NRAS

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Feeling a fraud and a little homeless!

I'm sure that many of you have felt like this during the years. I was signposted to this site by the Consulant and nurse after being diagnosed with seronegative inflammatory arthritis. As many of you know was placed straight on PRED and MTX, then LEF and HYDRXY, now just PRED and HYDRXY. Other things have now emerged with Sicca symptoms, an intermittent swollen lymph gland in the neck and recently a photosensitive rashes on both cheeks after going hatless for short periods on a very cloudy days. Although ANA +ve I don't have any other antibodies to direct me specifically into a box. Feel like I am staring blankly at the PIX-N-MIX and maybe that's where I will stay. Undifferentiated connective tissue disease has been mentioned but not definite.

Searched UCTD in the search engine here and main posts are with the LUPUS site - lovely folk too.

So, left wondering where I belong and am so aware that many of you are enduring far more joint pains and erosions than I and you might rather I didn't prattle on with this forum. Getting the right diagnosis is rather a lonely place really, isn't it. Am on the right meds at present (HYD covers a lot of sins I'm discovering). It's that very human thing of not coping so well with uncertainty. Sound familiar? Many, many thanks to all of you wonderful people who have supported me so much since I joined. xx

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RosieA

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allanah3 years ago

Well your with anyone who can give you support! Until you get a label if you need one then stick with us too lol!

RosieA in reply to allanah3 years ago

Ah thank you. You have all certainly been supportive and that has got me through some tricky moments.. Only wishing for a label so that I understand more, get some peace of mine I reckon. x

allanah in reply to RosieA3 years ago

Yes I bet and that's the problem it can take a little while. I always wish there was a magic blood test to say its this or that and this or that pill will cure you!

RosieA in reply to allanah3 years ago

Ah, a like minded person. Yes, it's the mind games that can become all too intrusive. I wish I was more resilient when it comes to uncertainty. One step at a time has to be my new mantra. x

allanah in reply to RosieA3 years ago

Mine is patience is a virtue in the RA game!

3 years ago

Rosie what a difficult time. I too have sicca and am photo sensitive. As you say things are bit hit and miss with direct diagnosis or more than one in the mix. I for one have love your company and you can prattle away if you need too . I feel RA is often a mix of things and the more I learn about other autoimmune problems the more informed I feel . Xx

RosieA in reply to 3 years ago

Thank you so much. A good prattle is sometimes as strong a remedy as any meds. What happens with your photosenitivity? It only affected my cheeks, not arms, neck etc. My eyes do fluctuate - have resorted to drops from the Drs now, they help tremendously. My mouth also varies, but is slightly better off MTX and certainly off LEF. Am now having to go on drug for bone density as it is low. Oh the joys - see it doesn't take long to start a prattle. Thank you I too have loved your kind and generous posts. x

in reply to RosieA3 years ago

I always wear a hat never go out without sunglasses never sit in the sun and wear long sleeves and dresses and sunsensitive cream even in the winter.i find xailin gel at night really helps even the next day. Dry mouth drives me insane. Biotene gel helps and ice lollies or ice cream this gives me some relief. When I’m out a sugar free mint helps. It’s pretty individual but this helps me but doesn’t solve it. I have found nothing to help with dry nose. see your not the only one who prattles 😁

RosieA in reply to 3 years ago

Yes, have learned lesson. Normally religious about wearing hat. Am going to invest in one from sunsitivity - got a 50 factor, they also do one which is rain proof which wil be good from rainy days walking the dog. Your dry mouth does sound more advanced and I am sorry. Like you I have found I need sugar free gum / water whenever I go out now. Some nights I can drink a carafe of water, others less so. I have since discovered that I am now the third generation with dry eyes. I suppose I have been so obsessed with fatique and joint pain I have forgotten to touch base with others to find out how else the AI disease is manifesting itself. It appears to be boundless. xx

Kags1068 in reply to 3 years ago

Hi J1707

I hope you don't mind me butting in ...... 🙂 I was reading your reply and you mentioned dry nose. I had a really bad bout of that recently and my nose kept bleeding and goodness knows what, and I was desperately searching for remedies (as we do)! I came across something on Amazon called 'Neil Med nasal mist extra strength saline nasal spray.' It comes in a large aerosol can, so it has enough force to squirt up the nose quite well (if that makes sense). I also ordered an ointment as I though it would be longer lasting. It was ok but I found it a bit tricky to apply. The ointment was possibly the same brand.

As for the dry mouth, I have some dry mouth sweets/lozenges that work well. Can't remember the name at present, but if you are interested I will find it out. Also, Boots do a dry mouth expert range too. In this range there is a thick syrupy mouthwash that's quite helpful, and a little handbag sized dry mouth spray that's quite pleasant.

Anyway, apols again for poking my nose in (geddit 🙄) but you never know when something might just help someone else 😊

in reply to Kags10683 years ago

Oh I’m all for poking your nose in any tips or suggestions great fully appreciated I get nowhere with the gp. In fact everything I’ve learnt about RA and help with symptoms have come from here . Send it all my way Thankyou Kags x

Kags1068 in reply to 3 years ago

Haha - thanks for your kind reply and willingness to indulge me!😄😄

I've managed to find my mouth sweets and the brand is 'Xerostom' they are described as pastilles and 'nature's moisturizer for dry mouth & xerostomia.' Again I get them from Amazon and they cost about £4.99 for a little tub of 30. The tub is the sort of size and shape of a canderel sweetener tub so easy to carry in a handbag. I like them as they seem to work for me and have a pleasant enough but not too strong taste. All these kinds of things are a bit pricey, but when you want something to give relief we end up paying don't we?!

