Upset at rheumy nurse attitude

So diagnosed last September. Since then I have failed on hydroxycholquinine, methotrexate three times and sulfasalizine twice. I was then put on 10mg leflunomide a month ago. My RA symptoms have flared to the extent I can hardly walk, can't sleep and the pain is intense. I feel like I have a bad dose of flu. I've developed blurred vision, have had ulcers in my throat for three weeks and diahorrea I have no warning about. I've never felt so ill. My GP asked me to call the hospital for advice about my medication as he was concerned.

Finally got through today " oh it's you our problem patient, what is it this time?"

I explain my symptoms, well RA does make you feel like you've got flu (said in dismissive, other people don't complain about it voice.

What do you want to do? Do you want to stop your medication? I don't know what to do that's why I've called. Well if you say you've got those side effects (disbelieving voice) then you can. Yes but I'm worried that I've failed on four dmards and concerned about what is best for me. Yes you seem to get all the listed side effect for each drug don't you (sarcastic voice). I know but I went to the doctors to make sure I wasn't just over reacting but he says I look terrible. Well it sounds like YOU want to stop taking your medication. No I just wonde what I should do. Well it sounds like YOU don't want to take your medication so if YOU want to stop you should then you can explain it to the consultant when you see them in a fortnight. Yes okay but I only want to do what is best within the limits. Well that's a conversation YOU need to have with the consultant isn't it. I have other patients to talk to goodbye.

No one can quite understand why having been diagnosed I've got worse not better and my other half is getting despairing about how ill the medication is making me. People have started to infer it's somehow my fault and now the tone of the rheumy nurse was other people put up with it. Only my GPs believe this level of side effects is unacceptable. The leflunomide is making me a prisoner in my own home at the moment and the more I take the worse I get though the rheumy nurse says other people find the side effects wear off and i am just giving in. The reality is I've taken everything they've given me and with the other dmards the side effects just got worse.

Sorry for the long post but I just got off the phone and burst in to tears. To feel this unwell and then be made to feel like a problem was more than I could take today

68 Replies

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  • I went through the same on those very tablets my rhumatolagist took me off them and i continued with pain relive only i decided to try cutting out milk and cheese and sugars for six week my swelling in hands and feet improved don't get me wrong i get the pain i still have atheritus but it's great not to feel so sick and ill at least i can mull my way through the brain fog i go back to the rhumatolagist in august to see what's next but he was pleased with me flare ups dampened down first time in 3years it's trial and error

  • Dietary changes really can help. No side effects😊Really worth trying. Nothing to lose only possibly gain.

  • I do already eat a healthy diet but I've also been on the receiving end of the if you cut everything out you will be cured so it's your fault brigade. It's odd because we never tell cancer patients it's their fault because they don't 'eat clean' or take the meds they are supposed to. I asked my rheumatologist about strict diets and she said my RA was too aggressive to not be medicated

  • Diets can be combined with meds, often with good results. Diet modeification is just an other form of treatment. Can eather be tried or not by AI sufferers. Nothing right or wrong about it. Many cancer patients have tried dietary and nontoxic treatments with good results as well. There is a lot of new research around cancer as well as other AI diseases. We actually live in quite exciting times with a surge of new research and information about diseases. Take care😊

  • If you've failed on 4 dmards then they should be moving onto Biologics and at the next consultation I'd be pushing for it, also report the nurse who spoke to you in that manner, I know we can all have off days but courtesy and manners cost nothing and you wouldn't be phoning her up if you didn't have a problem😤

  • Thanks yes it seems my area follows the NICE guidelines strictly and no matter how much swelling is visible my CRP is always normal so I can never get past about 4.77

    They keep telling me there are lots of alternatives before we get to biologics?

  • Have a look at the NRAS website regarding DAS28 scores and biologic information - at both the criteria that is needed before being accepted for biologics and the various drugs available before your appointment to give you some background info and whether you feel you would fit the criteria. My body does not like DMARD's but certain biologics have been good and much less side effects. A week off the meds will give you the knowledge of how much the side effects are messing with you. Farm

  • I said that to the nurse that a week off would show how much was the side effects of the drugs and she just snorted and put the phone down. Thing is I was speaking to someone in my area the other day who said it took a year to find one for her so I know I can't be the only person they are dealing with who can't take them

  • If you're on leflunomide, it stays in the system for ages!

