Overwhelmed by information on RA but does not fit my pattern and feeling alone and lost.

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I was diagnosed with RA last year, I had the worst experience of a rheumatologist, he was furious because I did not want to take methotrexate, this was thrown up with no real discussion about me and my symptoms which are not exactly text book at all. I lost my son to aplastic anaemia years ago, and some of the drugs prescribed affect the bone marrow in a similar manner, he treated me like I was a mental case. Thankfully I have a new consultant, I take hydroxychlorquine but I am so fearful of the DAMARDS, don't really want them because I don't want to feel ill. Despite odd flares I have been active, swimming and walking , helped so much, the RA despite affecting a few joints does not clearly manifest itself, feels muscular sometimes, I feel alone, lost, depressed, because I don't know what I am looking for at all. The doctor pushing for extra meds is making me ill because I need to assess what is happening and where. I am more ill with the mental stress than the actual RA and I feel completely alone.

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  • Posted

    Hi mum... just to let you know I've found your post and am still researching. Hopefully you can get some balanced feedback to help you.

  • Posted

    Hi Janet

    As you say you are new to the RA and are scared about the effects of the drugs. Please don't be x

    Hopefully your RA nurses discussed the drugs and side effects with you - if they haven't please get in contact with them, if they have speak to them again

    In the meantime on the net it says this

    "Hydroxychloroquine (Plaquenil) and sulfasalazine (Azulfidine) are used for mild rheumatoid arthritis. They are not as powerful as other DMARDs, but they usually cause fewer side effects"

    I would carry on taking them as they do seem to be keeping the RA at bay

    Depression goes hand in hand with RA so please speak to your family and friends, keep up with the activities

    • Posted

      Thank you so much for your response, just reaching out to me helps. I just had a bad start, the Consultant was like robot, a cold fish, read out treatments in a bossy manner and had no regard for me other than  an experiment. I have a team around me but they are distant so I reached out to NRAS and had a good chat today. My daughter as you can see is supportive and helping me reach out, I just simply don't know what's hit me or where I am going.Thank you  again

  • Posted

    Hi Janet, so sorry to hear you are having a rough time. I presume you have R.A. Positive which shows in your blood readings. There is also RA negative which dosnt show in your blood, but can be seen on your joints. I was told all these DMards slow down the progression of RA and helps with the inflammation. Must admit I was put straight on to Methotrexate, my Rheumatologist sounds kinder than yours. I'm not surprised you were reluctant, especially when you already knew quite a bit about the side effects. Methotrexate didn't agree with me and I tried Hydrox to. Both made me sick. Eventually I went on to Benepali injections which have been a lot easier to tolerate. Took me a while to accept I needed to be on them. But they have helped and I can walk a lot easier than I did. Everyone is different and you need someone to talk to and understand your worries. Is there a Rheumatology Nurse that you can talk to? I see 1 in between seeing the Rheumatologist and she is lovely, she listens and explains everything, plus helps if there is a problem. Other than that, how about your own Doctor? Please don't despair, I'm sure you will receive some good advice, the drugs and RA causes you to feel low, trust me, we all have dark days. If you don't have any treatment, will it gradually get worse. Maybe the meds are enabling you to swim, not sure what was happening before your diagnosis. I was told there are many many different forms of Arthritis. I hope you get some answers, take care. 

    • Posted

      Thank you Linda, I need people stories because I need to know what all this is about. I have friends with RA all suffered badly at the hands of methotrexate, counts down so low, B!2 had to be administered. Every story was the same and it started to bother me. I have had osteoarthritis from my 30's so I had no idea I had RA, only my clever GP who agreed I did not present as such asked for blood tests if only to rule it out. I was not in great pain or inactive prior to diagnosis and then on diagnosis I took up swimming and walking, kept up with my Carer job. I get odd days with stiffness and sometimes swelling, but generally I feel normal for my age with the odd aches and pains. Taking hydroxy gave me the ability to make full fists again, I had a couple of stiff fingers before, however I want to keep this level of activity I don't want it to go worse and that is why I must find the right treatment, Thank you so much for sharing with me, I will be reading all replies over and over to help and support myself. I will also follow any advice THanks again.

