I saw a new rheumatologist today. I voiced my concerns that my methotrexate didn't seem to be stopping my arthritis as I was having pain in joints that haven't flared for years and my knees are permanently swollen. I also said I was wary of taking something with so many health risks. I said I was also worried that I was constantly exhausted even if I hadn't been physically active.
He was quite brisk and just pointed out that my blood tests were fine. I explained that they would be because I am sero-negative and even when my arthritis is so bad I can't sit up it still doesn't show in my blood but he just sighed and said "well yes but, all arthritis medication has side effects." I explained that I was prepared to take some risks if the medication was working but it didn't seem worth the risk if it wasn't. I said my epilepsy medication has risks but I consider it worth the risks because I have been fit free for two years. He prodded my knees and said "well they don't hurt." Actually they do but I am sort of used to them hurting if that makes any sense. As he's prodding them and I am thinking "ouch" he is deciding that they don't hurt!
I said "look I know you know more about arthritis than me, but I know more about my arthritis than anyone and I know what's normal for me and what isn't." I felt like my presence there was a nuisance to him. As though he would rather I just agreed with him and asked no questions and just swallowed my pills, like a good girl.
We ended the appointment with my agreeing to stay on the methotrexate for a couple of weeks and then I am going to be put onto injections to see if the drug is more effective for me this way, without increasing the dose.
I have finally after much nagging been given x-rays. I haven't had them done for over a decade (except my chest prior to going onto mthx). I am supposed to have them done at least every two years.
I have been referred to a physiotherapist, and someone with be showing me how to inject the methotrexate, but that's a bit worrying. What if I can't? I mean I know it isn't very painful. I have RA and have had a baby for heavens sake, I'm not scared of a needle, but what if I can't push the thing in?
So after me spilling my guts, does anyone find their rheumatologist a bit well rude? Is it hard to inject methotrexate? and am I unusual in feeling so tired physically and emotionally every day that it's like walking through treacle?
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pinksugarmouse
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Well done for challenging your Rheumatologist. Not good enough if he's not really listening although the plan seems sensible. If he persists with that attitude, I suggest you request a transfer to another Consultant if there is one? And tell him why. They can be excused some compassion fatigue but need to realise we notice and that hurts as much as our joints!
... I can't inject Methotrexate one handed. The nurse showed me how to hold the pen at a right angle to my left thigh, whilst seated, and I use the base of my thumb on my other hand to push the end of the pen. Voila! It's only 1-2 seconds, very quick. I've had RA 45 years and very deformed hands. Good luck.
I have used the injections in the past and they are not hard to do. As to your consultant,i would contact PALS at your hospital and complain about his attitude towards you. xxxx
I agree about contacting PALS. I had to a few weeks ago as my hubby was waiting over two weeks for his prescription. Consultant blaming lur gp. Our GP blaming consultant etc etc etc. In the meantime my hubby was in more extreme pain every day! It was heartbreaking to watch. Within a day PALS got his prescription through and an appt with gp to discuss. So grateful to PALS. All the best. Sue x
the mhthx isn't an injection as such its a pen - you just press one end next to your skin and press the other end and that's it - easy - I hardly feel a thing - you wont -promise x
It sounds like your disease is more active right now and that will make you feel fatigued and emotional. I use the Metoject pens as I couldn't tolerate oral mtx and they are much better. On the pills I had headaches, nausea , hairloss and bad fatigue but I get none of this on the Metoject.
I needed Humira in the end to get my disease under control. I inject mtx every Wednesday and Humira every other Sunday. I hate all these drugs as well but we really have no choice. I can honestly say though that I feel better than I have in years. Best of luck, I hope it works for you too x
Oh yes, some medics have REALLY poor communication and social skills! It drives me nuts, especially because we often have no choice about who we see. I hope it will improve in the NHS, as 'patient experience' becomes more important, and social media gives us a voice and a way of seeing that other people have similar experiences. Good hospitals are addressing this: I participated in a scheme run by my local teaching hospital recently, where two first year medical students came to visit me at home, just to listen to me waffling on about my life and how my long term health conditions affect me! They then go back and do presentations for their classmates, so they get to hear about a range of patients' experiences. My two said they found it a real 'eye opener' and were quite shocked by the trouble I have had getting diagnosed... Hopefully they'll become better doctors than their predecessors!
I can't comment on MTX injections, because I'm on tablets. But my bro injects (another med) every day, and says it's easier than you think. Good luck!