I'm under a Maxillo Facial Consultant too and he asked to see them when I once told him what I was using. He seemed to think they looked quite good (ingredients wise). Hope that might help😊😊

in reply to Kags10683 years ago

Cheers I’ll order some now and let you know how I get on x

Kags1068 in reply to 3 years ago

Fingers crossed they might help you too. Do let me know x

in reply to 2 years ago

Bought some too any relief that works!

Kags1068 in reply to 2 years ago

Oh wow - hope they help you too🤞

in reply to Kags10682 years ago

Got some . They are good relief lasts longer.. a winner thank you x

Kags1068 in reply to 2 years ago

Oh that's fantastic! Thanks for letting me know - it's always a bit of a worry when you recommend something, as if it's not suitable it's a waste of money. Not this time though, thankfully!! 👍😊

madme1 in reply to RosieA2 years ago

I 🤔 nk a prattle is bit like making those noises when you bend, twist or stand, it's got to come out sometime! I had one ex friend tell me off for groaning when I moved. "you sound like an old woman," she said. Fuming I retorted, "Well good because I ****** well feel like one and that's a match. And if I want a flipping good moan when I move then I'll flipping well ave one if it takes the pressure off!"

madme1 in reply to 2 years ago

Couldn't agree more with that.

helixhelix3 years ago

Rhupus? It exists..quite rare but perhaps could be you? I agree it’s important to have a name.

But many treatments are similar for a lot of UCTDs, so skill of your doctor to determine what’a best. Hydroxy does seem to be one that works for a lots of them so fingers crossed.

Anyway RA is so variable that another varient in our band isn't an issue...

RosieA3 years ago

Thank you HH, will now look up Rhupus. Had hands scanned recently, interesting that although tender no sign of disease activity - know that this can be true of CTD diseases other than RA. I've also read that it can take upto 3 years for some AI diseases to fully reveal themselves.

Interestingly, I put in a search about onions and garlic (which I have not been able to tolerate for about 4 years - make me feel dreadful and blow up like a barrage balloon) - garlic is a food which the Johns Hopkins site suggest is avoided with Lupus.

My admiration of Rhuematologists is increasing daily as it seems to be an extremely complex area of medicine. Thank you, I just didn't want to chat away realising that I am now in mid air but the kind comments have put me at ease again.

Kags10683 years ago

Hi Rosie

Sorry to hear you are feeling somewhat in limbo and a little bit homeless!😊

As others have already said, I'm sure you will always have a 'home' and a kind welcome on this site!

Don't know if it's any comfort/help but I've had some very similar symptoms to yours. Initially I was diagnosed with sero-positive JIA back at the beginning of 1983 when I was 14. About 1989/90, I was also diagnosed with Secondary Sjogrens Syndrome. This affects my mouth and particularly my eyes. A combination of that and inflammation from the RA has caused serious eye complications for me over the years and unfortunately I have lost the sight in one eye. I'm told it's very rare though, so don't worry!!

About 12 years or so ago I started to shed a lot of hair. It was hard to get anyone to take me seriously as I have always had lots of hair!! Over time I developed intense scalp itching too. It drove me nuts!! I even treated myself for nits on 3 separate occasions although I was fairly sure it couldn't be (and it wasn't)!!😄 I'd also had slightly reddish cheeks for as long as I remember but just considered it a sigh of being robust!🙄 On my second referral to dermatology I walked into the office, sat down and the Consultant said immediately 'you've got some kind of lupus - I can tell just by looking at you and seeing your cheeks." I was totally surprised! By this time I'd also got a lovely smooth bald patch on the top of my head, and a couple of open sores (lesions) on my scalp.

Following a scalp biopsy I was also diagnosed with Discoid Lupus in 2014. Hydroxychloroquine was also added to my existing meds, and it seems to have generally controlled the hair loss. Unfortunately though, I do now have quite an impressive but, I'm afraid, permanent bald patch which does require Bobby Charlton-like efforts in order to manage a decent comb-over!!😄 I have steroid lotion to use on it too which really controls the awful itching.

Also, I was instructed to stay out of the sun at all times 'as it is not your friend' and given factor 50 sun shield on prescription.

So, I guess the upshot of my prattling is that you may be very spoiled and possibly diagnosed with 2 or 3 separate but interlinked conditions as I (and I'm sure), many other lucky folk have!😉😉 This auto-immune business really is the gift that keeps on giving isn't it?!

Best wishes 😊

RosieA in reply to Kags10683 years ago

Oh my goodness, you have been through the mill and I am so dreadfully sorry that there was such devastating impact on your sight. These diseases can take their toll of that there is little doubt and the value of these forums to support each other is indeed invaluable.

Must admit to lathering myself with 50 Factor today. I has taken me some time to get one that doesn't make my skin react. Also going to buy my new sun hat from sunsibilty (or is it sunsitivity) which has 50Factor. I am now trying to avoid going out between 11.00 and 4.00.

I had some hair thinning but put it down to MXT, but noticed a small patch on the temple which had some affected skin (which of course I bothered) it has turned light brown now and had some signficant thinning. I also had a small patch come up above my lip, red, scaly and is starting to change pigmentation. I mentioned this to the consultant- she wanted me to take a picture but to be honest I couldn't get a good one. I sent her one with my glowing cheeks but forgot to send the full face one which shows where the rash was /wasn't. It's my job for the week. All makes Morse look like child's play.

