Hello out there, I was diagnosed with RA 5 weeks ago having been in debilitating pain pretty much all over but worse in my hands unable to open or close them. My doctor told me it was likely fibromyalgia but something told me it was something more than this, so I requested blood tests. My anti CCP test reading was more than 340 I’m told this is a high reading. I’m on Sulfasalazine and just this week increased to 4 tablets a day. I’m also on Prednisolone 10mg I reduced to 8.5 yesterday with a view to continue slowly reducing I don’t want to be on it too long. My hands still remain very problematic, if I go out for a walk they swell up, if I do chores they swell, I’ve been unable to wear rings since March. The left hand is worse, I’m unable to clench it at all, the right improves late afternoon. I had an MRI scan 2 weeks ago which showed significant swelling of the tenon sheaths in my hands. My ankles hurt today as do my elbows could this be due to the reduction in prednisolone? Or is this just the way it is? Will my hands ever return to normal, will I be able to wear my wedding ring? I’m really struggling to accept this new diagnosis, my mood is low it feels a bit like I’ve been given a death sentence. Sorry to sound so doom and gloom but it is how I feel, I would be most grateful if any of you can relate to this, give me any tips or just share your experience. Many thanks for reading my long post.
Newly diagnosed RA: Hello out there, I was diagnosed... - NRAS
Poor you. Really sorry to hear you’ve been diagnosed with RA and not surprised you can’t quite accept that you’ve got it as although it doesn’t kill you it does change your life. I’ve had severe RA for 30 years. The best advice I can give you is get hold of as much credible information you can - all the Arthritis Research material is very readable, as is all the information produced by NRAS, make sure you go and see a GP who is up to date on the rheumatic/musculoskeletal diseases and knows what the score is re signs and symptoms and get referred to your local rheumatology team pronto if you haven’t already. They are the experts and see all the types of problems we all present with day in, day out. The drugs used these days are superb - such an improvement on years ago - and with adequate pain relief and knowledge it’s much easier to cope with a disease which can overwhelm you if you’re under-resourced and worried.
This forum’s great for discussing how we all feel but we’re all different and have many manifestations of RA and its varying problems so I hope you find comfort from the many knowledgeable people on here but do find out the basics first so you know what to expect and how you may be affected. All the best and do hope you’re not too severely affected in future.
Hi Osame . Totally understand the hand problems all you describe happens to me .I was diagnosed 4 years ago did ok on methotrexate until 2 years ago hands so bad had to have my wedding and engagement rings cut off ( on my 30th wedding anniversary 🥺) then it spread all over and last year was a nightmare. Tried and failed drugs then started entanercept along side methotrexate after a dose tweak I’m starting to get back to some normality certainly not pre RA but in the land of the living. Still have problems walking due to Achilles but hopefully will be sorted .
Getting the right medication and often a cocktail of drugs is a long process.These drugs take a minimum of 3 months to work and if they don’t you try or add another and again have to give them time. Patience is required with this disease and any improvement is soooo slow. It doesn’t help while you suffering but eventually you will improve. Even in March this year I thought this is my lot but I have got so much better. Hang on in there.
So sorry you are currently suffering badly. RA drugs do take three months to have a beneficial effect. Your questions can be answered by your Rheumatology nurse or specialist.
You might need to have a higher dose of steroid tablets before reducing when pain is no longer so bad.
But this should be discussed with your Rheumatologist asap.
Do you have painkillers too eg Tramadol?
It is a very depressing diagnosis but modern drug therapies can make a huge difference to most. Here, we have mainly those for whom finding suitable drugs has been a struggle. Most are out enjoying near normal or normal lives, thanks to appropriate drug treatment.
I find that cutting right down on sugars and the unhealthier carbs, eating foods that are known to boost health, does help a great deal in ensuring overall health, and this means it’s easier to deal with RA.
I also take organic turmeric curcumin containing black pepper which aids absorption, and boswellia seratta. These two combined really help me with preventing stiffness. Good studies show they are better than NSAIDs eg Celocoxib.
To build bones, hair, nails etc, I take VitD3 that also contains boron, magnesium and zinc. Barefoot Nutrition, Amazon and Health Leads are among the sources from whom I order.
