AIBU in expecting a nurse specialist to actually have specialist knowledge?

[vole3]

I was diagnosed with rheumatoid arthritis when ds was 7 weeks old in August 07 and started a first line drug that can be taken whilst bf. However, the disease isn't controlled as well as hoped, so they want me to start on another drug, hydroxychloroquine.

In the lovely leaflet the consultant gave me almost 2 months ago, it says that there is a rare side effect of retinal problems (permanent) and a theoretical similar problem for ds as it is passed into breastmilk. Also checking with my pharmacist friend it is listed as to be avoided when bf.

So, when I see the nurse today, as I have to prior to starting the drug, I ask exactly how rare is the chance of vision impairment, expecting a 1 in whatever as opposed to 'very'. Also, when querying about the safety of taking it whilst feeding I expected her to show me some research which shows it is safe or at least offer to put me in touch with someone else who has been in a similar position. I ask about other alternatives to this, stating that I want to carry on bf as long as possible, but all I get is that this is the least toxic option. Oh, and prior to starting it I need to make my own arrangements for an eye test which would have been a whole lot easier if they had told me 2 months ago when they first said they want me to start the drug and not 3 days before I go back to work full-time after maternity leave.

So, AIBU by expecting her to give me some answers, or say she will get back to me, rather than just reading a leaflet to me that I have read and found unhelpful myself?

I think you are being a bit unreasonable, actually. I have RhA, had it before during and after dd was born. I breastfed for two years. This was all 6-7 yrs ago, and I can't actually remember the timescales accurately, but am fairly certain that I discontinued my hydroxychloroquine when pregnant, but ahd a flare-up when dd was a few months old, so after discussion with my Consultant, I started it again.

Presumably this nurse specialist specialises in RhA, rather than RhA in breastfeeding mothers? RhA is commoner in older women than younger, and the number of breastfeeding mothers with RhA will be small, so I wouldn't expect the nurse to have immediate answers to your questions.

As for the retinal damage, I wasn't sent for screening at all whilst under the care of a Professor in Newcastle, but was when I moved to Scotland. The fact that it isn't universal leads me to suspect the risk is very small. I can't quote you figures, but the info must be out there, somewhere.

There is NO hard research about the risks of breastfeeding whilst on Hydroxychloroquine. It would be unethical to do such a study. All the information they have is measurements of the rtansmission of the drug into milk, and extrapolations with the known effects of hydroxychloroquine and similar drugs in babies. I was told by the Glasgow Professor that breastfeeding probably confers more benefits than hydroxychloroquine risks.

As for the nurse specialist herself....you just can't expect her to have the same level of knowledge as a rheumatologist. Most of these posts were created to take some of the workload off the doctors, in addition to the fact that nurses are much cheaper, and more likely to stay put than a junior doctor. Her role will be to deal with the more common problems, so that the Consultant can see the more complex cases.

i would ask to see the consultant, rather than slating the poor nurse who is doing her best.

I think you are being a bit unreasonable, actually. I have RhA, had it before during and after dd was born. I breastfed for two years. This was all 6-7 yrs ago, and I can't actually remember the timescales accurately, but am fairly certain that I discontinued my hydroxychloroquine when pregnant, but ahd a flare-up when dd was a few months old, so after discussion with my Consultant, I started it again.

Presumably this nurse specialist specialises in RhA, rather than RhA in breastfeeding mothers? RhA is commoner in older women than younger, and the number of breastfeeding mothers with RhA will be small, so I wouldn't expect the nurse to have immediate answers to your questions.

As for the retinal damage, I wasn't sent for screening at all whilst under the care of a Professor in Newcastle, but was when I moved to Scotland. The fact that it isn't universal leads me to suspect the risk is very small. I can't quote you figures, but the info must be out there, somewhere.

There is NO hard research about the risks of breastfeeding whilst on Hydroxychloroquine. It would be unethical to do such a study. All the information they have is measurements of the rtansmission of the drug into milk, and extrapolations with the known effects of hydroxychloroquine and similar drugs in babies. I was told by the Glasgow Professor that breastfeeding probably confers more benefits than hydroxychloroquine risks.

As for the nurse specialist herself....you just can't expect her to have the same level of knowledge as a rheumatologist. Most of these posts were created to take some of the workload off the doctors, in addition to the fact that nurses are much cheaper, and more likely to stay put than a junior doctor. Her role will be to deal with the more common problems, so that the Consultant can see the more complex cases.

i would ask to see the consultant, rather than slating the poor nurse who is doing her best.

sorry for double post. Don't know how that happened.

Ah, when I saw the consultant he gave me leaflets and said that the nurse specialist would answer all my questions.....

No, I wouldn't expect her to have the same knowledge as a consultant, but I would expect her to take steps to find reassuring evidence or to at least look in the BNF (pharmacy directory) to double check the information I had told her about it not being recommended.

Having given up pate, soft cheese, alcohol, banned dh to the shed for his smokes, gone back to my normal (silver threaded) hair colour because of potential risks during pregnancy, I don't want the guilt trip of taking something that I've found conflicting evidence about without having more information.

Vole3 I take this drug for Lupus.

I had to see a opthamologist at the hospital before they even prescribe it to me.

But I am in Dorset and Health care here in general seems to be very good.

Sorry far to old for BF so dont know about that.

But did want to say that the drug made a HUGE differnece to me.

Oh, Tissy bless you for saying that RA is more common in younger women. I am rapidly approaching 37, so I somehow think I fit into the elderly premip category!

However, as pregnancy is one of the known triggers for RA, I would hope they might put together a folder of information for mothers in my position.

I know it is unethical to test drugs on pregnant / lactating women so often the comment will be 'not recommended' or 'avoid' as it is not licensed for use in this category, in which case they could state 'not licensed' if there is no evidence of or only theoretical problems.

Shoshe - I'm originally from Bournemouth and one of my school / neighbourhood friends developed lupus when she was in her teens. She had a few problems at the beginning, but is controlled now AFAIK.

I suppose it boils down to
'if I take it and something happens it is my fault',
'if I take it and stop breastfeeding I am giving up something that benefits both of us'
and 'if I don't take it I am only harming myself and not him'.

Of course the best thing would be not to have RA and not to have to make the decision, but that's not possible.

kellymom, a very well-respected site for bf information, thinks hydroxycholorquine is OK here

Thanks for that.

blimey, is 37 old then? .

No, but compared to the average age in my postnatal group (24!!) I do feel it at times...