Lost faith in My Rheumatologist

microbar

I have grave concerns regarding my treatment by my current Rheumatoligist.
He subscribed sulphasalazine last year for my RA
I was on these for around 11 month,
After about 9 month I developed peripheral neuropathy in my feet.
I looked this up on a medical web site and found that sulphasalazine can be neuro toxic and cause peripheral neuropathy,
I asked my rheumy about the peripheral neropathy and the sulphasalazine he told me not to belive all I read on the internet.
And said I had probably got trapped nerves in both feet.
Which I found hard to believe at the time.
My feet got worse as the months went by and I lost most feeling in both feet. I asked to see a neuro specialist who diagnosed PN
ans said TO STOP THE SULPHASALAZINE AT ONCE.
As this was the cause.I went back to my rheumy and he put me on
leflunamide he did not apologize for the wrong diagnosis of my feet.
I was on laflunamide for 8 month but they did not seem to help.
They just caused side effects such as diarrhea,
,I then asked if I could try something different due to the side effects,
He then put me on penacilamine,But told me these may cause upset stomach IE Diarrhea,
I said is that wise considering my side effects with laflunamide,He said give them a try,
I have been on the penocilamide for a month now and the diarrhea
has been worse than ever,
I am going to stop taking these as they are making my life a mysery, These dmards are doing more harm than good,And my Rheumy is just condescending and arrogent,
I feel I now need to seek a second opinion.

elnafinn

Hi microbar

I am so sorry to read your story. I have a feeling I would have lost confidence in this rheumy when he mentioned about not believing all you read on the net. This can be true but when you are getting the exact symptoms that you have read, then to me that is a different story. I would have asked to see another rheumy, I think. Anyway, that is water under the bridge now. I would definitely not wish to have this particular person meddling with my health for a moment longer and I am sure you have enough evidence to be able to begin to see another rheumy quickly without any trouble at all. You should not have been prescribed penocilamide. Diarrhoea really makes life very difficult and embarrassing. Whatever is the matter with this particular rheumatologist? Sounds like a waste of space to me.

I hope you are soon with a rheumy that you get on with and feel comfortable with after your abysmal experiences with this one. If you can be bothered write a letter of complaint, why should this person get away with it, seemingly with no remorse either.

Best wishes
Elna

colinone

Hi Helena what a saga, It seems with most drugs their are side effects but when you get to the type of drugs we take the side effects seem worse. I'm on Enbrel anti tnf and Prednisolone along with other stuff for pain and one or two other things. After a long spell of dicky tummy, nausia, confusion and feelin ill all the time i seem to have settled down. I feel so sorry for you the illness is bad enough without coping with the problems with the rheumy. I must point out that all doctors within you trust will stick together and an Apology would be an admission of guilt. I don’t know how well you get on with your GP but it may be worth a chat with them to see if they can change you rheumy. One thing is for sure you don’t need the stress of this hanging over you and you need to get some stability, whilst you are feeling like this it will only exasperate your condition. Take care and keep your chin up .
Colin

averyniceman

microbar wrote:

I have grave concerns regarding my treatment by my current Rheumatoligist.
He subscribed sulphasalazine last year for my RA
I was on these for around 11 month,
After about 9 month I developed peripheral neuropathy in my feet.
I looked this up on a medical web site and found that sulphasalazine can be neuro toxic and cause peripheral neuropathy,
I asked my rheumy about the peripheral neropathy and the sulphasalazine he told me not to belive all I read on the internet.
And said I had probably got trapped nerves in both feet.
Which I found hard to believe at the time.
My feet got worse as the months went by and I lost most feeling in both feet. I asked to see a neuro specialist who diagnosed PN
ans said TO STOP THE SULPHASALAZINE AT ONCE.
As this was the cause.I went back to my rheumy and he put me on
leflunamide he did not apologize for the wrong diagnosis of my feet.
I was on laflunamide for 8 month but they did not seem to help.
They just caused side effects such as diarrhea,
,I then asked if I could try something different due to the side effects,
He then put me on penacilamine,But told me these may cause upset stomach IE Diarrhea,
I said is that wise considering my side effects with laflunamide,He said give them a try,
I have been on the penocilamide for a month now and the diarrhea
has been worse than ever,
I am going to stop taking these as they are making my life a mysery, These dmards are doing more harm than good,And my Rheumy is just condescending and arrogent,
I feel I now need to seek a second opinion.

