Getting quite worried : So I’ve only just had my... - NRAS

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Getting quite worried

bubblyalex
bubblyalex

So I’ve only just had my diagnosis but everything and everyone around me has said that it’s ok to have RA these days and I’ll get back to normal now with treatment and it’s all going to get better from now on and so on.

Reading through the posts here and seeing the multiple meds many of you are having to take is making me wonder if I’m being led up the garden path by my doc and others. Ie this is a lot more serious and the journey is going to continue to have me relying on crutches and aides to be able to move. That the fatigue and pain is going to at the very least continue but perhaps get worse again with my meds being messed about. I don’t know what to think. Docs have made me think it’s all going to be rosy :(

101 Replies
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Welcome bubblyalex. I think what you have to remember is that all our RA journeys are different. Alot of people tend to use forums like this when they are struggling or haven’t yet found the meds that work for them. Those that have found the meds that work for them will be off living their lives. I can’t tell you it’ll all be rosy but it might and there are lots of really good meds around nowadays that your rheumy can prescribe for you.

NRAS do some good publications that you might find helpful if you haven’t seen them already

nras.org.uk/publications

Keep coming here to talk to us and ask any questions you may have, there’s lots of people here with many years experience of living with RA. I hope you find us useful 😊

bubblyalex
bubblyalex
in reply to KittyJ

Thank you Kitty that makes a lot of sense.

Well my life is normal and although under house arrest the RA is controlled with meds. Just remember there are a lot of medications but I take just one in my entire RA journey over years and years I've had three. Yes some people do take more but does it matter as long as they work either alone or in harmony with the others. So trust your doctor and give yourself a break and try not to worry. Read from reputable sources not Dr Google and be optimistic as it is true that the worst bit is behind you, once diagnosed things improve. Its a bit harder with the covid crisis at the moment but this is temporary and will pass. Things will get back to normal and treatment is not just imposed on you it is discussed. I'd suggest that you keep a diary of your daily difficulties too as it does help to focus when the symptoms are discussed.

I know I’m not alone in saying it’s been a scary journey so far. I’m very worried about side effects and somehow they have to get me off this 20mg dose of pred which I’ve been on since January. The MXT leaflet had me running for the hills scared so we’re not trying that one. Though this was prescribed prediagnosis by a consultant I wasn’t at all happy with ... who was convinced I didn’t have RA. She couldn’t have cared less about me back in Feb and hasn’t been in touch with me once since ... farming me off on a nurse who also couldn’t have cared less and equal lay hasn’t been in touch with me since either. I had zero confidence in anything they said. So second opinion was needed and went for diff hospital. Tried to drop the pred dose three times now and the pain and difficulty moving quickly ramped up again. So the consultant is planning on injecting my knees next Thursday and starting me on Sulfasalazine. Although I’m still on crutches big time I am at least pain managed and can do a few things ... like get up and walk with the crutches. I’m very scared about going backwards and back to hospital. My crp hit 285 back in feb. Ever since I was told this is RA on Monday I’ve been biting peoples heads off and feel like I’m heading back down into depression. I’m ok but not ok just want to hide away and my family is utterly useless... just like they were whilst the divorce was going on. I’m just so very very angry and disappointed. I want a time out please 🤔

Well to be frank you turned down the gold standard first line of treatment without giving it a go. So really what do you want there is no magic bullet and a friend of mine is an oncologist the MTX dose taken for RA is a minute amount compared to that used in chemotherapy. Prednisolone is a tapering off drug I also have CKD and went from 60mg a day to 0 but it took time so be patient its done by going down by 5's over fortnights then by 1's over weeks. You are understandably scared but should not be side effects will happen if you expect them too, sometimes because the imagination is powerful thing.

Try to be optimistic and I've never had Sulfasalazine but please give it a go, what have you got to loose and if it doesn't work then there will be other medications but MTX does work well for many people. It did not work for me but LEF did and now AZA. I've never had a crutch or even a walking stick as I can walk as well as ever I did. So one thing is sure if you don't have treatment you will get joint damage and could also have any number of other conditions linked to RA.

So don't disappear into a fog of misery but try to look forward to a new and improved life, never Google meds as yes they will scare you but if 10% get side effects then 90% don't and so statistically your liable to be in the 90%. It's really about risk do you want to risk being much worse than you are now, or give medications that are tried and tested and known to work to give you a better quality of life. If you want to move forward then only you can decide to go ahead. But it is worth achieving remission through medications and the only way I know I have RA is because I take a medication every day. Not really any different from swallowing a couple of paracetamol because I have a headache and paracetamol does kill too.

Brychni
Brychni
in reply to medway-lady

Good advice.x

The problem with the consultant giving me MXT was I had no diagnosis. She was just chucking pills at me without assessing me and without considering what my issue was. She didn’t think that I had RA or anything like that ... I spent two weeks in hospital but she didn’t come to see me once. The ward, orthopaedics my doctor... everyone was very cross and annoyed with her not seeing me. In the end I became her patient my default because everyone was saying this was inflammatory not infection and even then she didn’t come to see me. Even after the knee wash out and biopsies cleared me of infection she still didn’t come to see me. When I finally saw her (an outpatients app even though I was lying there in hosp) she tried telling me she had thought I had gone home and hadn’t realised. It was such bs because I know that the nurse in charge and ortho was calling her daily to try and chase her up to come and see me. Basically how was I to trust this woman and the meds she was giving me. When she gave me the meds which she didn’t think I needed... she tried saying they hadn’t done the histology test when I had my op ... this was a lie because my second opinion consultant was able to see them easily. Bottom line is I had zero faith in her and it only got worse since I came home so my gp referred me to a consultant at Southampton hosp. I didn’t turn MXT down really... it was I turned the consultant down. It’s been like Chalk and Cheese with this new consultant. She has been incredibly kind and thorough in assessing me albeit by phone. We’ve had 3 lengthy calls in one week. I will meet her next Thursday and she will examine me before going ahead with the treatment.

