To think the doctor should have made the consequences of this medication more clear?

[WeldedParentMaterials]

DH has an illness which came on within the last year, it is being managed (ish) by medication.

One of the side effects of some of the medication is that it causes infertility while you're on it and birth defects if you were to conceive on it.

When he was told about this treatment the doctor gave a list of potential side effects and said "you can't have babies while you're on it". At the time DH was so unwell he agreed as thought it would make him better.

It now transpires that he won't get better, and he needs to stay on the drugs indefinitely, maybe forever.

We have no children yet. Had he known at the time this was potentially going to be the case he either wouldn't have agreed or we would have tried to get some of his sperm frozen before the treatment started.

I think the doctor should have explained this and given us this option. I feel like we've been robbed of a family.

I'm really

YANBU, OP. The Dr has actually broken the law.

Dr's have a duty to make sure that the patient gives 'informed consent' to treatment. If the patient is not reasonably informed, then their 'consent' to treatment is invalid.

The Dr has clearly not taken steps to ensure that your dp was giving informed consent to treatment. He / she could actually be guilty of an offence / sued.

I know that this doesn't really change what's happened, but I think you should make a complaint so this doesn't happen to other patients in your husbands position.

When you next see the doctor talk about how much you want to start a family. There may be other drugs, it may be possible to take a break, your DH may be too unwell or there may be no further options.

Either way it doesn't sound like either of you have a good understanding of your DH's illness or what the longterm outlook is. 4

It's the illness really that is the problem here, not the meds, and you both need to understand it better to know what your options are. It is very difficult coming to terms with a lifelong illness and it's that that is robbing you of the future you had planned.

I'd also strongly recommend that couples go to appointments together - the person who isn't there always has different questions, with this sort of illness you are in it together and you have 2 heads to remember the information overload. I see patients with serious illnesses and it is rare for me to see a member of a couple on their own.

Is true that at the time the doctor maybe hoped that it would have a better effect than it has and maybe good it wouldn't be forever, that's the only explanation is can think of as DH says he definitely didn't understand it to be anything longer than a few months. It wasn't until recently when DH pressed about how much longer he'd be on it the doctor said he wouldn't recommend coming off it.

But I think given the potential that it could be a long term thing, they should have offered him the chance to get his sperm frozen. Just in case.

NHS consultant appts are only 15 minutes typically. Medics just can't cover every possible concern. Whatever should have happened, you are where you are now. Need to consult about strategies going forward.

Kundry it's true that we don't have a grasp on the long term consequences of the condition or treatment, but it doesn't seem like the doctors do either to be fair. So it's hard to find out. (without the dreaded Google which as posted above is quite frightening).

And with that list I think it should have warranted more of a discussion.

MIL actually marched in with him to the consultant appointment until she was booted out after about 20 mins So no chance of me getting in!

Booted out by your dh, or by the consultant?! If the latter, that is not on at all. Your dh can have whoever he likes in with him.

Several posters have told you that conceiving while taking methotrexate might still be a possibility. And if the drug isn't working well, that begs the question as to why he is still on it? I appreciate that it is early days and you are feeling shell shocked, but it seems to me that you are giving up too easily! You need to talk again to the docs about the possibilities for managing the condition so as to enable you to have the family you want. From what I can gather from this thread, you seem to have concluded that all is lost mainly from reading the package warnings!

Just wondering if your DH has got RA?

I've been on MTX for many many years for severe RA (16yrs) and although at the beginning I wasn't well enough to take a break from it to TTC, once they got the dosage & combination of drugs right after a few years I was able to take a break (my disease wasn't under control but was bearable) and as a result we have a wonderful 6yoDS, we are currently trying again and so I am on a break now too.
It's not necessarily an easy choice but the effects of MTX on fertility are reversible by taking a break (3mths prior to TTC) and for men especially this just requires a bit of forward planning - it's also slightly easier for blokes as they can go back on MTX as soon as you are pregnant. I had to wait until I finished breastfeeding. (With DS that was a 17mth break if
I had been a man it would have been 6mths) It's also not a matter of going completely cold turkey when off them as you can supported by other drugs such as steroids which can give some relief over the short term. I understand your knee jerk horror on this as it is a horrible scary drug as are a lot of drugs that treat immune diseases but I think you are overreacting due to incomplete understanding of what the treatment actually means.
If your DH is happy for you to go with him to appointments it may be useful for you to go with him and speak to the consultant together and to prepare a list of questions and concerns you have.
When we decided to consider TTC, DH came with me to discuss the implications with the consultant together and we received a lot of support.
I have a male friend who has had 4 of his 6 children whilst being treated with MTX - each time he took a short break and then went back on.

