How long does the medication take to ... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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How long does the medication take to work?

Skatingonthinice
Skatingonthinice

Hi all.

I have finally got an agreement from the specialist to start treatment for Serro-negative APS. I hopefully get the prescription in the new year.

I am being put on Hydrocholoquinine and Clopidodgril. They ruled out anti coagulants due to my age and the risk of bleeding to death (lovely thought...)

How long did it take for people to find relief from taking medication?

I've been on Asprin since my stroke in June and after 3 months I found that it has made significant improvements in my muscle soreness, spasms, joint pain and menstrual pain.

I used to gym train and then have the worst muscle soreness imaginable for a week afterwards (not helpful being an athlete). my period pain was so bad I'd throw up blood and couldn't move for 36 hours. couldn't eat or even drink water and the pain went from my knees to shoulders.

After three months on the aspirin, my muscle soreness has gone back to that of a normal person. I still obviously get sore, but it is completely manageable now against before. my last two periods have been near pain free, something I haven't had in years. I was told by the consultant that this is because the aspirin is stopping my platelets from clumping together so providing some relief.

Is it going to take 3 months or so for the medication to take affect on my other symptoms?

Dizziness, blurred vision, memory issues, balance issues, 24hr chronic headache, cold hand etc.

My other question is does anyone else find their APS has effected their weight? since taking the aspirin, i've found my weight has started to drop despite me being less active than i've ever been. I am not eating any less and yet for the first time since I started having APS symptoms my weight is slowly decreasing. i've never been heavy, but as an athlete my weight has always been higher than it necessarily should have been for the amount of exercise I was doing. even if I ate nothing, my weight wouldn't change. the consultant said that it is possible the APS has caused my body to hold onto weight as a stress reaction due to the condition. Has anyone else found this?

Thanks in advance and Merry Christmas!

4 Replies
oldestnewest

I suggest you read "Sticky Blood Explained" by Kay Thackray which is a very good book about APS. Kay has got APS. Prof Hughes says it is the best written book about APS. I agree.

Also read as much about our syndrome as you can because knowledge is important. We know there are so many Doctors that know nothing about our illness worldwide and therefor we need to be "proffs".

A Merry Christmas from Stockholm in snow at the moment!

HollyHeski
HollyHeskiAdministrator

Hi, the clopidogrel works the same way as the aspirin and is more gentle on the tummy, so you shouldn't see any changes there.

The Hydrocholoquinine is now becoming a popular drug for us, it has a mild blood thinner in it as well, for me it took a few weeks to feel a difference. Some people start a low dose and increase it gradually.

Hopefully it will make a big difference.

Also look at the charity website as it lists all the medications and gives more info on seronegative APS. ghic/world

MaryF
MaryFAdministrator

Hi, so pleased to hear that your regime is working, one thing to add is a lot of us have a problem with our Thyroid, frequently missed due to the over reliance on the TSH test, the main one used by GP's and Consultants, it is wise to not only test your Thyroid with an adequate panel of tests, (we often order and pay for our own), this would also include a Thyroid antibody test. Many start with Hashimotos Disease, which can cause either a faster thyroid - Hyperthyroidism, or a slower one Hypothyroidism, Hashimotos can make it swing either way. Also very important to check your levels of B12, ferritin and folate, plus Vitamin D. Do have a look at our charity website which contains a wealth of information:

Prof Hughes himself often writes about the trio of disease which is Hughes Syndrome/APS, Sjogrens and a Thyroid problem.

ghic.world/

MaryF

I used to be little larger than I am but now I can't do as much my weight is less.think it due to muscles not being used. Are you still as active

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