Hi I Suffer From APS Hughes Syndrome, approximately last 1-2 years I’ve been having Awful Boils and Abscesses mainly on Buttocks and Back , All range from Big to little, Some are full of blood others are quite small in size and mimic ackee , Just wondered if other patients suffer these, just been to see dermatology department ref this problem, stuck me on Antibiotics doxycycline and erythromycin also gave me Dermol cream to use
Please do reply
Thanks Mark
Ilfracombe North Devon
Hi Mark from Ilfracombe, welcome, see you have just joined.
I'm local to you, just outside Honiton!! I'm up your way tomorrow, in Meddon working.
Are you being looked after by an APS specialist? This is very important to get the balance right for each individual between anticoagulants and our bloods?
I am B12 deficient but recently became low on iron too, this led to lots of boils/cysts - not sure if related? All I was told by doctors that I was run down, nobody took this discomfort serious.
So - worth getting your blood checks, B12, ferritin, thyroid too?
Hopefully antibiotics will clear up the problem.
Thank you so much for replying to me , 37 yrs old now , had my stroke at aged 21 caused by APS but before that suffered from a number of DVTS and PE in Lung but wasn’t found out I suffered from APS until I had my stroke, couldn’t talk or walk but thankfully all that came back but I was left with no use of my right hand which was obviously difficult finding work although started as a support worker for Devon County council Social services 9 years and various jobs after that in the support care work, now unemployed at present trying to find employment again but so hard finding right job that fits in with the use of one hand , I also volunteer with lifeboat as shore crew got my 20 years long service badge last May, I was also under professor hunt but now under North Devon District Hospital with a Heamotologist but often think should I get a referral up to St Thomas again to be reviewed because have had a lot of undying problems of late , I am also on folic accid due to my blood count reading of being boarder line anaemic , is there anyone closer to this area that you know that deals with APS, it would be great to meet up with other APS patient if you would feel comfortable I live with my parents who would always bring me over to meet Thanks best wish Mark
Hi, firstly get your GP to check your B12, ferritin etc. That maybe a good idea regarding bloods.
I'm still under Prof Hunt, only moved here 3 years ago, so not found any one local, but totally trust my care under her.
As I cover most of Devon, would be happy to meet up. My husband comes with me when working and we try and make a day of it (Only do 2 hr sessions of training) and very often in North Devon. Just pm me and we can arrange (hope you like dogs - they come too!).
Yes love dogs would love to meet up but when convenient to yourself here’s my Mobile number please telephone *removed by admin to protect ' thanks again Mark
Holly,
How possible do you think it would be to get Marks Hematologist in Devon up to speed on APS? Are there not continuing education units he/she would need to attend for the bar?
There is another woman recently you and I spoke with in here from your area...
No - give up here in Devon, i have only been here 3 years and still not given up to my conection to London.
Yeah, ok. Sad...
I would definitely get your B12 checked (the NHS test is quite basic), some of us add our own private tests in, which we order ourselves, sometimes folate Anaemia (B12 deficiency - Pernicious Anaemia), is not picked up. A B12 (active) test can be indicative of what is going on. Also the Thyroid gets missed for the same reason, only one test often done by the GP and hospital. If you need B12 injections, it is best to get your Folate to a reasonable level first. It is annoying to pay for your own tests, but a lot of us do. The main sort of tests I use myself include Folate, Ferritin, D, Active B12 and several Thyroid tests. MaryF
Thanks you for your advice
Hey Mark!
If you are on coumadin, be careful with antibiotics because they can really affect your INR. I know they usually put me on levaquin because it doesn’t affect INR.
Even antibiotic ointments can affect INR.
Nancy in West Virginia.
Thank you
Lol-not
Do you know if international doctors can get accreditation in their respective countries? ( how do I find out?)
That’s my assumption as well. My GP is thinking to do a fellowship in rheumatology. I think he would really enjoy having the opportunity to attend a seminar.
He may consider coming to Manchester in September.
Stop all dairy products and avoid foods that are refined carbohydrates like juices, breads pasta etc. Basically kept diet and your problems will disappear. Try it for 1 month and you will see results in less tax 10 days whereby you will not develop any new lesions
Thank you for the information
Hallelujah!! Somebody else suffers with them too!! For years I’ve suffered with boils/abscesses. A few months ago I had 9 at the same time and they are so painful. I have read that thyroid problems can produce boils. This week I had my first appointment with a rheumatologist and....... forgot to mention them aarrgghhhhh. I haven’t had any for a couple of months so out if sight out of mind (not that I can ever really see them).
Thank you for your reply
not getting any better
Going to see the Prof on Tuesday strangely nervous
Oh what a kettle of worms i have opened from the response.
Pain in legs and arms
