I've recently been diagnosed by the GP with Rheumatoid arthritis. This was 2 weeks ago when I went with sore hands and my bloods came back with extremely elevated CRP. Since those 2 weeks I've now got 2 painful swollen knees, an ankle I can barely walk on & 2 hands and wrists that are weak,swollen and unable to make a fist.
I'm 27 (F) and my partner works full time I'm currently a stay at home mum to a just 2 year old girl and I've never found parenting so tough. I'm currently taking naproxen & paracetamol (with omeprazole to protect my stomach) and I have co codamol that I take before bed on the really bad days, just to relieve the pain so I can get 3/4 hours straight sleep rather than waking in pain every 40 minutes.
I see my consultant on the 28th and I'm just nervous and very anxious about my future. Everything I've read everywhere says how important it is to get early treatment and that methotrexate is the gold standard, but we were planning to TTC baby number 2 within the year so it seems pointless to take metho for 6months and then come off for 6 months and start something else. S im now stuck between asking for an alternate drug which is pregnancy friendly like Hydroxychloroquine, but if this isn't as effective then I'm worried ill be in pain for another year and that I'll be doing further damage to my joints.
I think I'm looking for some reassurance that maybe other people have achieved remission with a DMARD other than metho and whether or not I'm being totally stupid to ask for it and assume it would work. I need to be able to care for my daughter at the end of the day, that is my priority. My MIL is currently coming round every morning that my partner works just to get my daughter up,dresses and downstairs and she helps me out of bed and down the stairs. She stays while I take my painkillers and for around an hour afterwards until I feel able to use my hands and walk from living room to garden etc.
I'm sorry this is so long. I've just been holding it all inside and I just need to speak to anyone who understands as my partner doesn't get it, my friends keep telling me to be positive and rest and my parents are rather unsympathetic as my mum is bed bound with another condition and so I guess my illness doesn't seem worth worrying about in comparison.
thank you, If you've read all this and I hope your currently have a better day than me!
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Nelliekel
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I'm sorry to hear of your situation, it is a very uncertain and scary situation to be in, but you are not alone.
All of us on the forum have been in similar situations so we understand, the forum is very supportive and welcomes new people. You are very welcome.
Thankfully you are seeing a consultant rheumatologist soon, who will almost certainly carry out investigations to give you a diagnosis. But ..... this will take time.
Rheumatology moves very slowly...
Diagnosis of RA are not given out easily, there are many other diagnosis that could be causing your symptoms which the rheumatologist will want to rule out.
GPs cannot diagnose RA or any other rheumatological disease, so dare I be so bold to say that your GP has jumped the gun a bit here. She or he cannot diagnose RA.
When you see your consultant on 28th be sure to raise the issue of you having planned another baby soon as this may help shape treatment options. But I guess the main thing is to get you well and able to look after your wee daughter in the immediate future.
NRAS can offer much support, and have a wonderful helpline. I found them most supportive pre my diagnosis but suspected RA, so don't be afraid to call. Lines open Mon - Fri 0800 298 7650.
Please do post as often as you like and do let us know how your appointment goes on 28th ? NRAS can also offer advice on how to get the best out of your rheumatology appointments, which you may find helpful.
Thank you. It definitely helps to not feel so alone.Whilst I hope the rheumatologist diagnoses something different to RA I do have every symptom in the book so would be surprised, however I'll remain open minded!
You say rheumatology moves slowly, does this mean I won't potentially get a diagnoses or treatment on the 28th? I was hoping to be given something to help, I don't see how I can sustainability carry on for much longer.
Without a diagnoses would I still be able to ask for some steroids or something to help in the interim?
Does getting RA at 27 which seems young make a worse prognosis for me?
I so wish I could answer your questions, but only a rheumatologist can do that.Most people respond well to DMARDs, so the odds are in your favour that you will get a treatment that works well.
Many of us here on the forum have not been so fortunate so we hang around getting lots of support from others in a similar position. So please do not be put off by some of the stories you read here.
You have already had one really positive response from bpeal1....excellent...