       

    • Posted

      Glad all advice has helped a little. As you have read, everyone is different and starts the illness in different ways and also react differently to meds. At the end of the day, it's firstly accepting you have RA and secondly, only you can read all our messages and then decide what is best for you.  I started walking miles a day and going to the gym and slowly came to a halt walking with a stick. After using the dmards, I can walk again without a stick. Not perfect, but as iv said before on this Forum, you have to find the positives and not the negatives as it doesn't help, hard to do sometimes.  Sounds like you have had some bad experiences in the past, but I hope you find the answer for yourself. Whatever, RA dosnt go away, just calms down, but then flares when you least expect it. Also slowly progresses without meds to control it. Good luck with finding a meds that suits you.  I also had osteo Arthritis for years before RA was diagnosed. Sounds like your daughter is a good support, you need as much as you get. Take care.

  • Posted

    Hi Janet

    I feel very sorry for you and what you are going through at the moment. 

    We're all different - including our doctors. 

    We do all report varying experiences of our disease. The illness we experience with RA is physical and mental. And by mental I do not mean it is imagined, it is real. 

    Without treatment with DMARDs I felt physically wrecked and I was dangerously depressed.

    RA makes me ill. Without DMARDs I felt terrible. With some persistence and patience, DMARDs have improved all of my symptoms.

    With the easing of my joint and muscle pain and the lifting of my fatigue, I have regained more of my normal levels of capability and capacity. So my symptoms improved, my fatigue lifted, my mind cleared and all of this helped to restore my mood.

    I have had 2 rheumatologists, only because my circumstances made it possible for me to seek a second opinion. There is no question from either that I need to take treatment as the only effective solution to this disease. I don't question that advice.

    It was clear as well that the objective is for us to take the most effective treatment that can be found for us. Finding that might be a matter of time, with us as patients needing to accept that our doctors do not want us to suffer or be put at risk by either disease or treatment. 

    Methotrexate has not made me feel ill. I have found it more effective through injection than as tablets.

    Hydroxychloroquine has not made me feel ill.

    Sulfasalazine gave me nausea, and after a few weeks that did not reduce and my rheumatologist stopped that. 

    I am not listing these to either recommend them or to warn about them. Many people report varied responses and they're all valid for each person. It took months on methotrexate for benefits to become clear.

    There is a lot of poorly informed scaremongering rubbish written about various drugs. Methotrexate seems to have had its share. But our doctors are not out to harm us and we need to accept their advice. The advice and opinions of people with nothing at stake, more time and less education is the stuff to be wary of.

    You should not fear the treatments you are being recommended by a specialist. They understand the options and should respond fairly to your questions. If you don't like that person for whatever reason, try to find anther rheumatologist with whose manner you are more comfortable.

    Things can improve, I wish you well.

    Blair

    • Posted

      Thank you Blair for reaching out. Its been a terrible ordeal. I have been lucky with my GP who was prompt but my first consultant was awful and wasted 6 months for me, he told me I needed to see a pshychiatrist about my feelings, The GP was furious as was my daughter, he set me back so far its affected everything. I have  new consultant he is better but still a little pushy only because he wants me well but he needs to let me adjust because after what the other guy did, trust is an issue,  My story makes it hard to trust any medical professional after the death of my son, this is something I have to deal with, all I want is to feel at peace with treatment it took a big step to take the first one now I just need to add a second and be at peace with it. I don't want to lose my activity levels which are good. I love walking and swimming. It is just an overwhelming time and its getting started that is the hard part, Reaching out today is the first step on my journey, thank you for taking the time to answer me

    • Posted

      Hi Janet.

      I saw your comment about feeling like you were treated like a mental patient. Perhaps this is something you regard as a stigma, I don't know. I felt comfortable getting a similar suggestion from my rheumatologist. By which I mean, I recognised that I was feeling distressed and depressed.

