My journey is short so far and I'm still in the early diagnosis/treatment phase. It's being a drawn out process as I need to have further scans before decisions are being made. I was given the option to take steroids while I wait for the scans with the warning that the scans may be impacted by the steroids so if I felt I could cope without using them to do so. I took the decision to cope. I also discovered that I could take paracetamol alongside my Naproxen and advised to take as much as I feel I need up to the max.
I'm now doing this and at the same time trying to change my mindset that although I have a chronic illness, it's better not to keep living like I have to protect myself (if I do that, I'll pay for it later thinking). I reset my office (I'd taken to working from bed because it was more comfy) and am working at my desk again which already gives me a mental boost. The paracetamol that wasn't working on its own is now at least helping me to sit more comfortably on my office chair. I'm taking short walks - I'll not likely be back to my long walks until I get targeted treatment, but 15 min at a slow pace is manageable. Generally, I'm no longer feeling like an invalid but rather a person with reduced abilities. My main issue now is that I am struggling to use the gear stick so I'm not driving. Oh and a good night's sleep would be a huge bonus.
Strangely had a blood sample request form through the post yesterday (no accompanying letter). Checked up on what tests were ticked - CRP, full blood count, liver function and kidney function. I get the CRP but are the others fairly standard? Also have to take a urine test to each rheumatology consultation. Does anyone know what that's for? Sorry, I'm always inquisitive!
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Gottarelax
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Yes those blood tests are the standard ones. They check liver and kidney function because DMARDs can cause issues but they usually resolve quickly if you have a break in the treatment, if it occurs regularly they will probably swap your medication. As your not on DMARDs yet they may want a baseline reading. I’ve never been asked to take a urine sample but I’d imagine it would be to check for UTIs.
Should have also mentioned the full blood count is useful as White blood cells are part of the immune system and red blood cells (especially Hb) give an indication as to whether or not you are anaemic. People with chronic conditions often become anaemic.
It's so good to know that your rheumy team are being so diligent in their investigations. Fingers crossed that the results of the extra tests and scan will enable them to prescribe exactly the right medication for you. Your new mindset, excercise regime and office set up will do wonders for your mental health too. I bought what is called an 'egg-sitter' cushion ( a honeycomb silicon in a removal cover) and it has made a such a difference. I can sit comfortably on even those horrible plastic chairs. Mr Bezos sells them although they are available from many suppliers
You have the right attitude….I was determined from Day 1, 20+ years ago as I stumbled around on sticks & then crutches that this disease was not going to rule my life & it hasn’t.
I never ever thought of myself as having a chronic disease…& I still don’t …so try to put that phrase away.
I’ve got RA & I am doing OK is the way I look at it - once you get started on your first DMards…you will feel as if you are getting somewhere. Thankfully there are-so many drugs available these day..
You will have ups & downs…but keep looking forward to getting the right meds,& life will start to look better.
I accepted that life was going to be a bit different ….not worse just different…. I listened to my rheumy …and looked forward to finding the right meds for me…but sometimes you do have to bite the bullet & persevere.
If you can afford it…get an automatic car……It will give you back your independence…..& life will feel much better if you can pop out whenever you want to.
You do need to keep moving …I’m afraid sitting clutching the aches & pains is-no help……so keep up your walking….and how about swimming…non weight bearing exercise is favoured by many with RA.
All the tests you mention are quite usual……mostly they are checking that your organs are all functioning normally before you are prescribed any drugs.
Your rheumy sounds very sensible - advising you not to start to rely on steroids….pills from hell in my opinion.
Sadly some people do have to rely on them…but if you don’t start on the Pred…you won’t know what you are missing….and most people do try to cope without them.
I’m sure a decision will be taken soon on the meds you are going to be prescribed, and that you’re one of the lucky ones who gets the right drug very quickly.
I’ve been considering an automatic car but I really like my current car so just holding off to see whether the shoulder issue is resolved by treatment….my next car will definitely be auto when the time comes to change. I’m quite a way from any swimming facilities and the one I used to go to is really cold…is that likely to be a problem. I imagine being stiffer and in more pain in a cool pool.
As for steroids I am convinced that my mum and sister were put on them without proper investigation and 30 and 10 years later they are both reliant on them still. They were supposed to have PMR but there is a lot that doesn’t add up. I suspect séronégative RA for mum and SLE for sister. For that reason I will not take them until diagnosis is fully complete.