Keep positive. I was a very late (now 72) starter with RA - my older brother, however, was like you in his early 20 when diagnosed. In the early years he found it hard to come to terms with as a young dad with 2 lads. His wife also found it hard to understand but after lots of research and talking to others he started managing the condition. He had to give up his career in the Australian Fire Brigade but went on to study industrial and employment law. I have no idea what meds he takes now and I'm not sure that any of my waffle will help but I guess what I am saying is stay positive - best of luck 🙏👍
15 years ago I was in a very similar position. My daughter was 18 month old and I desperately wanted a second child when RA struck. I can confirm I now have a very healthy 12 (nearly 13!) year old son. It wasn’t plain sailing but it can be done. I was extremely lucky to have a very supportive rheumatologist and between her and her registrar they got me through it. The initial plan was to start sulphasalazine and hydroxychloroquin and continue with diclofenac and stop this as soon as I got pregnant. Unfortunately I couldn’t tolerate hydroxychloroquine (which is very unusual) however, I did well on the sulphasalazine. There were other bumps a long the way (I’m happy to share more if you’d like!) but I got there in the end.
What I’m trying to say is it is possible so don’t give up hope. If the rheumatologist is not so sympathetic ask for a second opinion, phone or email the rheumatology secretaries and ask to be moved to a different consultants list. Good Luck!
Ask your GP for some oral steroids to tie you over. I had to do this as pain was awful. They are not something you should take all the time and can make you feel “cured” when first taking them and hyper but might be worth a chat and explain how much pain. The first GP said no but my actual GP said yes and with the words if they were in this much pain they would want the steroids. Prednisone is usually what is given. Worth asking
Support on here is huge and keep a diary as you might forget things pre seeing consultant.
Thank you. My GP said as it's only a 2 week wait to the consultant appointment that she doesn't want to give me steroids or the rheumatologist won't be able to see my issues as well.
I really feel for you. There’s nothing like people around you telling you to feel positive is there and it must be tough that your parents aren’t exactly sympathetic even though your mum is bed bound.
It’s good though that your MIL comes round and is helping you and knows how poorly you are at the moment - even if you’d far rather be doing all that yourself.
You will probably find that your consultant will prescribe steroids for you when you see him / her at the end of the month. I can see why your GP wants the consultant to see you at your worst.
I was given a three month tapering course of steroids when I saw my first rheumy - the idea being that if they worked then I would start hydroxychloroquine.
The steroids didn’t just work - I felt like superwoman. So you don’t want to see the consultant when steroids have kicked in and you feel good. Eventually I finished the steroids and still take hydroxychloroquine which keeps things at bay.
If it’s any help it might be worth thinking about how you are feeling before you see the consultant. I used to note down how things were - what hurts and how long it’s been bad etc - then the night before my appointment I used to write a list of bullet points and any questions I wanted to ask. Have to say, I kept it brief so that I didn’t overwhelm the doctor.
You’ve come to a good place to talk to people with similar conditions and who understand what life is like for you. So ((((Big hugs))))) and hopefully yu will have a good consultantation.
Thank you, I really hope I can get something at the first appointment! Would like to be able to do something this summer!
I don't think my friends really understand, they just think I'm miserable and don't want to go out because my foot hurts, they don't realise I'm also napping for 2 hours along with my toddler 😂
I'll make sure I have some notes ready for my appointment. Thank you
Yes prednisilone is what will help you in this current flared state. I was the same, knees like footballs, ankles, wrists, elbows, extremely pain and sleep was impossible.Long time to wait sadly.
Hang in there till your rheumy appt, you'll get quick relief hopefully with the steroids. Take photos of your swollen body too, I did just in case I needed proof of the state I was in.
Apologies for the delay in replying, had a busy day yesterday. Yes I did have extra care through my pregnancy but that’s not always necessary. The vast majority of people with RA that get pregnant go into remission during their pregnancy. However, unfortunately I did the opposite and flared when I became pregnant and then miscarried, I was also finding it difficult to get pregnant. The early pregnancy unit won’t do any tests until you’ve had 3 miscarriages but my rheumatologist wanted to investigate and ordered some blood tests. The blood tests showed that the RA was making my blood ‘sticky’, so when I was flaring it was getting worse causing the miscarriage. She put me on low dose aspirin to help counteract that and we agreed even though it isn’t licensed in pregnancy I would stay on sulphasalazine throughout. She said I was to let her know as soon as I knew I was pregnant. With the help of the aspirin I conceived the next month!
