I am feeling at a bit confused, new to this adventure and feeling lost. Have been taking Hydroxychloroquine since early May. Not sure if it has helped or not. I know it can take a while, not been pain free but for a while during summer felt a bit more mobile, more active. GP px'd co-codamol for me , I don't normally do pain killers. Even taking full doses it didn't really help much. Asked GP for help changed prescription to 15/500 co-codamol, helps to get me off to sleep, but sleep still disturbed due to pain. I don't feel any better right now , maybe bit worse. The telephone review on Monday is to review meds, Rheumy had said it's to check if Hydroxy is working and if not would offer Sulfasalazine. I honestly don't know what to say. I don't even know why I am posting this, just thought someone may have some wise words that will help
Rheumy telephone review Monday pm: I am feeling at a... - NRAS
Rheumy telephone review Monday pm
Hi
I’m fairly new to this too, I take hydroxy too..
It is at times difficult to say but what I will say is the rheumy dept I'm sure will know what to ask to find out how they feel you are doing.
I know what you mean about being unsure I can be similar I started them in August and some days feel like the stiffness pain etc is improved others not so much. You are not alone …as long as you tell them exactly how you feel and what’s happening they will I’m sure make suggestions. Write down any questions you wish to ask because if you’re anything like me I forget. They told me it could take 3 to 6 months to begin to work on some days my stiffness doesn’t last as long in the mornings..but I guess it’s early days for me. Keep a note if you can each day how you are …it does help if you can …
It’s a good forum here lots of members who have experienced RA for many years and although we are all individual and different they have lots of experiences …
You will be fine on the call they will guide you im sure..
If you get chance and feel up to it let us know how it goes 🤗
Let's hope we both get our Golden Ticket so to speak, so long as we get there, eventually. I have spent years waiting till I had more time to be my creative self , create, draw, paint build now I have more time I can't , but I hope I have time to learn to adapt so I can again, one day.
It’s always difficul in the beginning…you have only been diagnosed for a few months & it’s all so unexpected. I’m sure when your rheumy sees your blood test results he will be able to see if the Hydroxy is helping….or if a move to Sulphasalazine or another Dmard is the next step.
Don’t feel disheartened…your rheumy is the one to make the decisions for you to follow & hopefully start to get some relief. Apart from taking the meds advised…there really are no short cuts.
It is tough…..but unless a particular med is making you feel really dreadful…. do try to persevere…& hopefully you will wake up one morning to find the aches and pains really are a bit less severe.
Unfortunately it can be a long journey…..but the majority of us get there in the end …but only by sticking to rheumy’s suggestions …even though it sometimes feels as if you are getting nowhere.
Don’t even try to work out what you should take,& definitely don’t think because you read XYZ worked really well for somebody …. that’s what you need.
I read with wonder how some drugs are tolerated for years by some people…when I found them awful to take. ..it really is a skilled job for your rheumy to prescribe the right meds ..I do hope your phone consult gets you moved to something that is just what you need.
Good Luck.
At the moment, not a confirmed diagnosis but at least they are trying to help. I was reassured that although initial bloods showed low levels so seronegative, they did say that doesn't mean it isn't RA as upto 25% can be seronegative. Obviously we would all rather not have it but if we do then getting the best help is the way forward.
I was diagnosed 20 years ago and I’ve been most medications since then, with varying degrees of success, including 3 biologics. I was put on hydroxychloroquine last December and it worked after about three weeks. Unfortunately I had to come off it because I also take a prophylactic antibiotic to prevent chest infections and you can’t take both at the same time. I took Hydroxychloroquine with Methotrexate and folic acid. Now I’m on mtx, folic acid and a biologic, Cimzia and they seem to be working. I hope you get things sorted.
A few times in the last couple of years I have been convinced I had a chest infection, not producing sputum, gunk , but breathless and my chest hurts. I tried to explain to the GP that it actually feels like my lungs and ribs ache, but then when I insisted last time, earlier this year on a chest x-ray it was apparently clear, well no consolidation. Can RA affect ribcage/chest? Just wondering.
It could be associated with RA…but don’t Pfaff about guessing…..explain your symptoms to your rheumatologist & take it from there.
We all get odd aches & pains & often blame them on this disease when in fact it is just a good old fashioned pain that anyone can experience.
