Hi today I told my rheum nurse my finger nails (of forefingers and middle fingers especially) seem to have flattened. Noticed this over last month or so. Weird! Nurse said it could be some 'condition' alongside the RA and wrote it in my notes for Rheum Doc to see in 3 wks.
Oh, she did the same when I mentioned my mouth gets v dry and I struggle to hold conversations (not that I have many!) as my lips n mouth dry out.
Raynaud's and Sjorgen's seem to be quite common with RA folk..... , and Raynauds can affect nails and Sjorgens can affect mouth. Like buses, once one disease turns up others come along too.Px
Daren't look those up at mo, P.
Feel like my life is spiralling out of control.
Rheum nurse & GP are aware of me feeling down especially following diagnosis.
Were you shocked when received diagnosis?
Thanks for your help
J x
Several boxes of kleenex, sleepless nights, convinced I'd be in a wheelchair in weeks etc, etc. Yes, it hits hard, and is scary and frightening. But things do improve, and you find ways round stuff that can't be changed. And life's ok now, different, but fine. One day at a time, try to get the pain under control and don't dwell on things that might never happen. Px
Glad I'm not on my own anymore - Glad I found this site. x
Yeah I have terrible problems with dry skin everywhere also, dry nails, mouth, eyes and nasal passages.
Get a good hand cream to keep hands and nails moisturised and carry a bottle of water around taking regular sips, also, I always keep a stock of ice lollies/ choc ice's in the freezer.
Beth x
great ideas thank you. Yes I've been loving ice lollies, now I've an idea why.
Been takin' Vit D and calcium so my nails had been growing really well for once - I thought! Then I noticed how flat they are.
I've been off n on antibiotics for 18mths due to chronic sinusitis - ENT doc said my nose was 'very dry' so it can't wash out the 'bugs'. Maybe I've had problems longer than I thought?
Hi Beth,
I've noticed that my skin is terribly dry, wrinkled !! with it. I have been using Epaderm, which worked before, but seems to have no effect now. Also the nail on my small finger does not grow at all.
If you have the name of an effective moisturiser I'd be glad to know. I am allergic to all fragrances, so can use only 'Simple' products.
Thanks, for your suggestion.I've already stocked up on the choc ices. Anything for a bit of joy !!
Zannie XX
Hi Zannie, I usually use Dove products but I also sometimes spray Avon's dry oil all over straight after a shower, it really does help keep my lower legs and arms moisturised. Also, I paint a nail quencher on nails which helps prevent them splitting and peeling.
Hope this is some help, I guess it's a case of trying different products to find one which suits our different skin types. xx
Hi, te very best thing for dry and itchy skin is OLATIUM....comes in an emulsion or creme..its brilliant, but very expensive...my mum gets it on a script, try it and good luck
My nails are very dry and brittle these days - I have painted them with nail hardener to try and make them more robust but they still keep cracking and breaking off and look awful. I'd put it down to the meds but now I think about it I've been getting Raynaud's symptoms a lot too so will mention it to my rheumy when I see him next week - thanks for raising it. TTx
OK Tilda, glad I've unintentionally given u a little nudge to mention to your Doc. J x
Hi there, can't believe there's also other health problems you can have - Isn't the RA enough? Told today I'll prob b put on the Sulfa thingy stuff alongside the Hydroxy so worried bout that.
It's all gettin' bit upsetting and I can't seem to think of anything else but the state of my body at present.
love J
Hi I was on MTX but had disastrous side effects! Now on Hydroxycloroquine and Sulfasalazine. Have had no side effects and slowly my joints are improving, so don't be worried about taking these drugs. if these ones don't work there's more to try.
Carolyn x
Hi Carolyn, are these 2 drugs kind of the 'starter' ones? Maybe come with less side effects?
LOL! I wear contact lenses for hydrotherapy and a little swimming so I'm not sure re causing them to go yellow!!!
It's encouraging that you haven't had any side effects with this combination so I'll just have to wait til I prob go on the sulfa too.
J x
Apparently these are as you say quite a common combination when you start off your meds. I was started on 15mgs MTX which I believe, hearing other people, maybe should have been given as a small dose and working my way up!! As I said before - lung inflammation after 3 months. Shame as it was working. However, was then started on the milder DMARDS. Started out on Hydroxy and then Sulfa added in after about a month.
Don't worry about the yellow staining. It's not half as bad as I imagined!!!!!!
All thge best
Carolyn x
so you can continue wearing lenses then on Sulfa__? Were you wearing them Carolyn?
No don't wear contacts. I was referring to the other thing that is supposed to turn yellow!!!!!!!!!!
Carolyn x
Aarr yer I've read that on here somewhere I think!!! Hilarious yet a little scary as we just take these meds as we believe our Docs will make us better. Wot's it really doin' to the rest of our insides? Sulpher ? Not gonna think too much about that one either!