Off the cuff…if you want your shoulder to get better…..get an automatic!Think about it ….if you pick a spot it gets worse …if you keep straining a shoulder that hurts ….it gets worse!
Get the auto…. Deciding which one you have ….will take your mind off the RA 🤔
I don’t know about Cold-water… ..but you wouldn’t get me swimming in England for all the tea in China! But as you will read on here many people do find it helpful.
I’m a cheat really because it was found that I was allergic to steroids…. they had very strange affects on me ….so I’ve just never taken them….except the odd Depomedrone years ago.
As you have seen the effects of steroids on your own family I’m sure you will listen to your rheumy,& stay away from them if at all possible.
Right now..I am just finishing my daily glass of wine….with my rheumy’s full approval….and I’m sure it does as much for me as any prescription pill.
Enjoy your glass of wine...sounds like a great idea. I've been looking into automatics this evening and sadly they don't make an auto version of mine so I'll have to consider an alternative, Something to do that is better for my mental health than googling RA 😂
I wouldn’t rush to get an automatic if you like your current car. I remember before I was diagnosed not being able to change gear easily (I remember driving home from my sisters only using 1,3 &5 because I couldn’t physically get it into 2 or 4) however within a few weeks of starting treatment changing gear was no problem. I still drive a manual car 15 years later, although my shoulders have started becoming a problem again so may have to consider an automatic next time.
Had another try of driving today. At the moment moving from reverse to 1st gear is almost unbearable but fortunately you don't have to do that too much. I like the idea of shifting 2 gears at a time.
I had the same problem….but worked on the idea that a change is as good as a rest….so swapped from German to Japanese & I kept that Honda Civic for 20 years….when I then changed it for …..another Honda!.
Try to find the good side of life….don’t look at what happens to other people &. convince yourself it will happen to you, and certainly don’t read Dr Google’s horror stories.
There will be set backs..but no one’s life is perfect…with or without RA.
To a certain extent any serious disease is what you make of it.I admit In the early days I made mountains out of molehills over really silly things…like getting rid of all my sports gear that I had gathered ready to dress the part when I retired!
Sounds stupid now…but it really upset me at the time then….it felt like I was giving up.
So find a nice garage…or two …. & get them on the look out to get you a test drive in whatever car you fancy….it has got to be…..so don’t just think about it….do it while the sun is still shining!
I was looking into an automatic as my shoulder is so bad, but after investigations by my Rheumatologist, my shoulder problem turned out to be a rotator cuff tear, not actually related to my RA, even though I do get shoulder problems from that too. My rotator cuff still kills me even a year later, changing gears definitely exacerbates it, so I think I’ll look into an automatic at some point.
I’d be lost without my car, it really is my lifeline. Toot toot 🚗
I am wondering whether I have a plain old frozen shoulder. I had it in the opposite shoulder a few years back before all the other joints started creaking and it feels exactly the same. A steroid injection did the trick for that.
Maybe it’s worth looking into just in case? My Rheumatologist sent me for an ultrasound which confirmed her diagnosis of a rotator cuff injury. I drive 40 miles a day to and from work, there’s a lot of stopping and starting due to horrible traffic jams. As I work in education, I’m off now for the summer, and my shoulder is noticeably better already now I’m not changing gears every day.....my car is almost 20 years old, so the gears aren’t that smooth either 😖
I bought an auto car which is fabulous. Never thought I would but I absolutely love it. My business goal was to have a Porsche but the thought of the hilarity and indignity of getting in and out ended that dream so I have a rather more sedate BMW.
I did take steroids for almost 2 years. I couldn't function without them as couldn't walk, couldn't hold even a pen, couldn't dress so really there was no option. Felt like I was on speed and never got so much done in my life 🤣🤣🤣. I came off them when I went onto biologics and recently took them for a month as had a flare and was giving a talk to a load of podiatrists at their conference, then going on a cruise. Neither of which I could have done otherwise.
It's a long haul to finding what works for you but when you do, you'll be fine. Life may be a bit different, but you'll adapt and be fine. Promise!
You could get a Porsche SUV (which to me is an odd concept). Luckily I have an SUV because I'd not have been able to get in a normal saloon let alone drive one. I'm fortunate that I haven't got reduced hand movement/capability and I am learning to adapt with everything else with the added benefit of knowing that there are better treatments out there that will get me back to something resembling normality.