I’m sure that once you have an opportunity to discuss your concerns with specialists, and begin to explore ways to help yourself, and drug benefits kick in, everything will begin to feel more hopeful.
Take care, stay safe.
I couldnt agree with you more about sugar and carbs many many years before I was diagnosed with RA I'd made the connection with feeling very unwell with carbs sugars ie. after christmas and holidays so something must have been simmering even then. I dont always succeed with reducing them but i pay a hefty price mostly I'm very good
Sorry that you have had to join us on here, but it is a source of support and information. Remember that most posts will be about problems! The people who haven't got problems are just getting on with their lives, although they may be changed in some ways by having a long term condition.
The most important thing is good accurate information and I would second the Versus Arthritis (as Arthritis Research is called these days) and NRAS for accurate and full information. Beware of people/websites telling you that this or that will 'cure' you. They are misguided at best, or after your money!
Please feel free to ask specific questions and use the search box on here to find previous answers (the same questions do tend to come up frequently). And if you feel fed-up, miserable, want to have a rant - feel free. We will understand.
Keep your own records and keep pestering the rheumy team - they don't know how you feel unless you tell them.
so sorry for your pain and diagnosis ... stick to the 1st rule of motherhood NOW: when in doubt, in pain, fatigued - REST REST REST. Then ... try to pace yourself... small paces, tiny challenges.
Houseproud? ... don't be. If you can manage, get a window cleaner, a once a week floor cleaner.even. Dust? rember Quentin Crisp?.
Cooking your thing? then buy chopped veg, frozen veg, prepared veg... spare your poor hands. Kitchen aids like jar / bottle openers...careful re booze tho'.
SORRY 2be so practical/ prescriptive; others will have many more ideas. As you will learn people are helped by different meds; it will prob be trial-error to find what works best 4u. shorthand means hands wrists are tired now, but try to relax, go with the flow, as in yoga etcThings will improve but it won't be quick, steroids 'kill' the pain but not the disease. XX
Yep GA is right. Use to be so house proud not any more.. my mum would be turning in her grave. When I got my Pip I planned to use it for a cleaner but... lockdown happened. I don’t wash up anymore my hubby and son do it. I am going to have lever taps fitted to my all my sinks and bath ( should have happened in March 🙄🙄).electric tin opener is a god send etc all a bit depressing but it helps
Lots of useful replies but just to say that yes, once your disease is under control you should be able to return to ring wearing although you might have days when it's not possible. I was diagnosed last year with a very high CCP reading (also more than 340) and although I'm not there yet with medication, things are definitely heading in the right direction. I've learnt from here to be proactive and contact the rheumy nurse if things aren't going well rather than sit and wait but sadly you do need some patience to allow them to work out if your meds need adjusting.
The clinic gave me some useful leaflets (although it took a while for me to pluck up the courage to read them!) and I adjusted my diet (nothing drastic, just things like more oily fish, veggies, "good" fats) and started exercising for the first time at 59! 😰 I took up Tai Chi for Arthritis, swimming and Aquafit. Sadly the last too are out for now 😢 and my feet are a bit sore when I walk so I've got an exercise bike on order - wish me luck! 😂
can you check with a knowledgeable person - i was told to avoid exercise bikes [a] for my feet and ankles and if i did, then lock it away from OH as it can make prostate probs worse... so i didn't get one, but he did for him and ended up in A&E then surgery.. for ? ulcer? down below ... terrible patient and i had to nurse him... Apparently cross trainer is better bet?. I miss my swims sooo much... cool water, congenial company... aaah x
Thanks, I'll be careful. My feet aren't too bad, just slightly swollen just below the little toe. According to the NRAS website, walking, swimming and biking are recommended although obviously it's very individual. When I asked a rheumy physio about exercise when I was first diagnosed, she said to try whatever I fancied carefully and monitor the results - if my muscles ached a bit, fine but if my joints felt worse, back off.
