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

(57 Posts)
WeldedParentMaterials Fri 06-Feb-15 23:48:22

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 sad

olgaga Sat 07-Feb-15 00:15:35

What were the consequences for your DH without the medication?

Has your DH asked about alternative medication?

3littlefrogs Sat 07-Feb-15 00:22:43

I agree with you OP.

Can your DH stop the drugs for a while and get some sperm frozen?
Or will he deteriorate more quickly if he does that?

PrettyPenguin Sat 07-Feb-15 00:33:53

Is this a drug for an auto-immune disease? I'm assuming it's an immune suppressant like methotrexate or something that your husband has been prescribed?

If that's the case, plenty of people can and do take 'holidays' from their drugs in order to conceive (and carry, in the case of women) a pregnancy. It usually requires a period of not taking the drug, 3-6 months usually, to get it out of the system and then for your husband he would be able to start it again once you conceived, as he wouldn't be the one who was pregnant. There will be alternative drugs available to take as a temporary measure whilst the affecting drugs are stopped.

If it's something else he is taking then I'm not sure. It's definitely worth going and having a chat with the doctor - there will be options available to you both if you want to have a family, you'll just need to have a drug plan worked out in advance.

HicDraconis Sat 07-Feb-15 07:28:11

I agree that the doctor should have mde it clear that this was a management strategy - ie something which would need to be taken lifelong - as opposed to a cure - ie something which is taken temporarily.

However it's possible that this was mentioned but you or your DH didn't remember it. It's well known that only about 30% of information given while discussing treatment options is retained, which is why taking someone else along, taking notes and having the chance to talk things over with a specialist nurse after the doctor's appointment is always recommended. It's unlikely that this is the case as you have such strong feelings about it you're likely to have remembered it but it's possible.

It may also be possible that the doctor didn't realise you thought this was a cure and that he/she thought it was obvious that whatever your husband has is not something which can be cured, only controlled and managed.

In either case, I would write a letter stating your concerns, so that future patients are counselled appropriately.

I would also ask for another appointment - for both of you - with the intention of talking about how you start a family while your DH is receiving treatment. That might be a treatment holiday, or an alternative drug while you TTC, for example.

YANBU to want a family but don't feel robbed of your chances yet, there is generally a way through. On the plus side it sounds like your DH was very ill before and has responded well to treatment.

TakeMeUpTheNorthMountain Sat 07-Feb-15 07:41:38

Is this a drug for an auto-immune disease? I'm assuming it's an immune suppressant like methotrexate or something that your husband has been prescribed?

If the above is the case, and please bear in mind I am not a doctor, you can take breaks. I actually conceived on MTX the first time in error but luckily found out I was pregnant early on. I went on a break and went on Enbrel which is safe to conceive on and am currently 35wks pregnant.

Please speak to doctor, its not over yet!

ineedausername Sat 07-Feb-15 07:55:11

Yanbu.
My brother in law is taking an experimental medicine for treating chrons and spondylitis. Even though they weren't married or thinking about children, the doctor told him he needed to have sperm frozen for the future 'just in case'. I believe the doctor was pretty strict about it.

CrohnicallyCold Sat 07-Feb-15 08:09:54

In general, I think YANBU. When I was given medication (high dose steroids) in hospital, I was given no information about side effects etc, not even a leaflet to read. So when I stared suffering with side effects (steroid rage) I had no idea what was going on and was quite scared.

However, when you are given medication as an outpatient, it always comes with a leaflet and you have the chance to google etc, so I think the onus is on you to do the research. It would take a lot of the doctor's time if he had to explain every last detail to every single patient, and there's still no guarantee that the patients would understand and retain all the information. Of course if a patient has specific questions, or is particularly vulnerable (eg LDs, EAL) then the doctor or a nurse should be able to make time to ensure they fully understand. But the majority of people can read and understand the patient information leaflet and contact the doctor/nurse if they need further information.

I'm betting it's methotrexate too, but as has been said, depending on your DH's illness there are other options out there and he should be able to switch to something that will allow you to start a family.

CrohnicallyCold Sat 07-Feb-15 08:12:06

An experimental drug is different as they don't yet know the effect it will have. Something like metho where they know the effects are reversible, I think they would usually prefer a treatment break to allow natural conception.

LittleBairn Sat 07-Feb-15 08:31:40

YANBU Not quite as serious as your DH medical issue but my DH should really be taking medication for a health problem he has delayed it a few years so we could have children because it can cause fertility issues in men. He came across this info accidentally. The Drs weren't aware of the side effect , when he raised it with him he had to go away and check up on it. We are a lot more careful about researching medication now because if it.

