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.
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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