A flare or a symptom pile on?

[whitedog]

How do you differentiate?

Since I swapped MTX for Sulfasalazine, in 2018, I generally felt better - less nausea, fewer acid reflux attacks, pain seemingly under control.

Over the last year or two, however, I've developed a number of niggling symptoms. The existing inflammatory condition in my right eye seemed to be getting worse and I was then diagnosed with dry eye in both. And now, as well as being virtually blind in my right due to secondary glaucoma, I have cataract in my left - just waiting for a date for surgery with fingers crossed.

A couple of years ago I got a rash on the back of both hands. I thought it was a reaction to something I'd brushed against while walking through an overgrown meadow but no idea. Rheumatology didn't seem concerned. It's still there but not as much, though I've noticed my hands and parts of my legs seem quite red - almost purple at times.

Then painful niggles. A horrible nagging pain along the left side of my left hand - and also along the right side of my right foot. The knuckle in my right thumb keeps cracking and feels bruised. A joint at the base of my third finger, right hand has been sore for a while. I often wake up with my right hand and sometimes my left, feeling swollen. And chill blains! Never had these before. I'm a semi retired dog walker so got them during the really cold spell and they've lingered.

And about 8 or 9 weeks ago I put my lower back out, just sitting in a low chair. It's better but still not right. I'm wondering if it's joint/disc rather than muscles as 3 years ago a scan revealed I was at the point of osteoporosis but no meds prescribed by rheumatology, just a lifestyle change recommendation (at 60!). I was due another scan in November but I completely lost it when the letter arrived stating I may be asked about the biological sex I was 'assigned' at birth. I called and told them to stick the scan. Not the best move, looking back, but I really never expected that the NHS would be infiltrated by this pseudo science ideology so I'll battle on, regardless.

Is this how the disease develops, with new symptoms and deterioration? Or is it just a succession of niggles that may go away again. Are they part of a 'flare'? How might you define a flare up? I did once suffer a sudden, agonising pain between my hand and wrist which kept me awake all night. But it never returned.

Thanks for listening - needed that offload! 😀

[Neonkittie17]

It’s so hard to say as the niggles, pains and issues may not be RA inflammation/flare, but maybe some could be as a result of RA leading to some OA over the years. Possibly if you’ve been very active and overdone things? Sciatica and cold weather can also make joints/surrounding soft tissue misbehave that are usually stable. That happens to me each winter. I used to ask my senior rheumy physio all these things as he was brilliant at diagnosing by simply putting his hands on you and getting you to move the problem area, ascertaining the restriction and where the pain was awatching you move/walk/stand up/sit down. .

I didn’t think the hospital was allowed to ask re gender In a general situation for a bone scan? I hope a meds/ blood test review re your with your rheumy could ascertain more where your RA is at present. It may be you could benefit from another RA med if Sulpha isn’t holding RA back enough. That’s for the rheumy and you to discuss. It may be as I said that it’s osteo damage/wear and tear niggles. I hope you are able to talk to your rheumy and can say how you feel re the I appropriate question on the form.

Also, good luck with your eyes and is your rheumy aware of this? I would let your rheumy know of these issues if not done so already. I do hope you are able to get a phone call appointment if not a FTF very soon with the rheumy. Good luck. 🙏🏻

[whitedog in reply to Neonkittie17]

Thanks for your reply. I'm feeling pretty miffed with rheumatology at the moment tbh. They used to review me every 6 months but it had crept up to 3 yrs before I went again last year and that was only because my docs had called me in for an annual review and referred me. The person I saw did say that if my scan showed a deterioration there is medication I could be prescribed to strengthen my bones but I've lost faith. The way I feel is that, if they can't respect me as an almost 63 year old woman, then I don't really feel like dealing with them either. My GP surgery is good, however. And I'll make sure I have my blood tests with them regularly. I'm not sure if they're aware I didn't have my scan or why.

I complained to PALS about the 'assigned biological sex' nonsense which came from the hospital who do the scans and got a call from a diversity officer at the hospital where rheumatology is based. Spoke to her for about an hour. She was basically saying it was out of their hands but that there were some patients they didn't have a birth sex down for and they needed to know before doing scans as I guess it would affect the result.

Haven't told rheumatology about my imminent eye op - don't know how much the clinics speak to each other. I've just had my pre op assessment so expecting a date within the next 3 months. That's my main concern at the moment, really, as if anything goes wrong, it's an end to driving, dog walking - everything.

I used to be very active 20 years ago but not now! Generally just do one group walk with my dogs for 60-90 mins and come home. So def not over done anything. I seem to have inherited some of my mum's conditions - she had a curved spine and brittle bones.