Don’t suffer in pain get onto your Gp or Rheumy if you can and it looks like you need an additional drugs added,don’t want to rain on your parade but I’m not too bad pain wise at the moment and had RA and OA and Angina 5 years now and am on biological and methotrexate and I still get bother with my hands xxx
Welcome to the forum. You’ll receive lots of support here. Everyone here is dealing with some aspect or other of this challenging condition and you will usually find someone who has dealt with and overcome some of the symptoms you may be experiencing. Use us all as your comfort blanket. But more importantly, keep going, never give up, be patient and you will overcome and return to leading a more normal life. Good luck & much love 💕😷
Hi Osame. I was diagnosed in August last year. My hands were badly swollen and inflammed. I couldn't open or close doors (latch handles) or turn taps on and off - my husband had to fit lever taps to the bathroom sink. MRI and ultra sound showed a lot of erosion etc and I was given Methotrexate 15 mg injection and a steroid jab in the buttock (that injection was like a magic potion) which took a great deal of the pain away in a short space of time) and also 7.5 mg Prednisalone (I was able to wear my wedding ring again after about three months). Problems with feet etc came later and although things have been better for a few months now I had to increase MTX to 20 mg in March but I've now been reduced again to 15 mg and have to start Sulfasalazine tomorrow and my Rheumy nurse told me a couple of days ago that Sulf can take up to twelve weeks to work so it's early days yet for you. Reducing Prednisalone slowly is always wise, my Rheumy doctor told me to reduce by 1 mg per month and I didn't have any problems doing that apart from new twinges for a few days to a week each time I dropped down but it was OK. All the best, I hope it goes well for you but there is always someone here to talk to should you need someone.
Hi Osame, I just wanted to say hi and give a warm welcome. Lots of great advice and support from others. I was diagnosed last July and was started in Sulphasalzine too. Still on it now and it has helped. I’m having a flare up at the moment but hoping it will settle soon with the tweaks to my meds recently. The long wait for meds to reach their full potential can be difficult but keep in touch with us and know we are always here for a supportive listening ear. x
Please put p reassure on your consultant. If the first medication isn’t working there are others. RA treatment needs prompt action. I left mine too long blaming my symptoms on getting old! I had a wonderful consultant who moved me up quickly onto Entanercept weekly injection (easy to do oneself) and now fortnightly. Good luck and best wishes xx
Hi Osame, try not to despair just yet; hopefully with regular reviews from your RA consultant and adjustments in medication it will be controllable. Never the same but hopefully without constant pain. You will just learn what you can and cannot do and let others help you. At times when Inflammation flared up so much, I could call my RA consultant and was reassessed, sometimes given a Cortisone injection into the joint to ease the pain. Now it’s under control with Methatrexate Tablets and Benepali Injections weekly. It’s a process and we’re the guineapigs, until they find what works for us individually. Don’t be afraid to call consultant for help but I’ve found my GP unhelpful. Good luck, chin up x
I’m newly diagnosed too and had the same crippling pains with my hands and wrists. Last week I had an 80mg Kenalog injection (intramuscular in the buttock). The relief was almost immediate and complete and still great a week on. I’d previously had a depomedrol injection which didn’t do anything. I’ve also found following anti-inflammatory diet rules helps. Started hydroxychloroquine a week ago to try and stop progression but understand that will take a few months to take effect.
Hi sp22 good to hear there is hope, there seems to be so many different medications out there. My consultant advised me that ordinarily I would have started on methotrexate but this was not advised for new patients due to the pandemic. I feel very concerned being on prednisolone I was started on 10mg and advised to drop to 5mg after 2weeks but when I tried the pain became completely disabling again, so back up to 10 with a view to reducing 1 mg a week, I think the prednisolone is not helping my low mood, crying lots and fearful of the future. However, having said that it has helped finding this forum to speak with others in the same boat. Thank you for replying.
I too need to go on methotrexate when this awful pandemic is over!! Not looking forward to it to be honest. Don’t seem to be having any significant side effects to the hydroxychloroquine but hear the methoxetrate might be a different story.
Good luck with getting some relief I feel like a new woman after my Kenalog Injection. Being in constant pain definitely takes its toll on your mood and to feel almost normal is liberating!!
