Delayed reaction to diagnosis of RA

I just wondered if anyone else has had a delayed reaction to a diagnosis of RA as I am going through now. I have had RA for 2 years and have been on Methotrexate with good effect and no side effects and have been positive and upbeat.

However over the last few weeks I have become very down and worried about the future and progression of the disease. I am recovering from a nasty virus so this may not help.

I have talked to my GP and he says these feelings are normal but I feel I need to talk to someone about it but not sure who.

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  • Not very helpful of your GP really was it? I think we can all feel like that at times & as you say you're recovering from a virus (which I think most of us will relate to, there have been a few nasty ones this year) it's little wonder you're feeling as you are. Do you think phoning the NRAS helpline & talking things through with someone could help? The freephone no. 0800 298 7650 is open Mon-Fri but being a Bank Holiday it may not be open til Tuesday but in the meantime maybe having a look at the "Your Stories" section on the site nras.org.uk/living-with-ra would settle your fears a little, if you click on each story you'll be able to read the full story of each, many are quite uplifting I find.

    Alternatively you can talk through any concerns with us here, I'm quite sure many of us will relate to your fears & maybe you'll find comfort from the replies. I found a couple of positives in your question, you respond well to MTX with no side effects, let's look for more that you can focus on. How about expanding your question & maybe we'll get to the root of your fears & talk them through with you. x

  • Being diagnosed with a chronic disease is a bit like a bereavement & it can affect people very differently. I think we do go through a sort of grieving process and that isn't always immediate. Sometimes, maybe the initial reaction is to bash on & fight the disease and then something - like your virus - comes along and makes you question if you can continue to do that.

    There are ups and downs with this disease, as with life. It's also not unusual to feel kind of down after a virus. There may be an NRAS group in your area that you could go along to? There are also lots of people here who won't judge - just try to be supportive. Try not to beat yourself up for maybe not being at your best just now, find one good thing in every day to focus on and keep in touch.

  • Hi songbird 12 I like you was diagnosed 2 years ago and think it takes such a long time to come to terms with. I have had very down times but my GP referred me for CBT which wasn't easy to access. I feel there is little or none emotional support for us after diagnosis and it totally changes your outlook on life. I'm glad to hear metho is working for you. Please don't be fobbed off and keep in touch.

    Lisa x

  • I think it does take time, so rather than a delayed reaction it's just another stage of this. I've had it for 5 + years now and am pretty well, but I still find that I can hit real lows every now and then when I start worrying about the future. Having this does knock your confidence big time, as you can never be sure that (eg) the meds will carry on working. It doesn't take much to tip me back into the low zone, so a cold or getting over tired and I can sink very quickly.

    So don't feel this is abnormal, but listen to your body and follow your instinct that it would be good to talk to someone. Other have made good suggestions, but I'd also challenge your GP and ask to be referred as well. It's rubbish that he or she dismissed you like this. If you say you're concerned then you are, and should be listened to.

  • I've been resolutely positive since the beginning. Cracks are beginning to show now despite the fact that according to all the main indicators I'm doing well.

    At the moment it is always something - psoriasis in my ears is the latest delight. Makes my whole damn head feel hot and uncomfortable. When what ailed me were the biggies - very swollen joints, high ESR, plus extreme stiffness initially anyway - I focused on getting the best treatment and with those symptoms I was sure I'd get there, though it took perseverance.

    Now I am on the best treatment in my opinion, Humira. And I don't know that there are remedies for these relatively 'little' things that bring me down, including worsening if intermittent fatigue. I am aware that while the disease can be controlled, it can also simultaneously progress, if slowly.

    I reckon I've passed Level 1 in positive thinking. Level 2 is going to be harder. But we've just got to live our lives, right? What other option is there? I'm not a naturally chipper type but nor am I depressive by nature so I've kind of got a choice I suppose.

    We have to be hard on ourselves and easy on ourselves ... depending on the situation. You can tell I don't have any answers, just a vague but very real determination. I bet that virus has brought you down. My very matter of fact and in some ways 'old school' rheumy did offer to sort out counselling for me when I wasn't even miserable! His attempts to be all touchy feely were quite funny but appreciated. I gather that most rheumys worth their salt will acknowledge that we are all at risk of depression and anxiety and they will act accordingly. If yours won't help, ask your GP about counselling services.