  • Firstly that Rheumy nurse needs a good talking to! Try to find out who her manager Is & copy her your post. You have enough to put up with without being spoken to in that way.

    You were only diagnosed 6 months ago & you have been prescribed almost more drugs than I have taken in 18 years of RA!

    How long did you try each one? I don't know but possibly you were given the next drug when the previous one was still in yout blood stream, so the second drug might not have been the problem?

    I had to come off Mtx after 7 years, but the side effects it caused lasted at least 6 months after I stopped taking it & during that time I took no Dmards, just had Depomedrone injections, before I tried another drug.

    Try to have a discussion along these lines with your Rheumy when you see him........if he won't agree to you trying Depo then another Dmard after a few months, change to another rheumatologist. Your GP sounds as if he agrees things can't continue like this, so he would probably refer you to another Consultant.

    Hope things improve very soon.

  • The sulfasalazine gave me a severe headache and a dangerously fast pulse. The methotrexate hospitalized me and the hydroxycholquinine made me so dizzy I couldn't stand up.

    I've had two depo injections but with no effect. Consultant acknowledged I clearly didn't respond to the depo injections as there was no change in swelling etc.

    My consultant is usually lovely but the attitude of the nurse has left me worried about the appointment now.

    whilst rotten side effects are awful if you are working you also just can't afford to take three months off each time in the hope side effects that mean you cant function might just go.

  • You really sound as if you have been very unlucky to have such dreadful side effects from those three DMards.

    However, I'm sure your consultant will continue to be sympathetic, but I would mention how upset you were with the nurse's attitude.

    There is another type of cortisone injection you can have besides Depomedrone ....I can't recall the name as I have never needed to take it...but ask your Rheumy if you could try another type of injection.

    I hope when you next see him/ her something else can be found to help you.

  • I tried three brands of hydroxy until I found one I could tolerate. I now take Zentiva brand and have no problems with this. Like you other brands made me feel dizzy and sick. May be worth a try

  • What is depomedrone, agedcrone?

  • Hi, 8080

    It's the name for Methylprednisolone - a corticosteroid.

    I have found it God's gift to calm down a flare ...for me it can last up to three months, but as you will see in this site it just doesn't work for some people.

    I was given it because oral Prednisolone has the most dreadful side effects for me

    Thankfully since I have had RTX infusions ( last October) I haven't needed it.

  • Thank you agedcrone! I have not had any experience with corticosteroids.....does it make your face kind of swell up or am I thinking of the old days? I had a friend w/ RA ( 20 yrs. ago ) and her face became moon -shaped. It scared me when I was diagnosed, because my face is already round! XO

  • No my face hasn't swelled up at all & I have had 3 or 4 Depo injections a year for about the last four years.

    I believe oral Prednisolone can cause facial puffiness, but I have no personal experience of that.

  • Thanks! I imagine things are different now with drugs, or maybe it was just her reaction to a steroid.

  • I think it can still happen because steroid tablets can cause an excess of Cortisol to be released which is what causes the puffy face.

    I think nowadays doctors are much more aware of side effects & have more knowledge to deal,with it......so hopefully it doesn't happen very often.

    These days rheumatologists try to get their patients on to Dmards & discontinue oral Prednisolone ASAP.

  • Aha! Thanks for the info.

  • I'm so sorry. It's totally unacceptable to be spoken to like that. I'm afraid I had a very similar experience. It really put me off contacting rheumatology again.

    It turned out I was allergic to the first DMARD I was put on! I felt so let down.

    Do you have PALS where you are?

  • Do try and contact PALs,every hospital has an office.Is it possible that because you were feeling so ill and depressed you misread the nurse?just an idea.

  • Don't be in a hurry to try any faddy diets unless your sure your arthritis isn't inherited as apparently it makes a difference.

  • Hi Rosiesmummy. I know mine definitely is inherited. Does it make a difference then?