      I was rapidly altered by the onset of RA, from being a capable professional as well as a fit, active volunteer firefighter, to being soo sensitive to sleep, barely able to lift a kettle, struggling to use a knife or spoon, agonised by small impacts, walking painfully, exhausted... It is miserable.

      I was miserable and I took my rheumatologist's advice as well intended and saw a psychologist.

      It was good to have her support and she provided me with suggestions and  resources I needed. Those were practical approaches to adapting and coping and dealing with all kinds of difficulties. I don't feel any stigma associated with it, it was a good thing to do.

      Perhaps this was the kind of support that your specialist was trying to suggest. My rheumatologist said at the time it was not always a well received suggestion, but he wished all his patients were able to have an opportunity to have some psychological support. It is not a negative reflection on you as a person. It is not a replacement for medical treatment of your RA, it might be a useful aspect of it. And unlike me, a psychologist is trained to listen and help you find ways through stuff.

    • Posted

      Hi Blair,

      Many thanks for your response.

      I attended the appointment with my mum, in which the comment of counseling cropped up. During the course into her research into side effects of methotrexate, the name Aplastic Anaemia came up. Something that set off huge warning bells. In 1985 Aplastic Anaemia took my brother's life in less than six months. Instantaneously my mum didn't want to take that particular risk, not without a good argument as to why she should and I can't blame her. The rheumatologist may be clued up on the symptoms of RA but we know all there is to know about Aplastic Anaemia. She went into the consultation and validly explained this fear and as he could not provide enough persuasive evidence to get her to take the medication... he honed in on the bereaved mother and suggested she got counselling and came back if she changed her mind. Now I'm not a rheumatologist or a psychologist but even i can see its a valid point to raise. We've done our research and admittedly know more of Aplastic Anaemia now than probably any other medical condition and it's aggressive and merciless. If there's any risk of any of us in this family facing it again... well pull the opposite way. It's not unreasonable. My brother just missed his 2nd birthday and we have all been counselled for that for years. Depression is something we are all open about, it's been a fact of our lives and in so far as we've learned to live our lives, the facts are something you learn to live with but never accept.

      In its simple form... my mum doesn't want to get Aplastic Anaemia treating RA. Tell her it won't happen, she'll take the medications. A counsellor or psychiatrist can't do that.

      He was quite a brusque, impatient man without one iota of compassion. It was less of a 'get some counselling to help you' and was more geared toward 'just get over it'. There was a lot of poo pooing and not enough scientific evidence to validate why she should come to the conclusion he wanted.

      This is a very difficult road and there are hard decisions. Only scientific evidence will get her where she's going and that's what we're trying hard to find in the form of practical medical research and finding out how others are faring following the same path.

      We are none of us shy of seeking mental guidance but not as a method of swaying away from a question we want answering... how great is the Aplastic Anaemia risk? It's that simple. He made us feel like idiots. And yes, mental idiots. We are not.

      It's a valid point.

      I am certain there are a lot of dedicated rheumatologists out there with everyone's best interests in mind, sadly this experience was downright insulting in our case.

      Kindest regards,

      Gillian

    • Posted

      Thanks Gillian for such a thorough and patient response. 

      I am sorry if my answer seemed at all patronising. Maybe psychological advice was a way bigger thing to me than you after all! :-)

      I'd go back to my only other suggestion, do what you can to get another rheumatologist. 

      I am an relative amateur in this. I had one previous difficult learning curve in dealing with illness when I became slowly but seriously ill nearly 10 years ago. I feel my GP let me down then and though I was a slow learner, it made me more critical, questioning and active about how I was treated. I say slow, as I didn't quit him until last year, after he pretty much fobbed me off when I first reported my RA symptoms to him. 

      So I guess I am just saying I now understand more of your caution. I know nothing of aplastic anemia and had to look it up just to respond this time. The odds look pretty low, but perhaps there are predispositions or other  risk factors and you were obviously right to ask if Janet's risk is therefore greater.

