[LadyLily]

I was very impressed with the consultant that I have just seen and I have made a bit of headway with finding out what might be wrong with me. It seems that I have definitely got antiphospholipid antibody syndrome and he thinks that there are many indicators which suggest that I do also have lupus although he cannot say that for sure at this stage. I have had more blood tests done this morning as for some reason the haematology dept failed to do all the tests asked for back in April (helpful!) and he is going to write to me directly with the results.

As I do not have any particular health problems at this moment, apart from anaemia, I'm not due to go back or have any meds prescribed at this juncture. He thinks the flare I had back in April was probably as a response to some infection. If this occurs again then I'm to get back in touch to see him again.

On a more depressing note, he thinks it's very unlikely that I'm going to be able to have another successful pregnancy factoring in the APS, the anti-Ro and my age and other fertility problems. If by some miracle I do manage to get pg again then it will have to be treated as a very high risk pregnancy from the outset. I am finding this hard to deal with at the moment as we had really wanted to have another child - we will have to learn to be content with our wonderful two and try to move on to the next phase of family life.:sad:

So, I still await a confirmed diagnosis of the lupus . . .

Lily

 

[Lily]

Hi Lily

I'm glad you thought the appt went well.

Are you still taking aspirin? That's something I would definitely continue on with in light of your history and the fact he thinks you have APS.

It's quite strange for a doctor familiar with Lupus to not prescribe something for the anemia, especially as it's a common problem in those with a chronic disease such as Lupus. It depends on what type of anemia it is though, if it's simple iron deficiency anemia then your GP can handle that, but if it's not then the consultant should be addressing it as it is a sign of disease activity.

Maybe he wants to get the test results back first before deciding on further action, but it's not really encouraging that he is not following you up with all this apart from a letter. I don't know.............. that's just my 2 cents worth and maybe I am misunderstanding. On the other hand if you are very well right now and blood tests are ok, then the option to see him again should you have any further problems seems like a good one. It will be helpful for you to actually see the test results he has done, not just get a letter saying everything is ok. That's what I would want, at least then you know that he is handling this in the correct manner. Not all Rheumatologists are Lupus specialists.

You may want to get another opinion on your choice to have another child too. It does sound like you have several important risk factors and I don't know what your fertility problems are. I do know that depending on your age that some women without any particular health problems are classed as higher risk, so factoring in everything else then maybe he was justified in making these comments. In a youngish woman with APS many of them have successful pregnancies as long as they are treated and followed carefully by a high risk Obgyn in conjunction with their Rheumy.

love
Lily

 

[LolaLola]

Hello Lady Lily,

I would have liked more children too but after a number of miscarriages and 2 prem. babies I stopped trying when I was just past 40. It was a hard decision, but now 10 years later I know I could never have coped, as I have become worse.
This does not mean it would be that way for you, but just wanted you to know that the awful feelings about this do subside.
x lola

 

[LadyLily]

Many thanks Lily and Lola for your replies. I hope you don't mind if I ask a couple of questions? The consultant didn't say to make any particular changes to lifestyle or to take any meds or supplements of any kind. I was wondering whether it would be sensible to self-medicate with a daily 75mg aspirin in light of the APS diagnosis or should I just leave this kind of thing to the professionals? (When pregnant with dd I did take two of these low dose aspirin per day with no noticeable side effects). I have no idea what kind of anaemia I have got but I do know that when I had my last blood tests done I was actually on iron tablets from the GP and still had anaemia (when I was in my late teens I did have to have several blood transfusions because of chronic anaemia so this has always seemed to be one of my problems).

Lola - I was really heartened to read your words about having to come to terms with not having more children. I too had two miscarriages followed by problems even just getting pregnant (some probs with me although unclear for sure what - but also on dh's side). I also had pre-eclampsia both times, worse the second time around in that my BP climbed dangerously after birth and once I was at home - luckily neither bub was premature.

I think at this juncture that I probably don't need to try and see any other doctor unless I get any more symptoms. The flare in April with multiple joint pain/swelling and rash may just have been a 'flash in the pan' - if it occurs again, then I think I would ask to be referred to St Thomas' in London - I've already mentioned this eventuality to my GP and they are quite happy with this.

Now I'm just quite intrigued to see what my blood results bring forth. What I know to date is as follows:
ANA positive >640 homogenous
Anti-Ro positive
Anti-cardiolipin and lupus anti-coagulant - both positive
Anti-DNA positive (I no longer have the exact result on this one as I gave my copy to a doctor!)

As I said, it seems that the disease was at its most active in my late teens when I had swollen painful joints with a red pinprick rash (but not on the face), chronic fatigue, fever, chronic anaemia, liver and kidney failure. Could this active phase have burned out to leave me in remission and just with the antibody problems and perhaps occasional flare-ups?

Perhaps because I am lucky and not in pain as such, I find all this absolutely facinating!

Lily x

 

[Lily]

Hi Lily

ANA positive >640 homogenous
Anti-Ro positive
Anti-cardiolipin and lupus anti-coagulant - both positive
Anti-DNA positive (I no longer have the exact result on this one as I gave my copy to a doctor!)

Were these recent tests you had done?

As far as the aspirin goes did the Rheumy know you had taken it in the past and are not taking it now? It's a good question to ask of the doctor whether you should still be on it given your diagnosis. Do you suffer from migraines etc? or have you ever had any blood clotting problems?

I was wondering if a urinalysis was run as part of your workup?

All these are important factors in determining whether to medicate now and whether you have been given thorough assessment.

love
Lily

 

[LadyLily]

Hi Lily,

The results I quoted were a mixture of results from 2002 (when I had tests run following recurrent miscarriages) and April when they tested for the anticardiolipin and lupus anticoagulant. They were also supposed to have run the other tests for lupus back in April too but this was missed for some reason and why the rheumatologist has ordered up another batch of bloodwork to be done now.

He asked what meds I was currently taking and so knew that I was not taking aspirin currently. He only suggested to start taking it immediately if I managed to get pregnant again. (To help prevent miscarriage rather than for any other blood clotting reason.)

I think that creatinine levels and GFR were absolutely fine in recent bloods so no urinalysis was requested - he did ask for the bloods to look for this again though specifically I suppose because of history of kidney failure.

I've never particularly suffered from migraine headaches although I've had more pre-menstrual headaches over the past couple of years (which tablets don't touch!) which I've just put down to being perimenopausal. I do also have high levels of oestrogen (oestradiol) which I would think can be a factor causing hormonal upset.

One thing which I did wonder if it could be lupus related is that I do get quite a lot of pain in my back starting between my shoulderblades and going up into my neck . . . I think it's called the cervical spine area. I have no idea what else could cause this and wondered if other people might get this too?

Lily x