see you in a few months".
Quick summary of the drug options I was given - slow acting disease modifying drugs were plaquenil, salazopyrin and methotrexate. Of those, I'm told that salazopyrin is the only one that's safe during pregnancy. I haven't looked at the breast feeding aspect yet - I'll worry about that when I can get pregnant and stay pregnant!
When it comes to quick-acting pain-relief type things - prednisone is safe in pregnancy, and so is paracetamol/codeine. NSAIDs of all types are pretty much out (ibuprofen, naprosyn, mobic, etc). Again, unsure about the breast feeding aspect of those.
If anyone's in Sydney and wants the details of a fantastic rheumy - let me know, I'm happy to pass them on. He has rooms in Castle Hill and Concord, from memory.
Hi guys,
Well, I'm feeling super guilty for my previous comments about my rheumatologist because he was fabulous today. Went through my bloods step by step, then we discussed plans of action if I get worse either before or after falling pregnant, and then even options once a baby arrives.
We discussed all sorts of meds that you have mentioned and I didn't need to prompt him, all I said was, "what's my options?"
He really is a great doctor and saved my life in 2005 when I was first diagnosed.
He said plaquenil is not as strong or as effective as MTX or salazopyrin.
The latter was his preferred choice if things get bad and I decide not to go down the prednisone route.
He also said diclofenac - the voltaren, anti-inflammatory that I take now - has been tested to the nth degree and with his patients he has seen very little side effects, as opposed to drugs like mobic.
We didn't really get deep into discussion about what's safe while breastfeeding because my toddler started playing up and I could see I was taking up his time, so at my next visit in April, I'll ask more. The other thing I didn't mention is that this rheumy is the only one north of Townsville which means he looks after all of Cairns, and every single town in between and out west, as well as Papua New Guinea (patients fly down specifically to see him). He wants to retire, but he has too many patients who would be left without help, and many of them young women having (or planning on having) babies!
Now the good news... my blood tests were surprisingly good and my flare has settled. I now only have morning stiffness to contend with and as long as I try hard to stay stress-free, I know I can beat this thing - it's mind over matter!! (until winter comes along )
I did a pregnancy test today and it was negative, so we'll just keep trying. It took me three months with my daughter, so perhaps we'll get lucky in the third month again.
Hope you are feeling better soon Lara... can't imagine dealing with two littlies and flaring at the same time! My sympathies go out to you!
Babyjoy, I'm glad your rheumy pulled through for you! We tried plaquenil first because it's a bit milder in side effects than the others. I'm completely fine with the salazopyrin now, but I had a rough time trying to get myself up to the right dose - I'd get awful headaches from it. In the end I had to take it much slower than normal, and instead of taking a straight increase I'd alternate doses. When I was fine with one tablet per day, I'd take two one day, one the next and keep switching until that was fine, then I'd take two tablets every day. It's one of the biggest reasons that my rheumy insists I set my own dosage levels to what I need. Good to hear that the flare has settled!
Hi ladies,
It feels like it's been a while. Babyjoy, so sorry to hear you had a flare. Glad it's under control. You're off the methotrexate aren't you, as you're TTC? Glad your rheumy has re-estanlished their place with you. They are important people I have discovered! Mine is wonderful even though I cried my eyes out when I went in last time. And it seems I will have a long relationship with him. There's not many out there though.
I've been on methotrexate for about 6 weeks now (10mg once a week) and am feeling pretty good. No major side effects apart from a bit of nausea the next day. I'm down to 5mg of Pred a day. It did make me gain weight but Christmas didn't help either! My rheumy wants me off the Pred in the next 5 months. Hopefully I won't flare. I'm still having a small amount of pain in my feet, but the pain is nothing compared to the pain I had in my entire body 2 months ago. Glad I made the decision to go on medication. I'm such a better wife and mum.
I'm still having issues with not breastfeeding. I really miss it. But talking to everyone on this forum really helped (thank you!!!). I also wrote everything down and sent a letter into a well known parenting magazine. They actually published it in January's edition! I actually had forgotten about the letter until someone pointed it out to me. I think I just needed to write it all down and do something with it. Once I had sent it, I forgot about it completely!
It's great to read about other peoples medication as well. Gives me something to discuss with my rheumy at the end of the month.
Hope you're all pain free. Good luck with TTC this month Babyjoy.
Hi everyone!
It's been a while since I popped in. We're still not pregnant, but fingers crossed for this month! Flares are happening daily now... morning stiffness followed by the odd joint playing up during the day, then serious aching all over at night. By the time I get to bed and lay there really still, it feels like I have clamps on my ankles, wrists and knees and someone is tightening them. Fortunately my pain tolerance has improved over the past few years so I can sleep okay.
WARNING TMI: The problem with RA and trying to conceive a baby is that ... um... certain sexual positions really hurt! My hips scream at me while my shoulders stiffen and knees crack... my moaning and groaning is not due to pleasure, it's because I'm in pain!
I'm so lucky my DH is understanding.
Hope you are all doing well... keep us posted! I'm signing off now...
I see this post is a little dated but maybe someone will still respond..I also have RA, and I'm sero-negative and have been going on three years. I have three children ages, 11, 14 and almost 16 and have had two failed IVF cycles and will be moving on to donor egg.
My dh and I began our journey of IVF before I developed RA, and now I'm scared to stop my meds for fear of the pain that I will have without them (Enbrel, Methotrexate, and Plaquenil) I still have joint pain most days, although it is only unmanageable if I get sick with a cold or something like that..
My children are from my first marriage and my dh very much wants a child of his own and feels empty without one. Right now I'm trying to get over my fear of stopping my meds and dealing with the pain as we go through an IVF cycle.
My children are much older and able to care for themselves and I also worry how I will care for an infant and if I will be able to nurse as I did with my others or if I will be forced to go right back on my medications, so many worries!!! I agonize constantly over this and no one here understands what I'm going through, not IVF (especially donor egg!) We thought I would be a great candidate since I had had three children but we were very wrong! With an FSH level of 5, I failed miserably, and on my second try my FSH went to 35. At 35, I was told donor egg was my only option and by the time we were saving for it, I developed the RA and here I am.
Since I'm sero-negative I keep thinking maybe some day the joint pain will just go away, but it has been three years and I started out on all the NSAIDS and now I'm on Enbrel so it doesn't look like it's improving any.
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