Glad you are forwarned about the yellow weeeee cos it could give you a realy shock! SOL!!! (scream Out Loud).
Hope you've had a good day, Carolyn.
J x
Hello J
I am so sorry you are struggling so much at the moment. I think you are absolutely right to avoid "googling" because I know from experience that the info out there can be upsetting and often inaccurate. The rheumatologist is definitely the best person to speak to for advice and I do think you should mention both the nails and the dry mouth - and the feeling low - because it is important that he has the full picture
I have a dry mouth and I have found some things which help. I find that "Boots Expert Dry Mouth Spray" really helps because you can squirt it directly to the back of your throat for instant (although short term) relief. I carry it everywhere with me and have it on the bedside table for use in the night. You can use it as often as needed too which is good. (Top tip - if you do try the mouth spray and find it helps, I have discovered that the "Boots Expert Dry Mouth Mouthwash" is the same stuff, so it is much cheaper to buy a bottle of that and decant it into the spray bottle. You may have to ask Boots to order it in for you though because not all branches stock it). I have also find that chewing sugar free gum helps - particularly if I know I am going to have to talk a lot and may not be able to use my spray. I also use Biotene dry mouth mouthwash and toothpaste - but they are exensive to buy so I am lucky to be able to have them on prescription these days.
Thinking of you.
Tillyx
Yes, to google medical issues can fill your head with things your Doc may not feel you are ready to know OR you'll cross that bridge when you come to it. I regret reading some things online about RA because, like I've said b4, I'm now on 'overwhelm'. My fault though.
The dry mouth sprays n mouthwashes sound like they'll help, do you know what is in them? I don't use tend to buy mouthwashes with alcohol in as they come with there own mouth problems.
Thanks for replying Tilly - Will look those things up asap.
J x
Just a thought about the nail problem - have you been checked for hypothyroidism? One of the first signs I had when I was diagnosed with this (a couple of years before the RA) was brittle nails. I still have ridges running from the nail bed to the tip on both thumbs (rest of nails are fine) but at least they are strong and don't break now. Good luck. Jane
Hello again J
As far as I know the Biotene Mouthwash is alcohol free - but I reckon you would find out what was in them all if you Googled (I reckon that is a safe thing to Google lol).
Docs can also prescribe dry mouth sprays but the one I had - Glandosane I think it was - didn't help me at all. Really hope you find something to help. None of them make the problem go away but I have found them helpful for short-term relief and I know that my mouth health has improved hugely since using the Biotene mouthwash and toothpaste regularly.
Thinking of you.
Tillyx
I feel so self-conscious when talking with someone and can't continue so now I've an idea it might be something connected to the RA, I feel more like mentioning it to Rheumy. Don't want to appear like I'm making things up.
Thanx Tilly x
Hi there,
have you definitely been diagnosed with RA now? (I was looking at your last question about Rheumy writing 'Inflammatory Athritis' on your letter instead of 'RA'). 'Cos if there is some uncertainty then Psoriatic Arthritis might be a possibility - my Rheumy thinks I have that on the basis of a couple of weird toenails! (It is a form of Arthritis that usually affects people who have the skin condition Psoriasis, but some people have no rashes, just nail changes).
Anyway, don't let that worry you as it is not a 'better' option than RA but it's not a worse one either.
Like you I'm trying to get back to normal as far as possible but find myself thinking about my illness an awful lot. I just think that's normal and that it'll change in time.
All the best to you,
Christina x
Hi Christina, whenever i see my Rheum Nurse, she refers to it as "rheumatoid arthritis" as does my GP. My blood was pos for rheum factor a long while ago and i seem to have the RA list of symptoms. rheumy suggested Fibro could be there as well.
your correct that she has put inflamm arth on 2 letters to gp but at rheum nurse's initial appt she def said that the rheum doc wanted to inform me about RA and gave me an RA info pack to read up on. Reading other people's comments on diagnosis i dont think im the only one confused! LOL! ... hmmm psoriatic arthritis - i might dare to check symptoms against RA's thank you. Take care n will try to let u know. J x
I was wondering if they'd considered fibro, as the 'fibro-fog' can make you forget stuff. I've been diagnosed with fibro, and I had to cut short a phone call with one of our admin team last week and email him, as even I couldn't understand what the hell I was babbling on about, so God help him!
Psoriatic arthritis is a possibility for the nail problems, as are RA, Raynaud's and Lupus - they can cause pitting (tiny dimples on the nail plate), separation from the nail bed, longitudinal ridging, and 'spooning' (where the nail becomes concave) - but realistically, your best bet may be to be referred to dermatology, unless your rheumatologist can say what's causing it.
It sounds like it's all a bit confusing at the moment - I think you need to get clarification from someone, and discuss your worries with them. Not knowing what's going on is one of the worst things.
Good luck,
Sara x
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