Itchy scalp is truely awful. I used to teach infants and as soon as nits were in evidence with the children many of the teachers could be found examining eachother's hair. It's a horrible feeling and am so glad that you have found something that helps.

So many thanks for your kind response. x

Fruitandnutcase in reply to RosieA3 years ago

Oh my goodness, nits! I started primary teaching way back in the 70s. I was in such a poor school that the Nit Nurse came very regularly to check everyone in every class and I used to just tag on at the end and get checked too. I never got them thank goodness. My nightmare was always that I would go to the hairdresser and they would announce to all and sundry that they couldn’t cut my hair because I had nits!

I agree, autoimmune is the condition that keeps on giving and once it’s found a good host it invites all of its mates to the party.

RosieA in reply to Fruitandnutcase3 years ago

Your nightmare, my reality. Caught them when I got a bob and yes, found the little horrors (just the beginning) at the nape of my neck at the hairdressers - shame to say - in those days you covered your hair in organophosphates!! Killed them and goodness knows what they did to the rest of you. Bob was a mistake, nits loved it. Grew hair back and once up I never caught them again and bun a good place to store pencils. Only consolation is that AI is not catching. x

helixhelix in reply to Kags10683 years ago

Do you know about Beautiful Betsy? Don’t need one myself but a friend really appreciates hers..

beautifulbetsy.co.uk

Kags1068 in reply to helixhelix3 years ago

Hi Helix

Yes, I have come across those online. In the videos I watched, they looked very impressive. I'm pleased to hear your friend is happy with hers. I'm guessing they are quite expensive as I don't remember the cost being mentioned. Having said that though, hair replacement remedies do tend to be pricey!! Do you know if she finds it easy to take on and off? I'm assuming she doesn't have RA so has normal dexterity and can lift her arms? I would have to bend my head to put it on as my arms don't lift very far. My main concern would be ending up looking like Captain Mainwaring after a skirmish!😄

I'm definitely storing up info on products like these though for if/when it comes to a point when I really can't disguise it. I keep my hair wavy as it helps having body, and I'm probably one of the few 51 year old still wearing a bloody Alice Band most days!! Never mind. Anything that helps, eh?!

Thanks for giving me that info, and please feel free to pass on any other sites/tips if you ever come across any!😊

Best wishes.

helixhelix in reply to Kags10683 years ago

She’s not physically disabled in any way, but neither is she young and flexible! And I’ve never noticed her looking like Captain Mainwaring 😀 , in fact I don’t really notice it at all she just looks normal. I think they start around £175, and you should be VAT exempt.

Kags1068 in reply to helixhelix3 years ago

Thanks for that Helix. Very encouraging to hear your friend's Betsy looks so 'normal'. 😊

That starting price isn't too bad either. I was probably expecting it to be more so that's good (and makes it a bit more of a possibility if the time comes)!😉

madme1 in reply to Kags10682 years ago

Good god Kags you've really been through the mill. Do you often get pressure in your head as well. I sometimes have the feeling of millions of ants walking over my scalp, and the heat/itching drove me crazy. When I was on 10mg of Prednis, I couldn't function. Couldn't even hold my head up it felt like a lead weight, and the pounding made me feel like my head was about to explode. I said it was down to the prednisolone, got the usual reaction, "Oh no it can't be the tablets," I argued against it and finally he looked it up in his medical bible and said oh yes can cause inter cranial pressure. I thought I was going mad with the weird dreams as well. When it was reduced to 7.5mg dreams stopped and things calmed down, though I still get weird feelings on my scalp and pressure. Does anyone find the pressure in their head increases when there's about to be a thunderstorm?

Kags1068 in reply to madme12 years ago

Hi madme

Thanks for your kind words. Well, you've had your fair share of side effects from the steroids, haven't you?! 😳

When the scalp lupus business flares up, it's like a terrible burning sensation, incessant unrelievable itching and my scalp goes red and inflamed and sometimes gets lesions. These are all external symptoms though. The dermovate lotion I have does calm it eventually.

It sounds like the oral steroids really don't suit you well (unfortunately). I've taken them orally too for 27 years now at varying doses. I've had a number of side effects (constant bruising, skin thinning, weight gain, high blood pressure, repeated stress fractures from bone weakness, plus not being able to sleep, sit still and shut up when I've had very high doses)!! Thankfully however, I've never experienced what you have described! Sounds horrible! You would have thought a doctor would have known that to be a possibility!

What I will say that may have some similarity is that I have to use steroid eye drops daily to try and control eye inflammation. These drops cause me to get a kind of raised pressure/glaucoma problem in my eyes and I'm what's called a 'steroid responder.' I now have to have the mildest dose steroid drops the docs can get away with and use pressure reducing drops too. Years ago it got very bad and I had to have a trabeculectomy op to relieve pressure. Generally it's more controlled now.🤞 I mentioned it as it's a type of raised pressure, eventhough just within the eye, (and it can cause terrible headaches sometimes), so your problem does kind of make sense to me (if you know what I mean)!