When I got home from hosp and saw my gp (who had been contacting the first consultant daily prior to my admission trying to get her to see me) he told me if I hadn’t been taken in to hospital he was going to make a complaint about her on my behalf. I really didn’t understand how ill I was at all.

Hessie5
Hessie5
in reply to medway-lady

Well put - untreated RA is not ideal. I can atest to that with joint damage that I now live with. When you find the right meds you have a better quality of life.

dawkin_S
dawkin_S
in reply to bubblyalex

I can tell you that I was scared of methotrexate too, but starting it was the best thing I did and I wish I'd done so earlier to save myself months of pain. I did get side effects at first but they have greatly improved - I just need to sleep for a few hours now about four hours after I've taken it. The consultant had to warn me of all the possible issues, but I've had no serious problems.

What Kitty J was saying is true - I never thought of signing up here previously as I've been pretty well controlled, and didn't feel the need for peer support. Covid-19 came along, so I came looking for info and ended up finding a great bunch of people and some real cameraderie and am very glad to be here now. :)

bubblyalex
bubblyalex
in reply to dawkin_S

That is so good to hear. This consultant at Southampton hosp says that they aren’t currently prescribing MXT because this COVID thing. And my gp says that Sulfasalazine is one of the two RA meds being put forward as possible treatment for the the COVID.

My consultant tried me with sulfasalzine for four weeks and then I was taken off. I had three types of skin reactions to this med. 18 months down the line I’m still with skin problems. Like you I’m scared of MTX but I’m able to hold back on meds as I’m not as serious as you.

Please do try the meds and keep a record of any side affects and the benefits.

And then you will see if they work for you

I have very very sensitive and dry skin... I wonder if this means I am more likely to suffer on this sulf then. 😏

I think I need to ask the consultant again about meds before I start any next week. I have severe asthma (which is happily very under control although I am on this 20mg pred) already and other things that made me very worried about MXT but frankly I’m worried about all of them potentially giving me other health problems. I don’t want to lose my hair either.

I have issues with my unsupportive family that have kicked off just now again big time and had a meltdown yesterday. My poor 17 yr old son is having to sit and watch me not coping well. I wish I could shut the world out and just try and deal with my own problems. Then I could be calmer. I think I might try the nurse helpline no?

There are thankfully very few Rheumatology consultants that are anything other than great and it is such a shame you came across one first time. Please do not be afraid of MTX (or any other drug suggested for you) - it has worked miracles for me and many others. The side effects are various but most people don't get them. As I sit here without access to a hairdresser my hair is beginning to resemble a bush - a little thinning would not be unwelcome at the moment.

I found the worst aspect of developing RA was the mental anguish of having to give up my life as it was planned. I was angry and way beyond distressed - all my future plans were in one instant rendered impossible. In fact, in an act of defiance when I was first diagnosed I got on a plane to stay with friends in France. The pain I suffered was only second to the anxiety I caused dearly loved friends and reality struck.

I hope you find the right medication for you and are soon feeling a lot better.

KittyJ
KittyJ
in reply to bubblyalex

Try not to dwell on and overthink the possible side effects bubblyalex. Don’t go looking for them, assume you will have none. All meds can have lists of possible side effects if you look them up, even ones you wouldn’t think twice about taking, paracetamol, ibuprofen. They have to list them even if only one person has ever had that reaction. I have eczema and very sensitive skin but I was fine on sulfasalazine and I’ve been taking methotrexate for 20 years and apart from nausea to start with I’ve been ok, no hair loss or thinning. You will have far worse long term problems and joint damage if you don’t get your RA under control. Keep in touch and let us know how you go x

bubblyalex
bubblyalex
in reply to KittyJ

Thank you. It did good to know a fellow eczema sufferer was ok with it.

charisma
charisma
in reply to bubblyalex

It is appalling that you have had such a poor start to getting proper care!

I hope you get started asap on a DMARD.

Methotrexate along with Hydroxychloroquine and tapering Prednisolone did get me to drug induced remission in 2016.

I had been unable to walk to the car, had to use wheelchair assistance to get me back to the UK from the USA; three agonising flights with only post surgery painkillers but I arrived and got urgent referral, as we should, and diagnosis within a few weeks too.

Prednisolone does not prevent joint damage. The sooner you are established on a DMARD or combination, the better.

Wishing you all the best on this journey with your new Rheumatologist.

I’d be inclined to get your GP to go ahead with a complaint re the first one!

Morigan
Morigan
in reply to bubblyalex

I have been on methotrexate for 3 years added sulfasalazine at some point too. Aggressive treatment to begin with but last year I was on very low dosage of both. Was freaking out about methotrexate at first but I had no side effect at all. Not even when I was on max dose of it. I have very sensitive and extremely dry skin had no additional problems with it because of the drugs. First year it seamed that drugs don't really work I was still struggling with all the symptoms for quite a while until I started feeling better. I was in remission for a year and a half. 6 weeks ago I have been told to stop all my meds because of corona virus and 4 weeks in I started feeling that my RA is coming back and to be honest thought of living in pain again is scarier than any drugs...

bubblyalex
bubblyalex
in reply to Morigan

Wow I’m surprised you were told to stop all drugs 😏 that sounds rough and especially when you were doing so well. Was that your consultants idea.

Morigan
Morigan
in reply to bubblyalex

Rheumatologists idea. She told me to stop methotrexate first coz I was doing well at the time and she wanted for me to try to carry on with sulfasalazine only. But once corona hit uk she called me and told me to stop sulfasalazine too.

bubblyalex
bubblyalex
in reply to Morigan

Unreal imo. See my other reply.

Oh Lord !!! The dr actually took you off of your medication for your severe RA 😳. I’m appalled ! My Rheumy and my pulmonologist told me to wear a face mask at all times when I leave the house. Avoid crowds, and to stay home as much as possible amid the covid pandemic.