I wouldn't change your car yet unless you absolutely have to. I am a keen amateur wildlife photographer and changed my camera gear because it was all heavy and I could barely press the shutter, never mind hold my telephoto lens steady. I am more than happy with my new camera, but my lightweight telephoto is just not as good and after a year on sulfasalazine and a further year with mtx added I feel better than I had in 15 years, so am looking at buying a decent telephoto again (but I shall keep the lightweight one for when i flare).
I don't have amazing gear but I also like wildlife photography and find my camera a little heavy just now. My hands go numb quickly after trying to use it. Really hoping that improves too!
I definitely feel massively better and am really enjoying getting out with my camera again. Fingers crossed you will improve too - it really CAN happen xx
I was always asked to bring a urine sample to every appt in UK, and not once was it ever used/tested!!
Test were also included in monitoring, and very soon everyone got bored with requesting them as I always had some protein. It’s important for kidney function esp if taking lots of NSAIDS and PPIs.
Another vote for an automatic car - luckily we already had one before my diagnosis. Also, as AC says, water-based exercise is great - I love my Aquafit sessions and always feel better afterwards.
This disease is a mind player so you have to play the game withiN yourself as well as treatment and consultants etc.
However that’s a huge leap working from your desk again and one I am sure you will find so much better for your mindset.
Gearstick I went thro a phase of this but wore a support glove and for a while we had an automatic which helped. However when I do drive not as much now due to fatigue I find I cope for small Journeys but more than an hour and I get kickback!
Keep Pushing forward there are super tough days for some but mentally do anything that makes you feel good on those days even if it’s a piece of chocolate or a glass of wine x
Just remember chronic just means long lasting not worse. And the RA meds do work, it might take time but you'll get there. Be patient and treat yourself an automatic car is great with or without a sore shoulder. It was my left foot which caused me to change and I'm waiting for my new Jazz to arrive. Silver with a black roof, tail fin and a lot of gadgets on board. It's probably my last new car so I thought why not go for the girl racer look. Just a girl with hair to match the car. !x
Bet you never use all the gadgets!🤣I was looking thru the manual for my car I have had for a few years the other day, & I found all sorts of gizmos I never knew I had!
I never even read the 2000 page manual. I think back to when I learnt to drive when we had to use house hand signals out the window in case the lights failed. And steering wheels didn't adjust. And you had to turn the lights and windscreen wipers on. lol xx
I was only reading it to see how to eject a CD….never used it before….only listen to the radio….in the end I gave up & asked the garage….& as it was bxxxxxing obvious…thus confirming my stupidity!!
When the sales rep did the whirlwind tour of different functions it all seemed so simple. Now I keep pressing buttons to get cruise control, take my foot off the accelerator and slow down. There is supposed to be something that helps with braking on a hill too. All very handy I'm sure but it's more likely I'll have an accident trying to find the right sequence of buttons to push.😀
I. I know what you mean…on I think it was Gogglebox the other evening….they showed just that….someone distracted…looked up & they were heading straight at another speeding car…..the last shot was of a car sinking in deep water……very,very slowly.
As along as my car starts..I’m grateful & I don’t get over enthusiastic with gizmos!
So glad to read of your mindset shift Gottarelax 😊 what a great approach!On the swimming theme, We had a holiday in the UK when I was first diagnosed - swimming in the sea almost magically soothed my hot, painful joints and really cheered me up.
Very excited today as I’m collecting my new car, it’s a hybrid petrol electric car so my first automatic (not really relevant to a conversation about RA but so excited I’m telling everyone, sorry!)
Yeh and good things are always welcome. A new car is lovely, the smell is great and you choose the colour. The new Jazz is hybrid and can't wait to 1 September now. I let them have my old one to sell as they have a buyer for it so we now only have 1 car till then. Took it in this morning as then no need to tax or insure for a month. My old one was apparently really wanted as low milage , garage maintained and only 1 owner since new. So I hope whoever has bought it and they said it'll be gone after its valet tomorrow will love it as much as I did. I'm not mad in case anyone thinks letting it go early is silly as we've bought Honda's from the same family owned garage for over 30 years now so get friends and family discount and trust them. Seen the original owner pass the garage onto his son and daughter and now the grandchildren are all working there. Never quite sure how we go in for a service and come out having bought a new car. lol
When I was starting out on this journey 18 years ago, my first appointment was 4 hours long where I had x-rays and blood tests. The blood tests you’ve been asked for are standard, and these are still what they are asking for every 2/3 months for me. Mine sometimes ask for the ESR rate which checks the level of inflammation. I too had to take a urine sample to every appointment for the first few years. They are testing to see if you have protein in it.