  • Apparently yes,I was told by my consultant that diets are ineffective if arthritis is inherited,and things like minimising stress are far more important

  • Ah that's interesting. I know stress has a massive effect on mine. My grandmother and great grandmother had RA severely

  • Stress is a important player that changes the biochemistry and the normal function of the immune system. Diet and the microbiome regulates normal immune reactions as well. It's very individual how your microbiome functions the best possible way, what food is needed depends on individual differences.

  • The genetics is just one player. No certainty that will break out needs more enviromental and internal triggers to break out.

  • I think the thinking is isn't it that it's the genetic factor that makes you more predisposed to whatever trigger it is that causes it but the jury is out on what trigger may be and isn't the fault of the person

  • It's still not a question of foult. Bad luck and lack of knowledge. more so. There were so many things I didn't know about my body before RA. I really wish I had known more, what I know today, and truly believe I could have supported my body in a way that may have made a difference🤔😕

  • I work as a nurse on the frontline in the NHS and would be appalled if I heard any professional talk like this. You need to contact PALS (patient advice and liaison service), why should you struggle for 2 weeks till clinic all because of this nurses attitude. They are good at acting as an intermediary, and if you don't want to speak on the phone most have an online reporting form. You could copy and paste your message here. Give dates and times, and name of nurse if known.

  • Sorry you had to experience that level of neglect as far as supportive advise goes. I cannot advise on meds as Ive only been diagnosed a year so still very much learning myself. I will however give some advise about what to do with regards to the rheumatology nurse. I work in a hospital and know that for the majority of people who work in a hospital we are sympathetic and aim to provide the best care possible to all our patients. The way you have been spoken to is absolutely disgusting. You really do need to put in a complaint because sadly not everyone is suited and if no one ever complained the people who shouldn't be in the care industry get to stay. The call may have been recorded too so make sure you give as much detail as possible.

    Please don't let one person ever put you off calling again. Not everyone is the same.

  • Thank you everyone for your really supportive messages. Good to know it's not just me

  • Hi frankiefarr! Might I ask how old the nurse was? I'm just asking because my GP , who was always great, started becoming actually " mean"! Of course I thought I had done something, or was I imagining it? But I have recently heard that her main nurse left her, and it is thought maybe she's frustrated by something mental? ( alzheimers ? ) . So I left and found another GP. I feel badly for her, but neither I nor you should have to be treated in that manner. I have not reported her, but have spread the word that there is something "off" with her. Your situation seems maybe easier to report this witch? You are not at fault for anything!

  • Wow Frankiefarr, I am so very sorry you were treated that way. I had a run in with the head nurse at my clinic. I called her nurse 'Cratchet' . Her first offence, when I was initially diagnosed was she told me to stop reading. I was a little too taken aback to respond to her. Three drug reactions later, she calls to schedule Actemra infusions. In Canada, drug companies and MSP have to preapprove Biologics so I submitted the paper work after failing on Orencia. (I developed drug induced Pityriasis). So I explained to her I was not ready to start Actemra. She says why not. I explain that I have both cardiac issues and diverticulosis. Both are an added risk for this particular drug. My Rheumy was not aware of this..She then has the nerve to say to me " Doctor knows best".

    I got dressed and drove to clinic , which is an hour away. I insisted on meeting with her and in no uncertain terms told her I would not tolerate Her patronizing attitude one minute longer. I have nine years post secondary education and worked with special needs children as a therapist. I also made it clear my doctors were aware of just how well I do know every test, the meaning of the results. I investigate every new drug Ext. But all that aside, drag yourself into the 21st century. I went undiagnosed at least ten years, that is likely why I am so drug resistant. If Doctor knew best I would not be in this position. Moreover, as the head nurse in a clinic specializing in Rheumatology , she should be well versed on all drugs being dispensed and there potential risks. I said ,' you are simply angry that I apparently know your job better than you do.' My Rheumatologist called me at home later that day. She apologized on nurses behalf. She has ensured that a junior nurse gives me treatments but done is done. I said my piece and it is over.