Anyway, witter over, and I'm glad you've found a steroid dose that seems to be manageable for you.😊

RosieA in reply to Kags10682 years ago

Hum, made me wonder. Has your scalp ever felt 'pain' when you moved your hair, as in changed the parting rather than flipping it? A sort of pleasant pain if that makes any sense at all. I felt it for a week or so and then it appeared to go away - it was around the period I lost hair on my temple and developed some change in pigment. Just to add to the mix of scalp sensations. x

Kags1068 in reply to RosieA2 years ago

Hi again Rosie

Mmm ...... that's a very interesting question!🤔 I don't know if this is in any way similar to what you mean but when things are 'active' the areas that are causing a problem can range from feeling a bit more sensitive to downright tender, depending on how irritated it gets. I can easily move the hair around and pinpoint the exact areas by how they feel to touch too, and when it's feeling 'sensitive' as opposed to 'tender' I guess that could be described as not too unpleasant - sort of a bit tingly almost. Does that make any sense? The skin in those areas can start to look a bit darker too while it's irritated. In the couple of worst affected areas, I think this progressed onto the breaking down of the skin and a couple of circular(ish) lesions. They were very sore, but are thankfully healed at the moment.

Btw, I read further down that you have/had endometriosis too. Funnily enough, so did I! Didn't have an early menopause thankfully (in the post-menopausal phase at present) but have had bone weakness from years of steroids and a few bone strengthening treatments.

I mention this as I was once given a book on endometriosis many years ago, and I distinctly remember reading that one of the possible causes they were investigating was whether it could be autoimmune in some way. Don't know if that line of investigation ever went anywhere? Possibly an interesting coincidence for us though? 😊

RosieA in reply to Kags10682 years ago

Yes, you are right to call it a sensitivity - a better description. I haven't had it since but will need to start a more detail diary.

I started to have symptoms of endo in my 20s and ended up with an enormous chocolate cyst being removed with part of one ovary. Sadly, the combo of Danol and injections to induce temporary menopause ended up with me going into a drug induced menopause at 40. The continual reduction in oestrogen certainly has paid havoc and I always thought it would be my heart that would suffer most as I obviously couldn't tolerate HRT.

I have always thought that it would have done my immune system no good at all. Interestingly, my paternal aunt, her two daughters and myself have all suffered from endo, one from RA, all dry eyes, one from fibrosis. A right mob! I tried to google any link between endo and AI diseases but it appears that the jury is out but there might be a hint of endo being seen as an AI disease.

I do so hope you didn't suffer too much with the endo - ruddy awful disease and the drugs/ hormonal imbalances really played havoc with my mental health. All fine once I came off them all and nature took over. So hoped that I'd had my share of medical issues and now face this lot. Big sigh! Still, HYROXY seems to be doing some good, so fingers crossed. x

Kags1068 in reply to RosieA2 years ago

I'm glad the "sensitivity' comment made sense. Took me a while to decide how to try and describe it!🙄

Like you, I got symptoms of endo in my 20's although I had no idea - just thought it was increasingly painful periods! In December 2000 I got my husband up in the early hours one morning as I was in so much pain I honestly though something drastic was happening- so scary. He got me to A&E and I was almost passing out at this point. I was admitted to gynae ward and they gave me a scan. All looked fine, so discharged a few days later. Went to rheumatology clinic about 3 weeks after where there was a lovely female Registrar at that time. She decided to do a repeat scan - don't know why she just did. Got scanned fairly quickly and day or so later Rheumatologist called me in as an emergency. The scan had shown a massive mass on my left ovary. The thinking between him, the Gynae team & GP was very quick growing ovarian cancer. I was terrified and booked in for urgent surgery. Had the op June 2001. They wanted me to just agree to hysterectomy but I didn't really want to due to early menopause risk, etc. Thankfully, like you it turned out to be a massive chocolate cyst that fooled them all! Hadto lose fallopian tube and ovary, but that was ok. Also had deposits on bowel and bladder so they were removed too. After that, it was much better. I didn't want the hormones so just triple cycled the contraceptive pill. Caused so much breakthrough bleeding I gave up and just did it on a normal monthly cycle. Thank goodness, this seemed to hold it at bay enough for me.

I only stopped taking the pill in 2016 when I was 47 as I had to stop it prior to a hip revision op. I waited for a 'natural' period and one never came! So, that was it, menopause! No need to start it again. My GP thinks the pill cushioned me through all the early bits of menopause, which actually worked quite well!

Interesting you found a possible link between AI and endo too. Your strong family connection is curious too isn't it? I don't have that.

These things really do seem to be sent to try us!! I'm glad the Hydroxy is giving you some relief though - fingers crossed that continues. x😊

RosieA in reply to Kags10682 years ago

Such similar histories. Yes, that dreadful pain sounds all to familiar, funnily enough I was just about to be taken down for surgery when the first mention of cancer was made to me! This was in early 90s and although not that long ago, no mention of it was made to me before that.

Talking about pink cheeks. It was drizzling all morning but decided to do some gardening. Wore 50F hat (helped with drizzle). Nine hours later my cheeks are bright red but not the nasolabial fold. Have taken photos to send to the consultant tomorrow. Can you be that photosensitive? Ruddy H - gone from being able to potter around all day in my hat to not even been able to potter in the drizzle - feeling sunburnt but clearly can't be as it was raining. Feeling hot, bothered (literally) and decidedly fed up. It has been mentioned that HDY can make one photosensitive but I would assume it wouldn't preferentially target just the cheeks! x

Kags1068 in reply to RosieA2 years ago

Yes, it is funny sometimes the strange similarities you find with other people's histories. Interesting too. Endo pain is truly once experienced never forgotten isn't it? I certainly don't miss that!

