Medically, I have a real dilemma at the moment. The only thing that is certain is that I must get off prednisone. 3mg this morning, lets see how that goes... I really don't know why I'm posting this here as I doubt anyone can answer the questions I have, but I need to get it off my chest - it's all starting to keep me awake at night.
For longer term arthritis relief I have the choice of methotrexate or arava. I'm finding it hard to sift through the information relating to the two, but my rheumy says the side effects of arava are pretty much the same as MTX, and that concerns me. I get fatigue, brain fog, nausea and diarrhea with MTX, but I only take it weekly so I'm like that for one day of the week and the rest of the week I'm fine. Arava is taken daily... I suspect he's mainly talking about the completely trashing my liver and other organs side effects, but I'm not sure. My brain seems to shut down every time I try to look up the side effects.
Then there's what I've got to do if I want to go back to IVF. MTX, I stop and keep taking my 5mg folate tablets for 3-6 months and at some indeterminate time I can go back. I don't know if they can actually test to see if my folate stores are fine or not, but that scares me. Not only because of what the folate depletion may mean to any future baby, but because nobody can really tell me exactly what the safe period of time to wait actually is. Up to half a year unmedicated... petrifying. With arava, I stop and have to take a course of another drug for two weeks and then they test to see if it's out of my system. Without the other drug, it can take up to two years to clear. It sounds simpler, but I also figure that there's a reason it wasn't on the table until it started to look like I wasn't getting enough symptom control with a tolerable amount of MTX. And how does all of this change if I'm putting back a frozen embryo? Does it change at all?
Then there's the metformin and my PCOS question. Knowing how absolutely shocking my insulin levels were pre-Sam even while on metformin, I suspect I should be back on it now... but the doctors can't seem to agree and I don't even know if there's any problems combining metformin with my arthritis meds... Currently all they want to do to control my PCOS is put me on the pill, but I know that's just masking the symptoms rather than doing anything to actually correct the imbalance.
I just want someone to tell me what to do! I suspect I should go back and see my IVF doctor and get his opinion on all of this, but I can't locate him after his old clinic booted him out. And he changed his email address... And he didn't really care about how we treated the arthritis before, but surely he would have an opinion on whether I should be taking metformin or not and whether MTX or arava is the safer option? But it's impossible to see a doctor you can't find. My rheumy just keeps telling me that he'll give me the information and it's my decision to make, and it all revolves around when we want to try for #2. I can't convince him that #2 isn't up for discussion until my arthritis is controlled and I have been back at work for a suitable period of time!
no advice just huge hugs...sometimes doctors dont get how you feel because they cant walk in your shoes and i find it hard to explain to them how i feel or that they dont understand your concerns.
my problem is pain and sometimes i think lifes so unfair but no matter what youv got to keep fighting.
sorry to babble hun just wanted to know i know how hard it is (not arthritis)
i really hope you find a answer hun and that you can get some relief from it
take care
rach xox
p.s is there some kind of register over in aus of practicing doctors - if so maybe you could find you doctor that way?.
I think any condition that involves chronic pain just totally sucks. Sometimes the hardest thing is being a young person and having no visible signs of being sick - the judgement can be pretty harsh some times. Don't worry about not being able to advise, it just helps to know that others understand what it's like to deal with pain and other health conditions and especially trying to juggle safe medications with TTC and pregnancy!
Sweetie, just wanted to pop in and offer you some big s! Have you spoken with your drs on the best way to step down off the prednisone (withdrawal can be horrible) - good luck with that process.
I guess w/regard to side effects - you won't know unless you try it - each individual experiences it differently. I agree 6 months with no meds is a terrifying prospect. Could you trial the Arava for a few weeks - if the SEs or total impact of it is worse than the MTX then I guess you could decide then to go through the two week drug removal process and reinstate the MTX? Also, don't assume why one drug is offered before another - sometimes drs favour some drugs just because they're older and have been around longer, or because of the cost, or because once a 2nd drug is required it's seen as more complex treatment, rather than because of the impact or effect directly on the patient, kwim? I think you're best in this case to ask your rheumy straight out why the Arava wasn't offered as a first-line treatment, that'll tell you heaps.
