Diagnosed with RA 12 years ago - on Prednisone & Benapali 7 weeks ago. Please read Post. Has this happened to anyone else? What should I do?

[annie0261]

So, I was diagnosed with RA in 2006 - somewhere along the way, it went to sero negative inflammatory arthritis. I went on Sulfasalazine - but I had a reaction. I was then put on MTX in tablet form for years - I was so nauseated with them that sometimes I couldn't get out of bed - but my Dr wouldn't change them saying I had to weigh up what was more important a bit of nausea?!?!!! or full blown RA so I persevered with them. Just as I was going to give up taking them and take my chances, I got a new DR and he said it was also about quality of life. He put me on MTX injection which was fine for a while. Then as it wasn't working Hydroxychloroquine was added - which worked for a while but again started failing. I was then put on Leflunomide. Which worked great, but I started loosing weight - which I didn't mind but then my blood pressure started going through the roof so they took me off them I was left for a while waiting for a Drs appointment leaving me relying on various pain medication.

When I got to see the Dr in March, I was put on a course of Prednisone, for 3.5 months and told I was going on Benapali - which I did in June however, after 2 injections my gum swelled up for a week, and my lips swelled with cold sores. I was told it was signs of an anaphylactic shock - so again I was taken off them. I waited for an appointment with the Dr again and went mid August.

I have been having problems with my back, which is a result of a car accident 3 years ago, but it's degenerative so a separate issue altogether. The Dr ordered a scan for this.

As I'm having problems with my ankle and foot swelling, an xray was ordered for this. No other questions were asked - no medication prescribed.

This week, I received a copy of the letter going to my Dr. It stated I had Fibromyalgia and chronic pain syndrome. It then went on to say I was being discharged back to my Dr however, if my back scan or foot xray showed swelling I would receive an appointment - there was no mention of me having RA and no mention of any further medication being administered.

I just don't understand what is happening. 6-7 weeks ago I was on Prednisone and Benapali and now nothing?

What do I do about the stiffness, pain, etc?

Has this happened to anyone else?

[Vonnie10]

How sorry I am for you been left it’s maddening I hope you get sorted ASAP goodluck.

[helixhelix]

It's not happened to me, but I've heard of it happening to others.

I guess what you need to do is march straight back to your GP and say that this is not acceptable! Make notes on the history you've told us here so you have it in front of you. And explain that if medications for RA relieve your symptoms (despite giving you intolerable side effects) then how can anyone now say you don't have RA? If he or she balks at intervening, then demand to be referred to a specialist elsewhere.

It could of course be a stupid mistake, but stand your ground and push back. Good luck.

[Fra22-57 in reply to helixhelix]

Well said

[Hidden]

I would certainly follow this up!! Totally unacceptable to leave you like this. Something I have done when not happy with treatment, is to send an email of my concerns to all consultants in charge if my care. For me this included GP, orthopaedic surgeon, rheumatologist and gastroenterologist. I sent to all as they all seemed to be working separately, and medications were given that impacted another disorder. I simply wrote to rheumatology and copied the rest in.

It was a polite email, but pointed out my concerns up front. Sometimes folks need reminding thst there is a human being on the other end of stethoscope. Medical staff are often over stretched, notes get lost, mislaid, and sometimes contains incorrect information. For example, a recent letter to my GP states that I'd had bilateral total knee replacements. This is incorrect information.

A mistake in your notes/treatment may have been made. Follow it up, and double check the meaning of this information.

Contact your GP in the interim and see what she/he suggests.

I hope all goes well.

[Shalf]

My word Annie! Unbelievable springs to mind!! Wait... You were diagnosed with RA in 2006. Surely your GP has your medical records. We know RA isn't curable so it hasn't just disappeared! You have been on a few different dmards latterly biologics - Benepali. The x-ray department write a letter saying you have Fibromyalgia and chronic pain syndrome and your GP is accepting that?? Is this for real? Sorry not getting at you. This is crazy!! Annie , have you contacted your Rheumatologist? It's their job to assess you and to prescribe medication for RA. Feel so sorry for you. I have heard of anaphylactic shock related to peanuts and/or wasp stings particularly in the mouth but not drugs. In any event, there are alternative meds out there! What you do about the stiffness and pain is take it to your rheumatology department. Think you've gone through quite enough! Xx

[annie0261]

Sorry, when I mention 'Dr'. this actually refers to my RA Specialist. To me, this makes it worse - I just don't understand it. The RA Specialists are part of the same team that diagnosed me in 2006, and have been treating me and providing all my medication for the last 12 years. Even when I have not been as bad and in remission as they say, I have still always been on some medication, but now nothing.