OK - Married men in their 30s coming with their mothers is, er, unusual! Don't blame your DH for chucking her out. (And I have booted other relatives out of consultations myself if they were being counter-productive) And it may have made him want to do this by himself or feel he needs to cope in his own way. But it leaves you on the outside, wondering about when you can have children.

I'd suggest this is something you need to talk about with your DH - how is he coping with the illness, what can you do to help him, what can he do to help you, a list of questions to ask next time and can you join him to ask the questions about having a family. It's likely the doctor would have been much better sadly at addressing the fertility issues with a female patient.

Although the methotrexate list is scary, in many clinics it's a routine drug to prescribe. Informed consent wouldn't involve necessarily going through every item on the list but the most common side effects. Doctors also do tend to be vague about the future as they don't have crytal balls - I'm v careful never to make cast iron predictions or promises - but they probably have a better idea of what the future holds than your DH has understood so it's worth asking.

You definitely need to go together specifically for a meeting about fertility. Get your GP or your Dh's GP to write to the specialist asking for one. It may be that the GP responded to a question of your DH's about taking a break at times by saying 'not a good idea' without realising he was asking about fertility. You need to get your cards on the table - 'We want a family, what are our options given DH's illness' and go from there.

I'm also a bit gutted about losing the "privacy" aspect of starting a family because at best is going to involve a lot of pain and stop-starts and tests and possibly IVF.

Ridiculous thing to worry about, given where we are, but I'm a very private person and I'm gutted it's not something we can just get on with quietly with no pressure.

Welded, do you know that for sure? I agree you need to discuss the issues around having children with a specialist, but that can be quite neutral and doesn't have to involve any timescales? If your DH does need to take a meds break, he could discuss any symptom/management issues quietly with his GP, separately from announcing 'WE'RE TTC' in the room?

It is crap having to talk to other people and plan around and lose that 'privacy' but when it comes round to it it's actually such a tiny bit of the whole thing. It just feels massive when you first come across it.
Believe me it a massive thing for me at the moment as we are going through it: so I do understand your misgivings and it's particularly raw and feeling unfair for us as after prolonged struggle to TTC, we are back on that route after suffering a miscarriage at 16wks. To say I was gutted would be an understatement, the medication feels like an extra kick in the teeth BUT on the positive side is once I got my Med combination right (which has taken time) I had a significant improvement in my quality of life & health and from that point it is sooooo much easier to look at the issues caused by the treatment (including those round TTC) as just something we can and will deal with when we need to.

Kundry, Zoe, Wonky, Julio, thank you.

No idea agree on getting ahead of myself. I know this only from Internet reading and that the doctor when asked if he'd be able to come off it said no, he was on it long term.

It's giving me hope though hearing that some people do manage to come off it for a while, and maybe we just need to give it another year or two for him to stabilise a bit more.

Jumping ahead of myself and bit. Some nights I just get so upset about it and can't see any hope.

Wonky x-posts, I'm so sorry about your MC

Welded - so sorry that you are in this situation. I don't think it's helpful that people are making excuses for the doctor in this circumstance e.g. "NHS consultant appts are only 15 minutes typically. Medics just can't cover every possible concern." Fertility is pretty fundamental FFS. And if it's well known that patients only retain 30% of information, then the communication about important issues needs to be better.

It does sound like there are options for you though, OP. So fingers crossed.

Re: people asking you when you are going to have a baby - if people are aware of your DH's illness, would you consider disclosing that his treatment means that you can't ttc at the moment. It would get them off your back.

My friend was diagnosed with RA last year. The symptons were life changing, her hands were very swollen and she couldn't use a keyboard.

Her GP told her that he referred several new patients each month with RA.
Some had had great success with an exclusion diet rather that taking the conventional drugs.

