I just got a new rheumatologist, now I have to find another one...Ugh

I loved my rheumy that diagnosed me. He was oldschool and cautious. He believed in starting with the milder drugs and I liked him for that. I placed my health in his hands and did what he asked of me. Why would I question him? He was the doctor and I sold beer for a living. Who would you listen too? lol

Well that was almost 2 years ago, and I am worse off now. My RA has progressed. I got a referral to a new rheumy 3 weeks ago and I was put on 10mg MTX, my sulfa was cut down to 3000mg and my hydroxy is 300 mg a day. Finally I had a rheumy that examined me and asked me how I was feeling.

Anyways, last friday, I took my 2nd dose of mtx and spent the next 2 days in my backyard feeling groggy and tired. Needless to say I didn't hear the message on my landline about my new rheumy retiring and my file was going to another rheumy.

I just find this so fusterating. Why me?....ok I'll stop whining now.

28 Replies

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  • There's a worldwide shortage of rheumatologists ..... seriously, there is. So I guess the fact that you'll be getting a new one means you're winning .... sort of.

    It is very frustrating but it's not just you if that's any consolation. I'm going to have to find a new rheumy too. Lets hope we both end up with really good doctors. Come back and compare notes?

  • Oh Postle2, I do hope that I like the new one. Sharing notes is an awsome idea. I am so greatful for this site. Without it, I shrudder to think about dealing with this RA alone.

  • I am in process of changing my rheumy, and it's stressful.......so I feel for you having to do it twice in short succession

    I love my current rheumy who has been so wonderful, but my husband moved to France two years ago and I stayed resident in England so I could stay with my rheumy. But spending 6 months of the year in the UK just so I can qualify for the NHS isn't a long term solution! Anyway, I've now taken the plunge. But worldwide shortage is spot on. In January I finally found a rheumy only a 100km away, and with only an 8 month waiting list. First appointment in 3 weeks! Fingers crossed.......

  • My fingers are crossed for you HelixHelix.

    100km away is dreadful for a doctor visit!! I will cross my eyes as well as my fingers that your new rheumy meets your needs.

    8 month wait list? I would never of thought that the UK or France had such a shortage. I was also shocked at a fellow Canadian that lives in my country's capital, Ottawa, has a shortage.

    I thought British Columbia's 3 month wait was a long time. I guess I should be thankful I only have a 15 mile drive.

  • Oh I have been under my consultant for about 4 years and have never met him! I rarely see the same doctor twice and they all seem to be trainees! I get conflicting advice as they all have different ideas of treatment! So its not just you!

  • That's crazy. Been with one rheumy for 4 years and you never met him?

  • Right on! I don't even know what he looks like. I don't like thinking about it cos I get angry. I guess London hospitals are just over busy.

  • My Rheumatologist stopped going to the smaller hospital where I used to go and invited me to switch hospitals to keep with him (40 miles round trip) which I did. Saw him twice, now see a different person every time. No continuity, they don't read the file (ok, would take a while to read 45 years worth), conflicting advice, some are very young just out of med school others are retired locums, a vast difference of opinions, as you say its frustrating but what can we do.

  • I am in exactly the position except I have had two consultants but never met either, the only person that I know is the biologics nurse.

  • You have a biologics nurse? I only have a rheumy nurse who I liked then she left and I now have a new guy who has come straight out of A&E and doesn't seem to know much about RA let alone bios. Hey ho we struggle along and don't complain.

  • I saw a locum GP recently - for another condition - & mentioned RA- he just said he knew nothing about RA & seemed quite proud of that fact...he told me to make an apt to see my consultant.

    What happened to the caring profession?

  • Oh my darling,you just get used to one rheumy then you get another and another. It is so frustrating as i well know. My old rheumy transferred me to one who was experienced in fibro,now he is not going to come to my hospital anymore,so now when i next go i will likely see a new one. Mind you i don't think our rheumys are doing us any good at the moment as they are so overwhelmed with cases and the funding isn't there anymore. Big hugs darling.xxxx

  • I think it's all to do with privatization of healthcare that's causing the problem. At least where I live it is.

  • I would hate not having the same doctor. My GP had a health scare a few years back. He sold his practice and droped off the radar . I was horrified. I had been seeing him for 20 years and he knows me enough to trust me when I say I'm in pain etc. He knows I 'm not a "drug" seeker as I rarely needed a prescription back then.

    I was thankful when he opened up another practice and I was delighted when I found him again.

  • This seems to be happening to a lot of people at the moment but Postles explanation has accounted for that.I really had no idea that,rheumatologists'were,in short,supply.

    It takes quite a few appointments to build a good rapport and relationship with any medical professional,and also to place your trust in them it's such a shame when you have to keep starting all over again.

    Just hope that your new rheumy is as good if not better than your present one - you may be pleasantly surprised.I really liked my first rheumy he was great and we got on well and then he went to a different hospital.Then I Saw a new one,couldn't get on with him at first but now I am glad I had to change.He explains things in detail and my hubby always comes to my appts with me.He says that for the first time in many years he has now properly understood certain things about the condition which I think helps him understand how I feel sometimes -- a win win situation.

