newbie and waiting….

[Jojosteeler]

Hi! I’m a newbie. Backstory: mom and both sisters have Hashimoto’s. My mom passed in 2010 & was told she had “inflammatory arthritis” a couple years before she passed (although by then that was the least of her medical worries).

Flash way forward: I started having ocular migraines, very brief (10 seconds or less) bouts of vertigo as well as knee pain about 5 years ago. These symptoms have gotten progressively worse, so I now have finger and wrist pain, ankle pain, SI pain and hip pain (in addition to the knee pain). It is manageable, but makes it hard to do my job as a Physical Therapist….so my doctor ordered lots of blood work. Most came back normal, except my Rheumatoid factor was 191, Uric Acid 6.3, & my Sed rate was 30. CCP & ANA negative. I am awaiting my first Rheumatology appointment as well as a neuro appointment.

- I keep thinking that (1) it must be a false-positive RF & (2) there’s no way the dizziness and pain could be related. Thoughts?

[AgedCrone]

I’m afraid dizziness & migraines can be associated with RA. I had migraine for years before I was diagnosed with Sero+ RA…..vertigo too.Nobody in my family had RA at that time …but two cousins were subsequently diagnosed.

That was 20+ years ago & I’m still going strong thanks to the RA drugs I have been prescribed over the years.

[Boxerlady in reply to AgedCrone]

That's interesting as I've got some dizzyness/vertigo atm. I saw a GP thinking that she might suggest the Epley manoeuvre which I'd read about but she just prescribed medication which I decided not to take as it's manageable. I first had it with peri-menopause - years before RA diagnosis - but it didn't last as long as it is doing currently. I might mention it to the consultant at my next appointment; annual review due this month but I know that they're a couple of months behind atm.

[AgedCrone in reply to Boxerlady]

The Epley manoeuvre is really very good for helping with vertigo, but must only be used after investigations by somebody highly qualified in diagnosing it’s use. My vertigo got really bad when I had Labrynthitis……which my GP diagnosed as Meniéres disease….but I was sceptical & hot footed off to ENT. …..who referred me on.

I had to see a neurologist & have lots of tests …..the doctor explained it can make the dizziness worse if done incorrectly.Once I’d had the tests, I was given a written list of the movements …just to be used by me…to do it myself at home. Had to do it a couple of times & it worked well……thankfully haven’t needed it for a long time.

[Boxerlady in reply to AgedCrone]

Yes, I suspected that it was one for a specialist so when the (young) GP didn't mention it, I didn't either. 😉

[AgedCrone in reply to Boxerlady]

Someone qualified can diagnose which side is affected….so make the movement in the correct direction…..turning the wrong way can make things worse.

I’m sure a lot of GP’s are qualified to do it…but it takes time….which of course they don’t have these days.

There are specialist physios who can diagnose & do it very successfully….most big hospitals have one or more.

[Jojosteeler in reply to AgedCrone]

I guess I forgot to mention in my post that we have tried the Epley multiple times. It’s something I do regularly as a Physical Therapist. I test negative for BPPV (benign proxysmal positional vertigo) - the type of vertigo the Epley is designed to diagnose and treat.

[AgedCrone in reply to Jojosteeler]

I have found it very beneficial…but it does seem GPs here only recommend it if you opt to see someone Privately.

I was unfortunate & for a few years had repeated bouts of viral Labrynthitis….but thankfully they eventually stopped.

It does sound as if your migraine with aura & a positive RA factor do point to you really having RA….which is not what any of us wanted the hear, but at least you can get started on Dmards & find a drug that suits you quickly.

Hope everything goes smoothly for you.

[Jojosteeler in reply to AgedCrone]

My sister (the one with Hashimoto’s) has very similar pain to mine (but more severe) and has been getting a lot of rashes. Initially her GP said it looked like psoriasis & it was assumed she likely had psoriatic arthritis. She does not get the aura or vertigo. Rather than send her to rheumatology, she sent her to a dermatologist who said she has eczema - so decided not to consult rheumatology (they have since found invasive breast cancer, so they are focused on that).

