I'm not sure if it's even possible to find an answer to my questions... but I figured I'd try anyway.
Basically, I suffer from an as yet unidentified form of serum-negative rheumatoid arthritis. Treatment for this was salazopyrin and naprosyn, until we got started on IVF, and my FS took me off the naprosyn after first saying it was ok. As we approached winter my joint pains and ability to move got worse, so my rheumy put me back on prednisone. Only 10mg per day, but it was enough to give me relief. I started on that a couple of weeks before the FET cycle that I'm now currently pregnant from.
My rheumy isn't a fan of prednisone at all and wants me on the lowest dose possible. I was supposed to reduce the dose by increments of 2.5mg every couple of weeks until I found the right dose for me. I got down to 5mg and found it wasn't good, and gave myself a few extra days on 10mg before planning on going back to 7.5mg. Only the weather in Sydney turned mad, we had the FET and I wasn't game to mess with anything in the TWW - I stayed on 10mg.
When I hit 5 weeks I figured that things were pretty well established, I was starting to notice that what the rheumy had said about pregnancy reducing my arthritis symptoms was true, so I cut back to 7.5mg - and promptly experienced a few days of brown spotting. I didn't twig at that stage, but also didn't feel entirely comfortable on 7.5mg - dealing with the fatigue of pregnancy and the arthritis niggles was just too much! Back to 10mg...
I saw my rheumy just as I was hitting 7 weeks. He's not thrilled about me still being on 10mg, but as my weight is stable (even with being pregnant), he said he can live with me staying on that dose. He'd rather I get back to at least 7.5mg, as that is the normal and natural level in the body, apparently. He also gave me a script for 1mg prednisone tablets so I could reduce the dose in smaller increments, dispense with the cutting of tablets and generally take it a bit slower.
Sure, taking 5 tablets to get 9mg was probably as frustrating as cutting tablets in half, but I decided I'd go for it. Only my first day at 9mg of prednisone resulted in me having more brown spotting over night. I went straight back to 10mg the following morning, and don't intend to change that at all until I can consult with a doctor.
Problem: can't get in to see my GP until the 13th of July - with my rather complex medical history I'm not comfortable with seeing just anyone with regards to this. We've had our final appointment with the FS, and don't have our first OB appointment until the 23rd. Feel a bit like I'm in limbo with the FS finished and the OB not yet started, don't have another rheumy appointment for 2 months.
So... does anyone know anything about prednisone? Should this apparent link with reducing my dose and having spotting worry me? Too bad if it shouldn't, because it does, anyway! I'm supposed to be letting my rheumy know of my OB's details so they can communicate while I'm under the treatment of both, I guess the easiest solution would be to try to talk to him rather than only giving the info to the receptionist. Do you think it would be worth giving my FS/clinic a call to see if I can get answers from there?
I know it could just be a freakish coincidence... but...
BW - You must be very worried! I'm not very sure about the drug you are taking.. but i just wanted to offer you some comfort by letting you know i too spotted for a week around the same time as you are now.. it was brown blood tho! They did an internal and also did a scan and couldn't find what was causing the bleeding and just assured me it was perfectly normal to have some spotting around that stage
Thank you for the reassurance, Catherine! I just realised what a long post that was, you've done well simply getting to the end of it!
I guess what really worries me is not so much the fact that the spotting occurs - it has just been brown, went for three days the first time, and only half a day the second... but it's the apparent link between the spotting and reducing the dose of a drug I'm supposed to be weaning myself off!
I'm starting to think the prednisone is doing a little more than just reducing my joint pains... I'm on quite a few different medications, and while they have all been checked and are safe in pregnancy, I'd really rather not expose this bub to any more than is absolutely necessary.
I understand how you’re feeling not wanting to expose bubby to anything unnecessary... My GP and Hossy told me not to worry over brown blood, because it usually means it's old if it's brown and where ever the bleeding is coming from it is only a very small quantity hence it takes a while to make it into your panties and makes it old blood if that makes any sense.
