I'm New Here Too

Hi

I’m fairly recently diagnosed (RF+ and anti-CCP+).

Is there any hope for the future?

Everything I read is just so bleak.

At the minute, I have few symptoms – no swelling, disability or fatigue – just a vague achiness which moves around (termed “palindromic presentation” on my records). I do have self-diagnosed Morton’s neuroma in both feet though.

My rheumatologist says the RA needs to be treated aggressively. Six months on HCQ has done nothing (other than reducing my RF and anti-CCP). I had to reduce my dose two months in as I was losing a lot of weight. My weight then stabilised. This week I have restarted the higher dose, but already my appetite has been affected and I cannot afford to lose any more weight. I have been advised to start Methotrexate – which absolutely terrifies me. I work 4-5 days a week and run a small animal rescue as well as having a home and family responsibilities. I’m not in a position to be able to take a couple of days out every week to recover from treatment. Nor could I bear to lose my hair. Seeing my reaction, the rheumatologist offered me Sulphasalazine as an alternative.

Has anyone with early RA and the above dire prognosis ever done well on just HCQ and Sulphasalazine? And is Sulphasalazine actually more dangerous than Methotrexate?

At 53, I feel my life is over, and whichever way I go now, it is all downhill. All I read is misery, pain, suffering, fear, hospitalisations, surgery, death.

Em

21 Replies

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  • Well I have a pretty good life and a full head of hair. I'm anti-CCP positive and on MTX, sulpha and hydroxy so can't tell you whether just hydroxy & sulpha alone would have done it for me. But the triple therapy works very well. Admittedly the first year post diagnosis was rough, physically and emotionally, and I found it hard coming to terms with having a chronic disease. But I'm now 95% normal.

    I was diagnosed at 53 and am 59 now, and worked part time until this year. And it's certainly not a life of misery and suffering as I'm generally fit and healthy, and can do most things I want when I want. I do still have the odd bad days, and have to take care not to get over-tired. but I'm looking forward to having 20+ years of a pretty good life ahead of me. I know I'm lucky to have a type of RA that has responded well to the drugs, and my lifestyle changes, but I think I'm in the majority and that's most people's experience. So don't despair, take it one day at a time and believe that it will improve hugely.

  • Hi Em

    I was diagnosed at 58 and the first question I asked was if I would end up in a wheelchair! However, the drugs nowadays really work for most of us. I started on hydroxy then after 3 months added mtx. I took a while to get used to the mtx- felt tired and queasy to start with but I have now been in remission for 2 years and lead a normal life. I can only take a low dose of mtx )10mg) as my neutrophils drop too low, but that has worked for me. I still need to pace myself and 'listen' to my body and I get the occasional mini flare but that is all. I am very strict about my blood tests; I get a printout of the results each month and check them myself. I have found out as much as I can about RA - NRAS have lots of helpful leaflets.

    Remember, most of the people posting here are having problems etc. Those like me who are doing well tend not to post. I only reply when I think I might be able to help.

    I hope the medication starts working for you soon.

    Sue

  • Hi Em,

    I was diagnosed at 52 and put straight onto MTX and after, 6 months break to sort out diagnosis plus one of blepharospasm some 4 months later (that's another story) I am back to full time teaching and have only had one day off in the past 16months... I know I can't do full time for the long term future but hope to do another year before choosing to drop to a 4 day week (if my employer can accommodate that!).

    The MTX can make you feel a bit squiffy so take it with food (porridge with chopped ginger worked for me but now I just have what ever I want and am ok - I'm on 20mg of MTX and 1X5mgof folic acid). Being aware of the creeping fatigue has been key and some days after work I have gone to bed rediculously early but that's paid dividend and I've woken up feeling somewhat refreshed.

    All the best

    Ali

  • I started on methotrexate and my hair is pretty much the same as before I started the medication. I've had more problems since starting hydroxychloroquine. But want to be pain free so I am tolerating the treatment.

    hope you feel better soon

  • Thanks for the replies, Helix, Sue, Ali and Matilda. I know I have to take something to try to minimise the risk permanent damage from the disease, although I am doing what I can myself. The drugs are hard for me to get my head round as the aches I have don't really warrant even taking mild painkillers for. If I was in pain I would probably be only too glad to take them! The aches I have are more depressing than anything because of what they represent.

