Anyone had methotrexate? When did you feel it "kick in?"

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1

I just received my first methotrexate on Friday evening, after three long weeks of bloodwork and trying to find the pregnancy on the ultrasound. A 1.7 cm mass was finally spotted when my HCG hit 3250. I was worried about this high number but my doctor said anything under 5000 HCG or 4 cm makes for a good candidate for MTX.

If you’re having or have had MTX, when did you start to feel the effects - when did bleeding start? I’ve bled already but this was before the ectopic was diagnosed. Since the injection I’ve had some cramping, but no bleeding yet. I’m hoping it will work quickly as I don’t want these levels any higher.

I’m grateful to have found this board. This will be my second loss - I had an early miscarriage in the autumn last year. I started off the new year feeling optimistic and am now feeling just…overwhelmed and exhausted. I also find it hard to grieve over the loss of the baby right now, because I’m so preoccupied with my numbers and my own health, and this only makes me feel worse. Maybe after the HCG has come down, it will all sink in.

2

I felt it a few hours later. Very tired, cramping and some stomach upset. Nothing too awful. It sounded worse than it was for me. But I’m on day 4 now, so I’m not sure if there is more to come.

3

I hear you on focusing on your numbers and healing. This has been pretty traumatic so far for me, so I haven’t started processing it fully. This was my first pregnancy.

4

Dear heartlick,

I am so sorry to hear of your ectopic pregnancy and losses,

Common side effects of methotrexate are cramping abdominal (tummy) and it usually occurs during the first 2 to 3 days of treatment. Because abdominal pain is also a sign of a ruptured ectopic pregnancy, report any abdominal pain to your health professional and vaginal bleeding or spotting. The first bleed that occurs after treatment for ectopic pregnancy is not classed as a period, it is the body’s response to falling hormone levels. It can be clotty or like one of your usual periods and some women have bleeding/spotting for up to six weeks.

I am afraid it is difficult to predict how long it will take for your hormone levels to fall. As we are all individual, our bodies respond differently to the drug and it depends on factors like how high levels reached and our unique physiology. What I can say is that it can take a number of weeks for your levels to fall to pre pregnancy levels and while it can take some time, it is not as invasive a procedure as surgery. Also, in terms of chances of future successful pregnancies, studies do not show a significant difference between treatment routes, whether surgical, medical using methotrexate or expectant management (allowing time for the body to resolve the pregnancy itself).

As a gentle reminder regarding TTC following methotrexate, you should wait until your hCG levels have fallen to below 5mIU/mL (your doctor will advise you when this is through blood tests) and then take a folic acid supplement for 12 weeks before you try to conceive. This is because the Methotrexate may have reduced the level of folate in your body which is needed to ensure a baby develops healthily. The Methotrexate is metabolised quickly but it can affect the quality of your cells, including those of your eggs and the quality of your blood for up to three months after it has been given. The medicine can also affect the way your liver works and so you need to give your body time to recover properly before a new pregnancy is considered. A shortage of folate could result in a greater chance of a baby having a neural tube defect such as hare lip, cleft palate, or even spina bifida or other NT defects. This is why the “wait” and then taking folic acid for 12 weeks before trying to conceive is so important.

Please be kind to yourself, do not undertake any strenuous exercise or lifting or housework while your hCG levels are dropping.

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

If we have been able to help you, are you able to help us with a small donation or by volunteering?

Further information is available at ectopic.org.uk

Email us: ept@ectopic.org.uk

We provide a call-back helpline service: 020 7733 2653

The latest EPT newsletter is out now! You can take a look at the Winter edition and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters

Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team

5

Thank you both so much for your replies, and I am sorry for your losses as well. Yesterday (my Day 4) the bleeding started, and it became heavier today. I expected the cramping to be worse but so far it’s been manageable, hopefully it’ll stay that way. Definitely not out of the woods yet, but it’s good to know it seems to be working.

6

Thank you for posting your question and to those who have responded. I’m sorry for all your losses.

I received the Methotrexate injection on Wednesday. I was not bleeding but my HCG was rising and I’ve been diagnosed with an ectopic. It’s now day 3 and no signs of any bleeding or cramping. Is this normal? Has anyone else experienced this? I’m so scared that this isn’t going to work and that I’ll need surgery. I’m hoping someone has a story of hope for me…

7

Dear KJF,

I am so sorry to hear of your ectopic pregnancy and loss,

I am sorry if this is difficult to read but the first bleed after treatment is a response to falling hormone levels because you are sadly no longer pregnant. When your hCG levels start to fall, the body expels the lining of the uterus that had built up in preparation for the pregnancy because it is no longer needed. This process involves vaginal bleeding - it can be clotty or like one of your usual periods and some women have bleeding/spotting for up to six weeks.