    Keep posting, tell us how you feel. And I wouldn't worry too much about the progressive side of things - this stupid disease is so complex that things are just as likely to improve as they are to get worse.

  • I'm sure that the fact you are getting over a virus is behind a lot of how you are feeling. I went through a period of crying non-stop after about three months of my diagnosis then picked myself up and focused on what I could do rather than what I couldn't. However, if I feel extra tired or unwell, the depression returns. Feeling a bit like that at the moment even though I know it's due to the fact I've been overdoing things.

    Take care. You will feel better.

  • Will that filthy, fifty year old drug Salazopyrin, (which is the only thing our useless, bankrupt N.H.S. "Trust" here in Cambridgeshire will prescribe for my husband's rheumatoid arthritis,) cause him to lose his hair? We were given the mucky drugs in March but my husband hasn't taken any and cannot walk any more now. He feels he could not go out without hair and has a stomach ulcer, so isn't likely to tolerate an aspirin based drug like Sulphasalazine. It was quite literally all they could afford and we felt justified in refusing it, but now my husband is very depressed, (but he still has his hair and doesn't look awful, so perhaps we made the right decision!) I think to feel depressed at a diagnosis of a disease like rheumatoid arthritis is perfectly natural, especially if you are a younger person, as it is a disfiguring disease.

  • I take sulphasalazine (same thing, different name) and have all my hair, fine digestion despite having acid reflux to start with, and have well controlled RA. So am relatively happy and not disfigured. Please do talk again to your rheumy about taking drugs as from my point of view they are a whole lot better than the disease. Personal choice of course, but you can always stop the drugs if they don't suit but you can't turn back the clock on being diagnosed.

  • Sulphasalazine is a very good drug for some of us and is often successfully prescribed and can be taken along with drugs to protect your stomach. Posting that it is a filthy drug without giving it a try or even acknowledging it can be helpful to others is very negative and scaremongering . Depression is something that can go hand in hand with a diagnosis of RA. It can a serious and debilitating disease and no wonder we go through periods of depression? The drugs Prescribed go a long way to prevent debilitation and allow us to continue living active lives. It takes time to find the right combination of drugs for each individual, we are all different. I took this drug in combination with others for many years and kept my hair.

    I also have periods of feeling very down and have been treated for depression resulting from my RA. This forum is excellent and supportive. Your husband may find it a very helpful resource too. I send him my best wishes and hope his rheumy soon finds the right drug combination for him, it will take time, patience is needed but don't despair, things will improve.

    Mall

  • Hi Mall & thanks for your reply. I don't have rheumatoid arthritis myself, but have had the sort of inflammatory problems that cause ulcerative colitis and posterior uveitis. I have lost one eye from rheumatoid disease and the sight in my other eye is constantly monitored by Moorefields Eye Hospital in London, as it is slowly going. My left eye went quickly due to steroid injections and I have only retained the sight in the other eye because I had the sense to refuse them. I took Salazopyrine 30 years ago and nearly died from it when I had a small child with cerebral palsy to raise. I lost 2st. on the sickness and diarrhoea it caused and nearly died, but perhaps I am the exception, not the rule. I stopped it myself. A lot of these DMARD type drugs are what they use for chemotherapy, (Methotrexate in particular.) Whilst they may improve people's symptoms in the short term, it would be better if more funding was put the was of people with RA to have less biologically suicidal drugs in the long term. Both me and my husband disliked the young, rude, cocky, Asian Rheumatologist. we saw and we are not returning to see him. My husband has diseased lungs, is on prophylactic antibiotics all the time, and only has one third of remaining functioning lung tissue. The Rheumatologist seemed not to understand that "doing in my husband's immune system will be tantamount to killing him with his lungs." The Rheumatologist just stared into space when we asked how my husband would cope without his immune system, when he gets his next pneumonia bout. We were devastated at his behaviour. We thought he was stupid

  • Yes I am aware of the effects of the drugs and have been on methotrexate combined with other drugs including sulphasalazine for many years and now take take an anti tnf drug combined with methotrexate. All these drugs are dangerous and can have serious side effects. without them I would have been totally housebound and dependant on others for all my physical care needs. Methotrexate turned my life around and I am able to live relatively independently. I don't consider it a suicidal drug but a life saver, I have been taking it for nearly 20 years.