Well, that experience with your skin today really does make is sound very sensitive. I can't say (thankfully) that I've ever noticed such a dramatic reaction on the facial redness for me. When I look at mine I mostly still just see the ruddy-ish cheeks I seem to have had forever! I just can't seem to really make a rash out of it, so perhaps if it is there, it must be very minor and perhaps mixed in with natural 'rosiness'? (Here's hoping, eh)?! Hopefully the Consultant will be able to have a good look over the photos you send. Will he/she reply by email to you, or will you have to wait until your next appt for their opinion?

I'm sorry you are feeling a bit fed up now. All that not knowing and wondering can be a bit draining as well as bloomin' frustrating!

Yes, my understanding too is that Hydroxy can cause increased sun sensitivity, but like you I wouldn't have though it would concentrate solely on the cheeks! Obviously, they have just proved to be a very attractive target!🙄😊x

RosieA in reply to Kags10682 years ago

I am glad that you are sticking with the rosy cheeks only. It's always an attractive look. Have woken up feeling yuk, joints a little tender, nasty aching feet when got out of bed etc. I suspect in my enthusiasm of feeling a little better I have overdone it the last few days and my body is 'revolting'. I think a couple of days with feet up as much as possible is in order to see if I can get back in balance.

Not sure about the Consultant. I'm due a call in about 6 weeks so unless she is unduly concerned I suspect that I shall have to wait. Got occupational health phoning next week to discuss fatique - will make for an interesting chat. I think I know what to do it's just my mind resisting it. xx

Kags1068 in reply to RosieA2 years ago

Haha - yes, it's definitely pure ruddiness for me and that's what I'm sticking with!!😳

Sorry you were 'feeling it' a bit this morning! It's oh so easy to overdo things when you think you are on a roll! We always seem to pay for it though! I can't remember exactly, but I seem to recall you haven't been diagnosed all that long (apols if I'm wrong)! Even after all this time, I still misjudge things at times, although I mostly know if I'm pushing my luck! Knowing your limits takes some getting used to - especially when you have different limits on different days! I wouldn't be surprised if one of the things the OT may talk to you about is the idea of pacing. About 10 years ago a physio I happened to see decided to refer me for pain management. No-one had ever mentioned anything like this before. I went along to an initial meeting for a chat and it transpired that everything they had to suggest I had worked out for myself over the previous 28 years so they didn't put me on the actual course!!😄😄 I suppose it came along a bit too late for me!! If you do get some useful tips though it may well cut out a few years of working it all out for yourself!😁

It's good you can send stuff to your Consultant prior to a chat/meeting. Would never have occurred to me! I think I've become so mired in the 'traditional' way of doing things over the years I'm clueless as to what might now be accepted norms! In my poor little brain I approach the clinics about the same as I did in 1983!! 😊x

RosieA in reply to Kags10682 years ago

Yes, good insight into different days, different limits. I guess as whatever AI disease I have shows its little head bit by bit, I may have to adjust myself accordingly.

About sending the photos - I think it is a Covid thing - since many consultations are now over the phone and since rashes do come and go, it sort of makes sense. I never would have done this before but I can't but think that it must help the Consultant fit together the pieces.

1983 - gosh a year of innocence, just graduated and all ahead of me. x

Kags1068 in reply to RosieA2 years ago

Yes, I'm afraid you may well become an expert at adjusting yourself!😄

Yes, it makes perfect sense that the Covid business would increase the sending of photos, etc. Also, obviously, good thinking to send pics when you actually have the rash! Silly me! Funny how easily the obvious answer can elude you sometimes (that's my excuse anyway)!!

Haha - sounds like 1983 was pretty exciting for you. Those were the days, eh?

I was 14/15 and just into my second year at high school (which for some inexplicable reason was called the 3rd year and then 4th year when we started our 'options.' Still seems like yesterday sometimes ........😊x

madme1 in reply to Kags10682 years ago

Yes I had endometriosis that was so severe at the age of about 40 that I had the full hysterectomy. I had not had children and they were more or less telling me that was the cause of it! After the hysterectomy they put me on Hrt and I'd been on it for about 10 yrs when they diagnosed RA and took me straight of HRT. No explanation, nothing then BAM! Menopause hit and boy did I not see that one coming! 🤣 🤣 Come to think of it mum suffered heavy periods all her life as well, I blame her! 🤣 🤣 My doctor then told me few years later that although I had an underactive thyroid thrown into the mix as well, that I couldn't have treatment for years as my body was producing just enough thyroxine. Sometimes an underactive thyroid can be a pre cursor for RA he told me.

RosieA in reply to madme12 years ago

That's a trio then! Awful disease. I was perimenopausal in my 30s. I couldn't go on HRT as the endo kept flaring- I had adhesions from the ovaries to the bowel wall etc. We know the picture. Four of us in two generations with Endo and three with an AI disease. I really think there is some research to be done here. x

Kags1068 in reply to madme12 years ago

Hi madme

Thanks for sharing that - very interesting.

Just by chance we've quickly discovered 3 of us who have had both RA and endo (one way round or the other). I expect there could well be lots of others out there too?!

Seemed a bit harsh to have your HRT stopped just like that! I'm not surprised menopause came as something of a shock!!😳

I never had children either, but that was in large part due to the RA. A gynae doc did once get the job of 'breaking it to me' that children would be very unlikely with the endo. The look of relief on her face when I told her it wasn't on the cards for me anyway was a picture!