I could not take the pain if I was taken off my Enbrel injections. Especially after all the MANY meds that I have tried w/o success. Enbrel has changed my life !! Yes, I was afraid to take it after I was warned about the serious side effects. But, I don’t look at the POSSIBLE side effects anymore !! I have a pain free life compared to the past life of laying in bed with a heating blanket all day and night and my husband had to help me do everything !! Now, I’m pain free, totally independent and I’m just thankful that I’m free from that excruciating pain that I was in from RA.

Don’t give up hope, bubblyalex, there is a medicine out there that WILL work for you. You just have to be patient, try each drug that is offered, take one day at a time, and see what works best for you.

Also, has your Rheumy shared with you that the meds take about 5 to six weeks before they truly kick in ? I took mtx and many other DMARDS, before Enbrel. All of which took just about 4 to 5 weeks to kick in and me feel the pain subsiding, until each one wore off or I had reactions to the meds.

I know the very frustration that you are feeling, the anger, the depression, the anxiety..... been right there, myself !

Hang in there !!!! There is HOPE !

Stuck around here, on this support website. It helps in so many ways.

We’re all in the same boat, and having someone to vent to and who truly understands is a true blessing !

We’re here for you😊

Thank you.

charisma
charisma
in reply to Morigan

Hi Morigan

None of us is supposed to stop meds due to the threat of COVID-19. I’m alarmed that someone told you to stop. It is supposed that uncontrolled IA disease, or recent flares, makes us even higher risk for severe illness from COVID-19.

Please check that advice out asap eg with Rheumatology or the excellent flow charts or video posted in the last few weeks by various people.x

Morigan
Morigan
in reply to charisma

My rheumatologist told me to stop all the meds as my blood results weren't great in March and I was in remission at the time. I was also told to contact my GP for steroid shot if I need it. I am not sure if I need it yet. As although some of my joints started hurting again. Pain comes and goes. I don't have fatigue or morning stiffness... So I am not that bad. Just a little bit anxious.

bubblyalex
bubblyalex
in reply to Morigan

I still think it is extraordinary to have stopped your meds cold turkey like this. If I was under control that would make me very nervous. I am learning not to understate the pain when I speak to the docs. It’s very easy to think it’s ok but reality is it really isn’t. With the nurse at my first place She was desperate to get me off or down the steroid dose. She asked me to go to 15mg (if you’re on 20mg your in the shielding group). She thinks I have reduced and that was the last and first time she ever spoke to me. She was frantic with calls to me that day. None of the promised follow ups happened with her or the consultant. They have zero interest in me or how I’m doing. Much like it was when I was at 285crp and in hospital. I’m getting gladder and gladder that I’ve ditched them. They are desperate to get us off pills with this covid thing and especially not on to steroid tablets I think it.

If your gp is any good I would get a telephone app with them and go through it all. You could do with this all being ‘managed’??

Morigan
Morigan
in reply to bubblyalex

Thanks for your reply. My rheumatologist was quite dismissive too as I tried questioning her on the phone when she told me to stop my meds she seemed rushed and just told me to speak with gp if I have a flare and need steroid shot. I'v never had steroid shot and in my understanding Steroids put us at higher risk so I am just putting it off.

It is probably a good idea to speak with my gp and see what she thinks...

bubblyalex
bubblyalex
in reply to Morigan

I think so. You might a new consultant. That isn’t at all fair of her.

Morigan
Morigan
in reply to bubblyalex

Thank you so much I wanted to help you to be less worried about taking methotrexate or sulfalazine but you ended up helping me more haha 🖤

bubblyalex
bubblyalex
in reply to Morigan

😁👍🏻

charisma
charisma
in reply to Morigan

Ah, that explains it.. I hope they are continuing to monitor blood.

Good luck with getting back to the point where you can continue meds, perhaps a change of drug to prevent adverse blood results, since remission is usually drug induced.

I think most of us are experiencing some anxiety with the current situation.

Morigan
Morigan
in reply to charisma

Nope they don't. They just told me to stop meds ask for steroid shot if I think I need it and see them in August :) but I will ask for blood test at my gp surgery just to see how I am doing.

charisma
charisma
in reply to Morigan

That is a long time to leave you on just steroid which does help tremendously in reducing swelling and inflammation (therefore pain) but does nothing to reduce damage.

However, research has shown that during drug induced remission damage begins to repair unless it is beyond repair.

At least a monthly blood test should be required at present, I’d think, but that depends on what was wrong with blood results eg if low neutrophils, that usually rights itself in a week or two and we can resume meds.

I had to that at intervals with high dose Methotrexate but still took the Hydroxychloroquine.

Good luck with GP next week!

Morigan
Morigan
in reply to charisma

It was low neutrophils and white blood cells . Originally she just wanted to stop methotrexate and leave me with sulfasalazine but once corona hit uk told me to stop that too.

Thank you so much! Your replies helped me a lot 🖤

charisma
charisma
in reply to Morigan

Glad it helped!

This video produced by Leeds Teaching hospitals is also very useful in showing us who should be shielding. I came out at high risk of severe illness if I get COVID-19, and duly received a shielding letter from Rheumatology.

This would be useful in helping your Rheumatology Dept clarify when to stop meds, and which ones as well as the conditions for various patients:

AgedCrone
AgedCrone
in reply to dawkin_S

When do you take your Mtx? I used to take it after dinner .....if I felt nauseous or had any other side effect.......I slept through it.

Happy5
Happy5
in reply to bubblyalex

Hello

All I'll add to the sound responses you have had on here is at first it is a bit of struggle till your regime settles in. First year is up & down.

When I first started my treatment I was very ill needed steroid injections in my knees as well as start MTX.

Your system has to get used to the meds , if at times you're not feeling too good talk to your RA team especially the nurses. They can tweak things to make it as best as possible.

