Dr Bickerstaff -London lupus centre

[Waldo18]

Hi there,

I just want to put out there first that I’ve only recently discovered this resource and it has become a lifesaver-everyone is so helpful and supportive so thank you all!

I was wondering if anyone has attended Dr Maria Bickerstaff ? I’m looking at booking an appointment with either her or Dr Patrick Gordon in london Lupus centre. The centre admin have told me she is focussed on ivf/fertility issues in lupus/rheum conditions-and my issues are that my lupus seems to be attacking sources of oestrogen in my body (ovaries become inflamed each month when oestrogen is high v distressing as I’m 32 and wanted kids). I was going to request to see Dr p gordon as he seems v good in terms of listening and patient care (this has been a major issue with all the rheums I’ve seen in Ireland so far unfortunately), and has great reviews.

But perhaps I would be better with a rheum such as dr Bickerstaff if she specialises in the issues I’m affected by.

I’m going private as I’m based in Ireland where unfortunately there is no lupus centre of excellence.

If anyone has any experience of either of these docs I’d love to hear. All info v gratefully received

Thanks

D x

[Salzer]

Hi D. Sorry I don't know anything about either doctor unfortunately. I'm heading over to the London lupus centre from Ireland myself soon in the hope that I can get somewhere there. My experience with the rheumatologists here has been useless too. They really do not listen and seem make their decisions before you even open your mouth to try to explain what's going on. I have struggled to get any answers - just a shrug of the shoulders and 'go get on with your life'. I really hope that the experience in London will be better for both of us! And hopefully someone more knowledgeable than me will post soon with information on Dr Bickerstaff. Keep well & best of luck, S

[Waldo18 in reply to Salzer]

Hi Salzer,

Thanks so much for your response-and kindness, it’s good to know I’m not the only one here! But I’m so sorry to hear you’ve had a similar disheartening experiences of rheums here-it’s hard enough dealing with autoimmune issues without feeling like repeatedly hitting a brick wall here. I’ve come to the conclusion the expertise or interest in developing it simply does not exist here. At least london is relatively near I suppose!

I’m no longer expecting a clear cut answer in terms of diagnosis-I understand that may not be possible -but I’m not getting the care I need here in terms of managing what has become monthly flare ups of symptoms.

I’m also a bit unfortunate in that my symptoms are focussed in my pelvic / lady region (apologies if that’s tmi!)-burning pain on both sides of my pelvis that is getting worse with each cycle. I’ve been to gynae who has said there is nothing structurally wrong-although I’ve gone from fine to polycystic-which I think may be due to inflammation rather than normal PCOS-the pain is v distinctive and cycles. So the gynae has said don’t worry about that cos it’s only slight -but worsening each month as I pointed out! And has told me she can do no more for me and it might be an autoimmune issue directly affecting reproductive area/organs. Back to 2 diff rheums both of whom say-sorry, not my area. So I’m literally falling between specialities and v concerned about permanent damage being done in the meantime (I’m 32 yo female-yay!).

I asked rheum for something to manage the monthly flares today and he suggested an antihistamine!! These flares make me bed-bound and very ill-with visible swelling, redness of joints and purple patches forming all over body! Like I’m not sure an antihistamine is going to cut it!!

Thankfully I think I will have my appointment in London before my next flare is due to happen-I can predict it it’s tracking cycle so much! And they might be able to give me something to manage it better-the plaquenil alone isn’t cutting it.

If you’re interested I’m v happy to private message you with how I get on in London-and any tips/pitfalls I might be able to garner? Ironically I lived and worked in a London for 6 years and had private healthcare through my job which would have covered all of this-but alas no more since back to Ireland-cest la vie!

Hopefully London will be a more positive experience for both of us! And I hope you’re keeping as well as you can-we are not alone!

Debbie

[Salzer in reply to Waldo18]

Hi D. It beggars belief sometimes what these guys say. Antihistamines!! You must be so fed up as your flares are relentless when they are so tied to your cycle.

When I started out on the road to finding some answers to what is going on with me, I think I had a really naive idea of consultants. I think it must have been based on all those TV series of amazing doctors who fully investigate and collaborate with each other to help the patient! But in reality, they have their own rather narrow experience to call on and if you fall outside of that and they've decided you're not at death's door, they either pass you on to the next guy (but don't really work with them) or try to fob you off with antihistamines (or sleeping tablets in my case).

You would have hoped that your rheumatologist would work with the gynecologist and maybe even an endocrinologist to find a way forward for you. But they seem to be stuck in their silos, which really confuses me as surely AI conditions don't follow a standard course. But saying all that, I do believe that there is someone out there that can help, you just need to find them and you will. It's just so stressful/tedious/expensive to get there.

I really hope for you that your appointment in London is different and that you'll get some creative thinking. I also worked in London for years with private healthcare, but of course never needed it then. But I've decided that spending money on getting my health and life back is more important than anything now.

Please do let me know how you get on. I'll keep everything crossed for you.

S

[KayHimm]

With a symptom that involved the gynecologic system, I think you would be better off seeing the person with the most knowledge in that area, particularly since you are traveling so far. The anti-histamine may not have been as crazy as it sounds for symptom relief. Looks like they are using it with a progesterone autoimmune condition too.

As others have said, the rheumatologist can consult with others - endocrinologists and gynecologists - to provide the best treatment. That is one of the advantages of a lupus center or a large academic center where they have a large rheumatology department.

Good for you for seeking out specialized care. Your situation may not be common and it will be good to see an expert.

Best of luck.

K

[Waldo18 in reply to KayHimm]

Thanks for your reply KayHimm.

I’ve been taking the antihistamine but so far no change-in fact it’s been making my tendency for a dry nose worse and I also now get coughing fits.

I’m at the London Lupus centre next week so will be asking them for their advice on it-hopefully it will be a successful trip. Thanks for your well wishes - keep well!

Deb

[Bmwblack]

Hi , I have been under dr Bikerstaff for over 17 years, I have lupus and several other condition, when I got pregnant I was under her as well in a high risk pregnancy clinic, you won’t regret getting a appointment to see her , such a nice caring doctor who listen to you and takes your concerns seriously. Hope this helps

[Waldo18 in reply to Bmwblack]

Thanks so much for your reply Bmwblack- I appreciate you taking the time-it’s vv helpful.

That’s v reassuring to hear-I’m trying to get all my history and paperwork sorted for my appointment next week. Hopefully it will be successful. Keep well and best wishes!

Deb

[Laudessi]

Hi there! I know this was written a long time ago but I am in a similar situation. Which specialist did you you end up seeing and were you able to conceive ? Thank you x