Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

10,363 members • 10,557 posts

All posts for March 2016

Who gets monitored by a blood test every 6-8 weeks when they are on hydrochloquine..?.

My Gp just said I should of been monitored by blood tests every 6-8 week's since o stared on hydrochloquine needless to say that's not been happening...... My...

My Gp just said I should of been monitored by blood tests every 6-8 week's since...

loppylou68

•8 years ago

12 Replies

Doctors receptionists

Thank all of you for answering me the other day with regard to doc receptionists. Got my inr results 4.9. Think I'll go down to surgery n raise a few......

Thank all of you for answering me the other day with regard to doc receptionists...

diane1428

•8 years ago

3 Replies

Double blind study for people with low hb....if your having abdominal surgery....?! Anyone?!

I have just been called regarding taking part in a double blind study for people with low hb...who are having abdominal surgery.... Apparently me having an...

I have just been called regarding taking part in a double blind study for people...

loppylou68

•8 years ago

6 Replies

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Has anyone ever experienced vertigo???

Tonight I went to the kitchen to get a drink and I was flipping all over the place! The room was spinning , not me! But had no sense of balance whatsoever! I...

Tonight I went to the kitchen to get a drink and I was flipping all over the pla...

Debbweb01

•8 years ago

13 Replies

My New Hematologist's update for me.

I saw my new DR at the Yale NewHaven clinic in CT last week. She ran all the tests to confirm all my dx's. She ran some other tests also. I just received a...

I saw my new DR at the Yale NewHaven clinic in CT last week. She ran all the tes...

dar58

•8 years ago

6 Replies

Disability

Hello all. Finally, some relieving news today. My work insurance will pay permanently until age of retirement. I'm 48 and age of retitirement is 65 here in...

Hello all. Finally, some relieving news today. My work insurance will pay per...

danluc

•8 years ago

6 Replies

Possible Gall stone / Gall bladder

Hi all I have had number of pains last week coming from upper stomach area around to right hand side and around in to my back , A&E dr told me it was possible...

Hi all I have had number of pains last week coming from upper stomach area aroun...

Hidden

•8 years ago

2 Replies

Retinal hemorrhages

Does anyone have experience of Retinal hemorrhages ? I was diagnosed today by optician and referred urgently to hospital.

Does anyone have experience of Retinal hemorrhages ? I was diagnosed today by o...

purple

•8 years ago

16 Replies

Doctors receptionists

Just a short query(hopefully As I write). Have any of you had a problem with doctors receptionists. I go and have a blood test every week/fortnight depending...

Just a short query(hopefully As I write). Have any of you had a problem with doc...

diane1428

•8 years ago

19 Replies

Really confused now.

I did what the Neurologist suggested,out of curiosity ( and stupidity ) I came off the Warfarin. I now can't get my eyes to work together properly. So I can't...

I did what the Neurologist suggested,out of curiosity ( and stupidity ) I came o...

Totallysick

•8 years ago

10 Replies

Miscarriage clinic

Hi I've been back to the miscarriage clinic... My sticky blood level was at 13... Previously it was 15... Still no further on apart for having another...

Hi I've been back to the miscarriage clinic... My sticky blood level was at 13.....

Smithkin

•8 years ago

13 Replies

Changing anticoagulant

We are due to go and discuss my husbands anticoagulant. The rheumatologist has suggested changing from warfarin due to constant irregularities in INR. I do not...

We are due to go and discuss my husbands anticoagulant. The rheumatologist has s...

Vespa1

•8 years ago

8 Replies

Been on Gluten Free diet!

I just want to say thank you to all of you with the wonderful info on being Gluten Free!!! I've been doing the GF DIET for a couple of weeks now and find a big...

I just want to say thank you to all of you with the wonderful info on being Glut...

Debbweb01

•8 years ago

2 Replies

Update: just done now with all of this, too much overwhelming info!!!

Hi Maru, Kirstin, Not so fab and all my friends in this forum! I just wanted to update you all and say hi how are you? I've gone to enuf docs to last a...

Hi Maru, Kirstin, Not so fab and all my friends in this forum! I just wanted to ...

Debbweb01

•8 years ago

7 Replies

What does the Lupus Nurse do at guys and St Thomas ..? I have been given appointment with her instead of specialist..? I don't have Lupus?!

I requested an earlier than June follow up appointment with my specialist to be given an appointment with the Lupus Nurse....I don't have Lupus...i am primary...

I requested an earlier than June follow up appointment with my specialist to be ...

loppylou68

•8 years ago

2 Replies

Advice on Compression Socks?

Hi Everyone, I apologize as I'm sure this topic has been discussed at length. In about 3 weeks I'm traveling from California to Ireland. I fly from LA to...

Hi Everyone, I apologize as I'm sure this topic has been discussed at length. ...

bassetpup

•8 years ago

12 Replies

Dental treatment

Hi has amy one had dental extraction whilst on rivaloxaban ?? . Hot to have a tooth out and font know how to bridge on this medication

Hi has amy one had dental extraction whilst on rivaloxaban ?? . Hot to have a ...

stargazer5761

•8 years ago

3 Replies

Question

Have any of our group heard or had any experience wit B-Cell Inhibition. I thought that had more to do with Lupus or secondary APS people ??...