Hang in things do improve and we mostly get on with life as usual.

:)

bubblyalex
bubblyalex
in reply to Happy5

Thank you Happy. It sounds like you may have been where I’m at ... it is only my knees that appear to have been hit by this. I have other things like costochondritis (so?) and have lived very well with RSI for 30 years which affect my arms and hands.

Sulfasalazine was the first DMARD I ever took, and it was marvellous. In 3 weeks I changed from a little old lady (I was 36) crawling on my hands and knees to a sprightly young mum rushing everywhere. I hope it works well for you. ❤️🌻

That is so good to hear thank you

I’m sorry I’ve come late to your post but sitting here reading that your CRP was 285 my heart goes out to you. My worst CRP has been 120 so you must’ve been in agonising pain and deserve huge support. My RA started nearly 30 years ago when I started to go for divorce. I think the stress of coping with my husband’s mental health and him refusing to get help was the trigger. Having family members who don’t support you just makes everything worse as well. I’m 67 now and I remember phoning the help line in desperation when I’d been so ill I could barely move. A lovely lady ( also with RA ) told me I’d probably never be as bad as I was . I thought she was fobbing me off but so far she’s been right

. I’ve had 5 consultants in all these years. 1 was excellent and his specialist nurse , another my present one is ok. The other 3 were truly awful . 2 nurses actually put their arms round me when the consultant left the room, one nurse saying,’ My dear you shouldn’t have to put up with being spoken to like that.’ I wish I had formally complained about him but I was in so much pain and struggling to look after my two young children and I didn’t have the energy. I spoke to my GP and he was supportive and changed my consultant to the excellent one. So please if you are not happy with your GP or consultant change. Life is too short and RA too painful to put up with uncaring drs.

Families you can’t change. My daughter is very supportive, my son much less so and it’s very hurtful. I never complain because I know it won’t help but to see his almost indifference to my struggles and yet to listen to him complaining about a sore muscle due to sport is hard. In my head I’m thinking,’I wish you could have one day of RA - it would do you good.’

I too have never wanted methotrexate and I haven’t . I’m on Sulphasalazine. It took a while to kick in so I was on naproxen too. What has helped me has been eating really healthily, reflexology and yoga. Life will get better and you will be happy again. People here understand and will give you great support.

Sending you a virtual hug from my garden in Kent.

Thank you so much. It’s been so hard to understand what’s happened and happening here. My crp is slowly going down with being on the steroids and naproxen. My knees are harder rocks again tonight but I’ve just taken the steroids with all the pain relief etc so this will ease a little and give me some sleep.

Hearing all of your stories... I am very glad to have changed consultants.

I’m sorry you have been diagnosed. Yes it’s frightening about the meds and the stories you’ve read on here are scary but there are far more success stories that aren’t on here.we share are concerns because mostly we are not doing ok and we each understand what the other is going through. When the medications work and this will take time finding the right/ combination is often trial and error people live relatively normal lives. Stay calm stress really does upset this disease. People on here are great and will help or just listen I know it’s really helped me.

bubblyalex
bubblyalex
in reply to J1707

I must admit I’m finding that really hard right now. 😏

J1707
J1707
in reply to bubblyalex

If nothing else this disease teaches patience.. I’ve never been so patient 😁😜

bubblyalex
bubblyalex
in reply to J1707

I can relate to that. I’m terribly impatient. 🙂

JFlay
JFlay
in reply to bubblyalex

We're all impatient, everything seems to take ages! waiting for rheumy appointments to come round, for them to ring back if you have a query, for the meds to start working etc. It's all a slow process but there is light at the end of the tunnel... eventually.

Recorder500L
Recorder500L
in reply to J1707

That point is so, so true. Take care.

I too am newly diagnosed and full of questions. I think if I were on crutches I'd take anything. RA will get progressively worse. If you've been badly informed by your consultant and the nurse then I would have a look at some RA websites which will inform about complications of uncontrolled inflammatory diseases: it's not just the joints, which is apparently what every one thinks, but heart and lungs too - and more.

I took a while to be persuaded to take hydroxychloroquine but my rheumatology nurse spelled out the consequences of not taking it very clearly and so I took it. 5 weeks on and reading about what other people have had to endure with RA and strong medication, hydroxy seems like child's play! the plan is that it will nip it in the bud although it seems to be quite rampant.

She warned me as had the consultant, that it would take ages to work but I wasn't worried about that as at the time I wasn't in much pain, but sod's law, I am now and the pain creeps up a bit every day. I wonder every day how bad it will be by the time the hydroxy kicks in.

Sometimes I drive myself nuts thinking (worrying) about it.

I'm full of questions but this is the place to ask them and to get a realisitc account of what it's like with an inflammatory arthritis.

Good luck - sometimes it's good to panic and question, it shows that you are taking it seriously and want the best for yourself.

bubblyalex
bubblyalex
in reply to Brychni

Should the pain be creeping up? That sounds like it isn’t right surely?

cass24
cass24
in reply to bubblyalex

Unfortunately once you've developed RA, it's not going to just "go away" and it's not at all unusual for the pain/symptoms to get progressively worse if/until you find the right meds for you and they start taking effect.

I started experiencing symptoms in November last year, was diagnosed in January and started MTX 12 weeks ago, and it's only in the last couple of weeks that I've really started to notice things getting a little better rather than steadily worse.

Like many (most?) people, I was reluctant to take any meds at first, and so scared of taking MTX that I nearly gave myself a panic attack for the first couple of weeks, but by that point I'd informed myself as much as I could and reconciled in my mind that it really was my best chance of getting on top of this thing.

If you read up the (possible) side effects of almost any drug, it's can be enough to put you off, and also being a chemo drug (albeit in much, much higher doses than used for RA), MTX has a worse reputation than many, but at least in my experience so far, the side effects really haven't been as bad as I feared and certainly a lot better than the alternative of trying to live with untreated RA.

