help - end of my tether

[Brychni]

Hi all

So once again I am contemplating going private just to get some sensible answers and get on the right treatment plan but with latest developments I am not sure now if I need rheumatology or haemotology. I will be posting this in APS group and NRAS.

The long and short of it is that I have finally had the follow up blood test for antiphospholipid antibodies which I had 2 YEARS AGO !!!! And surprise, surprise it is still positive.

This is very important to me as it is possibly the cause of my migraines which, on top of everything else are ruining my life. I have tried everything inlcuding HRT which I am still persevering with. I ALMOST paid for the CGRP migraine injections privately as my appointment with the NHS headache clinic won't materialise until 'sometime' next year, when the second blood test result cam through, thankfully otherwise I would have parted with in excess of £1k for something that could easily not work and could easily be replaced with a daily aspirin which is standard treatment for people with antibodies who have hitherto not had any blood clots. That'll be me. On top of all that it appears that hydroxychloroquine is prescribed for APS and can over long term use reduce the antibodies. Is this why they gave it to me when I was diagnosed with Unidfferentiated Inflammatory ARthitis? As some of you may remember I stopped taking it because I didn't feel it was doing much. at that appointment the consultant pointed out the marbling on my legs which I thought was normal and asked lots of questions which I know now were relevant to APS. Why on earth didn't she just say that??? Why on earth didn't she just say it causes severe joint pain for which we prescribe hydroxy and btw you should take an aspirin????

I honestly feel like I am doing this all myself. I could have come to this conclusion with the help of Google and a couple of blood tests. And all the time I am in serious pain ALL the time even at night.

On the APS website there is a list of specialists in Wales and they are mostly rheumatologists. Does anyone know if any are particularly knowledgable about APS? Should I go for one of the haemotologists listed?

My nest appointment with rheumatology is a telephone appointment early next month. I feel like I'm going to end up telling her what I should be doing. There doesn't seem to be any joined up thinking.

Rant over! Any tips about consultants gratefully received 🥰😘

[oldtimer]

It is very difficult to be a patient with a problem which is uncommon as most general specialists will be hesitant to discuss it with you as their knowledge is not more than yours (and probably less). Rather like talking to the average practice nurse about Rheumatoid Arthritis - the patient is the one giving the information. If you look at the profiles of the individual rheumatologists on the private hospital sites, it usually tell you what areas they are most interested on and have done extra research into. A quick look at the ones at the Spire hospital (Cardiff) doesn't give any one useful for your particular problem.

The other tip I would give is that anyone in a consultant position will have written several scientific articles about things they have researched. If their interests are not listed have a search for scientific articles written by them.

If I come across anyone useful when I'm researching articles of interest I will certainly let you know but I don't know anything about antiphospholipid antibodies - I'll go away and look it up!

[Brychni in reply to oldtimer]

Hi oldtimer - Thank you for this.The list that I have is on the APS website and thankfully doesn't include the private rheum I saw at Spire.

I wonder if I booked an appointment with either a haemotologist or rheum they could refer to me to either if they felt it was more appropriate. Feel lost. x

[Marionfromhappydays]

I really don't know much about APS but considering it's an autoimmune condition I would say it was more of a rheumatology or immunology condition rather than being under the care of haematology.

Now you have the test results I would write down all my questions and ask the rheumatologist next month at your appointment and give them a chance before going private, considering the appointment is quite close (although I'm sure it doesn't feel close !).

I will say from my own personal experience I've been a bit narrow minded about things and it is a fine line of advocating for ourselves ( which sadly I feel we have to do) and self diagnosis. As you know alot of autoimmune conditions come together so it might not be so simple to say everything is due to APS 🤷‍♀️ Sadly we do have to have some faith in rheumatologists and if you don't trust yours especially after your next appointment then yeah I would move on and find one I did trust.

I would be asking why these tests hadn't been done before but I guess it's not going to help you now is it, got to look to the positive and make a plan of action to get some help.