So because sulphasalazine isn’t licensed I was imeadiately referred to the obstetrician by my rheumatologist (the lady on the reception desk in the obstetrics department couldn’t understand why I didn’t have a pregnancy record and how I could be there without having seen a midwife first!🤣) and she also referred me to a haematologist because of my blood and the three of them shared my care throughout the pregnancy. I stayed on sulphasalazine throughout and had steroid injections as necessary to keep inflammation under control.
Fingers crossed you will be in the majority and naturally go into remission when you get pregnant.
Thank you! This is really interesting. I was on consultant led care for my last pregnancy too, but that was due to something called low papp-a so that might not happen next time round, but reassuring to hear about all the support if it's needed.
Yes I agree with that. I once went for review by my consultant when my GP had given me a steroid jab 2 weeks previously. He couldnt assess me properly then as my symptons were masked
Can I add to this that maybe you should stop the anti-inflammatories a couple of days before the appointment for the same reason. I know it sounds horrible, but it does have quite the impact on the team when you scream in pain as they squeeze your knuckles for the Disease activity score.....
Welcome to the group - you'll find lots of support and understanding here so do keep posting.The early days pre and post diagnosis can be scary but don't Google too much as you'll find mainly scare stories and mis-information; try to stick to a few well-respected resources like NRAS. Even on this forum you can get the impression that many are struggling but that's because it's a safe, supportive place to offload and there are many many more members doing really well and rarely posting. Try not to get any set ideas about medication and wait to discuss your options with the consultant; there are many options and although it can take time to find "your" regime, many find that life is good, although slightly different, with RA - if, indeed, that is what you have.
My GP did give me steroids to tide me over but only because my initial rheumatology consultation was delayed and I took plenty of photos of my joints before I took them to show to the rheumy; I also stopped them a few days a before the appointment but if you can manage without them until then, you might find the diagnosis process a bit quicker. A diary with symptoms is a good idea too and I would take photos in the unlikely event that your joints suddenly decide to behave on the day - it can happen! I was offered a steroid injection at my first appointment to tide me over until the medications kicked in which really helped. Hot and cold compresses can help as can gentle exercises to get things moving first thing in the morning; I do my hand and wrist exercises in the shower.
Thankyou! I do try to be as active as I can in the mornings, I love gardening so once I'm downstairs I do try to do a gentle walk round the garden whilst my daughter 'waters' the flowers for me. I also find being outside in the early morning quite therapeutic so will be sad when the weather turns.
I've taken plenty of photos luckily so hopefully even if the swelling goes down I'll have some evidence.
Easy for me to say but do try not to panic. Keep a diary, take photos of any swollen/red joints, stay away from Dr Google and be kind to yourself. You need to be honest with your consultant and tell him/her your plans for the future as they will have helped people in your position many times before. Oooh and on the day of your consult it would be a good idea to wear easy to remove clothes and, maybe, granny pants. Welcome to the forum, Nelliekel
My daughter might be 2, but I'm not going to lie I still live in the big black post party granny pants 😂 I think I need to treat myself to some new underwear before this appointment!
Aw bless you. I just popped ‘baby’ into NRAS website search. Came up with all sorts of articles that might be helpful.
There may be more, plus they have a helpline.
As for your RA more generally they will find a drug that works for you. We are fortunate living when we do. There are so many. It can be a bit of a trek to get to it but you will. You are seeing a consultant REALLY quickly so take heart plus IF you don’t get on with them you can ask to change. Most are great.
If you do have RA (by no means a certainty, auto-immune conditions are complex and overlapping) and you do need methotrexate you won't just be given it there and then. It's a toxic drug and you need to undergo an education session to teach you about taking it. I was started on hydroxychloroquine, which for some people can be quite effective.
When you go for your first appointment you will be sent for more in depth blood tests to help with an exact diagnosis.
If you want to get pregnant again that might cause a problem for delaying treatment - I understand that pregnancy can reduce symptoms for some people.
