Anyone else self medicating?

[RockPig]

Hi lovely ladies.

We’re about to go for our third FET, which will be our fourth and final transfer but my clinic won’t try anything new - the attitude is very much “oh well, bad luck, next patient” - so I’ve been doing research my self (as you do!) and have identified a few things I think could help.

I want to increase the dose of progynova from 8mg to 10mg (last cycle I was on 8mg and my lining only got to 7mm). Consultant insists 7mm is fine, but I know lots of clinics prefer 8mm or even higher so I’m not convinced.

I’m also keen to up the progesterone (I have short cycles and have always thought this may be part of the problem). Again, our consultant’s not keen so I’m planning to just add in another pessary next time my self.

I’m also thinking of getting a scratch and am interested in prednisolone but my clinic doesn’t offer either. I can get the scratch privately and it looks like you can buy prednisolone on line, so I’m wondering if I should just self medicate?

Has anyone else tried altering their protocol themselves with any success? I know the received wisdom is against this but I need to try something and my clinic just aren’t interested.

Sorry for the long post!

[Cinderella5]

Hey, Im sorry to hear that your clinic arent being more helpful! Must be so frustrating! I dont think its a great idea to up your meds by yourself but obviously its up to you. Will you have enough meds to do this? My lining is a bit of a pain and I really struggle to get over a certain level too....mine tends to be around 7.3mm on average before I start progesterone. My clinic like it around 9mm but I never get there even if my dose if increased (Ive taken as much as 16mg per day with no change) ....my body just seems to say no! Also too high estrogen levels is also not great. However the interesting thing is I have now been pregnant twice (albeit that it didnt last) so it can take implantation at that level. The progesterone level one, would your clinic agree to do a progesterone test on transfer day or could you have one and pay for it? This may back up your argument for more meds if they are indeed necessary? Im also aware that you cant get prednisolone in this country without a prescription....are you in the UK? Good luck with what you decide.xx

[RockPig in reply to Cinderella5]

Thanks Cinderella. I think you’re probably right. I didn’t realise too much estrogen could be a problem. Definitely going to ask for a progesterone test on transfer day. Hope your next one sticks.

[R4hulp]

I’m sorry to hear your doctors aren’t more understanding - But prednisolone is no joke. It’s a serious steroid - with serious side effects. I think lots of people self medicate with progesterone but let the medical professionals handle everything else. Maybe think about switching clinics/asking for someone else?

[RockPig in reply to R4hulp]

Thanks. Yes, I think you’re probably right. But good to know Others change their progesterone dose. The current cycle is NHS funded but I’m thinking of getting a second opinion from a private consultant as well. Sending you baby dust. X

[EmGLA]

Hello

It sounds like you are having a hard time just now. Please do not buy prescription medication on the internet. You have no guarantee it is what it claims to be, and can be really dangerous. Prednisolone is a steroid and can cause serious illness if not taken under the supervision of a health care professional.

best of luck with the transfer!

xx

[RockPig in reply to EmGLA]

Thanks, yes you’re probably right!

[Meditationconvert]

Hey I'm sorry to hear you're having a tough time with your clinic. Rather than self medicate I would try a different clinic if possible as they don't sound as though they are open to listening or discussion. Like the others I wouldn't self medicate as too dangerous and I'm on Prednisilone and it's tough with side effects. I can't wait to start weaning off it so you definitely want it prescribed as part of treatment rather than taking yourself. What I can tell you is that my clinic have changed med doses with each cycle of mine. This cycle I did have a lining issue so I'm on 16mg Progynova per day and 1600mg of Utrogestan (4 times a day!), much higher doses than previous cycles. I'm currently just under 9 weeks pregnant. Are the meds the thing that made the difference this time - that's the head f**k with the whole IVF journey because I'm not sure you ever know! For example my lining on day of transfer was only 6.7 and I was really upset after it thinking there is no way it will work and we got the BFP 10 days later. I guess what I'm saying is its hard because we try and do absolutely everything we can to cover all bases and I'm not sure if you can say success is due to one thing or another.

I really wish you all the very best with your journey and I hope you get some progress with your clinic and your treatment plan. X

[RockPig in reply to Meditationconvert]

Thanks Meditationconvert. Like the others I think you’re probably right. I’ve got an appointment with the consultant on Friday so I’ll push her to suggest something different for this cycle. Really pleased it worked for you this timeXX

[Solly-44]

Hi 👋

I feel your pain with not feeling your clinic is willing to try anything new. This board has really opened my eyes to the differences in the way different clinics treat people and I’m increasingly wishing mine was a bit more proactive too!

Having said that, I really wouldn’t buy prednisolone online. Any website selling it in the uk without a prescription won’t be a legit pharmacy however realistic it may look. I’m not being judgy, I speak from experience as someone who has bought prescription medication only meds online 🙈🙉🙊 and I can guarantee the items I got (whilst they looked the real deal) were not legit. You never know what you’re getting and it could be a fake with slightly different ingredients that interact with your other meds. The progynova and pessaries on the other hand, I’d be tempted to go with your gut! Good look lovely xx

[RockPig]

Thanks Solly44. That’s helpful. I think you’re right about the Prednisolone. Too risky. I’m going to ask for a progesterone test on transfer day and go from there. Hope things are going well on your journey.xx

[Mimo26]

Have you thought about paying to see another consultant who might be more open to other treatment options? They might do some tests and end up prescribing you the prednisolone? I paid to see a private consultant on top of my NHS one who prescribed me treatments I wasn’t being offered on the NHS to supplement my treatment. One of these treatments was prednisolone..