What are your options? Is it reversible?
If its not I would consider making a formal complaint that's a serious error in judgement if the Dr hasn't fully explained the side effects.

WeldedParentMaterials Sat 07-Feb-15 08:48:12

I was at the hospital but not in the consultant's room with DH so I wasn't there when he was told about it (I also think the doctor should have called me in as this affects me too). We were given a leaflet too.

Both the Dr and the leaflet said about not TTC on it but not that this was something he was going to be on forever.

It is possible to take a holiday from it for a few months but the Dr says he doesn't recommend it in my husband's case.

Worst thing is the drug's not even working very well. So it's like it's ruining our future for nothing.

CrohnicallyCold Sat 07-Feb-15 09:01:00

Is there an alternative that he could go on permanently (as opposed to a treatment holiday) instead? Seeing as this treatment isn't even working that well, what does the Dr recommend as the next stage treatment, or even a 'side step' treatment as it were?

Is this the first treatment he's tried? And has his Dr fully explained the consequences of his illness? I ask because I also have a chronic illness (Crohn's) and I'm sure it was explained at diagnosis that there is no cure, only management. So whatever treatment I try (with the exception of steroids) I am to expect to be on for the foreseeable future. Perhaps the Dr thought he (or a colleague) had already explained that bit, so it didn't need explaining when he started this drug.

TakeMeUpTheNorthMountain Sat 07-Feb-15 09:12:54

Do you mind me asking if it is for RA or another auto immune condition? If so, its not the only option and the first one never works anyway, it is likely he will be changed meds.

Brandysnapper Sat 07-Feb-15 09:23:20

You need an appointment together to discuss all the options, can he come off it for a while etc. I do think you needed more info. My dh was given tablets for a prostate condition that would have impacted on his fertility. It said this in the leaflet, it wasn't discussed with him, and we were ttc at the time. When he went back to say he wouldn't take them, the GP said it hadn't occurred to him "at your age" (late thirties, and with one child). Fortunately his condition wasn't life threatening and he held off taking them for a few months - enough time to conceive ds2.

Caronaim Sat 07-Feb-15 09:39:09

To be fair, it isn't the treatment that is messing up your life, it is the illness. Very sad for both of you though.

WeldedParentMaterials Sat 07-Feb-15 09:56:34

Caronaim I know, I'll admit I'm not being very rational at the moment.

Brandy I think that's awful too. I do really think that if you are giving drugs like that to someone between say 20-45 one of the most important things that you should tell them is about the fertility side. I really do.

We are really 30s, recently married - doctors knew this.

WeldedParentMaterials Sat 07-Feb-15 10:00:43

And if one more person says to me "when are you going to having children?"/ "you're next" etc etc I think I will either scream or break down into uncontrollable hysterics sad

They know DH is unwell, don't know about the drug-issue, in fairness, but I still think it's so insensitive. Or I'm too sensitive

watchingthedetectives Sat 07-Feb-15 10:03:20

Can you say what the drug is - don't have to say the condition but there is a bit of misinformation about some of these medications.

Also they do affect men and women TTC differently.

Caronaim Sat 07-Feb-15 10:03:22

flowersflowersflowers

WeldedParentMaterials Sat 07-Feb-15 10:29:31

It's Methotrexate.

<outs self>
<thinks of another new name>

It's know, sorry, it probably would have been helpful to start with that info! <paranoid> smile

EmmaJacksonHarley Sat 07-Feb-15 10:33:07

Blimey.

"Methotrexate may cause very serious, life-threatening side effects. You should only take methotrexate to treat cancer or certain other conditions that are very severe and that cannot be treated with other medications. Talk to your doctor about the risks of taking methotrexate for your condition.

Tell your doctor if you have or have ever had excess fluid in your stomach area or in the space around your lungs and if you have or have ever had kidney disease. Also tell your doctor if you are taking nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, choline magnesium trisalicylate (Tricosal, Trilisate), ibuprofen (Advil, Motrin), magnesium salicylate (Doan's), naproxen (Aleve, Naprosyn), or salsalate. These conditions and medications may increase the risk that you will develop serious side effects of methotrexate. Your doctor will monitor you more carefully and may need to give you a lower dose of methotrexate or stop your treatment with methotrexate.

Methotrexate may cause a decrease in the number of blood cells made by your bone marrow. Tell your doctor if you have or have ever had a low number of any type of blood cells or any other problem with your blood cells. Call your doctor immediately if you experience any of the following symptoms: sore throat, chills, fever, or other signs of infection; unusual bruising or bleeding; excessive tiredness; pale skin; or shortness of breath.

