Pregnancy

[Jacbar]

Hi,

I’m hoping to get pregnant but everything is stacked against me.

On top of RLS I have endometriosis, no thyroid and I’m being treated for Behçet’s disease meaning I am on a lot of medications from thyroid replacement, pramipexole, shortec and immunosuppressants called Imuran.

My question is I take pramipexole and shortec for my rls. Are they safe to take during pregnancy? What about breast feeding?

How were peoples rls symptoms while pregnant?

I’m just looking at making some notes of questions to ask before I speak to my specialists. Just need to get my head round things really.

Thanks x

[LotteM]

Hi Jac, this is a really difficult question to answer for is, fellow sufferers and laymen. Your case is too complicated and too particular for any general answers, I would think. What I can advise you is to put this question to Dr. Marc Buchfuhrer. His website is rlshelp.org and you can email him at [e-mail]. Make sure you use full words and phrases. He usually answers within 1-2 days. He posts most questions and his answers on his website.

[Jacbar in reply to LotteM]

Thank you. I will email him.

[Lapsedrunner]

Surely you need to discuss your plans with the doctor who has prescribed your medications.

I wish you all the best

[Jacbar in reply to Lapsedrunner]

I fully plan to discuss with my consultants but was just looking for any pointers to bring up from anyone been through similar.

I see my rheumatologist end of April, gynae in May and sleep consultant June. They’re all in different hospitals so trying to get them to possible work together is going to be hard if not impossible so figured I’d gather as much info as I could in the meantime.

[Parminter]

Jacbar, I second Lotte - get hold of an expert - and there is no better than Doctor Buchfuhrer at rlshelp.org. He will have seen this often enough.

I think the advice will be to get your iron stores up as high as possible before you become pregnant. (This in itself may do a great deal to help, it may even heal).

Then, if they are absolutely essential, to keep drugs to a minimum during pregnancy, and only certain drugs. He will know which, or will know where to point you.

It would be best to sort out as much as is humanly possible before pregnancy - months before.

Have you had your ferritin levels tested? For many it is a game-changer. And if you have familial RLS/WED, then you have been unable to store brain iron for a long time, in fact forever - and you have been losing blood every month during menstruation.

And if brain-iron stores are not high before pregnancy, you may be sure the baby will take what is left - nature favours the baby.

This needs to be seen to months in advance, as iron stores, even per IV infusion, will take a long time to get to the part of the brain where you need it, as much as three to five months. (The bones and the spleen chomp it up first, the brain comes last.)

Costors are extremely wary of giving IV iron to pregnant women, but if you need it, and it is sorted well in advance, they will consider it.

Keep in mind that the sort of iron deficiency we have is NOT anaemia, so unless you have specifically taken a test for serum ferritin, which is the nearest we can get to knowing brain-iron stores, you will not know.

[Parminter]

rls.org/file/pregnancy-for-...

[Sara_2611]

apologies I really dont know maybe consult your GP

[elka68]

Hello Jacbar, I would reply in a way that will probably scandalize you and others, but

after reading what you are going through do you believe that you "are having prerequisites" to carry pregnancy? Think about your future child, but not your "wants".

Did you consider an adoption? or maybe even this is too far.....

Still wishing you the best, or better health ever.