Like mentioned on here RA isn't curable, and doesn't just go away. If I suddenly haven't got RA, then what and why have I been given RA medication for the last 12 years?

[Shalf in reply to annie0261]

Why indeed! I would be questioning that too in your shoes. If something doesn't feel right it usually isn't right. Go with your gut Annie and get the answers to your questions. It's your body, your life.

A big part of this journey for me is having good communication and trust with your rheum. I had an arrogant man at first who wrote prescriptions for pills before even examining my joints! Totally ignorant in his manner. I now have an amazing rheum. She explains everything, listens to me, examinations, Everything! She's superb! Perhaps you can request another consultant.

Best of luck. Keep us posted. X

[Fra22-57]

I agree with helixhelix .If you get no response go to PALS.They are located at your hospital.they will help you sort this

[Hidden in reply to Fra22-57]

Sorry for my ignorance but what do PALS do

[Fra22-57 in reply to Hidden]

Well I was discharged from hospital after a month and realised after no follow on appointments and referrals I was left struggling.I went to PALS to help and they took notes of my case and contacted my consultant. Eventually I was given a referral to someone else then appointment back to see my consultant. He said they had accused him of neglect.he has been very helpful since .

They are like an intermediary

[Hidden in reply to Fra22-57]

Thanks for that, still learning this system but if I have a problem my GP sorts them out, he thinks nothing about calling the consultants in front of me and following up with an email

I wanted to add that my GP actually took the time to read all of my notes since birth 🇬🇧 and overseas,he studies everything as has a personal interest in RA. Apart from one mistake with meds and a statin I cannot fault him. Same at the hospital my rheumatology nurse support lady also has RA. I am not sure if I am just lucky or the health professionals are just doing their job in Consultant was not sympathetic at first as I looked too fit to be sick but know he knows his attitude has changed.

[Someonesmother]

Yep I have been ditched by my rheumy. I am waiting to see another one at the end of Nov and will have to pay $415 for a 10 minute consult no doubt. My GP said it is becuase the other one probably has no idea what to do with me so he refused to see me again. Sooooo I am now swelling up incredibly in the hands and ankles, the pain in my joints is awful and the fatigue is making life very hard working full time. I have no idea how they get away with this but they do. Do not accept that diagnosis it is a lazy doctors diagnosis when they have run otu ways to treat you. See someone new. Best of luck

[DRunnerchick]

Well annie0261,

You have had quite an awful time with all this! I would like to commiserate on two points with you: 1) I have had an anaphylactic reaction to a drug (and other things) and it is definitely no fun, 2) I was diagnosed with RA and treated with MTX and then "undiagnosed" by the same rheumy. It is frustrating to be sure, especially as symptoms progress and your life is certainly effected.

Thankfully I have a 🌟GP who has fought for me to get appropriate care. My story is not yours (you can read my posts if you wish to follow my journey as I am still undiagnosed) but I would encourage you to write down your health hx with all the pertinent dates, including dx, test results, doctors and cred/ dept, meds and side effects. Print it out and hand an updated version every time you see a new consultant. Be your own advocate and be confident in knowing what you feel in your body. Always ask 'what else could it be?' 'Why do you think that?' whenever they give you an off the cuff answer and don't leave until you are satisfied. I hope this helps in even a small way. Hang in there! 🌺💐🌞🍀

D🏃🏽‍♀️

[Hidden in reply to DRunnerchick]

Good advice

[Hessie5]

My, I feel for you. As Helix states, dig in and demand answers. I am stuck between a private foot surgeon and my RA Dr arguing as to my diagnosis, really stressful 😞. I have had to pay to get answers, it is hurdle after hurdle. We can't afford to stress. All the best.