I've been tested a number of times for underactive thyroid too, but so far it's always come back ok. I do have an aunt and cousin with thyroid problems though.

I think Rosie is spot on when she says it's an area that could be worth some investigation ............

BTW, with regard to blaming your mum. I think one of the many duties of a mum seems to be to get the the blame for lots of things!! Bit of an occupational hazard from what I've observed .............😁😁

madme1 in reply to Kags10682 years ago

Yes I know but anything that makes you feel better!

Kags1068 in reply to madme12 years ago

Haha - quite right!!😁

Kags1068 in reply to madme12 years ago

I've just had a realisation - I hope I made it clear enough that I was joking when I made the 'mum' comments. Sometimes you look back and wonder .......... (and then panic a little)!😳

Anyway I was definitely joking😁😁

madme1 in reply to Kags10682 years ago

It's okay Kags I tok it the way it was meant afterall it was me who jokingly blamed her in the first place!

Kags1068 in reply to madme12 years ago

Phew! Thanks for that ........ I just had one of those moments when I thought - aagh, what if?! 😳😊

Flipper12345yellow in reply to Kags10682 years ago

Just like to say how lovely and positive you sound.I'm newly diagnosed during covid, was beginning to feel sorry for myself and you've given me the boost I needed.

Can't thank you enough

Kags1068 in reply to Flipper12345yellow2 years ago

Hi there Flipper!

Wow! Thanks so much for taking the time to send me that comment. That was so kind of you.

I'm very sorry you've been diagnosed with RA. I think it's completely understandable and normal to have periods of feeling a bit sorry for yourself. I certainly still have my moments! I let it go for a while, then try to distract myself from it and tell myself that if I carry on with that feeling, ultimately it's only me who is going to suffer and feel worse. Obviously that approach wouldn't suit everyone, but it seems to usually help me. Bearing in mind too that I've had a long time to get used to it all!

You're very newly diagnosed, and I'm sure it was a bit of an unpleasant shock! You will adapt though, and you will find ways to help you cope and come to terms with it all. It must all seem a bit bewildering at present.

If reading any of my inane ramblings has helped you to feel the tiniest bit better and more positive, then that's made me feel very happy!

I sincerely hope you can get settled on a treatment that works well for you very soon. I'm sure things will start to seem better once your joints are more comfortable and you feel a bit more in control if it all again.

Also, people on here are very nice and supportive, and we are always happy to offer any help or advice we can.

Very best wishes😊x

Flipper12345yellow in reply to Kags10682 years ago

Thank you so much

Kags1068 in reply to Flipper12345yellow2 years ago

😊

Kags10683 years ago

Hi Rosie

Many thanks for your kind words. I appreciate it.

I must say, it does seem wise to take extra precautions in the sun, just to be safe. The brand I get on prescription is called sunsense. This is the brand recommended by our local dermatology department. Sunsense do various formulations including a handy roll on which is very good for reaching tricky areas, and a tinted matte version specifically for facial use. They're not cheap if you buy them, but you can often find offers on them. The other brand the hospital recommended is La Roche Posay. I've found this to be good too. They do a sort of tinted fluid for facial use (factor 50 obviously).

I don't have shares in either of these companies- honest! These were just the brands recommended by the the hospital. It can be useful to share these things, and if you get stuck it's another brand or two to possibly investigate! I don't really wear make-up (tbh, I'm a bit clueless with it and can't wear any around my eyes anyway!) but I do sometimes like to put a bit of face powder on to try and look more human! I found one on Amazon last year that's a powder compact, but factor 50. I've found that very good and only cost me about £6.99!

Btw, I also get lots of hyperpigmentation. Honestly, sometimes I just wish all the brown patches on my face would join up so I could at least look evenly tanned then!! I use various pigment fading products but it's slow progress. The skin doc has in the past offered to prescribe me lightening creams etc, but I'm saving that as a last resort as knowing how clumsy and cack-handed I am, I'll probably end up looking like a patchy ghost!!😄😄

My closest friend is a primary teacher and for the last few years she's been head of early years at her school so gets the joy of reception children!😳 Every September the spectre of dreaded nits re-appears. Bit of a nightmare for everyone as you well know ..........! At least since I've known what my problem really is I haven't hadto waste any more money on nit removal products. 😄😄 The cost soon mounts up when you start desperately trying various products!

RosieA3 years ago

Oh I loved teaching early years. They are an absolute delight, I never had a class of children I didn't love teaching, even if I was exhausted most of the time. I had some great colleagues whom I miss working with, I think early years teachers are rather a special brand (not meaning myself).

Thank you so much for the recommendations, I shall look them up. Funnily enough, I just had a friend phone to ask if she could pop over for a cuppa. Unfortunately, said no, as the sun is really intense at the moment and suggested earlier in the morning or late afternoon- puts another impediment to a social life at the moment as I am not really 'entertaining' in the house as am still in the severe risk group because of all the steroids.

Seems daft that the government is suggesting that shielding people go back out to play when there is a lot of angst at the moment about the rise in cases here and abroad. Ours is not to reason why... Ho Hum!! x

Kags1068 in reply to RosieA3 years ago

Ho hum indeed! I wouldn't like to try and work out the reasons for many Gov't decisions of late to be honest ..........🤯

Unfortunately, I think it's down to us to judge our boundaries now, although I'm very aware that's easy to say if you are not having to return to work.