I inject and it is easy to do. You only need light pressure. I too feel like I'm permanently exhausted no matter how much sleep I get I saw my rheumatologist recently and she has asked for X rays and scans. In her letter she says there may be a connective tissue problem so need more bloods. Just what I need. Anyway hopefully you will feel better on the injections . They really are simple to do. Goodnluck
I don't find my Rheumy rude, when I see her, just not as thorough as my previous ones, she seems to miss signs & the biggie was not examining my feet. If you're not happy with yours though I'd ask if you can be transferred to someone else within the department, if you wish to remain at the same hospital for convenience. It sounds as though with your symptoms your MTX dose hadn't been right resulting in continuing disease activity, that could also account for the constant exhaustion. In the past I've had visible inflammation or just the feeling of without my ESR/CRP changing, one reason I don't consider my Rheumy thorough, she replies on bloods too much. My previous Consultants listened & looked at the whole picture, a common occurrence was sending me for x rays whilst there & they'd turn the screen & talk them through with me once I was back to continue my appointment, they always revealed inflammation whether I was showing any or not. You see they listened & weren't afraid to use everything available to determine cause or need. Here with this one & her Registrars & the odd locum I've had just the one set of x rays in 4 years, the ones when I first saw her to restart my meds.
It is a shame the syringes have been fazed out, if you're like me & have trouble gripping & lack strength in your fingers you'd have been more suited to them but as it is the pens can take a little getting used to being bulkier & a push button though I've now found a way I can do it safely. When being shown how to inject you're usually told to do it into your tum or thigh. I used to be able to pinch enough on my tum when on syringes & push the plunger easily, I can't do that with the pens so I tried my thigh, mistake! It wasn't painless (which is preferable) & I bruised badly. So, I'm back to my tum & just don't pinch a bit which leaves both hands free, problem solved. This is an instruction video from Metoject metoject.co.uk/patient/meto... You've probably read on here that less of the MTX is lost injecting, which is probably why your Rheumy hasn't increased your dose, I hope that's all it needs & you can remain on as lower dose as possible.
I hope the x rays don't reveal any unwanted results. Keep us updated won't you. x
No it is a lot easier now than it used to be as it now comes as a pen so it is very quick a bit daunting the first time but fine after that How rude of him it is your body after all i found the pens work for me better than tablets hope you do better on them x
Hi. Sorry you had such a difficult consultation. The pens are much easier to use than a syringe. I don't think you will have any problems. As for the fatigue. You are absolutely right. I am in remission but that only accounts for the pain, which is wonderful but sometimes I feel like I can't put one foot in front of the other I am so tired and I get very weepy too. All part of the condition I think. Better luck with your next consultation. Maybe he was just having an off day himself, no excuse I know but I would feel better telling myself that.
Constant pain and the disease itself make for fatigue which is a common symptom and a nuisance to say the least. The rheumatologist is being defensive because he has little else to offer you, with normal inflammatory markers and no failure on MTX you are not eligible for biologics. He will come over as rude, uncaring because of his feelings of failure towards you. I hope that an increase in dose via injection, which is really easy to do, improve your symptoms. Unfortunately, we do need to push for things to change,or the medical team will think we are happy with the present situation.
I do so dislike "Rheumatologists" from the dark ages. R must be the easiest job to make a nice, comfortable living out of. "your bloods ok" "joints ok" "go home". Great. Not. I hear about similar attitudes like this from my real time people (not on forums). These "R Drs" are from the dark ages, not from this era. They seem to think we believe in their BS and accept it passively as if we are stupid. Our attitude has changed if not theirs.
My heart goes out to you. I had the same problem when I first got diagnosed with RA back in September my rheumatologist wanted me to take methotrexate straight away but after looking it up on the internet I got quite scared about the side affects and the not been able to have a social drink ever again. I refused to take it he reluctantly gave me sulfasazeline to try instead. I had a really bad flare up about 6 weeks ago I went back to see him last Thursday all I got was I told you so. I am so angry I took my first dose of methotrexate on Monday still don't want to take it but my joints are so painful at the moment even though I have had 2 courses of steroids nothing seems to be working. With all the bloody technology we have in this day and age you would think they would find something that actually works. I have been on sulfasazeline since September I have definitely got worse the pain sometimes is unbearable now it's going into my knees and feet where before it was mainly my wrists and hands. Hope you get sorted soon and take care
I am leaving this note to you to tell you a few things...
1st, take a deep breath give yourself a break and KNOW and REMEMBER that this Physician will probably be ONE in a few that you will see that will "help" you to feel like you aren't in pain or aren't important, BUT YOU ARE AND THE 15 MINUTES you have with him is the MOST CRITICAL TIME YOU HAVE!
You have to make the most of it--write down your questions & hand the paper over! (that's what I do--however, I cannot write, so I type them out & print them!) Write what is happening, when, etc.
2. Methotrexate is available in pill form if you cannot give yourself an injection--besides, you may not want to have needles & syringes around your home!
3. Find a pain management Physician to help you in case there is any Joint/facet pains that can be treated, etc.
hope this helps...I know when I'm without my MTX I'm in such extreme pain, it's unbearable....even with large doses of steroids! But that is just my experience--everyone is different!