My rheumy made one comment that I personally found particularly helpful, and that's that whatever drug(s) you decide to try, you can (almost) always stop them if you find the side effects are too much and/or they're not helping, but the sooner you start trying *something*, the sooner you're likely to find an option that works for you.

Good luck... and really hoping things start getting a little easier for you very soon.

bubblyalex
bubblyalex
in reply to cass24

Thank you

Brychni
Brychni
in reply to cass24

Well said. I think one of the main problems is that at diagnosis the long term damage of inflammatory is downplayed and not even mentioned. My father had CLLeukaemia and although it is a condition which sort of lies dormant for a long time, the reluctance of health staff to tell it like it is was really noticeable and although I understand it's to not panic patients, not knowing makes people panic even more. People generally know when they are being kept in the dark. the word 'arthritis' also doesn't help. People seem to think it's a bad knee or hip and I suspect a lot of those newly diagnosed think so too.

medway-lady
medway-lady
in reply to Brychni

I had blood clots due to RA no fun and very life threatening and was in hospital for a good while so it does make me cross when people just say that they are cured by diet or eating raw food or using a plan by somebody selling snack oil on the internet. We must be guided by our doctors and nurses and at the end of the day no one wants to take medicine its just some of us like me have to to lead a normal life.

I must admit I have found my friends irritating who say ... just drink this or eat that and you’ll be fine.

Just listen to your rheumatologist & with all the modern medication available the majority of us eventually get to a good place & just visit here occasionally.

The one thing you really do need is patience....it’s very rare to get prescribed the right drug the first time, but your reaction to your first medication points your rheumatologist in the right direction for what to prescribe next.

Don’t get me wrong...RA is a serious condition....but as I said most of us do get our life back....if in a slightly modified version....but forget crutches & walking aides...an electric can opener is much more useful!

I hope you soon find the drugs to suit you.

dawkin_S
dawkin_S
in reply to AgedCrone

That comment about tin openers rang true - you have no idea how happy my ring-pull can opening 'hook' made me when I found it in Morrisons! :D

Brychni
Brychni
in reply to dawkin_S

Tell me about it! In the last few weeks I approach every undoing screw motion with caution and find myself not being able to undo jars and the coffee maker. There is some pain but mainly no strength. It's like my batteries are running out. I also find lifting things at arm's length really difficult.

bubblyalex
bubblyalex
in reply to Brychni

Lifting is definitely also a challenge for me. I’ve been referred to physical rehab and they’re trying to help me with everything. They’re so kind... and not as scathing as the physio I was referred to by the doc. He was so dismissive of the deterioration despite all the effort I was putting in to try and get better from the fall. If only he had questioned it all sooner I might have not got so bad.

KittyJ
KittyJ
in reply to Brychni

I have a ‘v’ shaped jar opener fixed under my cabinet. It’s very easy to use and requires little strength.

NRS Healthcare Undo It Jar and Bottle Opener (Eligible for VAT relief in the UK) amazon.co.uk/dp/B00A8L3KSK/...

Brychni
Brychni
in reply to KittyJ

I'm looking into it!

My husband used to complain about me not being able to open jars or screw top bottles. Now in his 70s he has OA which affects his hands and complains that HE can't do it either. But of course he suffers much more than I ever have in 32 years. 🙄

😁

J1707
J1707
in reply to bubblyalex

I will try any drug I want to participate in life not let life pass me by inactive and in pain. I call it Rheumatoid disease because it’s so much more complicated than just Arthritis

Brychni
Brychni
in reply to J1707

I know it's been mentioned before but the 'arthritis' word really should be scrapped. I was trying to explain what I have to my aunt and also talking about how one of my friends who also doesn't drink or do late nights (she's the perfect buddy!) because she has MS. "Oh thank goodness you don't have that!" she almost shouted. I replied that my prospects were not much better and in fact my friend's condition is really well controlled and she has avoided disability (although she was walking with a stick for a while). I gave up trying to explain in the end.

As I said before I really think the lack of information at diagnosis is appalling. I have learned about the realities of inflammatory arthritis from the internet - only the best sources - but the internet nevertheless and I don't think that's right. I find bits of information here and there and once I put the pieces together I Googled 'life expectancy of people with RA' . Far from being freaked out, I feel I understand the nature of it more now and the more I understand the more in control I feel which, can surely only be a good thing?

J1707
J1707
in reply to Brychni

Yes most information I’ve had to hunt for myself. Leaflets from the clinic really don’t spell it out clearly enough

Brychni
Brychni
in reply to J1707

I'm not sure why they aren't more forthcoming. It seems so counterproductive.

charisma
charisma
in reply to Brychni

They are told ‘be positive.’. That is fair enough but only if they are also being real.

I'm just looking at a special offer on an electric grill now that I am long past handling heavy cast iron pans and need to accept that it's something that I used to be able to do...

I bought a grill “thingy” that can grill steaks in the microwave oven ......Great success...but I also bought an Air Fryer that is more trouble than it is worth ...you have to stand over the darned thing shaking the contents& adjusting the temperature.

It’s back in its box ready to go to the charity shop when they open!

I think my electric can opener is my favourite gadget ..... although on thinking about it ....the only tins I seem to. open are tins of tomatoes....& these days they usually have ring pulls!

Brychni
Brychni
in reply to AgedCrone

along with the Breville sandwhich toaster 🤣 my 15 year old wants one - if only I'd kept the one I never used in the 90s!!

You like the microwave thing? I've seen them but didn't know anyone who had one who could report their experience. I may well give it more thought.

I’ve got the MicroChef grill and I’m very happy with it.

I’m not a great steak eater but it does do a very nice steak and I also use it for fish. If you like cakes you can make muffins in it and I’ve also made a very nice Western omelette in it. There is quite a good recipe book with it.

