That wasn't the appointment I expected!

Not sure if this is the right forum for this, but it seems to be the best place I can think of...

Last Friday I skipped my methotrexate.
The one before that I took 10mg instead of the usual 17.5mg
Before that I skipped it completely.
Before that I took 10mg.
Before that I skipped it completely
Before that was the last time I actually took my full dose as prescribed.

I had blood taken on Thursday in preparation for an appointment with my rheumatologist today. I expected my inflammation markers to be sky-high, but everything else to be ok. I expected to get a lecture on not taking my methotrexate and another one for not calling when I was obviously in so much pain from my blood test results.

What I got... Inflammation markers better than they have been in a while and liver enzymes worse than they have been since I started on the mtx. As they were perfect before we started, that's been the final straw for my rheumy. No more mtx.

Current plan... adding 5mg of prednisone per day. I'd actually done this myself two days ago and am finding that I've gone very quickly from the woman who couldn't get off the lounge to being able to cope with Sam solo through bed time last night. I feel fine today, just tired, but you expect that after episodes of severe pain. Increasing my salazopyrin from 2g per day, initially to 2.5g per day if we can do it without my head falling off, and if I'm ok after a month we can go to 3g per day.

And the scary part of this - my rheumy has suggested that going back to IVF is a now or never kind of thing. We have to kick the mtx before it completely trashes my liver, and he really doesn't want to go to the other options until we have closed the door on IVF.

So now I just need to collar DH and get him to sit down and talk to me about whether we go back again or not.

Weird that I'm so freaked out by hearing my rheumy say it when it was what I was thinking anyway...

And I guess that the all-too familiar pain in my chest that I thought was sore joints in my rib cage (because it eased when I took my bra off) is actually an inflamed and very unhappy liver - which coincides with taking the amoxycillin duo forte which is unfortunately the only antibiotic that does anything for my sinus infections but has a long history of pretty severely trashing my liver. Dammit.

BW

Wow. That's full on.
Your poor liver :hug: But baby time again...?!!! :D

Maybe. Last time I brought it up with DH (only a couple of days ago) he just asked me if I could cope with two. Previously when I mentioned that I wanted to wait until Sam was 4 he got cranky about "how old do you want me to be?".

I just don't know where he's at... and he's in a mood tonight so I can't really bring it up easily and expect a sensible discussion!

BW

How do you feel about it? Maybe now, having put work aside, is a good time?
I hate it when they're in moods and you can't talk about stuff :(

Wow. I mean, Wow.

What a weird appointment! Do you *want* to go for #2?

It's not like I'm busy with work or anything to make it not a good time to go for it!

Leaving work has left us with the finances to be able to do it now, and I suspect that if we wait too much longer that money will get used up on other things (like fixing DH's bomb of a car that I would LOVE to be rid of!).

And I do have to admit that as the mtx is having no impact on the arthritis at the moment because I haven't taken it properly for so long and I'm looking at a 6-8 week wait before it even starts to be effective again even if I was allowed to take it, and a similar wait for any of the other drugs that I'm not allowed to try...

On paper it looks like a good idea to go now. But the fact that a doctor has come out and said it makes me panic.

In reality, I am a very unwell woman dealing with chronic pain and fatigue and some days Sam is more than I can cope with. I've just left work because I was too unwell and if I can ever get my butt into gear will be applying for a disability pension. It seems that there is a gigantic question mark over my ability to cope with two children. I was severely anemic while pregnant with Sam and we never really did get on top of it, so coping with an active toddler while pregnant seems high doubtful...

This may seem strange but I have moments where I wish we didn't have frozen embryos so that I could simply close the door on IVF and more children... but it's impossible to do when we have two frozen embryos waiting for us.

I want to go for number 2... but in the next heartbeat I'm absolutely petrified and convinced I won't cope and number 2 would be a seriously bad idea.

BW

huge hugs huni - i really do understand the dilemma. iam waiting to go back to my fs and talk about the reality of pregnancy with the state my womb and organs are in and the pain etc from the scarred tissue. iam on morphine aswell for the pain so i don't know what to do myself.
i think you need to talk to your DH. I really hope things improve hun- its not easy.
if you want to talk pm me, lots of hugsxxxx

