Hi everyone. Sorry for long post but I think it helped me writing this out.
I just had a consultation with rheumatologist which didn't go well. I had antibiotics back in Feb and came off the Baricitinib for a week and then was referred for colonoscopy/biopsies. I spoke to helpline and nurse said they don't give Baricitinib if you have stomach problems. I had a phone appt with another nurse and she said to stay off Baricitinib and get the colonoscopy and then have my appointment today (colonoscopy is now not until mid April at earliest).
When I saw the consultant today he said I didn't need to come off Baricitinib for colonoscopy and biopsies but I could stay off it until after as I seemed worried about it. I said my mum had had a gynae hysterosocopy and biopsies and the next day got gas gangrene (she went to intensive care for two weeks ) had an emergency hysterectomy and ended up on the kidney unit at King's for three months. He said usually patient's stayed on it and I decided to start taking the Baricitinib again tomorrow because of pain and stiffness. I told him what the nurse had said about not being given Baricitinib if you have stomach problems (and named her as didn't think there a problem) and he said that wasn't completely truthful as it's given to people with Crohn's disease. I asked if my stomach problems (wind,pain, blood, mucus in stool)could be caused by the Baricitinib and he said it's unlikely but to let the helpline know colonoscopy results and if there is a link he will change me to something else.
I said my lower back had been so painful and could I get it scanned, he said it was wear and tear ( a DEXA ) scan had shown osteoarthritis in my lower back and he couldn't scan everything.
I asked about my scalp - as been under dermatologist for constant itching and redness in parts (dermatitis or psoriasis or the consultant thinks possibly fungal). but I'd seen the hairdresser yesterday and had my hair done in foils. The itching has improved a lot but it's gone on a long time. He did get up to look but didn't. And I just felt he wanted me out of the consulting room.
I got upset when I stood up to leave and said I had been fobbed off a lot in the past and had had two joint replacements before my GP even referred me to rheumatology (so much for prevention). He said I had a nasty arthritis which needed to be kept under control and he also said he could refer me to a dermatologist if I couldn't get my GP to (I'm going to phone the secretary of the one I saw to let her know my scalp isn't better).
The consultant also told me not to keep stopping and starting the Baricitinib and only stop it if needing surgery or severe infection or on antibiotics. Iv'e had a lot of fungal infections since being on this (Athlete's foot now) and rarely got these before.
I cried all the way home in the car -I think a combination of having this inflammatory arthritis and having to be on these medications. The fact that my own health anxiety had probably played into me wanting to keep off the Baricitinib. Also the consultant seemed dismissive and I felt the consultation didn't go well. I didn't ask the other questions I had as felt I had over stayed my time). I need to take things more in my stride but today it all fell apart!
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Mozart150
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aw what a shame. How unnecessary. I’m always popping on and off Baricitinib. A consultant made me cry once. I complained nicely at the time and she apologised. You could write to PALS. Hope you feel a bit more positive soon.
Thank you. I had an appointment letter today on the Patient Health App for an appointment in six months with the lead nurse or one of the team. After yesterday the consultant has put me back to the nurse care - which is ok if I am stable then. When my locum rheumy left I had so many flares and it was only after a severe flare that I managed to get under a consultant!
I'm sorry that you didn't have a good appointment. Many of us look forward to these appointments hoping that they can give tweaks or a complete medication review that will improve our health. It is so disappointing when this does not happen.
I'm now on my 3rd JAĶ and tend not to come off them unless really necessary (my white blood cells being low, or having a large groin abscess as examples).
Different opions on staying on JAKs being given by different rheumatologists / haematologists.
I’m sorry it didn’t go well for you and that you came away upset - I’m not surprised by the way your Rheumy responded.
As you have unanswered questions why don’t you write a letter to him? You could start by saying letting him know you came away feeling upset with the way he responded to you particularly that some of your concerns were dismissed by him and then go on to ask the questions you didn’t even get a chance to ask.
That might be a preferable approach to complaining to PALS straight away and give him a chance to put things right. Hopefully he will adopt a more conciliatory and empathetic manner in his reply.
Keep a copy of your letter and his response so you can support any future complaint to PALS you may wish to make.
I had a bad experience, not with the specialist but one of his team. She was so dismissive of my concerns and at times rude. She didn't listen and almost accused me of making up the problems I was having. I got no where during the consultation except ending up in tears. I wrote a letter to the consultant and got a very satisfying reply and profuse apologies. For your own well being I would write a letter . These doctors need to know how their attitude impacts our lives. I really hope for better care for you.
I'm due to have a colonoscopy but no appointment yet . I spoke to one of the Specialist nurses yesterday and she said to stop my Benipali injections until I've had this and the results are through. Also I now have Diverticulor disease as shown on a recent CT scan. This started 4 months after starting Benipali. Coincidence? Biologics can affect the gut so I hope I get a better picture soon. Beni has made a big difference to the RA and swapping would be limited due to latent TB . I was affected as a child. I do hope. 9 months of anxiety and pain I asked my GP for some gentle antidepressants which have helped. I wish you well
I hope you get the colonosocopy soon. My consultant did say to make them aware when I have colonosopy results and he will look for a link with the Baricitinib and change it if needed. It has worked the best so far (even though fungal infections are annoying ) ! Wishing you well to - post how you get on xx
Sorry about your experience. As in all walks of life there are people who need to adopt a better attitude but one bad apple doesn't spoil the whole basket. You may just have caught your Consultant on a bad day. I know problems shouldn't be taken to work but sometimes it is impossible not to. Don't let this put you off.