It varies tremendously in price I paid about £35 for mine but you can pay up to £65 .......you just need to search around for when each company has it on special.

One thing to watch is the height of it ...you need quite a tall microwave to fit it in when you have the lid on.

Is it this one, please? (A number seem to have some variation on Micro Chef in the name.)

ebay.co.uk/i/153918105095

Yes it looks like it...haven’t still got the box.

But as I said do check your MW is tall enough...the handle on the lid only just fits in my MW.

Hi Bubblyalex,

It is normal to go through a period of coming to terms with RA or indeed any chronic illness. None of us can foresee the future.

To a large extent you can take charge of your RA, by researching beyond the specialist advice, listen to the specialists and read as many scientific studies as you can find. Then decide how YOU are going to manage your RA. It is a very individual journey and you will need to be flexible, in attitude as well as keeping your joints moving, because RA changes over time. Some people seem to manage to find the meds that work and remain on them for many years, others struggle more.

Beware of miracle cures - there are many who try to sell you them.

You will find the right path for you and your specialist team will be at your side.

Stay strong.

Stay safe

Thank you brushwork. Must admit I am really struggling.

That is normal, honestly.

It's almost like mourning, when coming to terms with a diagnosis that potentially alters your life forever. I remember going through a real struggle. I can't promise that it will be ok, but you will adjust and you will adapt in time. x

Hi bubblyalex,

First let me say I’m sorry that you’ve had to join our merry band but glad to welcome you aboard ship!!

Reading your other post you’ve been through a really tough 3-4 years. Stress cause inflammation and drives RA harder than it needs to be so I suggest one of the most proactive things you can do for yourself is reduce your stress response somehow.

Reading above it looks like your caught in the headlights, reacting rather than acting and somewhat in victim mode.... please I do not mean this in a put down critical way, it’s an observation only.

Proactive steps you can try to take:

Take stock of what real support you have, who can you truly start to trust as it is clear that your trust in others has taken a huge knock - make a note of how they do and can support right now and how you show appreciation for that support (a simple heart felt thank you and a genuine smile is all it takes sometimes). Would one of these support be appropriate to ask to come to medical appointments with you for support whist you get your bearings in all this?

Look up the ‘spoon theory’ butyoudontlooksick.com/arti... it’s a really helpful analogy around fatigue management.

Breath and try to slow the racing mind down - meditation is good for this and the link below is a good starting point - they are free and no unwanted emails etc smilingmind.com.au/

Make a list of proactive things you need to do as medical services open up - ask for referrals to podiatrist as they will look at feet and refer onto orthotics who will make insoles to help with feet/walking comfort. Ask for physio for knees etc. Occupational therapist will advise re hands and how to best protect the joints - things as simple as which hand to use to open a jar so you’re not pushing against the thumb joint.

Let dentist know of diagnosis and use of prednisone and possibly get Duraphat prescription (extra strength toothpaste to protect teeth and gums).

Reduce sugar in diet including hidden sugars (I.e. in beans) and eat as fresh as is possible because sugar creates inflammation. This is not a permanent arrangement if you don’t want it to be but right now your body needs your best effort to reduce the inflammation along side the meds that are helping with this.

There is no quick fix.... sorry! And you are your best soldier in this battle to stabilise things again so that, in the future, you can move forward again into a life you want. But you are wounded and need you to slowdown and be compassionate with yourself - go as far back to basics as you can with simple clean living so you can properly rest and regroup.

I truly hope that something in this response will help and encourage you.

All the best

Ali

bubblyalex
bubblyalex
in reply to Ali_H

This is so helpful thank you. You’re all giving me great advice. I need to break out of this and try to help myself. I think I very painfully need to block my father and brother out right now. They are just heaping stressful situations on me. Be safe

Ali_H
Ali_H
in reply to bubblyalex

You are one brave lady..... and we are here when ever you need us.

All the best

Ali

This is such a helpful reply, as someone who was also diagnosed this week, this is a great starting point. I love the idea of being proactive and making a practical list and also the tips around the impact of the stress system on inflammation. Thanks.

Hi Huckleberryfriend.... absolute fab name by the way! 🙂

Yes I’m aware that you are also just into your ‘journey’ ... sorry your posts seemed to have been when I’ve had one of my ‘click the like and no more’ - my way of staying engaged when my own energy levels are lower.

I am also aware that you’ve started methotrexate, this is my only med so hopefully it will work for you. When I first took it I took it with plain yoghurt or porridge and fresh ginger as I didn’t want the possible nausea. Once established at 20mg once a week it was suggested that I split the dose with 1/2 at breakfast and 1/2 at team time..... if you’re going to do this speak to you rheumy first and you must keep it within the day - go over into 2 days and you are courting serious consequences (sorry that’s a bit ‘heavy’ but true!). Drink loads of water as being hydrated helps - on all days of the week if possible but definitely the day before MTX day, on MTX day and the next day - this helps to keep some side effects at bay. You should have a folic acid prescription as well. I started on 5mg 3 days after MTX day but then went up to 5mg on day 3 and day 5. Some take folic acid every day except MTX day - if you’re not on every day except MTX day and you get side effects like unacceptable amount of hair loss it’s OK to ask your GP/rheumy for more often dosage.

It’s worth asking for a VitD blood test as low VitD is common and contributes to fatigue. But be aware that mtx will make you burn more easily so to get natural VitD be outside before 11am and after about 4pm in the summer other than that sunblock or cover up is a must.

If the med works for you 🤞🏼🤞🏼Please be aware that a med induced remission may not translate into a ‘non-med remission’. I am saying this because after 5 years of steadiness we tried to slowly reduce my MTX from 20mg and got as low as 12.5mg before the RA made its self known again.... I’m now on a steady 15mg a week and doing well (disappointed not to get to 10mg a week..... still don’t know why I decided that 10mg was my goal?!).