Sorry I've probably not helped, I truly hope you find answers to your questions as its been going on a long time x

[Brychni in reply to Marionfromhappydays]

Hi M, I hope it is all due to APS! A nice simple regime of aspirin is very attractive. The high risk of stroke obviously less so but at least I would know what the hell is wrong with me. Where are you at with meds these days? I remember you being in a lot of pain too a few months ago. did you have a good appointment in the end? x

[Marionfromhappydays in reply to Brychni]

I hope you get a definitive answer.

I changed consultants within my rheumatology department and she's great, I feel she's listened, she took time to go through things and I've now been diagnosed with fibromyalgia as well as inflammatory arthritis. I'm not sure how I feel about this but I've got to learn to except things.

They aren't sure if I've got psoriatic arthritis , RA or a spondylopothy so are leaving diagnosis quite open but alot of the treatments are the same. Ita taken 9 months but my biologic is working (I don't think I should have been left this long for it to work but 🤷‍♀️). I've got to do alot of things to help myself so big changes needed but we only get 1 life .

Hope things work out well with your appointment x

[Neonkittie17]

I’m sorry you’re going through this. 💗 I’ve initiated the most part of all my health issues in the last for years re side effects and analysing blood results and pointing stuff out. I think they often like a proactive patient who does the work for them! My rheumy is very helpful though. Keep plodding at it till you get what you need. I do an update to my consultants re what’s outstanding/to address. Could this help you and maybe prompt them a bit more? x

[Brychni in reply to Neonkittie17]

I always get the impression that they are sneering at me! Sounds daft I know but I can't help thinking they don't want me to tell them how to do their job. 😔

[Neonkittie17 in reply to Brychni]

Well I encountered a guy on the phone recently (not a rheumy) who was almost secretive in the way he spoke and when he wouldn’t answer something or explain why, I did politely say I was used to being informed. My rheumys have always been so upfront especially the current one. I’ve not been sneered at. Not good. I once said to a GP I was an expert on me and he laughed and agreed!

[Amandaazz]

Hello...I'm a lifelong migraine sufferer, my migraines have changed over the years. The HRT I am on is the oestrogel pump and utrogestan pills, as the patch is not good for migraines, so hopefully your GP has given you the same. MSG is a big migraine inducer. I was prescribed Amitriptyline for Fibro a couple of years ago and this has also helped my migraines and helps me sleep, which has been a game changer. Only last week I was diagnosed with RA, so I am at the very early stages of managing this too. I wish I had gone to a private rheumatologist a few months a go as I would have been diagnosed earlier!

[Brychni in reply to Amandaazz]

Hi A sounds like it wasn't fibromyalgia in the first instance 🙄. I tried the gel and utro regime and the gel just didn't agree with me. Really nasty rage and feelings of despair. I tried it a couple of times in desperation. I'm obviously perimenopausal because of my age but have absolutely no symptoms so the gel was just too much and not constant enough.

Started the patches 3 weeks ago and mood has been stable. Too early to say if it will help with the migraines. If it doesn't then I'll stop as it's the only reason I'm taking it.

I don't think I eat anything that contains msg. Alcohol was always a trigger but I stopped drinking about 4 years ago and it's made no difference to the number of attacks. In fact they've got worse even without alcohol.

Luckily I don't really get fatigue; the constant pain though, does exhaust me and doing anything is difficult. In spite of this I still exercise every day and do my physio (not helping at all btw).

I've been on all the usual migraine meds literally all of them. Every time with high hopes but side effects always too much to bear.

Hope you get on the right treatment for RA. Let us know how you get on.

[StormySeas]

Hi thereI have APS, diagnosed - I think, with 1 blood test (!) about 12 years ago. Pre RA, but after autoimmune thyroid, and a few other AI diseases.

I take aspirin every day.

Before the focus shifted to RA, my GP suggested St George's for a specialist APS consultant. If I couldn't find anyone nearer with the right level of specialisation, I'd be tempted to go there.

Maybe you could organise to have some of the required tests done in advance?