    I don't know where this came from. It isn't in the family, I have never smoked and am not overweight. I have been vegetarian for 25 years, and have had a reasonable diet. All I can put it down to was that I was under intense, unrelenting stress for several months, which coincided with peri-menopausal hormonal disruption.

  • Hiya em13, like you I've only been recently diagnosed and was terrified of the medications on offer. The rheumy nurse will tell you that methotrexate is 'gold standard' treatment for ra which it is. However I opted to start with what I perceived to be the least mentally disturbing drug to me which was sulfalazine. I've been on this for four month now with excellent results. However I'm getting the feeling that ra is not, for various reasons, a one drug helps all kinda thing and your body will let you know if something works or not. I'm not saying I'm out of the woods yet. There are days where my ra reminds me that it's still there but I'm not in chronic pain every day and even on bad days it's a doddle to deal with.

    Do look at the meds on offer and see what is acceptable to you x

    Good luck 🍀

  • HI

    I have found the injectable pen works best for me (20mg a week) No nausea to speak of and just a bit of an upset tummy.

    May have a lost just a little hair but now after 6 months nothing to really notice.

    Good luck

  • Hi Em. Of course there is hope for the future! Each one of us is different. Unfortunately we seem to home in on the negative comments we read and hear. The reason I post is because I want to let people, like yourself, know that it isn't all doom and gloom. I am in remission and have had RA for 14 years. I was very bad with 23 joints affected and barely able to move at times until I became settled on methotrexate. Yes it did take a while but it has been the best thing for me and could be for you. Try not to worry, I know it is difficult but just take the advice of your rheumatology team who are there to get you in remission too. My hair also thinned when I started methotrexate but no-one else noticed and it didn't last long. Your body needs to readjust to the drug. Try to be positive. All the best x

  • Hi Em, like you I was diagnosed at 53 and was in a sorry state. My feet and one of my hands had become really painful and I had flu like symptoms a lot of the time with dreadful aching legs. I couldn't get up in the morning and could only come downstairs sideways, hanging on like a crab. I spent most afternoons asleep and had repetitive attacks of shingles in my ear.

    Finally I saw the doctor and had blood tests. I had convinced myself I had leukaemia and when the tests showed my ESR way up was terrified. I am seronegative but my lovely doctor sent me straight to the Early Arthritis Clinic. They told me I had inflammatory arthritis (I already knew I had osteo). I had hand x- Ray's and was given hydroxychloriquin and monitored. The hydro had no effect and I tried sulphasalazine which also didn't work. In between I got steroid shots to keep me going. This all took 2 years to get sorted.

    Methotrexate came next (apparently where I live you have to fail at least 2 other less aggressive drugs before they give you metho). I was scared of it because of the way it changes your immune system - I worked at a school and the children left me open to lots of germs, and fear of the shingles attacks didn't help, so I wouldn't take it and went very downhill. At my next clinic visit six months later the consultant told me my RA was very active and I must give it a try. My 'How do you feel on a 1-10 ratio?' was about 8.5, but what decided me to give it a go was the nurse who told me as I was leaving not to be afraid of it; she was on it and it was what kept her going, and she worked in a far more germy place than a school!

    Methotrexate worked for me. It took time and I now do injections instead of the tablets, but it has meant I can get up quicker in the mornings, do general activities at home etc, walk downstairs as normal and don't have to sleep all afternoon. Instead of making life harder it has made it easier, and although I have now finished at work, I managed to keep it going for another 6 years after being diagnosed as well as still having a houseful of family and pets to look after! Oh, and I never lost my hair :-)

    So please don't feel afraid to try. The drugs sound scary and its best not to look up too much info on them. You will be closely monitored with blood tests and check ups and can always stop drugs anytime. Your weight loss is possibly not helped by the anxiety either. I was the most scared person ever at the start of treatment and saw a future of immobility, wheelchairs, dependence and uselessness but have learned to adapt, and do only what I can and ask for help if I can't.