All the best

Ali

This is great to know - I've cut and pasted this into my notes :) I've got to get off the Pred before sliding into the MTX so it may be around three weeks ahead. I take high vit d supplements already as I've always had low vit d, despite being outside all the time! And I have hair loss already, I had patchy alopecia a couple of years back and now it's very thin, so this is a worry. I love that you are boundaried with the fatigue too, something I need to be firmer out with myself going forward 🤔

dawkin_S
dawkin_S
in reply to Ali_H

What an excellent reply Ali - so much great info in there.

I'll second the Duraphat idea too - it has made a huge difference for my dental health.

0h dear, sounds like you had the worst possible start to this disease! I do so hope for you that your new consultant/hospital will help you put that behind you.

Please don’t let fear of very unlikely things happening put you off trying drugs if they are suggested. That opens the door to the much more likely outcome of joint damage and the disease also attacking your internal organs or eyes. If a drug doesn’t suit you you can always stop taking it, it is your choice. I wouldn’t be without MTX now and would fight if anyone tried to take it away.....but the first day I took it I spent ages staring at the little yellow pills on the table quaking with fear. I also took sulphasalazine for a long time.

With both drugs the first couple of months were difficult, particularly sulpha which gave me a very explosive gut. But side effects wore off after a month or so and with sulpha the only long term effect was bright orange pee.🤭

Hidden
Hidden

It is a shock to hear that you have a chronic illness. Please remember that many on this forum have had the illness for over 20 years even over 50 years ie before the current range of medication was available. Medicine has advanced, someone diagnosed today can expect to have minimal, if any, permanent joint damage. Initially a trial and error approach but the medication best for you will be found. Some people do really well on the first medication offered, so hopefully you'll soon be feeling very much better. Your consultant has the key to your future health. Remember to relax because stress is a trigger for a flare.

medway-lady
medway-lady
in reply to Hidden

Chronic just means for a long time and acute means sudden so chronic is not really meaning it's any worse. An acute injury becomes a chronic condition. So don't please frighten anyone with medical term that doesn't mean its worse just means it is permeant or lasting a long time.

Bless you. It is very difficult especially when you are first diagnosed. I can only give you my story in a nutshell. I have had rheumatoid disease, as I call it because it is far more than arthritis, for eighteen years now. I am not going to pull the wool over your eyes. There is no point in doing that. I have had some very difficult times and a great deal of pain but it isn't all doom and gloom. I don't have a magic wand sadly and I don't know how you will go on in the future as we are all different but I do know that there are several things you can do to help yourself. A positive attitude is definitely necessary, taking your meds and having blood tests regularly are vital, contacting your rheumy team if you feel you can't cope, speaking to others who understand and being kind to yourself are all very important. I have been where you are now and my first thought was that I would get worse as time went on. I can tell you that 18 years on I am in medication induced remission and have been for a few years now. I do have flare ups and stiffness but I go linedancing, I garden, walk, play with my granddaughter. I can do most things but I know my limitations. I hope this is encouraging and that you are as fortunate as I am. Be positive. All the best. xx

AgedCrone
AgedCrone
in reply to Sheila_G

I so agree Sheila_G. If only people would believe there really is a good life to be had living with rheumatoid arthritis/disease..... & look forward to being well & not constantly worrying about regularly chopping and changing drugs to something that they hear has worked for somebody else.

Patience surely helps and believing that your rheumatologist genuinely wants to help is key to moving on.

I’m20+yrs diagnosed & I can honestly say I lead just as enjoyable a life as my peers.

I am on just one drug ...... with the odd painkiller when I get a niggle.

So please all the newly diagnosed don’t get downhearted ....you may be one of the lucky ones and find your particular drug regime very early, but if you aren’t- don’t despair because there are so many different drugs available these days there is bound to be one for you.

Thank you. It is so hard to grasp what’s going on so it’s good to hear positives.

Hi, I too got a diganosis this week (kind of) after very poor GP management since February. Someone on here said that they wouldn't offer the methrotrexate unless you they were sure about a diagnosis. Like you I've been on 20mg of prednisolone for over 4 weeks which they are tapering me off over the next three weeks. I have chosen to go onto Methotrexate, I'm not overly keen on the sideffects either! Normally I wouldn't even take a paracetomal 😂. However, this is about managing a potentially life changing illness and having asked others and done my research it's about balance of risk. And that is a very personal thing - it's always your choice at the end of the day. What I would say is that I would much rather be on that than the Pred at the moment, and finding a drug that limits my trips into hospital. My consultant went white when she found out the dose my GP had me on - in the current climate and with emerging evidence about the impact of long term high dose steroids and covid management, if you can, getting off prednisolone can only be a good thing. If the methotrexate/other drug choice doesn't work or there are side effects, then the meds will change. These early months, from what I can gather, can be trial and error but I have heard so many stories of people who have done very very very well on the methotrexate, however much they didn't want to take it. Good luck, I hope things get easier for you soon. x

I went onto methotrexate after hydroxy and sulphasalazine ...I took to it like a duck to water.... had no problems with it at all and lived as if I were RA free for seven years. One minor thing I did find Zwithnit, was I had a funny metallic taste in my mouth which a lot of people seem to have but I found mint sweets were all that was needed.

Sadly it just stopped working for no apparent reason. I then progressed on to a biologic drug which I have been on for four years and 20+ years on I really have no complaints.

So have patience & look forward to doing well on any medication you are prescribed ....very often anxiety about taking it is the problem .....not the drug!