Whilst it's true that they are keen to get started with treatment early, that refers more to the fact that they used to wait up to five years until starting treatment with the stronger drugs (way back in the past). This is no longer the case. However a few weeks is unlikely to make a big difference to your long term prognosis.
Bless you and I'm sorry to hear you have RA and having to get your head around it. There are many modern drugs to try and your Consultant will be keen to get going. You need to be stabilized before thinking of another baby. You're young . Priority should be you and your health. Good luck and keep talking to those of us who understand. Maybe not pregnancy as I'm 75 😀
Thank you, I'm certainly in agreement that I need to get myself healthy first, just a big curveball compared to what I thought the next year would look like!
I know. Can I suggest you write yourself a list to run past your consultant . It's hard at the time trying to remember. Keep us informed on how it went
This is absolutely the worst bit! In a year’s time you will think back on these months with horror - and relief that it’s not longer like that. For the vast majority of people once settled on drugs a near normal life resumes. So please, please don’t overthink things. Only 10 days to your appointment, and while you may not be started on long term treatment immediately you should at least get some idea of an overall treatment strategy fir you.
Its quite a shock isn't it being told you have RA.
I've been diagnosed just over 2 years and to me I still feel like its all very new.
I know it's really over said but everyone's RA is different and responds differently to drugs. Really hope you find the medication that's best for you first time around.
On my first consultant rhematology appointment I was given a 2 week prescription of steroids to see if this would help and my arthritis was a temporary thing due to an infection or something (I'd been having mild symptoms for years prior so wasn't very likely) and it took a few more consultations to actually get a diagnosis so as others had said rhematology is really slow, the consultations, the drugs, everything so darn slow !
I really really had to dampen down my expectations, being told you have to give the drugs at least 3 months to work before they consider changing them was a huge eye opener for me. Really don't mean to be a downer 😉
I will say in the early days were the worst and things do get better, getting to see a consultant is half the battle. My daughter was 10 when I was diagnosed and I remember I couldn't look under her bed because I couldn't get on the floor, well that's changed 😃 Nothing is safe from me now !!
Going through this journey is only going to make you stronger, now things are bumpy but calmer times are coming.
If I could give advice I would say, dont overthink things
Be proactive with your treatment, research but don't think you know it all.
Thank you.I have a heat pad and am currently using it on my sore neck. It's the best thing ever only bought it a couple of days ago!
I might have to prepare for not TTC in the next year if things take time.
I am a planner and always have been my entire life, I get thrown off course when something unexpected crops up.
Does anyone know if you can ask the GP for a referral to a therapist? Is that something the NHS covers? Might be something I could benefit from after my appointment.
My rheumatologist team has a specialist therapist (im in Bristol) so yours might too.
Definitely ask, I found sorting my head out about it was half the battle.
I know it must be really hard to try and go with the flow if by nature you are a planner. I wouldn't throw any of those plans away, honestly some medications do work really well, you don't known whats going to happen.
Its hard to imagine feeling ok when you are in this amount of pain, it's not like this all the time I promise x
Maybe look at the first step and not the whole staircase
Oh man that sounds so cheesey, you have permission to slap me lol
If you are a planner then put your planning mind to preparing a short bullet point list for your first appointment, and not charting the hundreds of unknown variables in the future. Eg:
Symptom onset and development
Current symptoms
When is it worst/best (morning/ evening, at rest or with movement)
Bless you. This is a very worrying time for you but firstly I must say that a GP can't diagnose rheumatoid arthritis. GP has done the right thing by referring you and you have got an early appointment so that is good. You are in the system now and your rheumatologist and team are there to do the best they can to help you to live a normal life, as painfree as possible. It is very difficult for you as you are so young and have a young child and want to increase your family. Please try not to worry. Your situation will be taken into account and a package of care will be built for you personally. There are many medications used for RA and other autoimmune diseases. Please try not to worry as stress will definitely make matters worse. I know this isn't easy but there is light at the end of the tunnel. Rest when you can, be positive and only read what makes you feel better. You will read lots of doom and gloom stories on here, I suggest that you filter that information. Once you have been diagnosed and start to accept your condition you will find ways to cope and change your usual way of life for to suit your situation. NRAS have many people to speak to you. You can ring for a talk with someone who can give you all the information you need to know and will give you as much time as you need. We have all cried on the phone so don't worry if you get upset and they are very sympathetic and practical with their advice. Feel free to say whatever makes you feel better on this site. You are not alone, we are here to help you. Write down anything you want to ask your Rheumatologist and take someone with you if that would help. It is easy to forget when you are nervous and unsure. Sending love and hugs.