It is common for the hCG level to rise on the day four blood test because the action of Methotrexate is not instantaneous, so the cells will have continued to divide for two or three days after the injection was given, and some cells release more hCG when they start to disappear. Once your levels start to fall, you should start to bleed.

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

If we have been able to help you, are you able to help us with a small donation or by volunteering?

Further information is available at ectopic.org.uk

Email us: ept@ectopic.org.uk

We provide a call-back helpline service: 020 7733 2653

The latest EPT newsletter is out now! You can take a look at the Winter edition and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters

Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team

8

KJF:
Thank you for posting your question and to those who have responded. I’m sorry for all your losses.

I received the Methotrexate injection on Wednesday. I was not bleeding but my HCG was rising and I’ve been diagnosed with an ectopic. It’s now day 3 and no signs of any bleeding or cramping. Is this normal? Has anyone else experienced this? I’m so scared that this isn’t going to work and that I’ll need surgery. I’m hoping someone has a story of hope for me…

Hiya

I just thought I would let you know many women don’t feel any symptoms from methotrexate so there is no need to worry I had 2 shots of the stuff and only had some cramping on the fourth day and that was it I was bleeding before the injections but since having them I stopped bleeding and my levels have gone all the way down to 8.4 so it is all about the hcg levels more than anything else my mass still remains at 2cm but it is no longer active it can just take some time for the body to deal with it but not bleeding doesn’t mean that it’s not working

Xx

9

Hello all,

Sorry to everyone that’s dealing with EP at the moment. I’m currently going through it myself. Found out I was pregnant a week today. Initially told it was a PUL and possibly miscarrying, but yesterday’s scan showed a small mass of 9-10mm. Not to mention my hCG levels kept doubling since Monday. I’m 5w5d.

My hCG level today was 2300. The consultant was leaning heavily towards surgery even though I only had mild bleeding. I opted for Methotrexate as I was scared of having another surgery. Had a Laparoscopy for investigatory reasons in July 2018 and it took me quite some time to recover.

I had my first injection this afternoon. I am feeling so confused and stressed…I’m wondering if I made the right decision today to go for the medication? I keep replaying the doctors conversation about how long it will take me to safely conceive again and how time consuming the medication route is.

I wanted to ask you ladies how long it’s taken some of you to have your hCG levels to come down. Also how did you cope in the coming weeks/months mentally, emotionally and whether you had a lot of physical symptoms.

Thanks x

10

Hi kitty2016

It took myself a month to come down but I had to have a second dose of methotrexate as the first one didn’t work. It’s always a difficult decision either way and I kept thinking if I chose the right option it does take longer but you don’t have to deal with a surgery it is always stressful as the situation is stressful in general I myself was very panicky about everything but I think the fact my pregnancy was so unexpected as well it was just a lot to deal with all at once. With the symptoms I felt nauseous and had some cramping but I only had to take paracetamol twice throughout the treatment everyone is different some women don’t feel any symptoms at all. It’s a very tiring treatment so it’s important that you give yourself all the rest you need I was actually signed off work for a month just because I was so tired from it all and it definitely helped!

Your levels might come down quicker and your first injection might be the one that works everyone has different experiences and from what I know most ladies do only need one injection so fingers crossed just don’t worry too much if your levels raise on the fourth day this happens a lot it’s the 7th days results that they really look at.

With the whole having to wait before ttc may seem like a long time but it gives you time to heal physically and mentally

Hope it all goes smoothly for you! Xx

11

@samantha1991

Thank you so much for your reply. It was helpful to hear your experience. I was told I may need a second one but obviously I really hope it won’t come to that. It’s the second day today, and I feel so exhausted. You’re absolutely right about the level of fatigue.

I left work a few months ago to concentrate on starting a family and to reduce my stress level. I suffer from depression and anxiety also and really needed time to unwind. I am really worried about this incident making my depression worse.

Only 1 family member knows about what’s gone on, from the point of finding out I am pregnant to the EP situation and I wish I never said anything. She has no idea what I am going through and I am finding most of her advise unhelpful and uncomforting and hoped I would find better support speaking to someone that’s either gone through it recently or going through now.