Have any of our group heard or had any experience wit B-Cell Inhibition. ...

jetjetjet

•8 years ago

1 Reply

Ablation didn't solve problem so I've been told I am to have full hysterectomy..... :(

Unfortunately the ablation has not had the desired affect so at my last visit with the gyne / surgeon he has said I will be having a full hysterectomy...

Unfortunately the ablation has not had the desired affect so at my last visit wi...

loppylou68

•8 years ago

7 Replies

No iron (ferritin) left in body....is this because of new Warfarin diet....?!

Visited Nephrologist yesterday who has offered me an iron infusion due to ferritin level of 4......anemia !? Is this because I have changed my diet because of...

Visited Nephrologist yesterday who has offered me an iron infusion due to ferrit...

loppylou68

•8 years ago

8 Replies

Great holiday but now so cold

Just had 2 weeks in Madeira and was super.Was afraid to fly with being on warfarin but was. OK.no APS problems and my RA+Fibromyalgia was mild.managed to do...

Just had 2 weeks in Madeira and was super.Was afraid to fly with being on warfar...

Fra22-57

•8 years ago

2 Replies

UPDATE: Finally, maybe things will come together

I've been staying away, been too depressed with so much medically going on all the time. Today, I left my home at 8 am, I had two Drs. appts and didn't get...

I've been staying away, been too depressed with so much medically going on all t...

dar58

•8 years ago

5 Replies

Tired and joint pain

How long before you start to feel the benefit of hydroxy chloroquine. I've been on 200 for about 8 weeks and don't feel any better at all. I'm also taking...

How long before you start to feel the benefit of hydroxy chloroquine. I've been...

stargazer5761

•8 years ago

6 Replies

Sore joints update

Hi everyone a big thank you for all your great help. I have started doing light exercise and it has helped my sore joints so much that I am no longer in any...

Hi everyone a big thank you for all your great help. I have started doing light ...

johnlane

•8 years ago

2 Replies

Need Advice ASAP

I wrote here a while ago about having lupus anticoagulant come back positive on some labs. It's been like 2 months and tomorrow I FINALLY am seeing a...

I wrote here a while ago about having lupus anticoagulant come back positive on ...

hrprsmom

•8 years ago

15 Replies

Well, we are now well over 5,000 members on here

Thank you for all the great feedback you send us Administrators, both out here and by private message. We are growing very fast as a community now. MaryF

Thank you for all the great feedback you send us Administrators, both out here a...

MaryF

Administrator•8 years ago

19 Replies

Deep breath......

Little update just incase anyone was remotely interested.. As part of the treatment for type and as there are signs it travelled a little as it can albeit too...

Little update just incase anyone was remotely interested.. As part of the treatm...

CheddarAddict

•8 years ago

9 Replies

Herts or Essex Rheumy?

Hi all, just wondering if anyone could recommend a good rheumatologist in the Hertfordshire, Essex or North London areas? I have connective tissue disease and...

Hi all, just wondering if anyone could recommend a good rheumatologist in the He...

mochamum

•8 years ago

3 Replies

Leukemia +

Does anyone have this illness as well as Hughes? If so does it affect your INR? and which came first? TIA

Does anyone have this illness as well as Hughes? If so does it affect your INR? ...

LesJames

•8 years ago

7 Replies

Baby Hector Elias has arrived!

He was born on the 4th at 4am by c section in St Thomas' and we are both doing well. More info to come, I'm very tired & in a bit too much pain and wonderment...

He was born on the 4th at 4am by c section in St Thomas' and we are both doing w...

Herbs77

•8 years ago

17 Replies

Posts - Hughes Syndrome APS Forum | HealthUnlocked

Hughes Syndrome APS Forum

All posts for March 2016

Who gets monitored by a blood test every 6-8 weeks when they are on hydrochloquine..?.

Doctors receptionists

Double blind study for people with low hb....if your having abdominal surgery....?! Anyone?!

Has anyone ever experienced vertigo???

My New Hematologist's update for me.

Disability

Possible Gall stone / Gall bladder

Retinal hemorrhages

Doctors receptionists

Really confused now.

Miscarriage clinic

Changing anticoagulant

Been on Gluten Free diet!

Update: just done now with all of this, too much overwhelming info!!!

What does the Lupus Nurse do at guys and St Thomas ..? I have been given appointment with her instead of specialist..? I don't have Lupus?!

Advice on Compression Socks?

Dental treatment

Question

Ablation didn't solve problem so I've been told I am to have full hysterectomy..... :(

No iron (ferritin) left in body....is this because of new Warfarin diet....?!

Great holiday but now so cold

UPDATE: Finally, maybe things will come together

Tired and joint pain

Sore joints update

Need Advice ASAP

Well, we are now well over 5,000 members on here

Deep breath......

Herts or Essex Rheumy?

Leukemia +

Baby Hector Elias has arrived!

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