    Sorry this is such a long reply but your post touched a nerve and sounded so like I felt six years ago. Good luck with whatever you choose, and stay strong. This is a great site to talk to others who understand. Xx

  • Thank you, Kariss, Sheila, Joanna and Kb. Your comments help me get things into perspective a little.

    It is the anti-CCP that is worrying me. If it weren't for that, I'd probably be feeling more positive about the future. I can only hope that this has been detected early enough to gain control of it before permanent damage occurs. I'm guessing it is early because although I have widespread aches, I haven't yet experienced stiffness, swelling or fatigue. I'm on the go from before 7 am to after 10 pm, with only little things getting the better of me. I must be the only person who has to start to peeling a banana with a knife!

  • Hi Em13,

    I know that feeling! I felt a lot of resentment at the beginning, eg, I have 4 siblings so why did it have to get me? etc, but you do learn to adapt. My life has always evolved around being creative...art, drawing, pottery building, making my own clothes, cooking and so on, also I no longer drive and used to walk everywhere, but guess where my RA problems are worst? Hands and feet ...Sod's law! I really used to be miserable about not being able to hold a pencil but now I draw on my i pad and have adapted my style- bigger and bolder. I can't sew any more but I can still cook- there are many helpful gadgets to help with that (Amazon has lots) and we all eat chunkier, unpeeled veggies instead. :-) And I still walk, just slowly, not far, and own a grand collection of pretty walking sticks- not at all granny like. Now I'm in the process of adapting my taps as I can't turn them on or off easily and am fed up of getting stuck in the shower!

    The meds are never a quick fix but hopefully you'll find the right one for you soon. My disease is always active but it has definitely been slowed down and helped by them.

    Best wishes for the future. X

  • Thanks, Kariss

    I dwell more on the possibility of my sons developing it rather than my brother or sister not having it. Although it hasn't been manifest in our family, my sister was very ill with a mystery illness some years ago - all her strength suddenly left her and as she recovered she ended up wearing braces and splints. Nothing was ever diagnosed, other than fibro. Since I was diagnosed, she suspects that she may have it too.

    I have told my husband when we redo the kitchen that we need lever taps! He has a habit of turning them off very tightly and then I struggle with them. I am usually Ok with the shower dial (although I may have to try both hands), but squeezing the last of the shampoo or conditioner out defeats me. The gadget I need most is something that takes away the need for "elbow grease" when cleaning. Applying pressure with my hands is one of the things I find hardest. I need to clean my windows, but keep putting it off for that reason. Today I'm using an electric sander to prepare some old chairs for painting. But it is heavy and putting some strain on my wrist. Nothing is as easy as it used to be.

    I think I'd probably opt for a Gandalf type staff if I ever need walking support!

    M

  • I just thought I would mention this as it may be of interest to you. Earlier this year I attended a four week course at my hospital, (offered by the NHS) on joint protection for inflammatory arthritis. It was aimed mostly at hand problems and was very instructive. Areas covered included what inflammatory arthritis is, pain relief, exercises to keep fingers and wrists moving, demonstrations on how to use mobility tools in the kitchen and where to get them, and also how to tackle tasks around the home in other, joint saving ways. Plus a section on relaxation teqniques.

    I was offered the course after attending the Occupational Therapy clinic for a splint for one of my fingers, however I think it's the sort of thing that pops up on sites like this in the what's happening in your area section. The classes are small and friendly and it was great to meet others who are like myself. It was really worth attending and I learnt a lot from it and would thoroughly recommend it to anyone with hand mobility problems. I just thought it was worth a mention in case one is held near you in the future. I think you could also find out by contacting your hospital directly. Now I'm hoping they might do one on feet!

    All the best, K

  • I shall look out for it, Kariss. I know all about relaxation techniques as I have practiced meditation many years and used to lead relaxation sessions at the local hospice when I volunteered there. It is much easier, particularly when you are in pain, to be guided by someone else's voice though.