    Other than basic pain killers and anti inflammatory drugs RA drugs work by having an effect on the immune system; as it is an auto immune disease this is where the research concentrates. Over the years I have tried alternative therapies including exclusion diets but it is these drugs that are effective for me.

    I have weighed the risks for me against quality of life. RA is a disease if left untreated can cause all sorts of health issues as it can affect organs, including heart problems and shorten life expectancy.

    It sounds like your husband had an appt with quite an ignorant young man and I hope you manage to see someone with more experience with patients on your next visit. The lead consultant in my rheumy dept is in fact of Asian ethnicity and he is great. Unfortunately I don't get to see him on every visit to hospital and often have to see younger registrars without his experience. His predecessor was a terrifying white lady (now retired) who shouted at her staff for any minor thing and at any patient who had a smoking habit or arrived late. The sort of eccentric consultant you would see in "carry on" films. I can look back and smile now but she had me quaking in my boots on more than one occasion. Her behaviour wouldn't be acceptable today but when it came to actual treatment she was brilliant.

    Unfortunately there are no magic pills which will cure this disease, oh how I wish there were, but I sincerely hope your husband is soon prescribed suitable drugs.

  • Hi, Mall, I think it is just fantastic that you have managed to take the Methotrexate for 20 years, and been improved on it and stayed reasonably well. They would have chosen that drug for my husband but couldn't because it can damage your lungs, and my husband already has two thirds of his not viable any more, from the lung disease. They say it is Salazopyrin or nothing, no discussion, no questions answered - just take it and get out, or nothing. So we have asked for knee replacements for my husband which take place on 27th May, then referral to another Rheumatologist. My husband must have had it on and off for years, without knowing it was anything different than osteo-arthritis. Two different Orthopaedic Surgeons have x-rayed his knees, (one at a prestigious private hospital,) and the cartilage is completely gone, the bones of the lower leg and femur fusing up. It was like that with the rheumatoid condition that affected my eyes, there were years and years in between attacks of inflammation. I could have taken medication all the time and lost less sight that way, but my stomach is not strong and I reckon I would have died off from that, if I had not insisted on the tablets being stopped when the condition was in remission! It was very scary to keep going off the drugs though, and I wouldn't recommend it to anyone else who could tolerate their medication without the "cure being worse than the complaint!" Kind regards,

  • Many thanks. I'll tell my husband. It sounds silly, but he was really bothered about losing his hair! He has a chronic chest condition and is on antibiotics continually, but so far as we can understand the drug interactions on the internet, the Salazopyrin would diminish the absorption of the antibiotics. I think my husband must have had untreated rheumatoid arthritis for years and years, because he does have bad deformities. The G.P. refused to ever discuss what was wrong with him, until he became completely unable to walk. My husband is off into hospital soon to begin on the joint replacements. Hopefully he will walk again with knee replacements.

  • I'm into my first month of the drug (it's sulfalazine here) and so far my very touchy stomach is doing okay, and all my hair is still there, too.

  • As has been said, grief is a process, not an event. Every other bereavement I've ever had has come at me in waves over the years and even decades. I get new emotional tools and deal with things at each new level. At two years, I'd think the permanence of it would really be sinking in. Being sick only makes me more vulnerable to what's already going on in my head and heart, so I wouldn't be surprised if it has done the same to you. Don't worry, you don't have to redo the work you've done, and clearly you're sufficient to the task. Positive and upbeat are bound to waver from time to time. Take good care and be kind to yourself.

    -Bat

  • Thank you all very much for your kind thoughts and views on this subject. It helps to know that other people have experienced these feelings and they come and go through time. Your comments have made me feel very supported.

    I will hang in there and try to maintain a positive outlook while at the same time recognising that there are times when I will feel low but these are part of life and will pass.

    kind regards to you all.

  • Dear Songbird12,

    sorry to hear that you are feeling so down at the moment. Please feel free to ring the helpline and have a chat to us. You can call us on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    regards

    Beverley (NRAS Helpline)

  • I haven't been officially diagnosed yet, but I do understand where you're coming from whole heartedly because of another situation that I ended up going through. The thought of it is terrifying...even just today, I was battling myself about everything. You're doing the right thing!

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