    So whilst I share your frustration in all if this,there may be light at the end of the tunnel- keep an open mind.

    Fingers crossed for you.

    Take care.

    Crusee

    XX

  • Yes change of a specialist can be a good thing. I'm glad he was able to explain things more thoroughly to you and your husband. I like doctors that speak in "layman's terms".

    I'm so happy that your husband is to properly understand your disease because of your new specialist.

    My hubby was diagnosed with palindromic rheumatism shortly after I was diagnosed with RA. We never had to explain our issuses to eachother as we understand eachother. It must be so difficult to explain to a spouce about our condition when we can't explain it to ourselves.

  • Yes I agree with you,it must put a lot of relationships under tremendous strain.Marriage is hard enough sometimes without having other difficulties thrown into the melting pot.

    It certainly helps with hubby getting a better understanding of things but there's still one or two things he hasn't got the hang of yet- like bringing me a cup of tea in bed in the morning with a twix bar --I am diabetic!! But the thought is there bless him.

    My main problem is the RA and he does understand that so I am very grateful we are on the same side as you must be that you and your husband understand each other without having to explain.

    Take care Suzanne and keep well.

    Crusee

    XX

  • Feel for you and everyone else on this site!! Until hubby was diagnosed with RA from this Mar essentially, I didn't understand RA and the implications. We didn't even know that once we had seen the consultant and hubby diagnosed (in and out in 5 mins, job done, no words of advice, just handed a slip explaining the drug Sulfasalazine and its side effects) that next time we would see the rheumatology specialist? she did introduce herself, but we couldn't understand her polish accent? and were too polite to say so. I feel strongly that RA is the poor relation of illnesses and I rely on this site for moral support so I can keep hubby boosted up (not easy) thinking of you xx

  • It will be the specialist nurse. Many rheumatology departments have them to help take some of the load off the consultants. I generally see the nurse every other visit now. And they can be slightly less rushed and more prepared to explain things (although my consultant is brilliant) so not necessarily a bad idea.

    You will soon learn how to be a politely assertive patient! I think of it as a self-service disease...ie you have to go and ask for most things as if you stay quiet they will assume that you're 100% fine.

  • It took me a year to start being politely assertive with my first rheumy, and boy oh boy he did not like it. His attitude was that I should be in remission by now. It was almost like I failed him by making him look bad.

    He refused to listen to me. He would say last time you where here, you said you where fine. I told him I hadn't been fine since Christmas.

    So glad I am not with him no more. I'm looking foreward to meeting my new one.

  • You are a special lady Sue06 to come to this site to understand your husbands disease. He is one lucky man to have you.

    I would be lost and scared without this site. I tried to join a site from my country, but it is not as informative.

  • I like that approach helix. My next appointment end of the month is again with SPR who doesn't listen or examine you. I am getting in a tiz thinking of the appointment. Physio wants me to change G.p is on those lines too. I have to see the G.p after my visit and we will then decide if to change hospitals. I like the Cons but never see him and have Faith in the Nurse specialist s.

    Polite assertive patient I will take the thought with me.

    Good luck suzandale

  • Moomie, take your phsio's advice and see a new GP. Helix is right, we have to self-service this disease. It's our life and we have to deal with the pain and possible deformities not the doctor.

    I have been a "positive" polite assertive person in every other aspect of my life. This RA derailed me.... no more will I blindly follow the advice of a doctor.

  • Family member who is an eye surgeon said that rheumatology is gradually becoming a 'sexier' choice since rheumatologists got biologics to play with. But it'll take time for med students to wake up to just how damn sexy and interesting we, and our drugs, truly are!

    Incidentally, I'm not worried about how flippantly doctors talk about these things, it was ever thus I think. Just as long as they take their work seriously while they're 'in role'.

  • Hahaha!!! So we are sexy or is it the drugs that are sexy? How a med student decides to become a rheumatologist is his/her business. I don't care as long as they are compassionate and know their job and limitations.

    My best specialist was an OBGYN. He was an awsome doctor who came to me and point blankly said " Your pregnancy is beyond my knowledge. I made a referral to the best doctor we have." He then told me the new specialist didn't have a good bedside manner, but he knows his job.

    I am to this day very grateful for the rude obgyn. Hospital staff didn't like him, but I do.

    Sorry for going on and on....

  • Oh dear Sue! I didn't know there's a shortage of Rheumatologists ...... !

    Am keeping my fingers crossed that you get a fantastic new Rhematologist. It is frustrating when you've established a rapport with your Rhematologist and have to start over again with a new one.

    Let us know how you get on. 🤗🤗🤗

  • I saw on a website recently that the average wait for an initial rehematoloyg consultation is 17 weeks countrywide!

  • I'm begining to think the average wait time is 17 weeks world wide.

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