    I could do with guidance about pain relief. I developed a wheeze with Naproxen and was told to take Ibuprofen instead. I usually only take a dose at bedtime, but recently decided that perhaps it needed to build up in my system to have any pain-relieving effect on my aches, so took 2-3 doses a day. Since then I have had the occasional wheeze (only on the inhale and only when I breathe very deeply), and it still doesn't seem to be having an effect anyway. Paracetamol is a waste of time, and I can't take Co codamol as I'm on LDN (which cancel each other out). I have tried legal CBD oil but that didn't work. I alternate between thinking I should be taking anti-inflammatories to get the inflammation down, and being terrified of the side effects. My NHS GP said I should stick with Ibuprofen and Paracetamol because anything he could prescribe will have higher risks and side effects. My private GP (Clinic 158) is more understanding and has suggested prescribing Sativex or Vitamin D therapy. Meanwhile, the consultant is giving me the choice between Methotrexate and Sulphasalazine - which I know I'll have to take one of.

    The first time I saw the consultant, he gave me a steroid injection in the right shoulder as I had quite severe tendonitis. That gave me very quick relief and I felt really well for a while. The next time I went he prescribed HCQ and gave me a steroid injection in the behind to "tide me over". It did nothing for me whatsoever, other than disrupt my sleep and make me feel I was going crazy! The next day I developed a problem with my right wrist - which the physio said was De Quervain's Syndrome. Weeks of deep tissue massage improved it, but the physio decided I needed a steroid injection in it. The GP did that and it cleared up within days. At the last consultant appointment I complained about my right elbow and he offered me a steroid shot, which I accepted. Looking forward to a resolution, I pulled my sleeve up as he approached with the syringe. "Oh, no" he says "in your backside". By then, it was too late for me to refuse, although I was right in suspecting that it wouldn't help. I think there must be two different medications involved - one that works and one that doesn't. I feel I'm kept in the dark a bit by the consultant. I need to know the names of the medications, and I need access to my test results. I'm not sure how to ask him for them, without him feeling I'm not trusting his interpretation of what is best for me. He is probably more understanding than most as he has inflammatory arthritis himself.

    M

  • Hi Em

    dont know if this helps but i tried cbd oil too but it was v weaklike junior disprin. Off all mtx til lung scan done but have found 2.5mg prednisolone with 200m ibuprofen mrning and evening with maybe 200 mg ibu with lunch are keeping me going and after 3 wks of this am slightly more mobile - once the mtx wore off it was stand -step/shuffle-scream and hands etc bad. Maybe this combo wd help -btw if found 15mg methotrexate injection better then pills [ hands permitting] best 2u xx

  • It sounds as if you are having a rough time, GranAmie. I haven't got to that kind of stage - yet.

    I have declined steroids, because at the moment I don't feel that things are bad enough to warrant taking them. and I would like them to be an option when I really need them. Although I must admit, the thought of feeling normal again, albeit temporarily, is very tempting!

    Normally, I take a single dose of Ibuprofen at bedtime, to keep inflammation down and to help me sleep as much as anything. During the day I'm achey, but nothing really serious enough to take pain killers for. It is more the nett effect of always aching somewhere that gets to me. I don't seem to get any respite from it, there is a constant reminder that I am ill.

    The last couple of weeks I have given up the Ibuprofen as it was causing me to wheeze (as did Naproxen). Then I got side effects from the increasing dose of SSZ and this week stopped taking that as well. I let my rheumatologist know about the problems and asked if it was safe to keep taking it as I didn't really want to give it up. But he hasn't got back to me. I see him again on Thursday. It may not be side effects of the drug, but some kind of coincidental chest infection anyway. (It sounds unlikely, but I'm 53 and never had a chest infection, or any other kind of internal infection requiring treatment so I don't really know!)

    I think the SSZ should be out of my system now, but this morning my body rebelled at even taking supplements and I threw up soon after. So today all I have had is the hydroxychloroquine. And actually I feel better tonight than I have for a couple of weeks.

    Some nights now I take a couple of OTC Co-codamol at bedtime, which has meant taking my LDN in the morning. I was surprised at the fuss they made at the chemists about me buying them, pointing out all the dangers. Yet they are quite happy to hand out prescriptions for some of the most dangerous drugs known to man!

    Hope your lung scan comes back clear.

  • Hi Em,

    I must admit I hate being on any drugs at all and have always tried to use alternative remedies in the past but I've had to give in and have gone from being on no drugs to four prescription pills a day, probably for ever! :(

    I also love the relaxation teqniques and have practised yoga for years. I've been trying to get my mum to try some...she has Alzheimer's and it would help her relax but she's very stubborn!