My friend has worked across the years, but spent the last few in reception. She enjoys it as the children always make her laugh. Never a dull moment it seems. As you say though, very tiring! Seeing all the work she does, I'd say you are all very much a special bunch.

It is a pain when it's harder to sit out. I used to love the warmth on my joints, and once I'm covered in cream and have plonked on my very unflattering big hat, I confess, I still have a little sit. I recently bought a couple of zero gravity sun loungers that came with little sun canopies you can flip over the top of your head. The seats are a bit of an effort for me to get in and out of, but otherwise they're working well. I tend to sit in shade a lot too just to get some nice fresh air. I've sat outside so much more recently as I've hadto shield too (I've also been on continuous steroids for about 26 years). Funnily enough, that's exactly how I've been socialising too - friends popping round and having a sit outside. Definitely breaks up the long days!!😊

madme1 in reply to RosieA2 years ago

I spent 15 years as a Nursery Nurse and loved the job I'd dreamed off doing since about the age of 12. Unfortunately it just became too much and I had to give up. You spend 3 years working to get your NNEB as it was known at the time then have to give it up when your body fails! At the time though, things were begining to change, it became more regimental and paperwork was never ending. The children lost playtime, which is crucial at that age, and at the bottom of this pile of paperwork was a little child.

Neonkittie173 years ago

Hi Rosie, Sounds like you’ve certainly had a pick n mix of meds! I do hope it settles for you soon. I had some sun reactions from a different med a long while ago and had to cover up like a Victorian lady with her long sleeved dress and parasol! .. but as the med I took worked well for my RA I tolerated the sun rashes. I hope you have a great support team at the hospital and you have a great support team here! x

RosieA in reply to Neonkittie173 years ago

Thank you. Yes I am lucky. The hopsital have been great with two f2f and several phone calls during lock down. I have another phone consultation in 6 weeks and have been told to phone if I start to deteriorate whilst tapering steroids. Have been warned that HYDR can cause sun sensitivity but would assume it would have been on all exposed areas not just cheeks. Tempted to see if I can replicate rash and then take better photos for the Consultant. It is certainly true that the support network on this site is second to none. xx

Sheila_G3 years ago

Hi Rosie. As far as I am concerned you are welcome on this site any time. There are many people on this site who have many different conditions as well as RA. I hope you get a definite diagnosis soon and then you can get on the correct medication. x

RosieA in reply to Sheila_G3 years ago

Thank you. Everyone has been so very kind. This post has certainly opened my eyes to the number of people here who are suffering from a quite a variety of symptoms or indeed have more than one AI disease. I think in my initial ignorance I just assumed you got one and that most people would slip into the box. From recent reading I gather that nearly 25% will enter into the undifferntiated connective tissue disease diagnosis, until (and only if) their disease morphs into a more specific disease. It appears to be quite the waiting game. Patience has never been my strong point - better start practising I reckon. xx

mhlmom3 years ago

Hi Rosie. I joined this site when diagnosed with palindromic rheumatism as there was so much overlap with RA. I was told I would likely develop RA in time too and they were right. I also have 2 other autoimmune conditions and I think it’s very common when your immune system goes wrong for it to sprout arms and legs of conditions. It took several years for them to sift them out into individual conditions. As long as they treat your symptoms, a diagnosis will follow in time. Sometimes the symptoms are vague at the start. I had years of going to the GP describing swollen agonisingly painful joints but never had a single symptom in front of them. It was pure luck one day to get an emergency appointment first thing one morning with a locum when my right hand was distorted and they immediately sent me to the rheumatologist. At my appointment there - absolutely nothing! The pain also jumped all over my body during a flare so my right hand could be swollen and then an hour later be fine but my left knee would then do it then my right ankle and so on. Even I thought I sounded like a hypochondriac 🙄 PR is relatively rare so they aren’t looking for it and most doctors have never even heard of it. But I got there with my diagnosis. You’ll get there - the rheumatology journey is a long one. And these lovely folks will support you as they have me xx

RosieA in reply to mhlmom3 years ago

You have had a rough time getting to where you are now. I do know what you mean about hypochondria. I spent a few years with terrible nausea, horrific bloating and days of feeling unwell after eating garlic and onions, Drs raising eyebrows etc. Have read over the weekend that on Johns Hopkins site suggesting that garlic is a no no if you have Lupus! (Not suggesting I have) but the tiniest bit will still make me ill. My grandmother suffered from dry eyes and terrible joint pain. Her Dr never believed her! I was lucky in that my GP sent me straight to rhuematology when I presented with my sore fingers and doubly lucky in that I presented early as it was affecting the instrument I played. So... as you say, I shall be leaning on my wonderful friends here whilst I discover the what's next... Thank you so much.x

Biofreak3 years ago

Hahaha Rosie, not laughing at you but with you. What's wrong with having a foot in several camps? I have I can tell you because having more than one condition means potentially more camps. I have 4 clubs so far. Wish I didn't but I do and the plus side is you can chat to more people. Can brighten up your day quite often. So you are not homeless but have several potential homes xx

RosieA in reply to Biofreak3 years ago

Indeed, there is no problem at all. I have always been loyal to a few but carefully chosen friends and it is time to branch out methinks. In have written a couple of posts on the Lupus forum - lovely folk and they have guided me in some areas, such as food intolerances - quite an eye opener and very reassuring. Indeed, the forum can brighten your day, allay fears and certainly inform you. Thank you for your kind response. There's no doubt I feel better and feel happier to chat about all the concerns I have as new symptoms appear. xx

madme1 in reply to Biofreak2 years ago

I agree with that! I have an RA home, a Chrohns home and an underactive thyroid home! 🤣 🤣 🤣