    I know how hard they work but that does not excuse her behaviour. We should expect better from someone in a position to witness the devastation of chronic illness everyday. But it seems to do the opposite. Not all certainly. I have tremendous respect for all health care professionals but that does not mean I will not demand the same respect in return. Nor should you. We all know from experience, how devastating this illness can be. It took sixteen months to reduce inflammation, not an easy time. Take heart, they will find a treatment that provides some relief. I hope you file a formal complaint against this nurse. I made it very clear, if there were any further conflict with her that I would file a formal complaint with MSP. I do not apologize for my harshness. I have suffered so many Idignaties that I will not tolerate any unnecessary ones. Shame on her.

  • thoroughly agre! as amusd as we have a similar rhemy nurse here we call 'cratchett' too. we = me n sisterhood xx

  • I found these specialist nurses seemed to think they were God. I always thought that they were in charge and not the consultant. They were just useless for me.

    You could always complain or ask help through PALS There should be an office in each hospital.

    Also I would ring your consultants secretary and ask for emergency appointment .

  • This type of experience makes me incandescent! I haven't even read the replies Frankie but I know others will be outraged too. It's well known that Leflunomide can cause diarrhoea- I refused point blank to continue when that started. You haven't 'failed' on anything, the drugs have failed you! As has your utterly unprofessional rheumatology nurse. I suggest a formal letter of complaint and a demand that you see anyone but them in future. We are service users. The NHS is not free, we usually have paid some NI and if not others contributions look after those who aren't able to earn. My point is we're not receiving alms and we shouldn't have to behave as if we're lucky to be seen by these people. The majority of HPs I come across are over-worked dedicated clinicians who'd be horrified by your experience. I hope you'll feel better when you have told your Consultant how I'll you feel and are quite naturally desperate for solutions. You can choose where you are treated and by whom within the NHS by the way so don't feel stuck if this mob let you down again. Grrrrr!!

  • Thanks Witness2 xx

  • Others have commented on what wen on - so i will focus on the drugs.

    I am on Enbrel which I have to say was life changing. So a biologic would me a good aim. They are funded centrally to standard criteria so the consultant has no vested interest money wise other than ensuring they are fair with the assessment.

    I was on methotrexate for 2 years. Nil problems, then I could not stay awake for 24 hours after i took it so I started on a drug roundabout.

    My only comment would be that you seem to have tried a lot in a short period. They do mostly have side effects and these side effects tend to moderate after a few weeks - say 2-4 - the question being do they stop the arthritis or not? If not move on.

    I would just ensure that you are actually giving any one drug ( or intentional combination of drugs) time to work and time for you to see if you can get over the side effects or not.

    It is balance of course between side effects, and the underlying arthritis and there may unfortunately be a choice to be made. I have now not had a flare for 4 years on Enbrel. Before that I would regularly go up and down stairs on my bum as i was not able to take stairs and so on. Getting into a car was near on impossible. A few weeks ago I went skiing with my kids and i often cycle 10 miles on my bike so on the right drugs can and do work which may give you some hope.

  • Hi have given each at least a month apart from the sulfasalazine that had life threatening implications

  • But I also think there are issues if you work. You can't afford to be laid up unable to function, drive etc for 3 months at a time on the off chance the side effects might decrease. Having said that the side effects have been catastrophic not mild

  • Hi jeremylondon... I'm relatively new to this disease, but I am confused....if you have had no flares for 4 years, do you have to keep taking the med? What is considered "remission"? Thanks, 8080

  • Remission is as I understand it symptom free, however ra is a cronic condition and it is only in remission due to the drugs. Still take sulphasalasine but this is being phased out.

    The issue with stopping all medication is that it is only a matter of time until it comes back and then you start over which is what is to be avoided as then the whole cycle of joint damage , trying to calm down the flares etc starts again.

    So unless you develop side effects that require a change of approach you are on it for life. Doses might reduce but I don't think biological work on a reduced basis ( i.e. Every 2 weeks as opposed to one).

  • Okay, that makes sense now. Thanks Jeremy!