When they get the meds sorted out to suit you then you can lead a reasonable life, but it won't reverse any damage that has been done. It might relieve you of most of your pain, but no one can promise you that you would be back to normal and carry on. Someone is leading you up the garden path. I have had RA for 18yrs and i am still suffering with pain from RA. Things change so your meds will need to be changed. xxxx

Hello, sorry to hear about your situation. I was diagnosed a couple of months ago and had a very negative attitude initially. I would work from home then just watch tv/ eat junk food. I was very into sport and felt like that had all been taken away from me in my 20s. About 2 weeks ago I had a complete change of mindset and decided to stop eating as much refined sugar and other rubbish, go on long walks and start lifting lighter weights again. I feel better than I’ve felt in a long time both mentally and physically and can start looking forward to the future again. The point I’m trying to make is a positive mindset can go a long way, everyones journey is different but sometimes we’ve just got to play the hand we were dealt. There are much worse things out there to get than RA.

To quote Walter White -

‘I have spent my whole life scared. Frightened of things that could happen; might happen; might not happen. 50 years I've spent like that. Finding myself awake at 3am. But you know what? Ever since my diagnosis, I sleep just fine. I came to realize it's that fear is the worst of it, that's the real enemy. So, get up, get out in the real world and you kick that b*****d as hard as you can, right in the teeth.’

Hi, and a warm welcome bubblyalex.

This is a great forum to be part of.

I was diagnosed in July 2019 and prescribed Sulfasalazine which I am still on.

I have been very fortunate and had no major side effects from Sulfasalazine, it has really helped me and up until recently was doing well. I am currently having a flare up so been feeling a little sorry for myself.

However with the ongoing support of my rheumatology team, GP, and people on this great forum I’m got my positive pants on again.

It is frightening reading some people’s experiences and I do count my blessings.

I went through and still are a little a bit of mourning stage. The unknown can be really scary at times.

All of journeys are very different and many of us also have other auto immune conditions and health issues which can impact too.

Building a good relationship with your rheumatologist and team if possible really helps and talking through concerns and asking questions too.

I have had a good experience with being on Sulfasalazine and I hope the same will happen for you.

It takes time for the medications to do their thing and finding the right medications for you is the key.

I have had times and still do of feeling very overwhelmed however there is so much support available to us. Be kind to yourself and one day at a time.

Do keep in touch with us won’t you? x

What I have been told is that if (once things are under control) things flare up ... I would need to contact the team and they would adjust things... is that not the case?

RA is very different in all of us. Some people have regular flare ups and others not. I am currently having a flare up myself hence the need for a short course of steroids but the steroids are to help me in my flare up and to give time for my increase in meds to take full effect as it can take up to three months. If you do have flare ups yes you would contact your team and they will adjust things. Our RA is very unique to us. It affects us all differently but you and your rheumatology team will work together to find what works best for you. Some times flare ups can last just hours and a few days and no need for any changes in meds but others can last longer and may need a review of meds. There are no set patterns with RA, different for us all x

A lot of excellent advice here bubblyalex.

I was diagnosed in 1969, just returning to work when our two children were 11 and 14. Being diagnosed with RD I knew my life was going to be entirely different. My son aged 11 turned to me and said 'Mum, you will get better, won't you' and I knew at that very moment that I had to make the most of my life, my husband's and the children's. I didn't drive at the time so found a driving instructor and she was amazing, who told me ways of driving that helped so much with the pain that I had. Because medication was not so good as it is now I have suffered a lot of joint damage to many of my joints. Like a lot of replies here - take the medication offered and see how it goes. I continued to work even taking full-time up until I was 65 and worked a few years after as Bank Staff for the NHS. (sit down posts). Sometimes my hubby had to drive me to work and collect me at the end of the day. Sometimes I couldn't go at all the pain was so bad, in 2008/09 I had to take a year out as the best I could do was eventually get up and sit in a chair. I took RD to be a challenge, I worked in a variety of different jobs with amazing understanding people who knew if I was suffering and would often bring me a cup of tea and a kind word. I tried really hard not to moan, my husband being the only one who would find me in tears.

Our two children have married and have two children each of their own who bring me the greatest of pleasure. I am so, so glad I met this RD challenge to my life full on and I am still meeting it. Involve your son in all this, mine would hang washing out and bring it in. They learnt to cook at a very young age, this helped them when they went to University. They would dust and put the hoover round.

You are in my thoughts, bubblyalex, I know it will not be easy but you can still have a life, albeit maybe different. Take care.

Hiya i too was very worried about mxt aftermy diag last April ,i was on 40mg steroids which made me lopey,more so than normal anyway. However take the plunge if u can im on 20mg tabs only 1 tired day 2 days after taking . No longer on steroids thankfully. Others meds added ,this is a long ish journey for us all. Keep asking on here for support as really help trust me. There will be light at end of the tunnel

Hi I apparently have a not normal behaving RA but still have flares which when they are bad are disabling. I too didn't want to go on Meds as well but have always take sulphazalizine from the start. I got put on methotrexate but after two tries they said my liver went so bad I couldn't have it again it is the gold standard. So back to sulphazalizine with an increased dose till the flares got bad again then onto biologic benepali which did great no issues at all for a long time then three viral episodes the worst being shingles so I came off it and went back to higher dose of sulphazalizine and for a little while OK bit upset tummy at times then the flares and pain came back so now back on benepalli but only taking once a fortnight and so far so good. Doctors are not gods nor are they always right my knee kept flaring the rheum doc kept aspirating I knew it wasn't rheumatoid it was different pain I insisted on a scan turned out in have a torn meniscus that was what was causing pain swelling doctors are human they can be wrong and some of them are down right horrid at times but stand up you are a human being and deserve to be treated as one me and my doc get on fine now she knows I am sensible and open to trying things be brave but also be real don't let anyone treat you badly

Hiya try not to over think the what ifs. Or what might. I wasn’t on this site at the start of my journey. So my advice would be yes read what we say. We are speaking from personal advice. But write a daily journal and keep emailing your rhemy department when I first started I was constantly messaging them with so many questions. As my nurse said they expect it when you new. I also joined arthritis.uk. Before I joined here. But my idea of my condition nowadays is completely different what it was then. So take everyday one step of a time. 🙂

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