Bopeep123 years ago

You sound like you are really having a rough time. Lots of hugs and hope you get answers soon

RosieA in reply to Bopeep123 years ago

Thank you. Fingers are firmly crossed but suspect it won't be any time soon and I suspect that might be a good thing as it might mean that the AI disease/s is slightly milder. Thank you for the hugs and good wishes and I return them to you as well. xx

madme1 in reply to RosieA2 years ago

Sending hugs to you Rosie, hang in there!

madme1 in reply to madme12 years ago

I cant even cross my fingers

RosieA in reply to madme12 years ago

Ah thank you. I remember doing practices in Nureries back in the day. I even spent some time in one in which Joyce Grenfield used to teach! Young ones certainly need all the energy you can give and it is so sad that you had to give it up but I agree that successive governments have often lost the plot re early years. It's good to have friends in different places and I so hope that the different forums are as delightful as this one. Take care and gentle hugs back. x

madme1 in reply to RosieA2 years ago

I love Joyce Grenfell, watched her videos many times on you tube especially the preschool teacher one, "George, George, don't do that.".

RosieA in reply to madme12 years ago

Yes! I think we have all had those moments - I can distinctly remember asking one child across the room to stop sawing another child's head off in the role play area. It was a bike repair shop. Great fun. x

Green2304613 years ago

It is a minefield to begin with! The first thing is learning all the abbreviations For the various meds! You learn a lot from this site I have only been on it a week and I have found more info than in the last ten years. Also always read something that makes me smile. Today it was the stream about nits! As a teacher it was my annual issue around October

Take care and be kind to yourself.

RosieA in reply to Green2304613 years ago

Thank you. Yes we're good at making eachother smile. It's rather nice what pops up sometimes that shows the human behind the illness. xx

SLEepyhead1233 years ago

Hi and welcome. You are certainly not a fraud and are welcome to make this site your home. Lots of people who end up with a diagnosis of lupus understand exactly how you are feeling. It takes on average about 5 to 6 consultants and years to come up with a definite diagnosis of lupus. Although it may well not be lupus and a different diagnosis we have all been in your situation. We will support you in any way we can

💜💜💜

RosieA in reply to SLEepyhead1232 years ago

Thank you, your response is very kind and reasurring. At least I am under rhuematology and have been since the beginning, and in this I am fortunate. I'm thinking that I may need to carefully rechallenge myself in the sun (again on a cloudy day) to see if the rash comes again. The consultant couldn't see from the photos if the rash spared the nasolabial folds, sadly I didn't send her that photo (will do today) the rash isn't there, just the cheeks. So rechallenge I think it will have to be.

Off to the dentist this morning to check teeth before I start my new meds for bone density- another landmark day. Bone density low from early menopause and years of treatment for endometriosis.

Thank you once more for your lovely response. x

RosieA in reply to SLEepyhead1232 years ago

P.S. Inadvertantly re-challenged on a rainy day. Same rash (both cheeks, not nasolabial fold) hot, sore and felt so tired the next day. Full set of mug shots off to the Consultant. Just noted capitalisation of SLE - clever you! Kindest thoughts.

Mmrr2 years ago

Hi I found your post really interesting.

I have a complicated history. Briefly, initially I was not believed by my rheumatologist that I felt so unwell, she informed my GP of such. I was given an incorrect diagnosis of depression, which followed me around until I requested a psychological referal, the psychologist was very clear that I was not depressed and in fact coping well, despite obvious physical ill health.

New rheumatologist, new investigations showed extensive tenosynovitis, some synovitis and erosions. I received a letter from her saying my treatment had been 'sub optimal ' and I was bring referred to the biologics team.

I entered a new world of competence and care.

I do have a diagnosis of sero negative RA, but the biologics specialist is not convinced by the diagnosis. My bloods are essentially normal.

My main issues are tenosynovitis and more recently hot burning muscles, my joints being the least of my problems.

I have queried with the team could I have some sort of soft/connective tissue disease but they just don't know.

I'm now on lmedication 10 with no real improvement in my condition, the only thing that has any real impact is prednisolone.

I'll follow your posts with interest.

RosieA2 years ago

It really is an education. I have read your struggles and my heart goes out to you. I have to admit that I bit a GPs head off when they mentioned giving me anti-depressants. I reminded her that I was tapering steroids, newly diagnosed with an AI disease and had every right to be teary - I was not depressed. Only positive from the encounter was the anger replaced any other emotion for a while.

As you may remember I placed a post about potentially going on biologics but was very concerned as family history of rare non hodgkin lymphoma. Disease activity was the same at moderate but fatique, joint ache other wierd and wonderful things still there but like you bloods normal except for +ve ANA. Sjogrens, UCTD, IA, all mentioned but just to add to mix I get a lymph node come up in my neck when I'm hot and bothered, it also came up just before my new rash- interestingly biologics, appear, to be used less in other AI sydromes - I sometimes wonder if this is because there is less research in them. I have certainly found more relief when on Pred and HYDRO than when on the more powerful DMARDS. Even though HYDR usually used for mild disease or as an add on for RA, so..... Am certainly holding my breath as I have to taper down the steroids as I have low bone density already.

I fear that following my progress might be like watching paint dry but it will be lovely to have company. xx

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