She follows the diet and it works well.
The swellings have gone and so has the pain.

Would you DH consider doing that?

As you are so worried now, I definitely wouldn't advise waiting for 2 years to see if things get better. The doctor needs to know that TTC is a priority for you otherwise in 2 years it'll be 'carry on as it's responding now, wouldn't advise coming off' and you will have waited for nothing.

meandjulio is quite right in that you need to lay your cards on the table (possibly also to your DH if he doesn't think this is as big a deal as you do).

yetanotherchangename , I don't think anyone needs to make an excuse for the Dr , he has done nothing wrong - he mentioned it to the OPs DH and they were given the leaflet to read , short of actually reading it to them what do you propose he should have done . The OP and her DH have some decisions to make and need to go together to see the Dr to get their options , preferably without the MIL !

I will never 'come off' the drugs, I will have to most likely take them for life but having a break or changing meds round for a bit is normal, especially with regards to TTC. I think that that probably what the Dr meant that these are not a cure that you take for a bit and then get better but more something you have to take in order to keep controlling the disease.
My MTX breaks use other drugs to control (albeit not as well) the disease whilst TTCing but unfortunately I am likely to need treatment of some sort or another until I die.
Arthritis Care have a good website, online discussion boards and helpline for sufferers and their families. They cover many AI arthritis type diseases & have information leaflets on meds, having a family etc , other Auto Immune diseases tend to have their own supporting groups.
For a bit of inspiration have a look at A Family Perspective

I started on methotrexate at 25 knowing that I could not conceive while on it. I stopped about 30ish and now have 2 lovely perfectly healthy Dds.
Speak to the consultant and let him know about your wishes for a family. How does your DH feel? Is he happy to conceive while feeling unwell?
There is so much information about drugs and their side effects online it is good to research fully.
Just tell any people asking about your plans to have a family that your priority is to get your DH well.
Also plenty forums online and on facebook.

He'd try it, yes definitely. He can get so bad that is hard to imagine that a diet could help him but he'd definitely try.

DH days he's fine if I want to just say to people that we can't have DC because of his illness/treatment. But I don't want the pity that would come with that and I don't want to discuss his medical stuff with nosy friends and acquaintances, because there is always follow up questions, people won't just let it go. It doesn't help that every woman in know is either pregnant or had children fairly recently, so they don't seem to be able to talk about anything else at the moment.

We've talked about TTC either in gaps in treatment or if he can't do that just trying anyway and hoping for the best. But he's not willing to try while taking it as he says he couldn't live with the guilt knowing it was ' his fault' (even though it could just as easily be mine/just one of those things). And while he says he'd be willing to try and come off it, when he has a bad spell (frequent) we know there's just no way he could.

Welded, please do make that appointment with the specialist to get the information on specifics. to you both.

OP, my friend's dh has had severe ra for a decade and when they decided they wanted children agreed that as the methotrexate was working for him it wasn't fair to ask him to stop. They were given ivf and donated sperm (this was Canada so not sure what's available in UK).
They now have a lovely ds whom they both adore and dh's health is stable.
I second that you should discuss options with your dh's rheumatologist if the methotrexate isn't working as well as it could.
Best of luck and hopefully it will all work out.

yetanotherchangename no one's making excuses for the doctor. If the patient typically retains only 30% of what is said in an appointment then a) how do we know the doctor didn't say it, and it was in the 70% that got forgotten? And b) what is the point of spending lots of time going over stuff that will only be forgotten? You say communication could be improved- perhaps by giving the patient some sort of written information (like a leaflet?) that they could read at their leisure and contact the doctor if they have any concerns?

In an ideal world, doctors would have all the time in the world to spend with you. But meanwhile, in the real world, there is a choice between 15 min appointments which means the patient has to actually read the patient information leaflet to understand everything, or huge waits and delays in clinic because the dr has run over on every single patient, or longer appointment times but waiting months if not years for an appointment, or enough doctors to lengthen appointments without increasing wait times (but how would you fund them?).

As I said before, I would imagine the dr didn't spell it out because the majority of conditions that methotrexate is used for are chronic conditions, meaning there is no cure and medication can only control symptoms.