Name the bugger.

After all, if someone else gets him, forewarned is forearmed.

eckstardeluxe

I agree with you, ask for a second opinion. Although I have OA I had a particularly nasty experience with the Ortho Consultant last year and posted on here about it, people were horrified. It is your right to have a second opinion and if you ask they will give you it. I'm so glad I did as found myself with a wonderful Consultant.

Do not take their manner if it upset you. I went to the Complaints team and made a formal complaint, I got a very sub-standard reply and then went to the Ombudsman and got much better treatment from them. You do doubt yourself once you do it, but once the Ombusmen's team investigated, agreed with me and took action I felt so much better. Knowing my actions could help someone else really helped to make me feel better. People said to me I better watch out I don't "rock the boat" but to be honest I've received perfect care and treatment since. Your voice counts.

Good luck

Eck

woodbon

Hi, I'd ask for a second opinion. Some medics think they're Gods. :roll: I've had experiece of being scared to death by a rhummy who was totally wrong and its not very nice. I know its hard to question these people, they can 'blind you with science', but a second opinion is, I believe, your right. I also believe that if you have confidence in a doctor, the whole experience of managing your condition becomes easier. Hope you soon get sorted with medication that suits you. Love Sue

mistywillow

woodbon wrote:

Hi, I'd ask for a second opinion. Some medics think they're Gods. :roll: I've had experiece of being scared to death by a rhummy who was totally wrong and its not very nice. I know its hard to question these people, they can 'blind you with science', but a second opinion is, I believe, your right. I also believe that if you have confidence in a doctor, the whole experience of managing your condition becomes easier. Hope you soon get sorted with medication that suits you. Love Sue

Hi There
just wanted to add my voice to the others really. Do get your GP to refer you to someone else. You have to have trust in the person who has your health in their hands so to speak. I think many people know their own bodies much better than the medics they see. Years ago before i had my 2nd spinal fusion (before i got RA) i was referred to an arrogant complete pig of an orthopaedic surgeon, who told me nothing could be done for me and i just had to accept the limits of my condition and give up my home and lifestyle. ( for those that don't know i live on a farm) I gave him up instead and found myself another doctor who was incredible and i was back on a horse in just over a year after i had very major spinal surgery with his complete support
Good luck love Gillx.

microbar

Thankyou for all your kind replys.
I have taken on board what you have all said.
And will ask my gp for a second opinion.The only thing that concerns me is that
My GP actually works under my rheumy as he also specialises in arth, But the rheumy can overrule my GPs decisions on RA due to his so called experience. My gp is great with me and always listens,
But will obviously close rank with a working colleague,
I am due to see the rheumy in july so I am going to keep this appt
and tell him what I think of his atitude I am not going to put up with his crass treatment anymore and need the satisfaction of telling him what a "***" he is.
I will then move on to another rheumy.
I just hope I dont get a black mark in my medical records as usually
if you complain to any medical proffesional they put you down as a trouble maker. Thanks again for all your replys.

elnafinn

It depends how you go about it. It would be best to have it in writing because then there will presumably be a copy in your file too and if written politely but firmly re the course of events I cannot see how you will be seen as a trouble maker at all. If it is all said verbally then there is more cause for things to be exaggerated by him if he is ruffled by being taken up on his inadequacies with you and your wellbeing and without thought of an apology.

Why wait until July? Send a letter to all and sundry now - strike whilst the iron is hot - and then get going with arranging an appointment with another rheumy. Hopefully you will be seen before July then.