[RockPig in reply to Mimo26]

Hi Mimo26,

Thanks for your reply, that sounds like a good idea. Was the private consultant you saw willing to prescribe for a cycle they weren’t involved with then? and, (if you don’t mind me asking) how did you get on? I think I might try that.

[Mimo26 in reply to RockPig]

Yes, they were fully supportive and said they were more than happy to take a back seat and work in the background to support. Seemed to work, I’m currently 10+4 and nervously awaiting my 12 week scan! Feel free to PM me if you have any more questions as I’d be happy to help, and all the best!!

[RockPig in reply to Mimo26]

Thanks, that’s really helpful. I think I’ll try that. Glad to hear you’ve got your BFP, it’s great to hear positive results. I can understand why you would be anxious but you’re not far until your scan now so I’m sure it will provide you with the reassurance you want. All the best with the rest of your journey. XX

[Nodds]

I'd suggest approaching/ researching other clinics if you're not happy. I was in a similar situation with my NHS clinic. I was fortunate to have funded x3 IUI and x1 Fresh IVF and x1 FET. With just the FET left to go, I felt very strongly that my immune system was sabotaging each attempt (I have other AI issues). I knew that Prednisolone was a potential solution, but the clinic refused to even consider it - just doing the same protocol. I read books, researched online and spoke to my holistic practitioners and they all pointed me towards a clinic which tests for NKCs. To cut a long story short, I have v.active NKCs and I'm now on a protocol with prednisolone (amongst other things) and we're trying naturally. We've been given options and choices for the first time ever. And the clinic agreed to work alongside the NHS if we decided to do the FET.

Prednisolone isn't a drug to mess about with, so try to find a clinic which suits you.

Good luck! xx

[RockPig]

Hi Nodds. It does seem to be a bit of a theme with NHS clinics. It’s so frustrating when you know there are other things that could be tried and they just won’t listen. I’m speaking to the consultant tomorrow and if I don’t get anywhere I’m going to make an appointment with a private clinic. Glad you managed to get the support you were looking for in the end and hope it works out for you. XX

[Littleflower82]

Hi rockpig, I know most of the advice in there is not to self medicate but I did. I was fed up pushing my consultant for predisolone, I have an auto immune illness an I was 99% sure my immune system was attacking the embryos each transfer. I have had 3 fresh transfers 2 cp and 1 fail. This was my first frozen but I wasn't letting those wee frosties go with out a fight. My gp prescribed me 10mg predisolone I took for 2week wait and a day before transfer. I am currently 21+5 weeks pregnant with twins!!! I continued the steroid for 3 wks after its but weening off them. I have no regrets but I would b wary of buying online. Hope u get more answers with ur consultant today, good luck xx

[RockPig in reply to Littleflower82]

Hi Littleflower82. Congratulations on your BFP! As far as I know I don’t have an AI so I don’t think my GP would be willing to prescribe but I am going to look into NK testing and see if I can get a private prescription. I think you’re right about buying on line, just feeling a bit desperate! Glad to hear things have worked out for you though. Good luck in the rest of your journey. XX

[Fareena1904]

Hi Rockpig, sorry to hear about your tough time & completely understand the frustration. My advice would be definitely change your clinic next cycle.

Don’t ever buy anything from online as previously suggested below they may appear same but could have a detrimental affect on your body & long term damage could exist after taking them.

Do you clinic do regular blood tests throughout whilst you are taking meds before transfer? X

[RockPig in reply to Fareena1904]

Hi Fareena1904. Yes, you’re right, I think buying on line would be a bad idea. My clinic don’t do any blood tests during cycles. I asked yesterday if they would test my progesterone level on transfer day and they point blank refused. They say 400mg x 2 daily is the standard dose “at every clinic world wide” and that it’s not possible for progesterone levels to be low at this dose. I know from what other ladies on here have said that that’s a load of rubbish so I’m going to buy a test online and up the dose my self if needed. It’s so frustrating!

[Fareena1904 in reply to RockPig]

Is yours Nhs funded you are doing , u think because of that don’t bother with blood tests. I had needle phobia up until Ivf & still cringe at when they mention blood test blood test. There’s me complaining at tests & yours they don’t do enough. Mine is private so don’t know if Cos that do blood tests regular .

Hope all goes well! My friend was in a similar situation as you failed ivf, eventually had donor eggs n she has 3 kids now one is 1yr old & 2 babies twins just born. So you could always look into egg donors x

[RockPig in reply to Fareena1904]

Yes, this cycle is NHS funded and it does just seem to be a very one sized fits all approach. We’ve got one frostie left and after that I think we’ll probably go abroad. I’ve got DOR so we’ve already gone down the donor egg route, which makes it all the more frustrating when it doesn’t work. Still, got to hear it worked for your friend, I’d be happy with one, three is a real blessing!