Hashimotos - inflammatory arthritis - hydroxychloroquine

[Ziburu]

Hi

I have Hashimotos and a multitude of other ‘little conditions’ as you’ll all know. My main pain atm is my swollen finger joints.

Due partly to covid I just had useless phone consultations with a rheumatologist and his locums. All saying you have osteoarthritis take an aspirin. Then a couple of months ago I finally got a face to face appointment, which I was going to cancel and ask for a referral to a better rheumatology dept elsewhere. Ideally, a good teaching hospital or one that does joined up thinking and understands autoimmune. Have been in such agony though I thought I’d go rather than wait more months.

After telling the consultant how unimpressed I was with his dept, my non treatment and their non diagnosis skills, he agreed it was inflammatory, likely autoimmune and perhaps I could have steroid injections or hydroxychloroquine. My joints have been deteriorating for about 15 years, resulting in distorted fingers with boney lumps on fingers and toes. Now they swell up overnight, with painful red lumps. I did have a period of the finger joints sticking and clicking. Every time I’d ask GP for an RA bloodtest it’d come back negative. And it’s like “no it’s just osteoarthritis, that’s what your Xray shows too, take a painkiller”

Now have recently started hydroxychloroquine, as instructed by consultant. But I think I’m still going to look for a clued up Rheumatology dept, that’s got more idea about autoimmune diseases.

I have dry eyes and basement cell dystrophy and as hydroxychloroquine can affect your eyes I don’t that it’s really good for me to have at all. Does this resonate with any of you guys? You have my sympathy if it does. What do you recommend? Thanks

[Fruitandnutcase]

sounds awful. It can be so easy to get the run around fr9m your GP. I had the opposite with the GP I saw - he fast tracked me immediately and when I said ‘Bur my fingers aren’t all bent’ he said that nowadays if pe9le are treated properly right away there is no need for them to get like that. I was beyond lucky!

I take hydroxychloroquine- before I started and every year since I’ve had an OCT scan of my eye. You do have to be careful as hydroxychloroquine can cause irreversible damage to your eyes.

It might be worth speaking to whoever is dealing with your dystrophy and asking about using hydroxychloroquine. If that isn’t likely to be easy then go and speak to your optometrist - they are very highly trained in conditions of the eye and hopefully would be able to put your mind at rest or else point you in the right direction to find someone who can. Also you can download (free) a thing called an Amsler Chart and use that to keep an eye on your vision.

I have got the driest eyes ever, I am in remission from Graves Disease and although I wouldn’t say I have thyroid eye disease I had a lot of the TED symptoms when my Graves was active, hydroxychloroquine hasn’t made them any worse. I use preservative free eye drops regularly throughout the day although I started taking these when I developed osteoporosis and I discovered when I ran out and didn’t rush to reorder that my dry eyes which had been really good - suddenly got worse so I’d definitely recommend them

smile.amazon.co.uk/Vegan-Om...

Good luck with it all, hopefully things will improve for you from now on.

[helvella in reply to Fruitandnutcase]

Response edited to removed all of the link from the "?" onwards which identifies you, Fruitandnutcase, to Amazon.

[Fruitandnutcase in reply to helvella]

Oh goodness! Thank you Helvella, I hadn’t realised that. Once again I’ll say ‘what would we do without you’ 😊

[helvella in reply to Fruitandnutcase]

You only need the bit up to B076PVW2LV - which is the ASIN code for the product.

In fact, if you just go to Amazon and search for that code, you'll find the product!

[Fruitandnutcase in reply to helvella]

😊

[Ziburu in reply to Fruitandnutcase]

Thank you for all the info👍😊. I have plugs in my tear ducts, to stop the tears draining. One fell out recently and my eye was drying up more again. I use hydro forte drops - preservative free. Plus sodium chloride cream at night. I have an eye clinic appointment in April I’ll check with them then.

Glad your fingers are good and your GP referred you promptly. How old are they? I’d say my GP is in his 40’s so no excuse for not being clued up about current treatments. I have to do all the research about all the conditions and take care of myself and my family, as our main GP certainly cannot be relied upon for that. 🙄

[Batty1]

I really get annoyed with healthcare anymore they can’t diagnose anything unless your blood test reveals it…. Its absolutely life sucking for the patient who suffers constantly…. Nodules on knuckle joints is actually pretty classic Rheumatoid arthritis symptom and also a Psoriatic Arthritis symptom…. Sometimes blood test don’t detect the condition and even worse Psoriatic Arthritis doesn’t even have a blood test and occasionally the one they do use (doctors can’t help themselves) is usually negative…., Fire this Rheumatologist and get another and keep doing it until you get the help you need… I spent 2 years house bound and bedridden being told by 3 Rheumatologist nothing was wrong with me I just need a “break” as if somehow taking a break fixes everything… finally saw a 4th Rheumatologist who diagnosed me with Psoriatic Arthritis and sadly the damage is done because treatment took so long… don’t wait move on to another Rheumatologist.

[Ziburu in reply to Batty1]

So sorry about you being given the runaround, that’s so exhausting and exasperating!

Coincidentally I wondered about RA and Psoriatic too. For years I’ve suffered from very flaky patches on my scalp, for which I use betnovate. Plus I get itchy red patches randomly occurring on my chin, near my nose and by my ears etc. I got referred to UCLH and I think St Thomases for some insight. Thinking I might have a food allergy. Came back I probably am sensitive to amines (ie ripe bananas etc) as they can trigger my migraines, but that was it.

Have paused Hydroxychloroquine, as I’m very concerned that it could affect my existing eye condition. I have an eye clinic appointment in April, so I will double check again with them. Thanks for the advice re the rheumatologist, yes definitely time to move on👍😊

[serenfach]

I saw a Consultant in June, who arranged for an appointment at a hospital 40 miles away for chest and arthritis consult. The Chest clinic decided I should not be a deep sea diver (I am a pensioner!) and I was passed to the arthritis clinic. I was then told that the Consultant was not there, and had not been for months. My GP then tried to find another Rhumatologist to find there was not one.

My daughter is paying for me to see a Rhumatologist privately, but the waiting list for even this is 9 months. I now have an appointment next month, so I hope it is worth the wait. In the meantime two fingers have become so bent they no longer work.

Despite the GP seeing my fingers, I have never been offered a blood test to see why. I was told it was athritis and there was nothing they could do. I do feel that because I am old and female, I get written off.

[Ziburu in reply to serenfach]

So sorry for you and your poor fingers! That’s so outrageous. I think its complete misogyny and ageism. What’s wrong with these doctors! They’re supposed to be taking care of our health! We have a value. I think they’re plain stupid and ignorant. They are completely out of touch with the latest treatments and coasting to retirement, doing ‘just’ enough. I don’t take anything my GP says at all now. I do my research and ask him to refer me to a consultant. Not just any consultant either, particularly as my local hospital keeps falling into special measures! If you ask to be referred they cannot refuse. You are also entitled to a second opinion. Hence I’m going to ask to be referred to a more clued up Rheumatologist.

I asked GP for the RA bloodtest and finally to see a rheumatologist. So like you, it’s down to poor GP treatment we’ve been left disabled! Hope you get some joy from the Dr next month. Let me know how you get on. 👍fingers crossed