You poor thing, I'm so sorry you're going through all this.
I agree, seeing the doc now is the smartest move, especially when you have so much to consider before you make the next move; he may be able to offer the advice you need straight off.
It's a shame you can't fine a rheumy who deals specifically with these issues, or a FS who specialises in immune disorders.
hugs to you
Thanks, Marydean... I'm down to 3mg of prednisone, and really suffering with the freakish Sydney weather at the moment. It's times like this that being bone-headed and stubborn help. I absolutely refuse to increase the dose again, no matter how bad the pain is. It will still be a few more weeks before I get the benefit of increasing the methotrexate, but the only concession I am making to being in pain is that I'm not taking the next dose reduction when it's due. I'm also starting to consume more nurofen, and needing to rest more (there goes the weight loss), but I've just been on the prednisone for too long and it's just way too important to me (and my doctors) that I get off it once and for all. I shudder to think what it may have done to my bone density!
Littlelara, now that you mention it... As soon as you put FS and "auto-immune" in the same sentence, there's only one doctor that comes to mind. I've actually been a little nervous about going to see my old FS as he told me to stop taking metformin as soon as I was pregnant and I stayed on it until I was 17 weeks pregnant (when a dose reduction coincided with my first miscarriage, there was no way in hell I was taking that risk again!), but this other doctor told me to stay on it (only until 12 weeks, but hey, what's five weeks, really?). I was also told that I shouldn't take aspirin, but we (on the advice of my acupuncture lady) added aspirin into the mix and that's when we got Sam... So perhaps the amazingly awesome Dr S should be the one I go see. I've been tossing the idea around lately, just because he's someone who won't yell at me for sticking with the metformin!
I haven't made an appointment with my GP to get a referral yet... still thinking about things... like the discovery that if the arava wash out process doesn't work, it's up to two YEARS before we can go again... But I'm starting to think that Dr S could be my man, rather than the old FS.
I have absolutely no idea on any of the drugs to be able to help you out... I was going to mention Dr S when ''auto immune'' came up in posts as well..... I just don't want to overload everyone on BB with my Dr S preaching
Hi Butterfly warrior
Big hugs I know what it is like to have chronic pain and problems with Dr's not understanding mixed in with drug side effects and interactions (its not a nice )
There is a OB/GYN web site that alot of Drs are listed on. But for the life of me I can't find its web address. If I find it I will let you know.
I have had Dr's tell me that they are treating me for one problem not the other so they can't comment on the medication/care for the other problem its not their area.
If I remember correctly I did get a folate test to see what my levels were. I have that many blood tests its not funny.
I was 38 when I had Miss D and I like you can't remember when I was well and didn't have to take heaps of pills. I can't take NSAID's any more as I have damaged my tummy from all the pills in the past. So please be very careful with them.
I know this thread is a little old but I just came across it and wondered how you're doing Butterfly_Warrior?
I can empathise with your situation somewhat as I have Rheumatoid Arthritis and take a number of medications to attempt to manage the pain. I had a rough time with the process of having my DS from the 'wash out' period of the MTX to waiting to conceive while on no meds, to enduring pain during the pregnancy and ending up in hospital and on crutches due to issues with flareups in my hips, then more flare-up following the birth and so on. I was told by my rheumy that he wouldn't put me on Arava until we're done having children because of the risks of it staying in my system....I'm on 3 different drugs at the moment and they aren't very effective but I didn't think I had any more options right now.
I know how difficult it is to live night and day in pain and for the smallest of tasks to be such huge challenges. It is easy to feel very sorry for myself and wish things were different. Facing the reality that if I want another child (which I do) I will have to endure a minimum of two years of agony is difficult and scary and I still haven't decided what to do. Hugs to you and I hope you've been able to get the solutions you've been after.
I still haven't really decided what I'm going to do. I've now been on 20mg of mtx long enough for it to be working and I'm all but off prednisone now. On 1mg of prednisone every second day and considering dropping it altogether in the very near future. Most days I'm fine - once I get over the morning stiffness. I still have pain, but it's manageable - but at night I'm usually relying on mersyndol night strength and/or nurofen plus to be able to sleep. It also seems that the stronger the pain meds I have at night, the less stiff I am the next morning.
The downside of all of this - I'm not tolerating the side effects of the increased dose all that well. The brain fog is mostly ok, but the stomach troubles can last for days. I can't live in a situation where DH is completely responsible for the care of my son on Saturdays and I'm still prone to racing off to the bathroom at no notice on Mondays.
I'm thinking of dropping the dose of the methotrexate and adding in another drug. Rheumy is inclined towards adding salazopyrin back into the mix - I'm not so sure it will actually work. Tempted to go with the arava... I know the two years sounds scary, but there is a two-week wash out that can be done. I've heard it's pretty full-on, but I'd be inclined to take anything that reduces my drug-free time before the next pregnancy.
One small advantage we have, one small positive of having had to go through the hell of IVF... I have two frozen embryos that were stored when I was 33. I can wait until I'm 39 to go back for them and still be trying to get pregnant with the fertility of a 33 year old woman. It removes a lot of the time factor for us, but I can understand how it could be a huge issue for others.
Nice to meet you. I know it sucks that you have this condition and know what I'm talking about with the hell of the drugs that come with it, but it is nice to find someone who understands.
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I know what it is like to have chronic pain and problems with Dr's not understanding mixed in with drug side effects and interactions (its not a nice )
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