Oh gosh, so sorry to hear your story. It’s a difficult time for you and a lot to come to terms with. I’m happy to chat with you, if you’d like to private message me.
Hi I was diagnosed by my doctor with same as you very elevated bloods luckily one of my clients a rheumatologist nurse she recommended going private which I did saw a rheumatologist in days who then got me in with him straight away on nhs then had a depo steroid injection to help till starting medication talk to them about pregnancy Take care love jane
Good morning . Just wanted to say hello and welcome and good luck with your appointment. This site is truly a life saver at the beginning when it’s an absolute minefield .It’s difficult with small children but it may help to think that she won’t remember any of this period with being so young . When I was diagnosed I remember them asking me if I planned on any more children etc so I imagine it’s a normal thing to discuss at the beginning if you’re in the right age group . I can still hear my partners sigh of huge relief when I said no 😊
You poor soul, a lot to contend with, especially with a toddler. Good that your MIL is supportive. As others have said GPS can’t diagnose RA, and needs to be left to the rheumatologist. You’d be surprised the number of illnesses with similar symptoms. I have ankylosing spondylitis, which predominantly affects the spine, but can affect other joints. I have it in most joints except elbows and wrists. My kneecaps and 2 toes are partially dislocated due to my tendons calcifying and pulling things out of alignment. However to some because it involves my fingers and toes they assumed RA. It is right for your GP to hold off steroids as they will mask symptoms. Your rheumatologist may prescribe some to tide you over whilst they investigate with further blood tests and scans. They usually ask you to hold off on the steroids till your bloods have been taken, as they will affect inflammatory markers, and mask results. The good thing is you are in the system, and you will certainly be on a path to getting a better quality of life. If your booked for scans hold off anything that is anti inflammatory, except possibly steroids as they shouldn’t be stopped suddenly once your taking for more than 3 weeks. Think about what makes your symptoms better or worse, perhaps enquire with your parents if there is any history of autoimmune diseases in the family, as they are likely to ask that. This includes psoriasis, inflammatory bowel disease, as well as the many joint conditions. Even uveitis of the eye, can give clues to what’s the cause. Good luck, not long to wait thankfully 🤗
Hi, Nelliekel, welcome to the forum. The only thing I can advise is to ring the NRAS help line on 0800 298 7650. A helpful, knowledgeable and sympathetic lot of people. If they can't help you directly, they very likely know who can. All the best.
Hi Nelliekel, the beginning when you are diagnosed with RA is painful and frightening. I was diagnosed when I was 42 and am now 71 so I have lived with it for 30 years and I have to say that the leaps forward in medication have been amazing. I speak as someone who is now on biologics for the last 6 years and they have transformed my life - sure I still get frustrated, my wrists are fused, my hands don't work terribly well, I have had a shoulder replacement but I am pain free and lead an active life. Your rheumatologist will guide you through it all and help you to plan your pregnancy. It's not all bad news even though it seems like it at the moment. Good luck!
Hiya Nelliekel. Just wanted to welcome you. You've had lots of info to be going on with so just to say ask us anything you need as it crops up, nothing is too bizarre here, we've probably heard it all! We've a wealth of experience between us, nothing like first hand ones, we get it.
Excellent to hear you have a Rheumy appointment so soon. It may have been mentioned but DMARDs aren't quick acting (usually around 12 weeks though some benefit may be felt prior) so often a short course of steroids are prescribed as a bridging med once you receive your confirmed diagnosis. You'll hopefully receive relief from those until the DMARD thought best for you is fully working. The important thing just now is to get a hold of it & dampen down your overactive immune system to delay & reduce joint issues in the future.