BW,
You have a lot of thinking and talking to do, and I hope you can come to a decision which feels right.
On the issue of anaemia in pregnancy I have a similar probem. I had iron injections (ow) in my first pregnancy, and nearly took myself to hospital towards the end of my last pregnancy as I couldn't stand up at all and felt very desparate. I have spoken to an ob and midwife about it and next pregnancy we are going to go for iron infusions from the outset. They are extremely effective and just require heading to the day unit of the local hospital. So maybe if you could have a similar plan that would be one less thing to worry about?
I know a couple of mums with Rheumatoid arthritis (sounds similar to your condition). Some days are harder than others and no doubt its bloody hard work. Good support is really important for the bad days, and eventually your little kids become big kids and don't have so many physical needs... Is there a support group that you could perhaps talk to others about their experiences of parenthood?
Good luck,

PollyA, I have a serum-negative form of rheumatoid arthritis, so you were right on the mark! It isn't causing joint damage but can and will flare up in every single joint of my body - even some of the really fun non-movable joints. I had bad flares after pregnancy which made caring for my new-born a little tricky. In some ways it was good that he was born at 36 weeks weighing just under 2.5kg - I had a very sleepy, light baby who did the newborn eat/sleep thing for a bit longer than most babies. He's now a hyperactive 13kg 18 month old, though. I will certainly keep your suggestions in mind for how to deal with the anemia in a future pregnancy - thank you for that information!

I still haven't spoken to DH. He worked ridiculously long hours on Monday and is quite tired and run down. This morning I did mention the liver problems and the switch from methotrexate back to prednisone - but that was it. When he's in this kind of state, small amounts of information at a time work best. It came up because he wanted to take last night's left overs for lunch today and have lamb shanks for dinner tonight. There's no way my liver in its current state will cope with a meal of lamb shanks (too greasy, I don't much like eating lamb at the best of times!) so I said I'd do the lamb shanks for him and Sam, but would have last night's left overs for dinner instead. He seemed ok with that. I guess there's no particular hurry to make a firm decision yet on what I want to do. I have to give it a little time for the methotrexate to get out of my system before we do anything, anyway.

I won't increase the salazopyrin until my liver feels a bit less congested, and my rheumy wants me to stay on the megafol until I am advised otherwise by FS/OB. I have ridiculously high folate levels from the last check my GP did, but I'll be a good girl and follow instructions. Ironically, in that last check, I also had very high iron levels and currently don't take any supplements containing iron! Already have the calcium/vitamin D supplements going to help my bones cope with the prednisone's calcium depletion...

Rambling... I just wish it was an easier decision to make!

BW

Wow, hun. :hug: what a tough decision. Whatever you choose will be the right thing. Just trust yourselves and go with whatever it is life throws at you.

You have me speechless darl, I really don't know what to say. I can't offer any wisdom, but I wanted you to know I'm here if you ever wanna PM me as a sounding board :hug:

Hi BW. You seem to be going through a very tough time. Have you weighed up the positives and negatives about having another baby. Actually write them down and look at them and analyse. It's easy to say you want another baby but it has a big effect on your life and the life of your child and husband. I am in the same position. My DH desperately wants another but I know that I am not healthy enough to cope with another. Be good to yourself, you are going through alot.

If it weren't for the fact that I had frozen embryos, I could easily walk away with Sam as an only child and be happy. But knowing that he has two potential siblings in the freezer makes me feel like I really need to give them a chance. I can't donate them. I can't just give away Sam's siblings. The way I feel today has me thinking that a second child would be doable. But I'm all too aware of the fact that there are days where Sam feels like too much and I have no family that live close...

I guess I just have to wait and see what DH thinks and hope he comes home in a better mood today!

BW

It's a bit sad that nearly three weeks after the appointment I finally managed to tell DH all that was said. Along the line of "I think my rheumy is full of crap because..."

He hasn't made any comment on it.

But I think I've decided what I want to do.

I am going to consult with an FS or two, including one who's a reproductive immunologist (Sydney girls will know who I'm referring to!) and possibly another rheumy. Time to bring out the arsenal of second opinions!

If it really is now or never then I guess we suck it up and jump on in. At least I know there will be a reprieve from the arthritis pain when I jump up to 10mg of prednisone to cycle, and when I'm pregnant.

If it's not a now or never thing, then I think I'd like to leave it for another year. I prefer the idea of an age gap on the other side of three years! I know many people manage with much smaller age gaps, but I'm not many people and I do have significant health issues to consider and virtually no family support anywhere near close to us.

BW

A second opinion (or two) sounds like a good way to go. Perhaps you'll get another surprise from these appointments?

i really hope you get some proper answers huni. the only thing i can say is exactly what i said to my dp is i want all the facts, risks etc before i commence Ivf. I am on morphine for the pain and it scares me because of the drug and the probs it can cause. You have support here huni, take care xox