I had always found him ok before so you could be right. I don't think I reacted well either so probably why it all went wrong but I'm not beating myself up over it xx
I think we all have days like these. Last week I rang helpline to see about restarting meds after being on abx. I'm worried that the biologic is making me prone to pneumonia.Was told to go back on it, it's the pred making me prone (been on it 6years) and I need to get steroids down. I am trying but it's not easy. When I voiced my concerns was told it was up to me. I got upset (being in pain and feeling ill definitely lowers your tolerance) and said I didn't think it was up to me to decide what treatment I needed.
Yesterday rang GP for advice on how best to manage pain when off normal meds... response speak to rheumys. 🙈 Would have cried but kids jumped in car and had to hold it together.
I often feel as you did. I'm physically feeling a little better today so hang in there it will get better. 😘
Thank you - I hope it gets better for you too. I find the info given out is inconsistent- when I had a gynae biopsy was told to strictly come off my injections (Benepali or Imraldi - can't remember which I was on then) for two weeks before and after. The rheumy nurse told me to try coming off the Baricitinib to see if my stomach symptoms improved and yesterday was told not to come off it unless serious infection, major surgery or on antibiotics. I do get anxious about all this which is a combination of health trauma as a child and bad experience of my mum. I don't think you should have been told it's up to you - they should contact the consultant for his opinion. I did ask yesterday what I should do if really start to go down before Baricitinib starts to work again (this one does work in about 3 weeks). I said the GP had said I could take two or three days of Naproxen (with twice daily Lansoprazole) and then see how I was. I said to the consultant about getting Morphine from the GP but he said no he didn't want that and would rather I had a steroid injection. I said that I had one in the past but it didn't work and I got hives straight after. He said there were different types of injection or if now a short course of Prednisolone (but I think that would interfere with colonoscopy results). Ten days after being off Baricitinib last year (for knee replacement) I went into a flare and couldn't put my feet to the floor without being in tears and the pre-assessment nurse said I could take Naproxen (had to stop about 3 days before op I think) and this worked. After my op I went into a flare after about two weeks and took Naproxen and Morphine and restarted Baricitinib and got over it without needing Prednisolone but from what the consultant said yesterday he would rather I had steroids....... I'm hoping I can carry on just with the Co-codamol at the moment..... everything crossed !!!
I'm lucky I have a medical background but navigating all these things is a real struggle. I had morphine before Christmas for the pneumonia and it worked for that. Currently taking eterocoxib and that has helped with this flare. Naproxen works for me too but weird dreams. I'd definitely take the baracitinib and avoid the steroids incase they influence the biopsies.
sorry and could feel your disappointment as I am also had this awful experience last week with GP as she was not ready to listen my concerns neither satisfied .It was my third appointment with her regarding uti and cyst but she exact stood from her chair by saying that there are other patients so go home and wait for our response although I was trying to tell her how could I mange my daily task by skipping my biologicals as still there is not yet confirmed about my treatment.I burst into tears and left the surgery .Now I am in moan and crying with pain and discouraging behaviour neither want to call nurse because she already told me exactly as you have said .It’s very cruel disease which took your dignity when you request in a begging style to your doctors for relief and in response get blank attitude.I know doctors have immense burden but then why we are asked not to ignore your health .
Thank you for replying - sorry you also had a bad experience and are going through all this stuff re the cyst. I hope you get some answers really soon and can go back on your medication. Sending hugs xx
It's so difficult. I think a lot of the issue stems from GPs not knowing enough about the disease and not really having answers for us. They probably generally just don't know what to do or say. It would be better if they just said we don't know instead of making us feel that we are a nuisance.Keeping fighting for yourself. Stay strong.
Its so hard , you look forward to these appointments and answers and sometimes you just don't get them. I like the idea if the letter above where you can ask things with a clear mind x good luck with all your tests
I’m sorry you had a hard time at that consultation…. I’m sure we all have days like that . I don’t take any meds because I felt so awful on them I’d rather be in joint pain . I know that’s not what they think is best and I cry at every consultation when I give up on another drug . Im sure they’re used to it .
Thank you. Sorry to hear about your experience-the drugs affect everyone in different ways ! Best of luck for the future. It helps me to post on here knowing other people understand 🥰
I`m sorry you had a bad experience with the Doctor but it`s becoming alot more commonplace now from what I`m hearing from friends and family and the internet about treatment from Doctors, Nurses etc. It seems majority of the good Doctors have left and it`s the bad ones who don`t care that are left working for a very ailing NHS. Many health professionals are so bogged down with too many patients, too much paperwork etc that they can`t be bothered to give a high standard of care anymore.
Also Biologics are very strong immunosuppressant drugs from what my Doctor has told me. There are alot of side effects for some patients so you have to decide whether the benefits of taking it outweigh the side effects. You don`t have to take them if you don`t want to or if you disagree with a health professional then don`t be afraid to speak up. It`s up to you what you do. It`s your decision as to what you do for your own healthcare. I`m finding you have to be alot more assertive with health professionals and don`t take what they say as gospel, do your own research. I`m finding some of them are not the sharpest tools in the box. Get second opinions if your gut tells you they`re fobbing you off, are crap at their job etc.
I use more natural methods to control my arthritis and luckily don`t need to touch the DMARD`s and Biologics. Good Luck.
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