Yes , I'll write a little list and try to remember to bring it up in call. Had episodes of this a few times over the years. Once years ago ended up with inhalers for Stress induced asthma , Gp said the pain was probably a cracked rib from coughing took months to get any relief. worse than childbirth 😢
do some descriptive words to explain what you are feeling. It does take time my first 2.5yrs went thro 4 medications due to things needing to be tweaked. Sleep is a huge factor and one you can mention but I dealt with it via my GP as easier.
I have never been pain free BUT I have learnt to live with it And I do pain medication but also distraction as well on bad days ie diamond painting or sorting the local gnomes out ie painting them!
There is no set time for things to settle or remission it’s RA and it’s a tricky bugger 🥰
You need to tell them you're not ok. You don't get a prize for putting up with the pain and there is no point sugar coating it for the medical team.
Tell them you aren't sleeping right and that you're sore.
I understand that you don't want to have to need more medication but the sooner you get this into a remission the better.
Good luck with the phone call
I agree 😃 I'm basically pain-free now after a couple of years of medication additions/tweaks and am even able to start reducing doses a little with my rheumy's help. I rarely take pain medication so it can be done if you're one of the lucky ones - hope that you are too! Definitely need to be honest with your rheumy and politely ask if they can help you to improve further.
I can't remember what being pain free is like. 🙈 Your giving me hope that it's a possibility
With you on that. Its the relentlessness that gets me. Wake up in pain, have the day in pain, go to bed and wake up frequently because of pain. I have seronegative arthritis, osteoarthritis and fibro. On meds in painkillers but it never goes away.
Sorry what is seronegative arthritis, and how is that determined?
Hello arvineIm sure others can give a better or more accurate reply, as I am pretty new to all this!
Here goes... Rheumatoid arthritis can mostly be confirmed with checking symptoms and using blood tests, one of which is Rheumatoid Factor. The RF results can confirm a person has rheumatoid arthritis, or can be known as seropositive rheumatoid arthritis.
There are a minority ( approx 15% ?) where the RF factor result does not show as positive. However, the symptoms, which ( as in my case ) can be also confirmed with scans, xrays and other blood tests which a rheumatologist would confirm as the patient as being diagnosed with seronegative inflammatory arthritis.
Just to complicate matters, it does not always indicate Rheumatoid arthritis, it could be something like psoriatic arthritis or reactive arthritis. Am not certain if I will ever know what type I have. Medications are the same as with positive patients.
Hope this helps or someone else may jump in with a better explanation.
Thank You for the wise words. I have always been reticent to ask for help, to admit I'm struggling. Spent my whole life hiding in plain sight, constantly told how confident I appeared, how positive my attitude is. Trouble is when you eventually let your guard down and tell it how it is , no one believes you. Spent years telling people to be open, to ask for help (RMN) but couldn't stop masking myself. I'm going to try harder to drop the mask, bit easier over the phone as there's no body language to decipher, and state my case.
I think we're all the same pretending we are ok when a blind person could see we aren't. I break down in tears even thinking about admitting I'm not ok. Like you say it's much easier to tell others to seek help, be open etc than it is to do it yourself.
I have ankylosing spondylitis as opposed to RA, but ribs are one of my worst areas. My ribs are fused and have only got a chest expansion of 0.8cm. It means I feel breathless easily, especially when lying fiat. Although AS mainly affects the spine, it can affect other joints. It has resulted in my kneecaps being subluxed, as well as toes, which required surgery, and waiting for further foot surgery. It also affects my shoulders, elbows, hands and jaw. If you don’t have a set diagnosis, it may be worth having a look at. I also have heart & lung issues from years of uncontrolled inflammation.
I would be guided by your rheumatologist as to what to try, so wouldn’t stress too much.