Elna

eckstardeluxe

microbar wrote:

Thankyou for all your kind replys.
I have taken on board what you have all said.
And will ask my gp for a second opinion.The only thing that concerns me is that
My GP actually works under my rheumy as he also specialises in arth, But the rheumy can overrule my GPs decisions on RA due to his so called experience. My gp is great with me and always listens,
But will obviously close rank with a working colleague,
I am due to see the rheumy in july so I am going to keep this appt
and tell him what I think of his atitude I am not going to put up with his crass treatment anymore and need the satisfaction of telling him what a "***" he is.
I will then move on to another rheumy.
I just hope I dont get a black mark in my medical records as usually
if you complain to any medical proffesional they put you down as a trouble maker. Thanks again for all your replys.

Hi, I understand your concerns, I had these too. But trust me a Dr recognises incompetence and only a few will back up the person in question. You will find many of them out there are just as horrified at your treatment as we are and will really help to make sure it doesn't happen again. As woodbon and I said, it is your right to have a second opinion, they can't refuse it, if they do, you can proceed with a complaint, from experience I can tell you nothing gives them a kick up the **** more than that. And it sounds like this Dr needs a really good hard one, if I didn't have such "gammy" legs I'd do it for you

jimmy77

microbar wrote:

I have grave concerns regarding my treatment by my current Rheumatoligist.
He subscribed sulphasalazine last year for my RA
I was on these for around 11 month,
After about 9 month I developed peripheral neuropathy in my feet.
I looked this up on a medical web site and found that sulphasalazine can be neuro toxic and cause peripheral neuropathy,
I asked my rheumy about the peripheral neropathy and the sulphasalazine he told me not to belive all I read on the internet.
And said I had probably got trapped nerves in both feet.
Which I found hard to believe at the time.
My feet got worse as the months went by and I lost most feeling in both feet. I asked to see a neuro specialist who diagnosed PN
ans said TO STOP THE SULPHASALAZINE AT ONCE.
As this was the cause.I went back to my rheumy and he put me on
leflunamide he did not apologize for the wrong diagnosis of my feet.
I was on laflunamide for 8 month but they did not seem to help.
They just caused side effects such as diarrhea,
,I then asked if I could try something different due to the side effects,
He then put me on penacilamine,But told me these may cause upset stomach IE Diarrhea,
I said is that wise considering my side effects with laflunamide,He said give them a try,
I have been on the penocilamide for a month now and the diarrhea
has been worse than ever,
I am going to stop taking these as they are making my life a mysery, These dmards are doing more harm than good,And my Rheumy is just condescending and arrogent,
I feel I now need to seek a second opinion.

Hi,

You definitely need a second opinion but, to be honest with you over the past 15-20 years most rheumies I have met are condescending and arrogant. My take on this. is that this is a defense psychological mechanism, for them to preserve their egos in treating patients because they lack effective training and knowlege of how REALLY to make the patients better. I don't think it's a desirable profession by many.

Good luck.
Jimmy

jojo12

Hi.

I was sorry to read that you have had a bad experience. I too had this which upset me quite a lot.The 'expert' in question wasn't interested in what I had to say as he was so far up his you know what!! I wasn't happy about seeing him again so I went to my GP and told her all what had happened and she wasn't happy about this (lots of other things he went on about or not on about all far to much to mention). My Gp suggested that I put in a formal complaint, which I did. He was investigated and I had a written apology from him. Of course, I didn't stay with him, but went to another local hospital (Bristol) and guess what I now have as far as I am concerned the best treatment I could have. So glad I compained. We are all entitled to the best available so don't put up with second best ,as after all we have to live with our bodies not the 'experts'. Good luck.

noeltone

Hi reading this and having failed becos of use and side effects on those DMARDS you should or might be able to be considered for biologics but i think you might have had to try mtx as well there are NICE guidelines for what treatmnent to expect for us with RA and OA which rehumys should be aware of is there a top dog you can ask to see as a consultant and there is a right now to have treatment in hospitals of our choice now how practical it is I dont know

noeltone

NICE have guidelines for RA and OA you can get shortened pateints version of guidlines from NICE on loine or by phoning them the whole documents are long but make intersting reading of what the NHS has laid down as guidance for the treatment of peeps wirh arthur in reality thouh it is varied across the country and hospitals etc but when having an appt perhaps we shpu;d qouote these gudilines for treatmenty and hopefull improve our consultations etc this is one bit of it from a blog

People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.