My point in mentioning all that is that I wondered if it might be psoriatic arthritis I have - as I have some symptoms on both sides of my body, but things aren’t very symmetrical. But I don’t think you typically have elevated RF with that.

[AgedCrone in reply to Jojosteeler]

Whatever your rheumy decides it is,with + RF you will probably need to start on some sort of Dmard to start to get control.

I am convinced I have progressed through DMards on to Biologics with a fair amount of ease because I was started on drugs as soon as I was diagnosed back in the 1990’s. Back then we could see a Rheumy regularly…whereas now you are lucky to see your consultant once a year.

My rheumy at the time believed in only taking one drug at a time….& was keen to give each drug a good trial before changing. …..I often disagreed…but did as he asked…& except for Sulphasalazine…my Drug From Hell….he was usually right😩

[nomoreheels]

Hiya Jojosteeler, welcome. As AC has said, migraines can be associated with RD, more so with aura, which is the same as what you describe as ocular migraines.

It does sound as though you've potentially had RD for a good while. As such it wouldn't surprise me if you start meds after your diagnostic appointment. I'm sensing you're in the US? If so then I’m not sure what the guideline is but here in the UK it's quite normal to start a corticosteroid (prednisolone here, prednisone in the US) or by injection to deal with inflammation & pain whilst whichever DMARD becomes effective. None are fast acting hence short term steroid help. The most commonly prescribed DMARD is methotrexate due to being the gold standard for effectiveness & safety, &, being the NHS, low cost. You may also be prescribed an NSAID.

I'm unsure why you consider the RF may be a false-positive, it's not a particularly low result which could be questioned. Your inflammatory markers (your ESR or sed rate) is up.

RD has 2 categories, seropositive & seronegative, this explains nras.org.uk/resource/seropo...  That said blood tests alone aren't sufficient for a diagnosis, you'll need a physical examination & usually images are taken of hands & feet, maybe others depending on your Rheumy & the other joints you mention. You do have family history, that's taken into consideration when diagnosing.

I hope this is of some help.

[Sheila_G]

I hope you have a positive consultation and you are put on the correct meds for you. Good luck.

[Jojosteeler in reply to Sheila_G]

thank you! I am hoping I chose the right place for me. They tend to be a little more holistic - with a therapist & nutritionist on staff. When they receive the referral they schedule 2 appointments 2 weeks apart. The first is an intake - which (I have heard) is 60-90 minutes of history and lots of questions and trying to jog memory of if there were clues earlier than you realize. They order lots of blood work - and (from what I understand) imaging that is read by a radiologist who specializes in autoimmune degeneration. Second visit is to go over the results and what they are thinking.

[Sheila_G in reply to Jojosteeler]

That sounds very in depth. I hope you get the treatment you deserve and soon. Good luck.

[Garnacha]

Oh I never knew ocular migraines could be associated with arthritis, I suddenly developed these around 2018 about a year before the pain in joints started & eventually being diagnosed with psoriatic arthritis, I only have a small patch of psoriasis on my scalp although I do have very dry skin & areas that are very patchy mainly on my hands, the dermatologist dismissed these though 🙄

[Jojosteeler in reply to Garnacha]

I didn’t know about the migraine thing either, but it’s actually reassuring. I don’t get migraine headaches (maybe 3-4 throughout my life) & I am someone who has never really had any injuries or illnesses. I seriously feel like EVERYTHING started falling apart around the same time - so it’s reassuring and makes more sense to me that they are related.

[KittyJ in reply to Garnacha]

me neither and i Got one as soon as I got up this morning so that’s my day gone 😞

[Garnacha in reply to KittyJ]

Oh no, I've got sumatriptan which are pretty good if you take one at the onset of a migraine, I hope you're feeling better soon x

[KittyJ in reply to Garnacha]

thankyou Garnacha 😊

[Jojosteeler in reply to KittyJ]

I am super fortunate that I don’t generally get headaches - just dizziness and vertigo. I see a neurologist this week to confirm that it’s migraine - MRI was good but showed changes that are consistent with “chronic migraine”. I was confused since I don’t really get migraine headaches. So the thought is that I am one of the fortunate people that doesn’t actually get headaches - but that my dizziness and vertigo episodes are actually migraine activity.