I had a urine test at my first visit for suspected RA, I asked why. Doctor said autoimmune overlap diseases like lupus would require the urine test. Good luck!
All I can remember about my first apt is going from one department to another having to get undressed everywhere….which was agony….Luckily I was wearing a dress….so after the second undressing…I put all my other clothes in my thankfully large handbag..& just had to take off the dress & put on the hospital gown.
I have never been asked to do a urine test…. ever for RA apts….…maybe they think I don’t need to “go”?
It's been helpful that the weather has been warm. I wear a loose maxi dress with strappy top that is easy to get on and off if needed but gives easy access to all the joints. So far I've not had to take the dress off. Perhaps that's to save the eyes of the poor consultant 🤣
I haven’t ever had to disrobe like that first appointment again…in fact the Consultant Rheumy I saw only diagnosed what I actually had…he sent me to & fro for different tests….but no urine test, then when he got all the results, he referred
me on to the rheumatologist he thought most suitable to treat.
But this was back in around 1997, when there seemed to be plenty of rheumatologists in all grades.
It really worked out well & I stayed with that Consultant for about 12 years….I really think that continuity helped…not having to keep going over the same questions with different doctors.
Oh definitely, I think continuity of care is crucial, unless you’ve got someone awful and could do with a change 😂My Rheumatologist is great, she always calls me back within the day, or the next at the latest if I’ve got problems or questions with my medication even. If I’m having a flare she overbooks me into her clinic within the week, I might have to wait while I’m there, but it’s worth it.
She really is....after reading some of the ways patients are treated on here, I do appreciate her more as I know her clinics are over 3 trusts and she must be completely snowed under.Recently my ESR was over 100 for at least 6 months, she was worried, so sent me for an MRI and also referred me to a Consultant Haematologist just to check it wasn’t anything sinister, which it wasn’t thank goodness, just my good old RA 😂
I’m now getting divorced and may have to move away from the area to find a suitable property, so I will miss the excellent treatment I get at my local hospital that’s for sure.
I always think that your local health care service is a huge consideration when moving. For some a move will be a chance for improvement but for others a wrench and a worry too.
When I moved recently I jumped out of what I thought was a horrid frying pan of a GP practice only to find the one I moved to is ten times worse.Thankfully I rarely need to see a GP, & I happily drive further to see my rheumy team….who usually have an answer to any minor problems.
If I had anything serious the local Nuffield have a GP Service..I’d opt pay to see someone there…rather .than discuss whatever with a junior receptionist!
Your rheumatology team seem to be on top of things. I'm asked to take a urine sample at every rheumatology appointment in Edinburgh for routine screening and it is always checked. If I forget a dish is produced and I'm duly sent to the ladies.
It was the standard in the NHS years ago, urinalysis, pulse and BP at all outpatient appointments, not just rheumatology. We did pick up UTIs, hypertension and the odd heart arrhythmia. Simple, cheap and effective.
I changed to an automatic car several years ago and find it a great help, when I'm well I could change gear, but when in a flare it is a problem, so the automatic provides mobility without me having to think, can I change gear today ?
A good positive outlook is the best way forward, but in my opinion there is absolutely no point in being a warrior. Keep mobile, but take care of those inflammed joints, keep mentally active, but brain fog and fatigue will always win, rest is important too. Choose your social activities wisely, don't be afraid to say no. Be prepared for 'friends' and family not understanding your limitations and putting pressure on you to do things outside your ability. It is often easier to say no now than later, and easier to suggest things you can do.
I wear a fitbit and have it set to remind me to move every hour, I find it excellent when I'm stuck at home not feeling so good, as it is easy to let a couple of hours pass without moving. I also have an overall daily target of movement to meet.
As for steroids, you will find a strong vocalalisation on the forum against them.
But, they have given me and others on the forum some of our life back. I find them to be a fabulous relief for all my RA problems and I'm so glad that I took them. No other medication works anything like them and they are one of the few medications that I've taken that do not give me side effects (I'm now on DMARD 9).
