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Second dose of Methotrexate successful??

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NParchie
Posts: 4
Joined: Wed Mar 03, 2021 7:50 pm

Second dose of Methotrexate successful??

Post by NParchie »

Hi all,

Thanks for sharing your stories it’s been really helpful & comforting to read them and I’m so sorry that all of us have had to go through this.
I wanted to share my story and would really welcome your experiences.

A few weeks ago I had a positive pregnancy test but within 2 days I started to get light bleeding that was quite dark in colour. I assumed it was a miscarriage but never having had one before, I went to the doctor to check it out. The doctor in turn referred me to the Early Pregnancy unit for testing.

My first HCG blood tests were really low (around 300) and nothing was visible on the scan. I repeated bloods every 48 hours for the next 4 days and got 320 & 600.
When the levels reached 600 last Friday I had another scan where a 1cm mass was found in my left tube and my ectopic was confirmed. I was given methotrexate & I was told I’d likely be a successful candidate given how low my HCG levels were.

I got the first dose on Friday and by Sunday I started to get very different bleeding to what I’d initially experienced- it was bright red, more like a period & over the next few days I started to pass clots which I interpreted as a good sign that the drug was working.

I got my day 4 results on Monday which showed an increase from 600 to 1132. I was worried about this but was told an increase was normal.
I received my day 7 results today which were 1164.

I was absolutely devastated to learn the MTX hasn’t worked. But the consultant said I was still a promising candidate for a 2nd dose because my HCG levels essentially plateaued between days 4-7, and the scan today showed no change from last week in size of mass (it hasn’t grown!)

I just wanted to hear from anyone that’s experienced something similar and did the second dose of MTX work for you?

I’m absolutely heartbroken at the thought of needing surgery and losing a tube and what this might mean for chances of a natural pregnancy in future

Thanks 🙏

EPT Host 22
Posts: 462
Joined: Fri Nov 20, 2015 10:26 am

Re: Second dose of Methotrexate successful??

Post by EPT Host 22 »

Hi NParchie,

I am so sorry to hear you are suffering from this ectopic pregnancy and loss. You are not alone in your experience and feelings, and I'll do my best to provide some reassurance.

The process of MTX can take some time, and as each woman is different, there is, unfortunately, no set time frame. We encourage women to prioritize their rest and recovery during these weeks, which means no heavy lifting and possibly taking time off from work. It is very easy to say, but so much harder to do.

As you've already shared, the second shot of MTX is given if hCG levels do not fall as doctors would like. In general, the hCG level often rises 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. Your doctors are looking to see a drop in your hCG value of at least 15% between days four and seven. If there has not been a 15% drop, this is when the doctors will consider a second dose of Methotrexate or surgery.

Every 3-7 days, beta hCG levels will continue to be monitored to ensure that they are falling appropriately. Most women only need one injection but in up to a quarter of cases a further injection may be required if serum hCG levels are not decreasing.

You know your body the best, and while the hcg levels are decreasing, it's important to be mindful of your symptoms until you reach non-pregnant levels, under 5mIU/mL, as there is unfortunately still a chance of rupture. The symptoms of a deteriorating ectopic pregnancy, which include worsening or progressively increasing pain; vaginal bleeding; shortness of breath; feeling faint; and pain in the tip of the shoulder among others, may become noticeable. If you suffer any of these symptoms you will need to be reassessed. Your hospital would give you a number to contact for health advice if you feel that anything is changing, or you will have been told to report to the Accident and Emergency Department (A&E). If you have not been told what to do and need to speak to someone ring the hospital department which is treating you or the NHS 111 Service by dialing 111.

From the bottom of my heart, please be kind to yourself through your recovery. We are here for you whenever you need it.

With good wishes,


Michele

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards

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NParchie
Posts: 4
Joined: Wed Mar 03, 2021 7:50 pm

Re: Second dose of Methotrexate successful??

Post by NParchie »

Hi thanks so much for your reply 😊

I’m slightly concerned because for the 2nd dose, the EPU have advised their protocol is to only repeat bloods on day 7 (and not day 4). I even rang them today to double check and they assured me this was their policy.

Is this normal? It doesn’t make sense to me- especially if my HCG levels spike again by day 4, they might then drop by day 7 but still be higher than day 1 results. So without the day 4 results it would look like it isn’t working.
Or is it the case that when you need a second dose they want to see a 15% drop from the levels at the date of injection?