  • I've had exactly the same experience with my Rheumatology nurse. I don't see the point in having them. Her attitude was what do you want me to do about it? She to,d me that she couldn't do anything for me and it was the GP's responsibility to help me. She was so awful to me, I complained to PALS who were equally useless. Their attitude was to investigate by taking her story as gospel and I was made to feel like I was the awkward, difficult one. Luckily, my saving grace is that my family have been amazing and my GP is brilliant. Her exact words were to forget about them and she would help me. While my RA is still not under control, I get a call after every blood test( every 2 weeks because they are all over the place) and she has sorted out my meds, pain relief and called Rheumatology if she felt they needed to step up. Good luck, it's an awful disease to have and I often feel people don't really understand! Big hugs.xxx

  • I really feel for you ,I am very lucky my Rheumatologist is great I have her phone Number , lots of the tablets don't agree with me, so days I feel like going to sleep and not wake up,just keep trying. Every one is rooting for you, I would complain about that nurse you don't have to put up with that tone of voice kindest regards Elizabeth

  • 8080 asked why take the meds of no flare fit 4 years....my understanding was that that person's RA had been controlled by Enbrel, also known as remission. There is currently no cure for RA and in my humble opinion, even those having success on diets are only controlling it rather than curing it. But I realise that's an inflammatory remark around here!

  • Nothing inflammatory in that remark😊That's just how it is diet is just another way to control RA. The good thing is that it is not toxic and it does not stop working at some point and it does not tax your body in any way, on the contrary. For those for whom it works it is in my view a better way to control the illness. Unfortunately though does not work for everyone, but neither do the meds.😕

  • I admire the balance you bring to this debate Simba and I recognise how determined you are to share what you believe is a healthy way forward.

    Nonetheless I realise increasingly that I am resistant to receiving dietary advice and that having been part of the 'Leaky Gut is The Answer' groundswell 35 years ago (which ended badly for me) I'm not sure if my resistance is caused purely by inertia (because I know diet involves a huge effort and sacrifice), or a is a defence against further disappointment!

    What stops me from having another go is my strong belief that if leaky gut was the cause of RA, then pharma would be racing towards the remedy for a leaky gut, and I've heard nothing to suggest they are or ever have, have you?

  • The leaky gut, the permability of the gut I see only as one player in RA. Since our immune system largly is regulated by the gut, to me it seems only logical to get the gut in good shape and do all we can to protect its normal microbiome. But we should not stop here. I believe that we all have individual weak points both in our normal immune system as well as other things in our lives. There are no easy answers but I find that doing my own research, understanding as well as I can my own story makes it easier to live with RA.

  • I agree. Thank you!

  • Hi, I feel really bad for you, I was on all the meds listed and the only one I was okay taking was sulphursalasine and only after taking it for 5 years and because I came out in a rash which can happen. I am now back taking as my rhumey stopped luflunomide for the same side effects as your self and many others. I was like a prisoner in my home. You are the same as many others when it comes to the side effects and it isn't unusual as everyone reacts differently and you should be able to take biologics after failing on 3 dmards. I went on Embrel after failing on mtx and that worked great until it had to be stopped due to other medical issues for 6 weeks. It didn't work the same when I went back to the injections which happens sometimes. My rhumey then applied for me to try Tocizumab infusions then injections which I am still having although I found the Infusions wirked better than the injections and my rhumey is considering changing to another type of injection if my pain relief doesn't improve in 10 weeks. I am lucky as I have a brilliant rhumey. Everyone reacts differently and I hope this has helped. I would speak to someone about the way you have been spoken to and also see if you can change your Rheumy if you don't get the medications you need. You don't need to suffer, RA is bad enough without having to deal with doctors or nurses lack of empathy and understanding. You are not alone as everyone on here are very supportive, understanding and kind.

    Take care, good luck with sorting everything out. xx

  • Thanks Angels-delight. I feel so anxious now about my appointment after the rheumy nurse that I was contemplating continuing taking it until I saw her but it has really made me feel ill. My hospital seems to be taking a put up and shut up attitude but I can't see the point of taking something that leaves you unable to function :(

  • I had the same problem.