Anyway, thanks again. Feel better for just getting stuff off my chest. I live alone and don't get to grizzle about things much!

[Neonkittie17 in reply to whitedog]

You can email/write and ask for a more regular review with rheumatology rake pally as you’re feeling twinges/flares. I didn’t see my rheumy for over 3 years Jan 20-Feb 23 due to my high level of immunosuppression, but saw my nurse at the hospital/rheumy infusion clinic twice and had one rheumy and 2 nurse phone reviews. If you’re on biolpgics you are supposed to have a 3 monthly review but as we know the pandemic made that go out of synch. Think it’s important to keep a regular appointment with rheumatology. I recall once settled on Sulpha early days of RA I was allowed to go from 3 to 6 monthly appointments but always 3 monthly blood tests. Good luck. 🙏🏻

[Bakerannie in reply to whitedog]

With bone scans, in order to assign a risk score or ratio, they need to base the results on your sex assigned at birth, as hormones secreted during a lifetime for a man or woman will influence the likelihood of fracture. This risk score is what they base the decision for treatment of osteopenia or osteoporosis., and it is different for biologically male or female patients. This is really not a political question, strictly biological.

[whitedog in reply to Bakerannie]

Their use of 'assigned' is political though. It comes straight from Queer Theory and the rejection of the sex binary.

[Bakerannie in reply to whitedog]

I don't think that medicine differentiating between the biologically male and biologically female physiological function is a social construct, but I will agree with you, in a vast number of other other areas, that it is highly politicized. Genotype and phenotype in essence really have nothing to do with each other.

[whitedog in reply to Bakerannie]

This article highlights the kind thing I'm talking about.

You have some areas of the NHS trying to do away with the word 'woman'. Then other areas offending women like me by saying they might ask me what my sex is when I arrive for treatment. That's despite me having been under rheumatology for over 15 years, having given them loads of my time when I agreed to go on a clinical trial and even agreeing to be a guinea pig for them at an ultrasound event.

archive.is/nOMoN

[Runrig01]

Unfortunately when it comes to dexa scans, your biological sex is important to calculate your risk, which then decides which treatment is required. Female hormones play an important part in the development of osteoporosis, current treatments like HRT can impact on what your offered. You always have the option of “prefer not to say”, but it could impact the results. Date of birth is also always required, to compare to patients of same age.

Even if there were some political reason behind it, it seems futile impacting your own care because of it. I don’t get those wanting to be referred to with pronouns like “they” or “them”, but I do understand that companies have to be seen to respect their wishes. My husband writes reports and no longer uses he/she due to the potential for complaints, so mentions the person in name throughout the report. As I say you always have the option, not yo say. Pronouns weren’t a thing in our day.

I would contact your rheumatology nurse and request a review, to look at current treatment, and perhaps request they refer you back for your scan.

[whitedog in reply to Runrig01]

I totally understand that they need to know our sex. But I refuse to play along with the ideology that is blurring boundaries between men and women, adults and kids and has been used as a cover to medicalise gay and autistic kids. I'm a gay woman. I've watched it unfold, I know how the TQ+ was force teamed onto my community and it's only now that people are generally waking up. And I know that the NHS has been infiltrated as many within the org - esp midwives - who are totally against the ideology, have challenged the use of 'assigned' at birth.

I made a point to the diversity officer I spoke to that if they don't know someone's birth sex - then deal with that person directly. She did say, though, that they would replace 'assigned' on future letters with 'registered'.

[Hidden]

Many of us did not see Rheumatology during Covid. Many Departments are only just catching up.

As others have said biological sex is an important indicator of issues/ treatments.

I would ask for a further Rheumatology appointment if your symptoms have been uncontrolled for a while. Stress always make me a lot worse. Look at what is stressful for you and see how you can change tack.

Calcium & Vit D seems to be the standard suggestion for post menopausal/ osteopenia women..

[Hidden in reply to Hidden]

My dad had cataracts removed a year ago and said he’d never seen so clearly. It is quite a simple op but obviously will be stressful beforehand.

It will be down to you to let your Rheumatology Dept know about your eye issues. You are are the lynch-pin in your own health. Various data systems exist within the NHS and not all are joined up.

[whitedog in reply to Hidden]

Yeah the first op I had in my right eye was a cataract and I've had 3 glaucoma ops since. But it's never without risks and my consultant has made it clear that, if not him, only another consultant can do the op on my left. I have vitreous detachment - not sure how much that might complicate things. I think, ideally, he'd rather I waited till it was an absolute no brainer as I guess that would minimise the risk for them but he did agree it would mean giving up driving and working meantime so why not go for it now.

[Hidden in reply to whitedog]

With eyes, they tend to wait until things get ‘bad’. Early treatments can cause more issues…