It must be so frustrating when the drs don't seem to be able to agree, because you've got multiple complicating factors all happening at once. But I refuse to believe that there isn't someone else out there who has been in a similar situation and this must be reflected in the medical literature somewhere! Can you ask one of your drs (pick the one that's usually the most helpful!) to consult a health library or even some sort of pharmaceutical specialist to clarify on your behalf? Sometimes all it takes is just a teensy bit more information to make the whole decision clearer.
hun, this is a real tough one for you, isn't it? So many things up in the air and so much potentially depends on you making the right decision. So frustrating that medicine is more art than science.
I really hope you find a good IVF dr if you can't find your old one. I think that would probably be the first point of call if you're thinking long term about side effects and TTC.
again, I can't empathise but I really think this sucks big time.
Marydean, we've been working on the prednisone for a while. I stubbornly refused to go higher than 20mg (although with the amount of nurofen plus and panadeine I was going through I could easily have been on twice that amount or more). The drop to 10mg through 15mg was easy... Getting below 10mg just didn't happen at all until I got the 1mg tablets and started going 1mg at a time. I'd need two weeks before I could take the next drop, but now that I'm below 5mg and the weather is warmer, I'm trialling a one week reduction. Even if I can do alternate days of 3mg/4mg for a while, I'd be happy. You are right, it is a complete ***** of a drug to get off. I did wonder if it was a PBS thing - he also mentioned biologics but said that before I could go to them I'd have to try arava. Perhaps it's a similar situation. The issue with trying arava short term is that it's a slow-acting drug. We're talking 3 months before we start to get the full effect, and the MTX was very similar. There's no quick fix for auto-immune problems.
Ruf, thank you. I think I would really like to catch up, I'm feeling rather isolated as nobody around me really understands what it's like.
Jennifer, thank you.
So, if you were and IVF doctor, would you think it strange if a patient walked through your door not wanting to have a baby just now but asking for advice on managing a condition completely removed from what you treat? I just don't want to waste my time and money tracking him down and going to see him if he's just going to laugh at me.
I don't have any experience or advice here, just wanted to offer cyber hugs cause that's all I've got.
I don't think it's weird to see your IVF doctor like that - it sounds very reasonable to me. I'm seeing one next week to figure out our plan with no intention to go back to ivf before next year.
After what you've said (and with your history), given the long term effects and the slow weaning process from the drugs you're talking about I'd think it was odd if you just showed up expecting to start TTC straight away! I would have thought that was being a smart patient.
My brain kicked into gear earlier today... When my FS left his clinic, I only got letters from the clinic because I wasn't actually being treated by him at the time. I remembered that I have a friend who is still his patient - she got the letters from him and she's given me the details I need for his new clinic. I was worried that he would only have rooms in Liverpool, but it looks like he's got Westmead rooms as well.
One problem solved... I just need to muster the courage to go to my GP and get a new referral and then make the damn appointment! I'm half tempted to see what Macellus' FS says about getting a plan in place in the early days... I just feel a little funny about that because I can't see us going back before Sam's two, and possibly not until he's 5. I'd be 39 then... it's not too late, is it?
I just wish life could be easier. It just gets so frustrating that I can't make a single move in life without having to assess how one of my many health problems will impact on what I'm trying to do. I just don't remember what it's like to be well... and I don't remember life without having to take handfuls of tablets every day.
Oh, yours is such a hard road! I am glad you've found your doctor at least.
I need to see my FS a little in advance to find out what my protocol is likely to be so I can figure out how to adjust my meds.
But I only take one tablet and it's not nearly so complicated as your situation. It sounds to me like you NEED to see him well in advance to get some idea how you're going to tackle this. It makes no sense to wait till later at all - you need to plan several years in advance. And you probably need plan A, B and C depending on what meds you're on etc...
BW Just wanted to let you know I"m still thinking of you as you find your way through this dilemma, and esp all the physical hardship of weaning of drugs/changing meds etc.
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 don't know what to do
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s! Have you spoken with your drs on the best way to step down off the prednisone (withdrawal can be horrible) - good luck with that process. 
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