    I was ill on Methotrexate tablets so they tried me on another drug they depressed me so they put me on Enbrel injections and I kept getting UTI's so they decided on an infusion and I had an allergic reaction so I'm now back on Methotrexate but I inject and I'm managing Ok.

    Sounds as though I'm lucky to have a nice Rhumy team looking after me as I have never been spoken to like you have.

    I am feeling so sorry for you. Go back and discuss the above with your GP perhaps you can go to a different Hospital with a sympathetic team.

    Good luck.

    Delia. Xx

  • That is awful. Is there another hospital/doctor you could try. My hospital/consultant and nurse have all been fabulous.

  • report her to PACE, dont care if she is having a bad day, not your problem. let PACE know how you was treated and how its left you feeling. you have done nothing wrong, I normal expect this attitude to from OLD Dinosaurs, who are incapable of moving forward. hope you are feeling better today warmest Craig

  • Dear Frankie

    I am shocked to read your post. The nurse's attitude is totally unacceptable and should most definitely be addressed. You can make a complaint via PALs (Patient Advice Liaison Service) at your hospital.

    One thing I'd like to say is "YOU" have not failed your treatment, your treatments have FAILED to get your disease under control. I regularly pull healthcare professionals up on their use of language when communicating about this. When saying the patient has failed on X or Y meds it gives the impression I feel that they haven't tried hard enough or that it's their fault. It is not anyone's fault when a medication doesn't work, it is the medicine that is failing to be effective.

    Please do give our helpline call 0800 298 7650 if there is anything you feel NRAS can do to help in this situation or if you would like to be put in touch with one of our telephone support volunteers to have a chat with directly ...often talking about things like this can really help like this online forum but a bit more personal.

    Remember if this nurse has an attitude like this towards you, I would guess you won't be the only one that she has behaved like this to. By raising the issue you'd also be helping others perhaps as well.

    Remember NRAS is here to help email helpline@nras.org.uk or give us a call.

  • Thanks Clare I was thinking about calling. The nurse I spoke to is the senior nurse in the team. I also had problems with side effects from the oral steroids a couple of months ago and my GP took me off them, however the pain increased and I called the nurses to see if I could start again. I spoke to another of the senior nurses and she told me to make my mind up and that I needed to "suck it up" regarding the side effects. I am now wondering if she has written something on my notes and the nurse I spoke to last week changed her attitude as soon as she pulled up my hospital records and then became impatient. I have always given each dmard at least a month and the leflunomide 5 weeks. None have worked which I know is because I've not been on them long enough but that isn't the problem, it's the horrendous side effects. I have been made to feel that this is somehow my fault and that I'm not trying and that I'm complaining about side effects other people put up with. The last nurse as much as said this. But really? Blurred vision, a pulse rate of 170, extreme nausea, ulcers in my throats for weeks at a time etc. I live in the country, if I can't drive I can't even leave my house. The conversation last week has left me very stressed about my appointment on the 6th April now. I'm worried that I have been marked down as non compliant and that I will receive no further treatment despite the pain.

  • Keep your chin up, it is unfortunate that there are some uncaring people in the caring profession and they really should find another job. I get the same problems with call centres and even, now gone, a receptionist at my practice. It does my blood pressure no good but I can look forward to them eventually joining me downstairs where it is nice and hot, revenge is sweet. At least I still have a sense of humour, keep yours and next time you see the consultant or even better, the nurse, you can voice your opinion of their attitude, the phone is no excuse for that behaviour and the face to face shaming is not what they expect.

  • I have read your post & the many helpful replies. The nurse was completely out of order speaking to you in that manner and that needs dealing with.

    Putting that aside, you've had a lot of drugs in 6 months. Your body is being put through a lot of stress because of it. It seems as though you've are becoming sensitive because you've still got possibly 3 drugs in your system right now. What I've learnt in the 25 years of having Ra, is that you have to give at least 3 months for you to used to the medication for side effects to calm down & for it to work. Some even 6 months. I know the sulfasalazine you had to be taken off it as the side effects really was severe. I understand that you work, but you have a life long disease & it may be that you will have to take time off work. If you don't then you're not giving yourself for the medication to work & for the side effects to calm down. What you can do now may be beneficial for the future, 3 months isn't a long time.