I am happy to hear you’re out of danger and your levels have come down. I hope you get back to good health soon xx

12

Hi all,

I had a call back from the hospital today. I had my day 4 blood tests done this morning. My hCG level was 2300 on Saturday and today it went up to 4100. They want me to urgently come in tomorrow to see the consultant, have a scan and consider surgery! I am over their guidelines for injection treatment which is 3000 hcg. So far I am symptom free. The bleeding I had from the 17th March stopped yesterday 25th March. All I’ve experienced so far is fatigue and very very mild abdominal cramping on day 2 and 3 after the injection and literally lasted a couple of hours.

I am really terrified of the possibility of my fallopian tube rupturing! Wouldn’t I have had more symptoms though by now if that’s going to happen? Can it still happen even though I am ok now?

What was the highest hCG levels for you ladies?

I feel so stressed :cry: :cry: :cry:

13

Hi Kitty2016,

My highest HCG was 3250. However, I was told I could get MTX up to 5000, as long as the mass wasn’t too big. (I’m in Canada, maybe protocol is different here?) Since you haven’t been experiencing pain, I think that’s a good sign your tube hasn’t ruptured. Maybe you need a second shot? I did need a second shot. If it helps, the side effects from round 2 weren’t as bad as I thought they’d be. The fatigue was bad, but I didn’t vomit.

I did have surgery after my second shot didn’t take, but they were able to “flush” my tube and let me keep it - perhaps this is what they mean by surgery for you. I was terrified of this surgery, but its been two weeks and I’m recovering well and have even gone back to work today, so know that it can be okay. I know how horrible the waiting is and I’m hoping for the best for you.

14

Oh, and I do think it’s common (from reading other posts) that some people have their HCG initially rise on Day 4 but then steadily decline on Day 7 and after. Unfortunately this wasn’t the case for me, but I saw other successful MTX stories where this happened.

15

heartlick:
Hi Kitty2016,

My highest HCG was 3250. However, I was told I could get MTX up to 5000, as long as the mass wasn’t too big. (I’m in Canada, maybe protocol is different here?) Since you haven’t been experiencing pain, I think that’s a good sign your tube hasn’t ruptured. Maybe you need a second shot? I did need a second shot. If it helps, the side effects from round 2 weren’t as bad as I thought they’d be. The fatigue was bad, but I didn’t vomit.

I did have surgery after my second shot didn’t take, but they were able to “flush” my tube and let me keep it - perhaps this is what they mean by surgery for you. I was terrified of this surgery, but its been two weeks and I’m recovering well and have even gone back to work today, so know that it can be okay. I know how horrible the waiting is and I’m hoping for the best for you.

Hi heartlick,

Thanks for your reply. I’m in the UK and my hospital doesn’t like to give mtx to patients with level over 3000. I’ve had a Laparoscopy already (mild endometriosis) last July and it took me a while to recover, that’s why I am so reluctant to have another surgery.

Glad to hear you’ve recovered well x

16

Kitty2016:

heartlick:
Hi Kitty2016,

My highest HCG was 3250. However, I was told I could get MTX up to 5000, as long as the mass wasn’t too big. (I’m in Canada, maybe protocol is different here?) Since you haven’t been experiencing pain, I think that’s a good sign your tube hasn’t ruptured. Maybe you need a second shot? I did need a second shot. If it helps, the side effects from round 2 weren’t as bad as I thought they’d be. The fatigue was bad, but I didn’t vomit.

I did have surgery after my second shot didn’t take, but they were able to “flush” my tube and let me keep it - perhaps this is what they mean by surgery for you. I was terrified of this surgery, but its been two weeks and I’m recovering well and have even gone back to work today, so know that it can be okay. I know how horrible the waiting is and I’m hoping for the best for you.

Hi heartlick,

Thanks for your reply. I’m in the UK and my hospital doesn’t like to give mtx to patients with level over 3000. I’ve had a Laparoscopy already (mild endometriosis) last July and it took me a while to recover, that’s why I am so reluctant to have another surgery.

Glad to hear you’ve recovered well x

Ah, I’m sorry to hear the laparoscopy was difficult recovery-wise. I hope the MTX will prevent the need for surgery and your levels will start coming down soon. I feel for you - the first week after the injection is the hardest, there is so much stress over whether or not it’s working. I remember feeling like I was going to lose my mind from the uncertainty of it all. But know that I’ve read a lot of positive success stories with MTX - more positive than not - and I hope yours will be one of them xx

17

heartlick:

Kitty2016:

heartlick:
Hi Kitty2016,

My highest HCG was 3250. However, I was told I could get MTX up to 5000, as long as the mass wasn’t too big. (I’m in Canada, maybe protocol is different here?) Since you haven’t been experiencing pain, I think that’s a good sign your tube hasn’t ruptured. Maybe you need a second shot? I did need a second shot. If it helps, the side effects from round 2 weren’t as bad as I thought they’d be. The fatigue was bad, but I didn’t vomit.