Methotrexate may cause liver damage, especially when it is taken for a long period of time. If you drink or have ever drunk large amounts of alcohol or if you have or have ever had liver disease, your doctor may tell you not to take methotrexate unless you have a life-threatening form of cancer because there is a higher risk that you will develop liver damage. The risk that you will develop liver damage may also be higher if you are elderly, obese, or have diabetes. Tell your doctor if you are taking any of the following medications: acitretin (Soriatane), azathioprine (Imuran), isotretinoin (Accutane), sulfasalazine (Azulfidine), or tretinoin (Vesanoid). Ask your doctor about the safe use of alcoholic beverages while you are taking methotrexate. Call your doctor immediately if you experience any of the following symptoms: nausea, extreme tiredness, lack of energy, loss of appetite, pain in the upper right part of the stomach, yellowing of the skin or eyes, or flu-like symptoms. Your doctor may order liver biopsies (removal of a small piece of liver tissue to be examined in a laboratory) before and during your treatment with methotrexate.

Methotrexate may cause lung damage. Tell your doctor if you have or have ever had lung disease. Call your doctor immediately if you experience any of the following symptoms: dry cough, fever, or shortness of breath.

Methotrexate may cause damage to the lining of your mouth, stomach, or intestines. Tell your doctor if you have or have ever had stomach ulcers or ulcerative colitis (a condition which causes swelling and sores in the lining of the colon [large intestine] and rectum). If you experience any of the following symptoms, stop taking methotrexate and call your doctor right away: mouth sores, diarrhea, black, tarry, or bloody stools, or vomit that is bloody or looks like coffee grounds.

Taking methotrexate may increase the risk that you will develop lymphoma (cancer that begins in the cells of the immune system). If you do develop lymphoma, it might go away without treatment when you stop taking methotrexate, or it might need to be treated with chemotherapy.

If you are taking methotrexate to treat cancer, you may develop certain complications as methotrexate works to destroy the cancer cells. Your doctor will monitor you carefully and treat these complications if they occur.

Methotrexate may cause serious or life-threatening skin reactions. If you experience any of the following symptoms, call your doctor immediately: fever, rash, blisters, or peeling skin.

Methotrexate may decrease the activity of your immune system, and you may develop serious infections. Tell your doctor if you have any type of infection and if you have or have ever had any condition that affects your immune system. Your doctor may tell you that you should not take methotrexate unless you have life-threatening cancer. If you experience signs of infection such as a sore throat, cough, fever, or chills, call your doctor immediately.

If you take methotrexate while you are being treated with radiation therapy for cancer, methotrexate may increase the risk that the radiation therapy will cause damage to your skin, bones, or other parts of your body.

Keep all appointments with your doctor and the laboratory. Your doctor will order certain lab tests before, during, and after your treatment to check your body's response to methotrexate and to treat side effects before they become severe.

Tell your doctor if you or your partner is pregnant or plan to become pregnant. If you are female, you will need to take a pregnancy test before you begin taking methotrexate. Use a reliable method of birth control so that you or your partner will not become pregnant during or shortly after your treatment. If you are male, you and your female partner should continue to use birth control for 3 months after you stop taking methotrexate. If you are female, you should continue to use birth control until you have had one menstrual period that began after you stopped taking methotrexate. If you or your partner become pregnant, call your doctor immediately. Methotrexate may cause harm or death to the fetus."

lljkk Sat 07-Feb-15 10:49:02

I wonder if doc didn't know if the meds would work, so couldn't say initially if your DH would be on it forever.
It's such a powerful med that I imagine your DH's condition is quite serious, & doc's worry was about getting your DH treated ASAP rather than thinking long term. There are so many side effects with that med.
What would the alternatives be, what would the consequences have been if you had waited a week for your DH to start the Meds?
Sounds like miscommunication, it is hard to communicate well with patients at the moment when they are most ill & their relatives most worried.

TakeMeUpTheNorthMountain Sat 07-Feb-15 11:08:09

No one is on MTX forever either, thats the thing. Eventually its just not as effective and then you get moved, Enbrel, Plaquinel, Humira, Simponi, one will fit and one will be ok for fertility treatment.

MinceSpy Sat 07-Feb-15 12:20:18

I think you both need to do lots of research about managing your husband's condition and methotrexate. Currently opinions are split on male fertility and birth defects when the man has taken methotrexate. If your husband is also on chemotherapy than that is very different.

HappyAgainOneDay Sat 07-Feb-15 12:27:11

flowers for you and your husband, OP.

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