You sound as though you've done your homework which is good to hear. As well as the NRAS helpline there is the website too so if you feel up to it have a read nras.org.uk
Note my diagnosis is Stills Disease which manifests as RD for me.Diagnosed 1979 aged 17 now 60 and drug free since my mid 20s apart from otc pain relief. I am lucky that my Stills Disease was Mono-phasic although chronic with lasting joint stiffness, pain and disability.
Diagnosis changed the course of my life completely but the good news is that I lived a full life with a successful job, two sons, driving and even the gym. So there is hope and 40 years ago my consultant said he didn’t know how pregnancy would affect the disease but I was fine on both occasions. Have Hope, adapt, feel positive and live within what your body allows.
Sorry to hear you are going through the same pain as a lot of us. I was diagnosed at 32 (F), so quite young too. I started on hydroxychloroquine as we were hoping to start a family in the near future. After around three months (that's about how long DMARD's take to work usually), I was pain free for a few years after that. I have since had to add sulphasalazine and Methotrexate. Things do get better, just need to have a bit of patience. I know it must be really hard with a young child too, but good your Mother in Law is helping. Hopefully your partner will understand soon the amount of pain you are in, but keep talking to him & try & explain how you feel. Having another child is possible. We decided on only having one but not just because of my RA, I also have type 2 diabetes which is a risk and we had a few issues when he was born so we decided to stick with one. A friend also has RA and she has successfully had two children.
Once you are in the rheumatology loop…speak to your allotted rheumy nurse….she will have encountered your situation many times.From what I have read on here…many members have been in your position & gone on to have an easy pregnancy & delivered a healthy baby….also that their RA seemed to go in to remission during the pregnancy.
Hi, I too was young (and still am) and am of child baring age when diagnosed.
You will be ok
Firstly on your appointment you can get a steroid injection which will help short term while the drugs get time to start working. So make sure you say how much pain you are in at the appointment. It’s not a long term fix but will help sort term
I have never been on methotrexate if that helps you. I am on sulfasalazine and did try hydroxie but I was dizzy on it.
Sulfasalazine worked for about a year but then the pain started to creep back in so now managed on a biologic which makes the fatigue and pain so much better.
Hi,the best and quickest solution for your pain would be prednisolone steroid tabs.Get your doctor to prescribe it to tide you over till you see the consultant who will then sort your medication regime.
I am surprised the doc did not do that given the pain.it can be a solution which can offer miraculous short term pain relief.
I would think it's most likely Nelliekel wasn't offered steroids prior to formal diagnosis as they'd mask her symptoms as she's in a similar position to me & fortunate to be referred promptly & has received a very quick diagnostic appointment with a Rheumy. My GP asked me to stop the NSAID & pain relief she prescribed a couple of days before my diagnostic appointment though so I was drug free & presented at my worst. Only another 10 days, which I know can seem a lifetime when in pain, but hopefully it will lead to a correct diagnosis & the most appropriate med regime.
Thank you everyone! I appreciate every comment of reassurance and advice.
Should I come off the naproxen before my appointment in case they do scans that day? I'm not sure how much it's doing for the pain anyway, I don't seem to notice a difference until I take the Co codamol.
I also don't like the idea of being on NSAIDS for over a month, even with the omeprazole.
My GP asked me to stop both a couple of days prior so they'd be out of my system. You could ask if your GP thinks you should, the co-co's too. We can't advise on meds I'm afraid only share experiences, so can't say if you should stop or not. It does make good sense to be med free though, then you are seen, examined & have imaging at your best worst!
Don't be surprised if you remain on naproxen, or alternate NSAID. They often form part of your long term treatment as it's important to keep inflammation (& pain!) as low as possible, the aim of DMARDs but they often need extra help. You will obviously remain on omeprazole (or other PPI) if you do. I was diagnosed in 2008 & have always had a prescribed NSAID, currently on my 6th I think but I have been it a long while now so found the best working one for me.