I have tried for years to get referred so now I've got her, even if I have to train her up 😉 I will not be letting her escape and will try my best not to be obnoxious🤞. I think my Mother has been very generous with some wonky genes, blood disorders, ? PA, now has Essential Thrombocytopenia , OA and RA, severe osteoporosis the list goes on but she always had great skin, so c'est la vie 🤭. My daughter managed to hide scoliosis from us until she had curvature of over 92%. Had surgery end of November 22 and is not yet pain free, having injections for B12 def, treatment for vit D and Folate def, and ribs look more misshapen now, so we are all wonky . I just want to be able to potter about, not expecting to run marathons 😂
It's crazy how when you stop to think all the symptoms and problems you have over the years could be something more serious but no one stops to join the dots. Early 90's I think radiographer was getting bit annoyed with me , she was trying to see into my mouth to rule out neck damage, after a car accident. After much annoyance she said wow you have a really tiny mouth, I wanted that in writing, told me I must have arthritis in my jaw. Got called Face Ache for a while. Had problems with my feet forever, lower back, pubis, agony standing, sitting worse, did eventually settle. Went through several phases of wrist, elbow problems, GP kept saying tennis elbow , couldn't pick up a kettle to make a drink like being stabbed with a hot blade. 2 years ago December stepped up onto a wooden stool, my right knee went and left heel felt like I had been stabbed, couldn't weight bare for weeks still not right but can at least get down stairs without having to slide on bum. CRP has been raised and not returned to within range for about 3 years mostly around 8 or 9 but has been over 12 few times. Strange how for some results " in range " is described as normal but than others when it goes over range they dismiss it.
I am on hydroxychloriquine plus steroids,sulphasalazine,pregabalin plus a biologic Abatacept but I am not pain free.I manage better than I did years ago but doing too much punishes me hard.It is hard to get perfect as I am not sure if we can be completely pain free but tell him you don’t feel much better and the co codomol are helping at all.Good he is keeping check on you
My RA said that you should see results after three months with new meds. I first of all tried methotrexate tablets which didn’t agree with me. Then I tried sulfasalazine which again didnt agree with me. Then I was offered Humira Biologic injections. You have to try at least two forms of DMWARDS first and pass a score test and then the Rheumatologist will put a case forward to the multidisciplinary team to discuss your case to see if the Biologics will be approved. They have to follow this process due to the costs involved. I started two weeks ago and had my second injection two days ago and im already seeing great results.
When I was first diagnosed with RA I thought they had got it wrong. I wouldn't start any treatment and after 2 years of trying to cope in the hope it would stop, I started on sulfasalazine. They wanted me to start on 2 different meds, however I said I'd rather start on sulfasalazine. I've been on it a few years now, and although I have flare ups, I'm grateful for the days when I'm mobile. I have never been one for taking meds, however now I take ibuprofen, 400mg twice a day and they really help. I know it's not ideal however when we are in pain and unable to move, we have no choice. I was told by my consultant that RA can cause inflammation in any part of our body, and I know when I'm having a flare, my breathing is definitely affected. Diet plays a really big part aswell, so sugar and salt is a no no for me, even after eating a pack of salt crisps, it has an affect on me the next day. It is such a bitter pill to swallow when our mobility is affected in such a way, it's so easy to feel depressed. I've had days where I don't want to talk, let alone see anyone and only do what I really need to do and just sleep, and again I notice the less I do the more stiff and in pain I am, so I realise, I need to move as much as possible, stay as active as possible, as sleeping and sitting just makes my RA worse. I do know I don't think I could cope without the ibuprofen. I hope you find something that works for you. Unless you have RA most people have no idea how hard it is, so I don't bother saying to people how I feel, it's not because I play it down, it's because alot of people have no understanding, it's just a case of talking to people you know will understand.
I started on Methotrexate and Hydroxychloroquin and Sulphasalzine was added later which seemed to the the trick for me. 😁 I've since been able to reduce the Methotrexate dose and am hoping to be able to reduce it further when I see the rheumy at the end of November. The combination is working so well that I don't need any painkillers.
Write a list of all your symptoms, take photos of any swollen joints. Most of all plan this call (your in control of the appointment,) think about what you need from it?You've got to.admit your struggling and needs help!
Hope your appointment went well today
It went well, I think. I had made some notes to remember to cover aches, pains, general issues. Told her I hadn't noticed any improvement, and had indeed felt awful lately. We went through everything, discussing each point. We decided maybe it was time to give up on the Hydroxychloroquine and try Sulfasalazine. So she is sending out some blood forms for me to get tests done has/is organising Rheumy Nurse input , not sure how long this will take. Main thing is I felt listened to, she actually listened, no patronising or gaslighting, hope I'm not being naive. I have become so disillusioned with Health care professionals that I am unsure if I am being hoodwinked, but it seemed to go well so here's hoping. I had been quite anxious about the call but feel better now. She also mentioned she thinks I have other conditions but we will work through treatments and if necessary seek other support. So going to hope for the best but prepare for the worst kind of thing.
Feeling forced to take pain medication 
New!
i've been newly diagnosed and in lots of pain - help?
Off Baricitinib and knee replacement
First Video Rheumy Appointment on Monday