I could write pages of the side effects that DMARDs have given me, but I don't....as I do not believe it is fair on others who might do well on them or others like yourself starting out with RA. So be a bit circumspect when listening to the downside of all meds, each to their own, what works for one does work for another.....your rheumatologist would not offer them if they were not an option. But....great if you can do without them, no point in taking medication that you can do without and much better for up and coming MRIs.
I agree with you Mmrr re the steroids when I first started I was on 10mg and couldn't handle them. I literally thought I was going crazy as I could not physically hold my head up. After my insistence they were dropped to 7.5mg and the difference was incredible. I actually felt I could function, I was then dropped to 5mg then I've been on 2.5mg for several years now. That's a manageable dose to me. I tried coming off them under guidance from my rhuemy having 1 every other day, immediately my feet and joints started to swell so had to go back on them.
I'm pleased steroids help you too. People are often quick to judge steroids without giving consideration to the fact that MTX is frankly an abomination for some of us. We all have our poison.
Glad you’re an advocate for steroids. Some on here hate them and that’s fine but they’re the only drugs which over 33 years of moderate/severe RA have worked consistently for me. Whatever I’ve had prescribed has stopped working after three years and so I get shifted onto the next potent set of chemicals which sometimes work well and sometimes poison me. I’ve had everything that’s ever been invented in the past and running through the lot of them have been the steroids at a dose of 7.5 mgs daily.
If I’d never been started on pred it may have been a different story but I had to have it as it was the only drug which stopped my incessant flaring when first diagnosed. I have never put weight on, have mild osteopenia and mild glaucoma and that’s it. If I had my way I would only be on pred as I don’t get all the odd side effects from all the other biologics, jaks blah, blah.
Am sick to death of taking pills, injecting myself and taking other drugs to mitigate the effects of the main ones! I know I need to but just one day of no pills would be on my bucket list!
Your story is my story too. Prednisolone and only prednisolone has the desired effect on reducing inflammation, despite injecting and swallowing a plethora of chemicals. Toficitinib was working ok ish, until I had my 3rd Covid vaccination when the efficacy dropped. Due any even remote interest from my rheumatologist I'm in the process of changing rheumatologists now, it will take months I've been told. Meanwhile prednisolone keeps me going.
I've seen the amazing transformation that steroids can make but I've also seen the negative impact of giving steroids on an assumed diagnosis rather than doing a full investigation. In my mum and sister's cases the assumption that they had PMR (with a very young onset) means that they are perpetually going on high (often 20mg but up to 60 mg at worst) doses and tapering back down only to develop symptoms after a few months. Being in that cycle for decades suggests that it was never PMR and has done so much damage. GPs insist on managing what they should send to a rheumatologist and then when a rheumatologist is involved, no two consultants appear to agree. I guess my experience of steroids is clouded by bad patient management.
I had steroid jabs the only time I didn't like them was when given as a treatment for my AKI and that is standard but at a very high dose. As far as I remember now it was something like 15 pills a day for nearly 3 months and the side effects were horrid. Moon face, a lot of weight gain and yet it had to be endured because an AKI is life threatening. It did take a long time to stop them but honestly the dose I had was huge compared to RA usage. In my opinion as the RA meds have worked I don't need them, but if I did I'd take them again without any worries.
Better to be inquisitive Gottarelax, then taking everything at face value and yes those other tests are fairly standard. My liver function reading is always shown as a little on the higher side, but that is usual for me. The blood test is standard as well and is usually done before a visit to your team or before an infusion to check there are no under lying infections.
All normal bloods, so don't worry there. I always take a urine sample to my Rheumy & nurse appointments. It's to check for infection, & has picked up something or other from time to time. One was klebsiella, a digestive tract bacterial infection which I’d not heard of before but those with compromised immune systems are prone to it apparently!
Do consider test driving an automatic. I resisted for too long but have had them ever since & wouldn't go back. So much easier on the legs, the clutch was making driving difficult, especially in slow moving traffic, ouch. We change ours every 3 years or so & have had 3 different makes, this time we returned to Mazdas & got a CX-5, so much better being higher up, both getting in & out & safety wise. Consider what you'd find necessary & research. Yes, they tend to be more expensive but it's practicality you need now. 🙄
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