Very confused and feeling in despair that this 2nd dose won’t work 😏

Thanks

Krissymcg
Posts: 6
Joined: Mon Feb 08, 2021 3:27 pm

Re: Second dose of Methotrexate successful??

Post by Krissymcg »

I’m so sorry you’re going through this. I’m just a couple of weeks ahead and everything you’ve said sounds very similar to my experience. I was totally terrified the second dose wouldnt work especially after being told that it was unlikely I’d even need an injection in the first place as my levels were pretty low. On day 7 my levels had dropped but only by about 11 percent. I was beside myself but was told that this can happen and went back in three days later. This time they’d dropped by over 20 percent and four days after that another 35 percent. They’ve now annoyingly slowed down which is also frustrating and anxiety provoking. I just wanted to say I really understand the utter exhaustion, second guessing and constant worrying. I have my fingers and toes crossed for you.

NParchie
Posts: 4
Joined: Wed Mar 03, 2021 7:50 pm

Re: Second dose of Methotrexate successful??

Post by NParchie »

Hi thanks for your responses 😊

Over the past few weeks I’ve gained so much knowledge and comfort from reading other people’s experiences so I wanted to repay the favour and update on my situation incase it provides information or comfort to anyone else having a 2nd dose of MTX.

Last week when I found out the 1st dose hadn’t worked for me I was absolutely inconsolable and totally lacking in hope that the 2nd dose would make much difference. Given that an ectopic is rare in itself and that 1 dose of MTX is effective for c.80% of people that have it, when I got the news that I was in the unlucky 20% it hadn’t worked for I was bleakly feeling on the wrong side of the statistics.

After having the 2nd dose I’ve spent the past week anxiously counting down to my day 7 blood test, whilst also feeling pessimistic and slowly trying to get my head around the possibility that surgery might be my only option & what that might mean for future fertility. Reading positive stories on this site have been hugely comforting and it’s wonderful to hear about so many pregnancies after ectopic/ surgery.

Today was my day 7 blood test and I’m astonished to find that it has worked for me- my levels dropped from 1164 to 468.
To say I’m delighted is an understatement and I pray that soon all this will be over and I can move on.

I wanted to share this for anyone that’s reading (and like I have been doing, desperately trying to research the odds for success) in order to give you hope in that awful limbo period of waiting. MTX doesn’t work for everyone so obviously there are no guarantees, but I just wanted to provide some reassurance that there is absolutely hope that the 2nd dose will work when the 1st dose hasn’t.

Possibly TMI, but interestingly I found I had bleeding (like a period, some clots) after the 1st dose which at the time I interpreted as a positive sign that it was working (which it didn’t). Whereas after the 2nd dose the opposite happened- bleeding significantly reduced & has been light ever since (which has been worrying me all week as I thought it meant the 2nd dose wasn’t working.) I guess it goes to show that there isn’t necessarily a correlation between bleeding & MTX treatment success. Everyone responds differently.

I will update on how my HCG levels reduce over the next few weeks incase it’s of interest

Wishing you all the best

Nat81
Posts: 14
Joined: Mon May 24, 2021 8:37 am

Re: Second dose of Methotrexate successful??

Post by Nat81 »

Hello everyone, I was interested to hear how things had progressed for everyone here after their 2nd dose of MTX. I’m sorry for everything you e all had to go through. I’m going through this myself now and it’s a really anxious time. I had my 2nd dose of MTX 2 weeks ago and levels finally started to drop. At the peak they were at 2300 and now 890. I’m still really scared I will rupture. I’ve had bloods weekly since the first week. I had an over night in hospital as I had a lot of intense pain on one side this week but it was ok. Thing maybe this is the MTX working? I wondered how long it took for people to see their hcgs back to a safe level so I can get an idea of when this ordeal might be over. Although I appreciate everyone’s different. My pregnancy has never been seen on any scans so far but I feel like it’s on the right tube after pain in this area since the 2nd dose of MTX. I hope everyone’s recovering well now and beginning to feel much better.

I’ve found after the 2nd dose of MTX I was quite unwell. It was really strong! I had headaches, exhaustion, light headedness and nauseous. Did anyone else have this and if so did it take long to feel better?

Much love ❤️

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