More information. More confusion.

[RubyAndBlue]

Hello everyone,

I saw a rhuematologist (in South Africa) towards the end of February. I went because I was feeling bad since the beginning of February.

His opinion was that I have APS probably secondary to Lupus(this I knew before I went to see him) and Fibromyalgia. His advice was to keep going with the daily baby aspirin and stop the plasmoquin(antimalarial). He said there is no scientific evidence that it helps for APS. He also said that since I want to get pregnant I should only take paracetamol for pain when I need it and exercise to relieve the fibromyalgia symptoms.

This dr is the head of rheumatology at a top university in Cape Town. He seems to know dr Hughes, they worked together at some point in England. So I trust that he knows what he is talking about. I also found his explanation of the different categories APS very satisfying.

I must admit that I am still worried. Still very confused about the complexity of it all. Every time I experience a different symptom or sensation, my mind goes crazy. Right now I seem to be in a phase of palpitations and random pain everywhere and sleepiness. So while I am very grateful for the information he gave me and the information I get from this site, I cannot say that my mind is at ease.

[lupus-support1 Administrator]

I am not a medical doctor!

I have SLE with APS secondary to Lupus.

Plaquenil, has a mild thinning effect as a contraindication! Plaquenil is a central drug used to treat SLE.

Why has your rheumatologist stopped Plaquenil?

Plaquenil is also helpful for fatique.

Are you taking any other medication for SLE?

With good wishes,

Ros

[RubyAndBlue in reply to lupus-support1]

Hi Ros,

This dr said that while my test results are suggestive of Lupus( weak- mild positive ANA test), he was positive that my symptoms was caused by Fibromyalgia. He said since I have never had DVT and because my platelet count is good, I'm likely to only have problems with APS when I am pregnant. I had a miscarriage before. He said that I shouldnt take meds for Lupus yet, but he almost promised me that I will have to in the future(when i eventually show symptoms). This is the second rheumatologist I consulted, they both said the same thing about the Lupus, but the first one prescribed the plasmoquin. I remember him saying that it will help with the tiredness.

I had some funny symptoms when i started to take the plasmoquine(i wrote about it in the first post). So the dr who prescribed it told me to stop taking it. 2 Months down the line I saw a dr in Angola who said I must take the plasmoquin again to alleviate the symptoms I had(shortness of breath, stiffness and pain in legs, confusion, tiredness etc). So i took it again. I didnt really feel better. Which is why I went to see the dr in Cape Town.

[lupus-support1 Administrator in reply to RubyAndBlue]

I am wondering whether there is a confusion about Lupus. The Lupus Anticoagulation test isn't a test for SLE (systemic lupus erythmatosus) but a complicated clotting test.

The doctor doesn't think you need aspirin and plaquenil, the latter is used in SLE.

With good wishes,

Ros

[RubyAndBlue in reply to lupus-support1]

The test indicating lupus(ANA test) has been positive since 2012(when I was tested the first time). I was tested for antiphospholipid antibodies last year.

[lupus-support1 Administrator in reply to RubyAndBlue]

In other words, you don't have lupus ie SLE. The Lupus Anticoagulation test confuses patients and doctors because it's NOT a test for lupus ie SLE but a complicated clotting test used to diagnose APS/Hughes Syndrome.

With good wishes,

Ros

[HollyHeski Administrator]

Hi, I reread your 1st post - is this doctor taking you off this drug because you had symptoms that was worrying you?

Did you manage to get the blood tests done for ferritin, iron, B12 and thyroid that Mary suggested? If so, were the results ok?

Ros has answered re SLE - once you say what drugs you are on for SLE, then she will be able to answer you better than I.

Are you planning to go down the pregnancy route again, if so, now would be the time to get an APS specialist to help you through this?

[RubyAndBlue in reply to HollyHeski]

Hi HollyHeski,

Yes, I went to him with a long list of complaints. He said that the plasmoquin might have caused some of the symptoms, but he wasnt sure. He was sure that it didnt help for APS though.

I did those test, it showed that I was anaemic, so I took iron tablets for a few months. I plan to get it tested soon again.

I have not heard of a single APS specialists in South Africa :(. There definitely are'nt any in Angola. I was told that I would have the use clexane(heparin, I think) with the aspirin when I do get pregnant.

[HollyHeski Administrator in reply to RubyAndBlue]

It sounds like you have good advice for now - especially if you had bad side effects.

It would be worth continuing with the iron tablets.

I found this paper which gives you drug information.

hss.edu/conditions_top-ten-...

Clexane & aspirin is a good combination for pregnancy.

I really wish you well.

[RubyAndBlue in reply to HollyHeski]

Thank you, I will definitely read the paper

[MaryF Administrator]

Hi did you ever get around to ordering any tests like this: medichecks.com/thyroid-func...? As so often the only tests done for Thyroid are the TSH? Also your B12, D, Folate and Ferritin? My Thyroid problem was missed for years, I refused to settle for a 'Fibro' diagnosis, when I did test myself. I found on top of my Hughes Syndrome/APS and Lupus, plus other diseases that my B12 was a bit low, as were all the things mentioned above. I can't take Plaquenil, it made me very ill due to my particular mix of diseases, but my daughter is much better taking it, (Plaquenil), she also has Hughes Syndrome/APS and Lupus.

I hope you get some answers. MaryF

[RubyAndBlue]

Hi MaryF,

Yes, I did those tests. Everything was fine except my iron. I will re test again soon. I must admit, I'm really reluctant to take a lot of meds. I mean, I will if I have to, but if can do without it, I will rather do without it.

Thank you so much for the information.

[MaryF Administrator in reply to RubyAndBlue]

At least you did them all, I hope you get the right answers really soon. MaryF