Keep in mind that you also want to feel comfortable with your pain, if your getting quite uncomfortable you are more likely prone to stress which isn't good for the baby! It must though be nerve racking having to wait for such a long period for you Dr..
I would say it's possibly coincidental. To make you feel better I am on 25mgs of prednisone and have been since November last year. I will be on it for the entirety of this pregnancy. Prednisone does not cross the placenta and is actually used to ward of autoimmune disease in pregnancy.
I would personally continue on it if it is giving you relief and if you believe that it's causing the spotting. As you know already brown spotting is old blood. It's not unusual to have spotting around the 6-7 week mark and bae completely normal. However, I would suggest seeing your obs as soon as you can for some reassurance and to discuss that doseage.
Dr S uses prednisone to treat NK cells and autoimmune disease in pregnancy with great success (as do other obs). I personally would not be too concerned about the prednisone at all...
I saw my new rheumy and OB last month as we are about to TTC and I have rheumatoid arthritis. Both have told me that prednisone is safe to take during pregnancy as very little will actually make it to bubs. (The OB told me that sometimes they need you to take it for the baby too.)
I'm quite satisfied that the prednisone is safe to take in pregnancy - I guess it's more that I had a really hard time coming off it last time and gained quite a bit of weight which then took years to come off. But I suspect that was in the end down to the PCOS which made the weight difficult to lose, and we found an effective weight loss program in the end. Don't you just love it when different medical conditions interact!
I think what's sitting in the back of my mind is that my weird auto-immune thing which nobody has been able to identify is going to be an issue in pregnancy. I'm also feeling very relieved that chance has had me on prednisone at the time of the FET, so in many ways we haven't had to find this out the hard way.
I know it could all be coincidence, but the bigger and longer the dose reduction, the longer the spotting goes for and the worse it is... I guess my gut feeling is that in the end the prednisone is doing something (even at such a low dose) to help sustain the pregnancy - I just hope I can get my doctors to believe me!
I'm certainly not expressing myself too clearly at the moment, but this is helping me put my thoughts in order.
Harkat, good luck with TTC, I wish you a much shorter and smoother journey than I have had.
I think you are expressing yourself very well :hugs:. NEVER NEVER underestimate intuition and "gut" instinct. I too am glad you are on the prednisone because there is that autoimmune thing going on. Even at 10mgs that will be enough often.
The weight issue. I have put on 12kgs since commencing the prednisone. It's a shocker but I figure (excuse the pun!) at the end of the pregnancy I will find a weightloss programme and work my butt off!
I hope you can convince them too - for what it's worth I think you should stay on it. Plead your case, talk about instincts and if that fails and you really believe you should be on it find someone who will go along with you...
I am thinking of you Butterfly and watching your beautiful journey closely...
THe other night, when you mention this in your journal, i did a bit of surfing research (i KNOW, i'm a big GEEK! LOL). All i could find was that prednisone is known to cause menstrual irregularities and that for some women with autoimmune problems (especially those with elevated Killer Cells) prednisone is prescribed along with an anticoagulant to protect the pregnancy, usually for the first 12 weeks, but sometimes for the whole pregnancy.
I just googled "prednisone, pregnancy, spotting" and a whole lot came up. I can provide links by PM if you want.
From the things i read i would think that it's possible the prednisone is doing something to your hormone levels, and that reducing is making you spot. I wouldn't assume that it's "protecting" the pregnancy, more that the level dropping is making you spot a little but that the pregnancy isn't in danger during these times, especially is it's old blood.
Either way if your rheumy is happy with you on prednisone and you are happier on it, then i would continue on 10mg until 12 weeks and then, IF you want to, see if a reduction in dose can be done without spotting.
BW all I've been told for 4 years is that I have an "inflammatory connective tissue disorder" that they couldn't identify. Finally after moving and getting some new docs I get an immediate diagnosis of rheumatoid arthritis. I know how frustrating and scary it is when you don't have an exact diagnosis as you really don't know what you are dealing with. I can only imagine it would be worse when you also have a baby to worry about!
