How do I ask gp

[rach1081985]

How do I get Gp investigate further regarding my suspected sjorgens I came back negative rheumatoid factor blood test

[KellyInTexas Administrator]

Rach,

I’d like to back up a little bit.

I read here that you are in your mid to late 30’s now? Is that right?

You have had quite a rough time with APS with regards to DVT’s and PE’s.

You have two lovely daughter- Alice and J. ( the spelling I can’t quite remember. )

You are in the UK- New South Wales.

You are currently on what anticoagulation?

Let’s start there. Let’s make sure you are in range properly if you are on warfarin. Who is managing your anticoagulation?

If you are on a LMWH, how often do you inject? At what strength? 1 mg/kg every 12 hours, or is it every 1.5mg every 24? When was your last fXa checked? ( and how many hours after injection?)

Are you currently on hydroxychloroquine?

This is probably the most important medication for Sjögren’s- for the aches and pains.

There really is not a lot that can be done for Sjögren’s other than the things that I’ve mentioned to you already.

In many cases a patient can present with sero negative Sjögren’s I certainly have.

I was diagnosed as ,” meeting the diagnostic criteria as to classification criteria “ for Sjögren’s syndrome. My Rheumatoligist did the Schirmers test on my eyes- bone dry. ( paper strips timed for 5 Min to see how much moisture.) i also had a dry mouth. I don’t have any idea what the other diagnostic criteria are. I didn’t ask.

You need a eye drops. I recommend Over the counter “ Systain “. ( check with your GP first to make sure there is not something else s/he would rather you have.)

Make sure to pay very good attention to oral hygiene if you yourself suspect you have Sjögren’s, and keep you routine cleanings every 6 months.

I’ve not been prescribed any additional medication. Just sip more hot tea, keep it by your bedside- no sugar! keep your mouth moist, and keep natural tear drops handy at all times. ( nothing with an antihistamine added. Just natural unless instructed other wise.)

Ask your Rheumatoligist to keep an eye out for progression, if you suspect this is what is happening. ( hydroxychloroquine has the advantage of halting its progress.)

I hope this has helped you?

[rach1081985 in reply to KellyInTexas]

Thank u very much yes im 34 next Thursday and had rough time clotting in past.... I currently take rivaroxaban warfrin didn't work 4 me.... I clotted whilst on heparin injections twice a day and aspirin... Major pes and dvt again and ivc filter fitted and emergency c section at 33 weeks.... I don't have a rheumatologist just a haematologist.... I'm also diabetic.... Never had any trouble till last few months after my clotting in early 20s....i don't take that tab u mentioned... I keep water by my bedside but no help... Thank u for ur reply

[KellyInTexas Administrator in reply to rach1081985]

It’s Hydroxychloroquine that is missing from your regimen.

Try that. ( must titration up very slowly. 25 to 50 mg at a time - in two week intervals until you reach about 200mg. )

Do you not have a Rheumatoligist?

[rach1081985 in reply to KellyInTexas]

OK im booking to c Gp again I'll ask bout that meds and no I don't Gp is referring me to a rheumatologist xx

[KellyInTexas Administrator in reply to rach1081985]

Perfect.

[rach1081985 in reply to KellyInTexas]

Thank u very much for ur help xxx ill keep updated xx

[KellyInTexas Administrator in reply to rach1081985]

Please do, Rach. Wishing you a very positive appointment!

[rach1081985 in reply to KellyInTexas]

Thank u very much xxx I will do... Good night best tryy get some sleep it 2.30am here in uk

[PepperT in reply to KellyInTexas]

Have i got this wrong or is rivaroxaban not currently recommended for aps patients?

[rach1081985 in reply to PepperT]

I've heard this too and worried so trying to get in touch my haematologist... Warfrin or injections don't work 4 me so I don't know

[PepperT in reply to rach1081985]

Maybe one of our knowledgable admins can help

[KellyInTexas Administrator in reply to PepperT]

It is not recommended, no. Rach- go back up and review our conversation from last night. I did ask you about the frequency of your LMWH injections.

I also clotted through LMWH, but I was incorrect dosed the first time. I did not do as well the second time as when on warfarin.

I was trialed in high dose Apixiban ( 10 mg am and 10 mg pm plus clopidogrel and still clotted. ( within a few days. Migraines within a few days- first indicator.) Also I was on a statin. 10 mg pravastatin.

I was switched immediately to LMWH again- this time properly- twice daily. But it was not as effective as warfarin for me.

It could be your INR was set too low. I just couldn’t tell you, as I certainly am not a doctor!

Warfarin tends to still hold up the best over the test of time for some severe APS patients. It covers more arms of the clotting cascade. It’s just such a difficult trick to keep that INR stable for most of us that it’s a shame when LMWH can’t work.

[rach1081985 in reply to KellyInTexas]

Thank u I will try get hold of my specialist thanks so much xx

[KellyInTexas Administrator in reply to PepperT]

No, not recommended. Please follow conversation with a Rach.

Not home at moment but will include trial links to TRAPS/ RAPS later.

[rach1081985 in reply to KellyInTexas]

Thanks hun

[MaryF Administrator in reply to rach1081985]

I would also add, to make sure your B12, D, Folate, Iron and Thyroid is regularly checked, and if unsure, order your own private panel, which actually is more detailed and accurate than what is on offer. I can't tolerate Plaquenil, due to my mix of disease, but it has made a huge difference to my daughter. I hope you get some more help. MaryF

[rach1081985 in reply to MaryF]

Thanks Mary xx

[rach1081985 in reply to rach1081985]

How you mean order private panel please

[MaryF Administrator in reply to rach1081985]

If you feel you need more detailed tests, they are listed over on the right hand side of the forum, under pinned posts, the last one I did on myself was the Medichecks Thyroid Check UltraVit Blood Test. MaryF

[MaryF Administrator in reply to rach1081985]

Also show them this paper: the-rheumatologist.org/arti... MaryF

[rach1081985 in reply to MaryF]

Thank u so much Mary xxx