You poor dear 😢❣️ things must be horrendous for you, ask if perhaps Prednisolone would help you. When I was diagnosed I was put on it, and within 5 days I could move around easier and less pain. Good luck with Rheumatology appt 🌈
I feel for you and all people who have small children it must be so difficult.I have had RA for over 20 years and never been in remission but other people have.When i started this journey of RA when i got my first appointment my hubby phoned up and told them they had made a mistake and put the wrong year down but told that was correct but my doctor kept on to get me a earlier appointment as i was in a bit of a state.Hope you feel better soon x
This is the right form where you could share your feelings ,emotions ,your doubts and fears because most of us could feel and understand .No body could tell you exactly about what what will you face in coming days but could support you to bring your stress level down because at that moment you need to express your self as much as you could and in return get lots of encouragement and support through words .Many have been said a lot so said you are not not alone I have also gone through this situation and know your pain .I hope you receive best treatment ti control your disease and best support and understanding from your partner .Best wishes for you princesses and whole family
Just logged onto the NHS app to check my appointment date and time and realised that my blood tests from the GP were all uploaded. Everything is high 🙈 ESR 40 and should be less than 30, CRP should be 0-10 and mines 103 and the anti CCP which should be less than 5 is 73. It says under that one that it supports a clinical diagnosis of RA. So.... at least I know what's coming when I see the consultant.On top of that, all my full blood test is completely out of whack and I think it looks anaemic so need to discuss this too. Oh dear, I'm falling apart 😅
Tbh, it's probably better that your blood tests are clear although the rheumy will still have various questions for you; from what I've read on here, it can be harder to get a diagnosis when you're sero-negative. My anti CCP was over 340, I think....
Thank you! Wow really high. I think I was just a bit in denial and then seeing the results has kind of made me sit up and think oh, I'm actually ill, if that makes sense.
Getting your head round it all can be tricky but try not to overthink (easier said than done, I know) as your mind will always take you down the dark path if you let it; try to wait until you have your appointment and get the facts rather than imaging all the possible scenarios. I tried to avoid researching as much as possible and didn't read up on any of my medications, just listened to what the nurse advised and went from there. I only found this forum after I'd started treatment and although I find it a great place, I was almost glad that I hadn't read other people's experiences on my medication before trying it as I didn't anticipate any possible problems/side effects; for me personally, blind optimism is the best way! 😂
Morning. Sorry to hear this. I would recommend contacting your GP for an IAPTS referral. It will do you good to have some external support from a Counsellor. There are always waiting lists, so this is not a ‘quick fix’. It takes a few years to get your head around everything, so try and get as much support as you can. Day at a time, and don’t beat yourself up. Take care xxx
When I was diagnosed, and about to start on Methotrexate I was asked if I wanted my eggs frozen. This may be another option? Only you know what’s best for you, and your head will be very full atm. Lists are very good for sorting your head out. Pros/ Cons etc.
Consultant appointment today. Diagnoses of RA confirmed. He confirmed swelling in both ankles, wrists, knees, hands and feet.
Being started on 200mg of Hydroxychloroquine today & awaiting an appointment with a nurse to start methotrexate.
Feeling very overwhelmed. Appointment was at 9.15am, left consultant's office at 10am, had a steroid injection in my bottom then sat in the waiting room for 15 minutes, went and handed my prescription into hospital pharmacy & went and had my blood tests done. Left the hospital at 12.
Waiting for x Ray appointments for lungs and joints, appointment for the nurse for methotrexate, and another to try and drain some fluid from my knee and inject a steroid into it.
Also. I've booked an eye test for the hydroxychloroquine.
Phew. Didn't ideally want methotrexate as wanted to TTC baby 2, but being realistic I suppose I need to sort myself out first.
That sounds like a positive diagnostic appointment Nelliekel. It is a lot to take in. Were you able to make notes or did someone attend with you so you can discuss the appointment? I think you can only get everything settled first re starting MTX & then broach the subject once everything's dampened down or thereabouts. Till then the steroid injection will hopefully give relief until your DMARD(s) are fully working. You've been started on the lowest dose HCQ, it can be doubled if needed (max dose 400mg daily) so that's good.
It might be an idea to copy your update & start a new post, more will see it that way & respond.
I would say welcome to the club but none of us wish to be a member! I suppose I’m just pleased you've not had any delay & starting treatment now, best way to avoid potential problems in the future.
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Advice please...
Advice please on asking rheumy to stop MTHX
Feeling lost 
RA
Swelling that isn' in a joint