      Please could I suggest that you look up the blog of an Australian Rheumatologist, Irwin Lim, BJC Health. He might enter into some correspondence with you.

      If there is a medical council or tribunal available wherever you are, maybe they would advise you.

    • Posted

      .Aplastic anaemia was a rare disease, these days not so much, the DAMARDS cause the effects on a smaller scale but because the bone marrow is healthy it can recover, however my son was the second child in less than a mile radius with the disease, this should never have happened if you look at the odds, a million to one chance of it happening to one child both children died. I wondered if whatever property (and it was environmental) has somehow perdispositioned me to RA because of similarities, at the time of Andrews illness others developed cancer, leukemia, rare tumours, epidemiologists became involved and despite large swathes in Andrews notes about pesticides the cause was never declared, termed idiopathic despite the epidemiologist saying she had found something, she was taken off the case, These things are what make me wary of the medical profession in general. I know sulfasalazine being a sulfa drug can cause aplastic anaemia but again as long as the bone marrow is healthy it will recover. The DAMARDS kill good cells as well as bad and that is what bothers me, they have NO cure just remission and that for me I not good enough, yes I will have to take an option but really the DAMARDS are not my choice. I was however talking to NRAS yesterday and they are talking more about the biologics which target the specific cells if they can determine which cells and they say this is promising. For me its a case of start simply, listen to my body, be discerning anything more floors me. I have seen bone marrow destruction at its worst and it is horrifying, that is why I am so scared. Thanks for all your input Blair, as my daughter said mental health is not a stigma to us, we suffer badly and we seek out all available avenues, I have taken on board all your advice to know someone understands is a blessing.

      ​+

    • Posted

      Hi Janet, I keep reading your posts raising so many interesting (and sad) points. In my experience doctors are often so certain when they advise because of the 'current' evidence, but it is only evidence available at the time - obviously? I am a registered nurse who worked in cardiology for near on 40 years and have great respect for my medical colleagues. The longer I worked with them I realised the less and less I knew! Having said that I also have personal experience which makes me feel very cynical sometimes. It's very  interesting what you say about the epidemiologist for instance. Have you heard about the non pharmacological treatment being researched / developed? I am very interested in this and would love to be involved in the research. I do think it's a case of trial and error with a range of highly toxic drugs. Very best wishes to you. Carol x

  • Posted

    Hi Janet, it sounds like you have had a lousy time but much of what you say, I suspect, many of us here will relate to. It certainly took me time to adjust and come to terms with my diagnosis of psoriatic arthritis. A range of drugs were discussed initially with me including steroids and I thought no, "I don't need those." "I'm not that bad."  I was so looking forward to looking after my new grandchildren on retirement and was gutted. But the flare ups were bad. I had to retire 'early' (61years) and yes, I thought it was the beginning of the end at times. Wrong! I've just had an amazing summer (and had a fabulous day today with my 2 and 5 year old granddaughters walking and boat rides). Not completely pain free and, I've had infections due to my reduced immune system but it's not stopped me getting on with my life and enjoying my fantastic family. I'm afraid I am one who does wish she had never started Methotrexate so I think you are absolutely right to question your medication. Although I agree the doctors certainly do not set out to cause any harm it isn't them taking the risk is it? And, no matter how long ago you lost your son I suspect it feels like it could have been yesterday. Of course you are wary, even suspicious. We all need to question. It's our body after all. I'm sure you will get your head around it all. Please don't feel alone. You're not. And how nice to see you're daughter reply on here. Good luck. Carol x

    • Posted

      Thank you so much, I love the encouragement here and the fact that others have faced the overwhelming sensation that I feel. I am taking hydroxychlorquine at the moment but that is all. I have taken painkillers and naproxen on bad days but it is minimal. I have a grandson he will be three in a couple of weeks, I am fighting to keep the energy ad energy and mobility that I have right now, I don't want to deteriorate which is why I want to find the right treatment plan.. So grateful for anyone who responds, thank you  for sharing.

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