    The steroid injections calm inflammation down, what are your inflammation rates on your bloods like? These injections won't always work but are used to determine if your pain & swelling is caused by inflammation or by something else.

    Hang on in there until you see your Consultant, keep taking your meds & let's hope the Consultant helps next time. It's 2 weeks isn't it?

    Good luck.

  • My inflammatory markers are always normal even if I'm sat with the consultant and she's saying how swollen all the joints are. She says some people are just like that. I have been off work since January due to the disease and side effects, a serious issue being not able to drive with blurred vision etc. I am now not receiving an income and will be sacked if I take more time off. Some of us just don't have an option to take 6 months off. Originally the consultant told me they keep on trying until they find one that is tolerable.

  • Have you got an occupational health team with your job or access to one? They would be the ones to contact for support as you'll have rights with Equality Act. Also a union? They can't just sack you, against the law surely? I'm just trying to help you

  • Hiya yes it was the occupational health consultant who stopped me working. My local authority has a strict HR policy on sickness. You receive written warnings (no matter why you are off) and then they are allowed to dismiss you after six months if you do not return as it if not in the authority's best interests, I find it irritating the nurse is mentioning non compliance because they have had to take me off the meds when I've slavishly taken everything they've given me. I am at a point when I'm having to apologise for developing a side effect. Crazy. I shouldn't have to apologise for shitting myself in my own car because I can't make it to a toilet in time. I should not have to apologise for being so dizzy I can't stand up. For me living in a rural area a mile from a road, five miles from a shop, that means not being able to leave my house to buy a bottle of milk to have a cup of tea.

    I know you are xxxx

  • I'm just sat wondering in what crazy world I as a patient have to apologise for developing serious side effects on a drug. They have said they think I am more susceptible because of other previous conditions so that makes it even worse

  • Hang on in there. You'll tell your Consultant what's happening about your job won't you? He needs to know the predicament you're in. I really hope he can help. Your local authority sound much like the NHS & their sickness policies. They're brutal too. It's not fair & is unjust. ACAS may be able to give you advice on sickness & employment law.

  • Hi Frankie, Diet has really helped me in the past. I also found that drinking spring water or at least filtered water helped where I lived when I was diagnosed. If you try an exclusion diet try excluding a food, say milk, for 4-5 days and then try a small amount of it and see what happens. I had to exclude Cow's milk in all its forms (including cheese, yoghurt, dried milk and whey powder in foods), beef, white fish, soya and nuts. You have to read the labels when you're out shopping and eating out can be tricky but the benefits were worth it. I also found that I could use goat's milk and cheese and now routinely use rice milk.

    I also found that after a while I could include the foods that affected me every few days and over time was able to eat things more regularly again.

    Give it a try but only try one thing/group at a time or it'll be harder to work out what's affecting you.

    Hope you feel better soon and that your consultant gets you onto biologics. I've been on Enbrel for 5 years now and it's been a total revelation for me - it gave me my life back.

    Thinking of you,

    Mary

  • I have OA and sometimes the pain can be debilitating. I know little about RA other than it makes the patient feel just as you have described. The nurse you spoke to sound to me as if she should find another job. I was a medical secretary for many years and, to be frank, sometimes I did feel that a particular patient was a bit of a nuisance, wanting an appointment brought forward, or wanting me to ask the consultant something for her. BUT it was my job to reassure someone who was in pain or feeling bad, not make her feel a nuisance. No matter how bad a day a member of staff is having, they should always remember they are handling people who are unwell, feeling awful or perhaps depressed and it is the job of that staff member, no matter what their position, to do their best to make the patient feel they are not a nuisance and, if they have no useful advice to offer, inform the patient they will speak to someone and get back to them. If that nurse had problems she should have had the ability to leave them at home. I am retired now and on the patient side of the desk; I have been very lucky and never had someone be as rude and unsympathetic as the person you describe. I hope you are now feeling better and have had your unpleasant symptoms sorted out. OA is bad enough, I have no idea how I would cope with RA. I have a couple of friends who have both and I can see it is awful.

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