Hi again Osame. Yes it is a shock when you're told you have RA. I remember thinking why do I have this I've always worked hard etc etc and I felt like crying too but it is what it is and there's nowt we can do about it unfortunately. Once your pain is under control you will feel better and just accept it and hopefully not notice it too much. You could try a cold pack like a pack of frozen peas on your hands to help with swelling or even a bowl of cold water, it depends on the individual, my nurse told me to put a hot water bottle on mine and I was horrified as heat made it worse. As regards the Pred. it does take a while to reduce but it's worth it to get off successfully. I hope you feel better soon, I know at the moment you feel down but it will pass. xxxx
I'm on prednisolone and biologic injection I e been trying to get off prednisolone for 5 years I drop 1mg at a time but each time I have a flare the go to seems to be increase prednisolone I'm now down to 5mg and no matter what happens I'm determined not to increase it anymore. Im waiting surgery on my spine but the surgeon wont do it while I'm on prednisolone the goal now is to be off by september then the surgery can go ahead. At this moment I'm having a mini flare but darnt ring rheumatology for fear of prednisolone.
Have you tried dropping by 0.5 mg each time - I read recently someone else had done this and it was working. Somewhere (I can't remember where) I have a list/schedule of Pred reductions from someone on another forum who posted it a couple of years ago. If you like, I could look it out for you and post it?
Very good advice from all. Very early days for you and your drugs won’t really have kicked in yet, so it would probably be helpful to have some painkillers added in. Like the others said gadgets are a bonus. You didn’t say where you are I know in the two areas I have lived the rheumatology deeps do a session for newbies so you can understand more about your disease. You also get to meet people who would support you in your journey, pharmacy, podiatrist, physio. You find out about support tools, including support gloves which I think would really help you at this time. I got a great one for opening bottles. Most people have Lakeland’s jar key.
I have had this disease for over 20 years and was on sulfasalazine which worked beautifully and I was able to go about my life with little difficulty just know your limitations and don’t get overtired. However, I had a massive flare up 2 years ago after being put under a massive amount of stress, I was just like you my hands were curled and swollen. The drug no longer worked for me. Physio gave me individual Pilates which has been brilliant strengthening my core. I’m really missing it with this lockdown. Also try heat pads or ice packs, me I like an old fashioned hot water bottle on my joints. If your hands don’t improve your rheumatology can give your hands a paraffin wax bath, it’s helped me in the past reduce swelling. I have had problems if you read my other posts but the main thing there is lots of support and if you don’t feel that things are working talk to your rheumatology. Ask if they have support or something for newbies like you. Hope you feel better soon.
I am on my third biologic as I developed problems and side affects from the previous drugs. Now on week 5 of this one. You are just starting out so of course they put you on sulfasalazine. It has worked for millions of people for a long time. After that I was put on methotrexate great for my joints but I couldn’t hack the side effects. Interestingly my friend didn’t have the same reaction to me and I found I was one of a very small number that had the effects I had so don’t count me as normal in any sense. I’m now on Benepali very expensive and usually used when you are having problems with other drugs. Thankfully I’m in Scotland and we have free medication here. I cannot fault our health system here.
Remember as well with sulfasalazine be careful about using supplements as they don’t always agree for instance don’t take echinacea or ant acids. I always found a glass of milk and sherbet helped with heartburn x
I have been on Methotrexate 15 mg (Metoject) since September last year then 20 mg from March this year and now back down to 15 mg because of awful hair loss that's why Sulf has been added. That's interesting about antacids as I take Gaviscon Advance every night before I get into bed. I can't drink milk so can you take sherbet on its own?
Hello Osame Your story sounds very familiar to me but I am much further on, and meds are now making a difference for me. I totally understand your feelings but there is light at the end of the tunnel and hopefully you will get good care from the RA nurses. Do you have a consultant and RA nurse to talk to. There are lots of different meds and they will need to find what suits you and what you respond to well. It might take a little time to get this in place but don't give up, keep telling your doctor and RA nurse which I hope you have, if not ask for a referral, how you are feeling and what level your pain is at. They should then keep adjusting your meds until they find the right ones for you. There is no 'one fit suits all' as there are many different forms of RA. I do feel for you, but hang on in there and I'm sure it will get better.
Sorry to hear you are in pain.
I was diagnosed 2 yrs ago age 43 think I was suffering from my late TWENTYS when I look back.
I had swollen knee, shoulder elbows, hands and wrists, was on crutches for a long while and at the beginning I found it hard to accept and felt my life was put on hold . Even now I struggle a bit and there are still friends ect that don't know, as I felt that if I did not tell anyone i had this I could somehow forget I didn't have it, and I did not want any pitty or treated differently.