My heart goes out to you. On a positive note, the MTX injections are easy and far less side effects. I would look for another Rheumatologist. It is so important to trust your Rheumy. It is also essential that they listen to you. No one knows better than you what is happening. I must admit I am blessed when it comes to Rheumy. She goes far above and beyond. She gave me her cell number and email so I can speak to her directly. she calls me at home on a regular basis. I was diagnosed in July 2015. I have seen her at least 15 times since then. I just started Orencia infusions in March. I am also very seropositive lol CCP is 300.
Hi pink, I know what u mean about the seri-negative and the rheumy deciding your not in pain, my rheumy is exactly the same.
My joints don't swell but I do get extreme pain but have not been on medication for over a year as he says that 'I am not in pain or having problems'. Wish they could be a bit more empathetic but unless they are in our situation its probably not going to happen.
The trick with the injections is to convince your brain that it's ok to put a needle in yourself. When I was on the injectable methotrexate it was the switching off the self preservation part of my brain that helped; I used to run through my shopping list while taking my injection 😀
I really understand your frustration. I am in the same boat. Sero neg. The Dr I have been seeing is not rude just doesn't listen or seem bothered. It has taken 10 months to get my swollen knee injected. I tried writting things down but he would not look at it.
Just gone 10 months with continuous swollen fingers seeing Nurse every 3 weeks and different Drs in between. This has resulted in lots of steroids. The Specialist reg who I see said I was not swollen when 3 Drs and 2 Nurses said I was. They wanted biologics and I passed assessment but he said no.
Outcome I was swapped over to injectable mtx which was upped to 17.5mg. This has settled my fingers down a lot. The pen is easy other than handling it. Cannot feel a thing. I would suggest just press the plunger and not look at the end. You can do it.
I have decided with agreement of Nurses and secretary I will not see that Dr again. G.p is unhappy with him too. I have also now paid to have physio private so I can get moving again after recent flare.
Siad this before but us that are sero neg have a hard time, you sometimes think wish it was sero positive with higher crp and esr. Then you think what are you thinking because you do not want this dammed thing at all.
All we ask for is to be listened to beleived and given the help we need to get on with our life.
You are spot on when you say you know your arthritis better than anyone.
Good luck and do not let them get you down or fobbed off. I have too many times.
All I seem to get is "well your bloods are fine." Deep intake of breath. I feel like shouting "do any of you ever read my b****y notes? I know my bloods are fine. They were fine when I was 18mths and one foot was three times bigger than the other one. They were fine when I was 12(ish) and my spine collapsed and I couldn't stand or even sit up and was screaming in pain. It hasn't shown in my blood for the last 33yrs so what makes you suddenly think it will now? Because the blood tells you nothing, you have to be more attentive to other signs, like me telling you about the changes in the pain and movement. You have to listen when I tell you I am always tired because that could be a sign it's more active. You have to be on the ball with my X-rays because they will show what my blood won't." But they don't listen and I have to pay the price for that.
I have just slept for 13hours straight and feel exhausted. That cannot be normal.
I have the same problem, I cannot stay awake, I work full time as a breakfast chef and after my shift at around midday I have to go to bed straight away even before I have anything to eat as am exhausted. I sleep for 3to4 hours get up have some toast and then straight back to sleep until 4.30 in the morning.I cannot do anything but sleep and then when morning comes I have to drag myself off to work. On my days off I am in bed all days. in desperation I have just rang my rumey nurse up and have to ring back tomorrow for help, I do not know what to do!
Hi - sorry to hear about your experiences with your rheumy. I thought that these days 'bedside manner' was supposed to be part of their training but obviously a lot of them failed that module! On the subject of injections I have had these for some time. A friend who is a phlebotomist told me that with any needle the trick is to ensure that the site is warm. Are you still able to have a bath - I can just about manage one and do my injection straight afterwards. If I have to shower instead I just make sure that the warm water flows over for a while. Hope this helps.
Yes. When I moved to and saw a new consultant, I was asked "what makes you think you have rheumatoid arthritis?" As if I had imagined it.
I had been managing it well for 15 years so his view was that I didn't have it "as by now you'd have had serious deformities!"
Ten years on and I have been through the drugs mill, faced all the drug side effects etc AND I have some of those deformities that sweet man was looking for.
Christally that is really bad. I would have been tempted to say "well I don't but you see the other Rheumatologists I saw were just so bored and had loads of time on their hands so they just decided to treat me for it anyway."
But we don't say those things do we? We are just taken aback at what these experts come out with.
I am so sorry you have deformities. I have been lucky in this way. I have had arthritis for ages so I am surprised I don't have more.
I would like people treating me to consider me as a person who is a mother, partner, worker. Someone who has to be able to able to not only function but ideally achieve in the big wide world outside the four walls of the room the Rheumatologist is seeing me in.
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