Firstly to be clear I have not been diagnosed with antiphospholipid syndrome but during the course of investigations for my Inflammatory arthritis I tested positive twice for antiphospholipid antibodies.
I'm 50, periods are getting further apart and I've had what I think were some very brief hot flushes, literally seconds long, a few weeks ago. In other words I'm not suffering with anything menopausal. However, I am a long term migraine sufferer which have turned into cluster headaches in the past couple of years. So I was prescribed hrt by a specialist at the national migraine centre . I told her about the antibodies and she said it should have been followed up but she still prescribed estrogel and utregestan.
It hasn't ever been followed up but that's another story.
I've only taken the HRT for 5 days, suffered a hideous headache, spots, foul mood and a period so heavy I haven't been able to leave the house.
Has anyone here experience of hrt with antiphospholipid antibodies?
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Brychni
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Hi, welcome. Firstly you need a very important conversation with your GP regarding HRT and also perhaps the input of your nearest Hughes Syndrome/APS specialist, many of us have overlapping autoimmune conditions, Oestrogen based hormones are not recommended for patients with positive test results. Some consultants do prescribe HRT patches which are safer, but you still need a dedicated specialist to help you and your GP with this, HRT is only prescribe with extreme caution and the best medical knowledge.
You must take action asap and ring your GP, especially with your increasingly bad symptoms. Some neurologists and migraine specialists are still very in the dark about Hughes Syndrome/APS. Our charity does have a list of specialists, which will help you and your GP. ghicworld.org/ MaryF
Hi MaryF - thanks so much for your reply. I've got so much going on with health at the moment I could hardly be bothered with researching the antibodies thing (seem to be doing a lot of my own following up) but have taken your advice and just got off the phone with GP.ALthough the migraine consultant urged me to give the hrt a go for at least a month, I've decided to be on the safe side I should leave it until I know that it's safe.
Hopefully the next blood tests will be negative and then I can make a better, more informed decision.
Hi, great you've talked with your GP. Mary has given good advice and with headaches, cluster migraines etc also being a symptom of Hughes/APS, it would be really good for your GP to refer you to an APS specialist?
Be warned that many of us go in and out of negative/positive testing and if in a negative phase, does not mean the disease has gone away, you really need a Hughes Syndrome/APS specialist to advice both yourself and to guide your GP. MaryF
Hi Mary - yes I recently asked for my Inflammatory Arthritis diagnosis from rheumatology where it stated clearly that I had also tested postivie for beta glucan 2 (or something ) which I was told was for antiphospholipid antibodies. Then yesterday I had a call from the GP ( a different one) who said I hadn't - he obviously wasn't looking at the right piece of paper, the line was bad and I gave up. My next rheumatology consultant appointment is on 7th April and I will bring it up with her. I have in the meantime decided not to take the hrt because I just don't think I need it. My migraines are bad but ever changing and even the migraine consultant said they might disappear as I go through menopause, so I'm not sure why she prescribed it.
In my late 20s/early 30s I tried the combined pill a couple of times, mainly to treat acne but it caused constant headaches so I was taken off it. I did tell her this but she was of the opinion that just because I couldn't tolerate it then didn't mean it would be a problem now.
Hi Brychni,My migraines turned to Cluster headaches at age 26. They lasted about 4 months and in the middle of cycle I would have 5 a day lasting 2 hours with a steady migraine through the whole cycle. Drinking anything with alcohol would trigger a Cluster headache in 5 minutes with me, that fast. Write down when you get them what time of day, how long ect. Use a headache diet to help. You must see a neurologist and APS specialist for them to help you through this cycle. I stopped drinking alcohol totally in 2007, I haven't had any Cluster headaches so far. I have had a hysterectomy at age 49 too. When I got diagnosed with APS I got off of my bioidentical Hormones by my Rheumatologist. That said APS and all headaches go hand in hand because of sticky blood from APS. Please see a APS specialist and they can help with these horrible Cluster headaches. If I ever get them again I would literally RUN to a APS specialist, even in a different state or country as fast as I could! Hope this helps, Suzy
I have also tested positive for antiphospholipid antibodies and wasn't aware that we would need to avoid oestrogen based hormones but with trying to avoid medications from my GP after years of not getting the help I have needed but having to self medicate to resolve my health issues I decided to try homeopathy for my menopause symptoms. I am 50 this year and have been seeing a homeopath and resolving all my menopause symptoms and easing my way through aches, hot flushes, varying amount of monthly bleeding or not and terrible moods and I have come through the other side much relieved. When I wasn't seeing my Homeopath I felt dreadful and my Mum kept saying I should take HRT and I said I would if the homeopathy didn't work. Well I can say it has been wonderful and has resolved all the menopausal issues and more.
Glad you found something that helped you. Thankfully I don't have any menopause symptoms. Hoping to come through it unscathed and minus the cluster headaches 🙂
Hi my menopause started when I was 37 after undergoing a full hysterectomy. When I was diagnosed with APS in 2007 the first thing I was told to do was to stop HRT immediately so I did as I was told. Hope this is of some help.
Now that you are post menopausal, it’s important you get a Dexa scan for your bones, as you can lose up to 35% of your bone density within 5 years! It’s quite common and most women do not realize what’s happening, because it’s silent, until you fracture a bone or vertebrae! Just don’t want you to be in the dark like I was and fractured 3 vertebrae at the same time from violent coughing!
On a bit of a roller-coaster with this (am female despite profile pic). Feel free not to read or just scroll to the end! This has taken years to try and sort out. My "journey" seems even worse now I've written it down here. Women's health services, eh!
GP1 said migraine was worse/chronic due to hormone fluctuations but would give no HRT until/unless migraine was under control.Asked to see headache specialist, but referred to general neurologist. I was concerned about aura/TIA/stroke.
Neurologist said worsening migraine not due to hormones, it's just migraine, take painkillers. No increased risk of stroke for migraineurs with aura (we had quite the argument).
But can't take Ibuprofen/aspirin and was concerned about triptans. Plus cholesterol abnormally high.
Did research. Found this group.
Asked GP2 about APS. GP2 said I was making up symptoms from the internet and refused APL test.
Changed GP practice.
GP3 said no problem, take HRT, take triptans, gave HRT combined pill and pessary.
Had better energy, but facial rash, funny turns, and worsening chronic migraine.
GP3 said: What rash?
GP4 left surgery on emergency call at the time of the booked HRT review.
Took self off pill. Felt ill.
GP3 allowed tests for APS. Tested positive x3 for Beta-2 glycoprotein 1. Asked for referral from list of specialists in this group. Now getting help.
GP4 also referred on request to headache specialist: out of area, so paid, and only one appt. allowed as oversubscribed. Great but didn't know about APS, gave neuro stimulator and advised low side effect triptan. Neuro stimulator didn't work. Triptan worked.
Asked GP3 for natural HRT preferably gel form (transdermal) as much safer for APS/migraine.
GP3 prescribed oestrogel and utrogestan, said there would be a monthly bleed. But had not had one for several years. So took half dose. No bleed. No follow up or review.
Until GP5 referred urgently for scan as had no bleed = cancer risk.
But consultant said no, should not have bleed.
Can't find any one person that seems to be able to pull all this together.
So this is where I'm at. There's much more, but this is the HRT related stuff.
What I can tell you from my own research is that for menopause it seems to be safest to use a locally applied oestrogen cream or pessary, which should help with some symptoms, but doesn't work systemically so shouldn't affect APS or substantially worsen migraine. Obviously check this with your doctors though.
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