I did have surgery after my second shot didn’t take, but they were able to “flush” my tube and let me keep it - perhaps this is what they mean by surgery for you. I was terrified of this surgery, but its been two weeks and I’m recovering well and have even gone back to work today, so know that it can be okay. I know how horrible the waiting is and I’m hoping for the best for you.

Hi heartlick,

Thanks for your reply. I’m in the UK and my hospital doesn’t like to give mtx to patients with level over 3000. I’ve had a Laparoscopy already (mild endometriosis) last July and it took me a while to recover, that’s why I am so reluctant to have another surgery.

Glad to hear you’ve recovered well x

Ah, I’m sorry to hear the laparoscopy was difficult recovery-wise. I hope the MTX will prevent the need for surgery and your levels will start coming down soon. I feel for you - the first week after the injection is the hardest, there is so much stress over whether or not it’s working. I remember feeling like I was going to lose my mind from the uncertainty of it all. But know that I’ve read a lot of positive success stories with MTX - more positive than not - and I hope yours will be one of them xx

Hi heartlick. Yes the first week is hell, currently day 5 and I too feel like I’m about to lose my mind. I am so scared of it not working out.

I saw my baby for the first time today… :cry: :cry: :cry: it measured 5w4d. No heartbeat, but the pregnancy appears to be developing. The moment I saw it, everything just stopped. I couldn’t even hear what the doctor was saying. I literally had to compose myself and ask him to repeat everything he said. They’ll have to keep a closer eye on me due to my levels going up by double of the expected amount. He gave me my options and possibility of surgery, told me to think about it and to come back again on Friday for a further scan and 7 day blood tests.

I don’t believe I fully acknowledged my pregnancy before. Seeing my baby for the first time today brought me so much sadness and pain. Hearing that there was no heartbeat, I feel like I contributed to that by having the injection… I know that’s unlikely the case but I can’t help but feel that… and that I could have somehow also saved my baby. So many uncomfortable thoughts and emotions to deal with :cry: :cry: :cry:

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Hi Kitty,

I’m sorry you had to see the ultrasound. I saw mine as well and I wondered why they showed it to me. At that time, I think my mind went into shock and I sort of blocked it out, it felt like being underwater. I did struggle to acknowledge the pregnancy too - I was so focused on my own health and worried about rupturing - and it hit me hard later. I still get so sad thinking about it working out if it was in a different place. At least there is this forum to talk in.

Fingers crossed for your 7 day blood tests. It’s good they’re offering you another scan, I wish I had gotten one on Day 7. It’s a hard wait but you’ll have more information to make the right choice for your safety, as tough as that is. I really hope everything goes well.

19

heartlick:
Hi Kitty,

I’m sorry you had to see the ultrasound. I saw mine as well and I wondered why they showed it to me. At that time, I think my mind went into shock and I sort of blocked it out, it felt like being underwater. I did struggle to acknowledge the pregnancy too - I was so focused on my own health and worried about rupturing - and it hit me hard later. I still get so sad thinking about it working out if it was in a different place. At least there is this forum to talk in.

Fingers crossed for your 7 day blood tests. It’s good they’re offering you another scan, I wish I had gotten one on Day 7. It’s a hard wait but you’ll have more information to make the right choice for your safety, as tough as that is. I really hope everything goes well.

Hi heartlick,

In my hospital bed while typing this. During my scan this morning I was told even though the foetus hasn’t grown in size since Day 5 of MTX , it’s now showing a heartbeat (cardiac activity) which wasn’t there before. They admitted me and are recommending surgery management. I asked what about my hCG 7 day results (which we’re still waiting for), they said unless it’s gone down by over a 1000 (which they don’t believe it will) my only option would be surgery as the Methotrexate obviously isn’t working and my levels are too high for medication management. They said as my pregnancy is developing, currently it’s a ticking time bomb.

I am so upset and scared. I really hoped it wouldn’t have come to this. I feel so helpless and devastated by the recent events.

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Hi Kitty,

I’m so sorry to hear you had to be readmitted. I can relate to the shock and anxiety of the treatment not working properly, and I so wish this wasn’t the case for you. Know you will get through this in the end. Even though it feels impossible to imagine right now, you will get there - you have to be so strong now, and it’s so hard, but you will. Also know that you have lots of support here for your recovery every step of the way. I know the feeling of helplessness can be just so overwhelming sometimes, and I believe the Trust even has a hotline that you can call if you want to speak with someone who can listen right away. Sending you lots of hugs.