Here's the other one: Jan - NRAS

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Here's the other one

Titchyj profile image
15 Replies

Jan

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Titchyj
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15 Replies

Terribly swollen looking Jan - can't help you but something is obviously going on. Don't give up! X

nomoreheels profile image
nomoreheels

Oh my word Jan, am I'm right in thinking both your GP & Rheumy have seen your hands in this state? If so there is certainly something he can do I'm sure but he does need to see them like this whether it's in the flesh so to speak or these pictures, further ones too if it progresses further. Do you have access to a physio or occupational therapist? It looks to me as though you'd benefit from hand splints to try to stop progression.

I'd also be careful about your rings, if your finger swells to the point you struggle to get them off please take them off. When I had 3 months without my meds my hands swelled terribly, actually it surprised me as I'd never had much swelling at all there before I started my meds, anyway, I had to have my wedding ring cut off. I have quite bony fingers naturally, large PIP joints so my wedding ring always turned round on my finger as it was made large enough to go over my PIP joint but the swelling was such it started to cut off the blood supply so desperate measures were taken. The jeweller who cut it off had it made larger for me & when I collected it it fitted fine, perfectly just like before but now I can only just turn it again. I've recently needed an increase in MTX for disease activity in my feet & my levels haven't really shown this inflammation but I knew & I know in my hand now that I can't turn my wedding ring. This isn't OA, although I do have OA but mostly in my right hand, this is definitely different & I'm wondering if it's the same for you, that you're not showing it in your bloods but there's no doubting it's there is there? You've no knuckle definition of either hand have you? I can't see the lumps at the sides but again this is an indication something's going on. I would keep pushing & ask him to explain just what he thinks is going on & if he can't help if he'll suggest someone who can. I know you have problems with NSAIDs but have you tried a topical NSAID, ibuprofen, piroxicam or the like, or even NSAID patches? I'd see if your GP thinks of anything to help, he's the one who should be aware of how your hands are just now. Have you any inflammation anywhere else Jan?

Titchyj profile image
Titchyj in reply to nomoreheels

Both have seen hands like this, it's been ongoing for nearly 3 years now. The only thing that helped was naproxen, but the side effects and my worsening asthma put a stop to that. I will watch the rings, at the moment I can just about take them off, but if they swell any more they will have to come off. Topical steroids have similar side effects too, as for patches, I have tried psin patches in the past and had bad reactions to both the med and the adhesives. No wonder they don't know what to do with me, I'm just a disaster zone coming apart at the seams.

Thanks for all your suggestions, will definitely look into them more closely.

Take care

Jan

nomoreheels profile image
nomoreheels in reply to Titchyj

Aw bless Jan, you're not a disaster zone just someone with multiple problems needing help to sort them out & get relief. I just don't understand why if they've seen them in that state or as near as it's thought nothing more can be done, siimply put it's hogwash. Again, as you've responded to naproxen it's a plain case of something causing inflammation & an NSAID reduces it. I understand your issues with meds, you might know but my h is the same & it's a terrible frustration for him, even as far as reactions to adhesives like you. I had to call for the paramedics & he had a couple of days in hospital not long before his heart op due to a reaction to a patch. Do you have an ephedrine allergy Jan? This is what was thought to send him into anaphylactic shock, it seems they put a desensitizing agent into the adhesive & he reacted to it. Anyway, apparently it's since been reported to the manufacturer & we understand that a warning about this is to be included in the patient info leaflet.

I'm wondering if a naturopath could be of some help to you. Under normal circumstances I wouldn't suggest it with all the effective meds available nowadays but you have so many intolerances it's possibly worth investigating. Although that said you'd still have to be carefully guided as some used have the ability to have equally undesirable effects. x

Titchyj profile image
Titchyj in reply to nomoreheels

I just don't tolerate the meds in them and have an allergy to most things adhesive, I come out in a rash like I've been scolded, it's not quite as bad as anaphylactic shock though. Perhaps going down the naturopath root may be the answer, I'll try anything.

Jan

nomoreheels profile image
nomoreheels in reply to Titchyj

Still bad enough though for you. I hope you find some way to get that inflammation down. Have you tried the usual ice packs etc?

Titchyj profile image
Titchyj in reply to nomoreheels

I've tried ice packs, but because my hands are so hot they melt the ice too quickly to get any relief. Running them under cold water causes more pain, but there is some relief. Thanks NMHs, hope you are as well as can be.

Jan

angel-delight profile image
angel-delight

Hi, both my hands and feet swell like yours. Rheumey and my gp blame it on taking steroids for a long time. I have had take off my braclet as my wrist swells more at night and cuts off the circulation, and I don't wear rings anymore. I took pictures on my phone to show rheumy nurse as you can bet the day of my appt they are not at the worst. I didn't get any advice as to what will help, just as I said they blame the steroids. Good luck, I hope you have better luck, than i did, take care. S x

Titchyj profile image
Titchyj

Thank you Angel-Delight, perhaps that will be the next thing as I have been on steroids for a long time. Hope you can get some answers soon as do I.

Take care.

Jan

Hi Jan, Do you suffer from generalised water retention, or is the swelling just showing in your hands. I only ask this because I have to take frusemide diuretic drugs because I do build up fluid in my hands and feet due to a heart problem and they do become hot and very uncomfortable. Last time I saw Rheumy he was horrified at the swellings and contacted my GP to jig up my diuretic meds. I had rheumatic fever when aged four (now 66) and sustained damage to mitrochondrial valve, hence problems I now suffer. of course in addition to the fluid I also have a lot of pain in the wrists and fingers due to RA with nodules etc., so it's a real nuisance !!

I wear compression gloves as advised by physio and they do offer some comfort and when hands are burning I soak them in cool water for a while and that does help a bit with the swelling. I have to follow a low salt diet as well and drink lots of water.

Hope this helps, lynda xx

Titchyj profile image
Titchyj in reply to

Hi Linda, not been diagnosed with water retention so far, the gloves help a bit, but I can't keep them on for too long. Hope you get some relief soon.

Jan

in reply to Titchyj

Jan, hope you find some relief soon for the swelling, must be getting you down, Hugs, Lynda xxx

Titchyj profile image
Titchyj in reply to

Thanks Lynda, I hope I get some relief soon too, driving me insane at the moment.

Jan

Karen77 profile image
Karen77

I have had swelling, but mostly around the joints. I had to take off my wedding & engagement rings Nov 2014 and still haven't been able to put them back on as even though the inflammation has gone down, the knuckle is still too large. I'm reluctant to damage the rings to put in a hinge or other modification to be able to wear them again...

Good luck to you Jan. I'm sure it's frustrating and uncomfortable. Gentle hugs to you.

Titchyj profile image
Titchyj

Thanks Karen77, I think I will have to take my rings off soon too. Hope yours get better soon.

Jan

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