    I'm sorry the steroid injections in the bum didn't work for you as they were probably the only thing keeping me going when I first started treatment and wasn't responding to the drugs. I guess it shows how individual we all are.

    It sounds like you have quite a lot of inflammation going on in your body right now and are at that stage where you have to decide whether to take the drugs or not. Lots of people do well on the sulphasalazine, which is less aggressive than methotrexate, it just didn't seem to work for me and I had side effects. Moving onto methotrexate did work and as a positive note, over time I have been able to reduce my dose to half the amount I started on and that's without remission and with my RA always active. (I did try coming off altogether but by week 8 had gone downhill so re-started). So there's light at the end of the tunnel and hopefully onward and upward for you too.

    Ps, as an afterthought, if you take the mtx option you will also get sent for a chest X-ray which is standard before you start. This might flag up any help you may need with your wheezing. (My husband has chronic asthma and I'm always on red alert when he starts wheezing!)

    Best wishes and keep posting. x

    K

  • Although I'm only aching at the minute (which is depressing, but not unmanageable) having read up on RD, I don't really think I can risk not taking medication. Since all this started, the only time I have felt really good and without any kind of ache or pain was while I drinking 3 pints of fresh fruit/vegetable juice a day. I stopped that when my wrist started bothering me, but I really ought to get back to it.

    In May my CRP was 0.7 and ESR 15 - both within the normal range, or even low for someone of my age. Yet I definitely had inflammation going on in my hands. So along with the non-working steroid shots, blood test results are something else that doesn't make sense! I seem to have fallen through to some parallel universe where nothing is clear any more.

    My sister dropped in today and I advised her to get tested for RA. My hands look normal, but Jo has lots of red nodules on her fingers, which look likes some kind of arthritis to me. She already takes Diclofenac for joint pain.

  • Dear Em13,

    I was diagnosed RA 2 years ago. I am in remission now. The things that I did was to work very closely with my rheumatologist and the physiotherapist. I never skip my medication and I exercise daily.

    I am still on mtx and there were some side effects at the start but they subside after our body got use to that. I hope my experience can inspire you to see the light ahead.

    healthunlocked.com/ra-warri...

    Below are 2 most well organized and informative videos I like to share with RA patients. They answered most of my doubt about the disease.

    healthunlocked.com/ra-warri...

    Good luck.

  • Your story is very inspiring, Amy and I know that is the best way, while doing what I can for myself at the same time.

    At the minute the drugs scare me, and I'm not sure what side effects are Ok and what are worrying, so I worry about them all! I am trying to come to terms with the fact that I have no choice but to take highly dangerous drugs. It's hard because no one around me wants to discuss my fears about them.

    I haven't been given any exercises, or advice - maybe the consultant doesn't feel I need them at this stage. But it would be helpful to know what is helping and what might be damaging. Yesterday I was lifting and moving concrete kerbing and shovelling sand, but wasn't sure whether this was good "exercise" or not as my wrists were not enjoying it. But it needed doing, so ...

    Thank you for the links. I will watch the videos. At the minute I have a birthday card to deliver and lunch to prepare, so no time. I guess a walk is good exercise! I do find to keep moving is best. I'd like to do yoga or tai chi or something along those lines. It would be good for me socially too as I have become a hermit since my diagnosis and don't really feel like mixing with people. Somehow, I'm not the person I was and I'm not sure how I fit into the world these days. I lost a lot of confidence when my weight dropped when I started the hydroxy. On a reduced dose it stabilised, but I would be happier a stone heavier.

  • Dear Em13,

    May be I should write something on the side effects that I had and also my exercise program so that I can also share the link like what I did on my recovery process. To share a link is always easier than repeatedly write the same thing when I see new RA patients worry about the side effects.

    The videos will tell you that for cancer patient, the mtx dosage will be many times higher than for RA patients therefore the side effect may or may not happen to RA patients. Say there is, it may not be serious as compare to the benefits it gives us.

    For exercise, you need to go for low impact exercise until a day your body is strong enough to handle a tougher exercise then you listen to what your body can do and go for it slowly. I will write something on that and share the link with you.

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