I had to change my career as I could no longer cope and my old boss didn't understand and was not supporting enough.
It took a while to get the correct medication, but now I have been on sulfasalazine for 9 months x 2 twice a day and etoricoxib ( anti inflam tablet) codeine and levothyroxine medication for my thyroid condition. And having steroid injection in knee and shoulder have really helped and made a difference.
I feel really great now, the medication is under control and I have learnt to accept taking pain killers too, as before I would not even like to take paracetamol lol.
I have learnt to take notice of my body and rest when needed and do gentle exercise which now helps a lot. And hand/ wrist supports help slot.
I love my new job and my boss understands and has made changes for me at work which all helps.
So I know it does not seem like it now but believe me things will get better.
Hope you start to feel better soon.
Hi Osame, Just had a thought about your hands from a post further down. It may be that because of Covid they are not giving these appointments out but have you been offered a Occupational Therapy appointment? When I had mine they gave me (and others) some really useful fingerless gloves (Isotoner Fingerless Therapeutic Gloves). They really helped me and I know other liked them too. You can buy them on Amazon but they are a bit pricey but worth it. Just a thought. xx
Hi there sorry to hear about your diagnoses I know how you feel. First of all there will be a period of possibly six months of initial therapy involving taking tablets like sulphasalasine, hydroxychloroquine, pain killers and anti- inflammatories. After 6 months I was put on mtx and biological meds as the above meds did nothing for my condition. I have been in remission for 7 years now so there is hope when you get your meds right for you.
I cannot make a full fist and had to put my wedding band into a jeweller to get a small extension so it could fit. In the beginning I lost nearly 4 stone and still couldn’t get my wedding ring on. I could not eat properly as RA affected my jaw.
What I will advise similar to another post change your diet, cut out as much wheat as possible, eat seeds and nuts that provide good fat and oily fish like mackerel and sardines and wild salmon if you can get it, avoid farmed fish which is difficult to purchase from supermarkets.
When you feel up to it try and keep moving without hurting yourself. Your synovial fluid is like treacle when you get up from bed in the morning that’s why you may feel stiff. The more you move the more the synovial thins and oils and feeds your joints if that makes sense. I know easier said than done but you will get there.
To conclude, there is continuous research for RA which gives us all some hope especially for our younger RA sufferers.
Good luck and try and stay positive.
So totally relate to how you're feeling at present. I cried when telling hubby my diagnosis, in a way as well as dealing with all things new to do with RA, I did go through "grieving" losing my former way of life.
First year treatment is up and down, but as treatment kicks in, and you learn to adjust it's possible to get good quality of life again.
Take advantage of every legitimate support (here is a good place to sound off) to ensure treatment is best for you, physio options, useful aids, pain management, and maintaining good mental health.
When well do something you love/like but don't be tempted to overdo, my hardest lesson to learn.
They're are loads of us dealing with this condition, so in a crowded boat.
Good thing is always someone you can turn to that can offer support that way.
Hi was my hands that were the worst affected more than twice their normal size. The sooner you start Meds the better. My hands are more or less normal now but had to add in a biologic before I stopped having flares altogether. Damage is worst during flares, find your soother for some people it's heat for me a ice pack reduced the redness and swelling and if you can wear them compression gloves help. Their was a point where I couldn't even fasten my bra or do my hair. I will get better believe and adjust where you can be good to yourself elevate your hands where possible and massage with a nice oil or cream is also of help. Take regular paracetamol a very underestimated drug for pain but has to be regular to get a paracetamol level good enough. Most of all don't focus on the diagnosis but try to live as normally as you can accepting an easy time when it's bad. I worked with patients with bad RA years ago there are so many more treasements than there used to be. Speak to your nurse specialist they are mines of information and can refer you for help where needed. Hope you get better soon take care
It is perfectly alright to speak here of your feelings as we all share with each other of the ills and pains of our perishing bodies. I experience the exact symptoms as you do and my dr. had also told me that it was fibromyalgia so I went on living..meanwhile I continue to get worse ...pain then began on my feet and ankles. So I changed drs. As I told of my symptoms she said..this is not fibromyalgia at all. RA can be a difficult illness to bear my friend may the God of heaven give you strength to bear it as He has done me. 🌷☺