Trust your instinct with the prednisone. I learnt a long time ago to not leave a docs office unless you are happy with their answer - after all we pay them to look after us! I was so worried when I first got symptoms that they'd just tell me that it was all in my head so I wouldn't take medication before blood tests (stupid but effective.)
Sorry for the rambling here but I just wanted to let you know that I understand what you are going through from the diagnosis side of things. You are the only one that knows your body and how you feel so do what you feel is right for you and bubs.
Oh and thank you for the TTC wishes - I've read your journal (after doing a search for arthritis) and will be following your journey closely.
Hoping you get some answers soon and that you and bub stay healthy.
Bec, I'd love to get a hold of those links if you could! I've tried googling myself - not coming up with much that's been useful, but between the fatigue and mushy brain, that's hardly surprising.
Harkat, know the feeling! I am lucky in that I've had very good doctors right from the start. I've been tested for practically everything, multiple times. The only thing that's ever shown on my blood work is evidence that there's an inflammatory process active in my body when the arthritis is in an active flare state. My rheumy has been brilliant - he's never blinked when things come back negative, when I think I'm going mad because I can't describe the pain because it changes so much... but he's worked with me the whole way to keep me on the lowest dosage of the safest medications. Eventually he and I have had to accept that he can describe my condition with med-speak if I insist on having a name for it, but naming it doesn't change the way we treat it and manage it, and we've got it pretty well managed for now. Whatever oddity is occuring in my body, I don't have any joint degeneration so I consider myself extremely fortunate! I'd also done the "blood tests show nothing is wrong, so why do I need to take meds?" thing... but you can only do that for so long before the desire to be able to be a functional human being takes over.
Deb, thanks so much for being there for me again on this journey. I really, really appreciate the fact that when I'm having trouble finding the words to express my thoughts you always seem to see straight through to the heart of the matter.
I think I'm pretty much set on my course for now - stick with the prednisone. If nothing else, it makes me feel comfortable to be on it, and less stress is a beautiful thing! If I do find myself in the worst case scenario, I'm not going to go back for any other embies until I've consulted with Dr S. I'm very fortunate that I live close enough to have access to him... I'm also very glad that I've got a rheumy who listens and didn't think I was mad for staying on the 10mg because that's what I was on when the FET occurred. He did label it as a superstition, but he was happy to go with it. I'm pretty confident that he at least won't need convincing. My GP is brilliant and has come to realise that often I know more than he does when it comes to my health... I suspect that all it may come down to in the end is possibly rethinking my choice of OB - he's the unknown quantity in this! I'm sure my GP will make sure I've got a good one...
It's all just a matter of when I can get in to see him!
Aaah superstition - I know those docs well. I must say one of the obs I "interviewed" after my last loss was my obs with my last live baby and my first mid tri loss. He agreeed to the prednisone "because it gives maternal confidence". He conceded that it was often helpful with implantation issues in ivf etc etc and it had been trialed but he felt the clexane and asprin would be enough.
I like that my new obs actually took the time to research, contact Dr S and understand the mechanics behind the prednisone. Still, the clexane/asprin may be enough and perhaps the quite marked side effects of the lovely prednisone is for nothing but I wasn't going to chance it... And my new obs believed in my gut, was willing to listen to Dr S and concede "it sounds like a goer".
I didn't listen to my instincts for 18 months. I didn't listen to that voice inside me and I paid the price of losing my babies. I also paid the cost of being fobbed off (I am sure as a desperate woman clutching at straws...).
The mark of a good doctor is one who listens with ears, heart and instinct. They are out there. Harkat you are right - we should never get up from that chair until we are satisfied and we totally understand... I have learnt that painfully too... :hugs:
It sounds like a good plan Butterfly - keep on that prednisone and feel confident. Big big hugs...
Oh you poor thing, I do hope everything is ok for you. Its hard isnt it? All the uncertainty and worry....
I know how you feel, I commenced prednisone & antibitoics yesterday for asthma and despite the Doc telling me its fine (category A) medicine, I still worry about the effects...
You sound very sensible, and like you are doing the right thing.....
I hope everything is ok for you and you see your doc soon
Prednisone and spotting.
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