asking a simple question

[Luludean]

I have had so msny disgnoses and opinions that my head is spinning and I am anxious. First diagnosed with multiple forms of arthritis!! Then a different consultant dismissed these disgnoses. Then told I had RA, ankylosing spondilitis etc and put on Benepali. Side effects from this drug voncerned my cardiologist. Rheumatology department poo pooed my supposed side effects. Pharmaceutical company supported me. GP stay completely clear of rheumatology. New consultant ( I had no rheumy drugs got 2 years) fevided I fid not have RA but did have osteo. I am still under «  inflammatory arthritis clinic « . What is fifference between RA and inflammatory ???

Next friday I hzve a f to f with nurse practitioner , I have bern told it is to instruct me how to take lefluonimide. In a brief tel call with nurse practitioner I boiced my confudion and great reluctance to start this drug . I was told not to attend Friday’s appointment if I was not hoing to start Lefluonimide.

I don’t know if the consultant has agreed to this. She suggested 2 other drugs in her summary . I mentionned these 2 other drugs in a tel message to urgent help line, 4 werks ago, I have had no reply. A recent foot xray in Ely hospital confirms osteo. A private London hospital also confirmed osteo and wrote to my GP. Help please.

[Madmusiclover]

I’ve had a similar runs around. My only solution was to see a rheumatologist privately. RA or any inflammatory arthritis can cause OA. Why don’t you try the NRAS helpline? See what they suggest? It will help get things clear in your mind. Also when you do go to see a nurse or rheumy take someone with you.

[Luludean in reply to Madmusiclover]

Thank you madmusic lover. I have found NRAS very good in the past but I don’t think they can help on this one . I had a terrible job getting hold of ly xrays , well I never did .

I wish I had someone to go with me , but my 4 children far away ,, all medical.. They do not understand the situation here . I have a stupid habit of not telling them or just pretending to be the rock they seem to need me to be. I would not be my friend !!! ,they keep dying ! Even younger ones. So huge angst is builfing up . I do not have this problem with the several other departments I visit, Hope you are not having this rain !!!!!

[Madmusiclover in reply to Luludean]

Take a friend! Seriously nras helpline might help you think it all through and devise strategies.

[Luludean in reply to Madmusiclover]

Seriously mad music , I have lost mother and cousin and 7 of my closest friends in past 5 years . I am only child of only child . One can’t buy friends. But one gets used to going to hospital alone and fighting . X

[wilbertjellyfish in reply to Luludean]

First seen your GP. They are surely going to have all the letters from consultants to be able to put the pieces together.Second speak to your children, I imagine they would be horrified if they thought you were having to navigate this alone.

Third does the hospital have volunteers who are patient support people or advocates? Or PALS?

[Luludean in reply to wilbertjellyfish]

Hi Wilbert,, my children live NE , France etc , they can’t intervene. 3 years ago PALS were very good and changed my consultant , the new one is humane, and disagreed with previous diagnoses . Because of huge backlog I szw her once in last October. She put me on a month’s steroids, then I saw her in June, she was in charge of clinic and on call, over worked and stressed!! She ordered foot xrays, seemed to think my problem was osteo but, in her summary letter suggested 2 drugs .

Thank you everyone for your amazing support!!

[Madmusiclover in reply to Luludean]

I am truly sorry.

[Deeb1764]

I am not too sure if this will help but make sure you go to Appointment a/to be seen b/ to voice concerns and hopefully they can make you understand the drug more.

I was lucky my Gp stepped up and my consultants in heart/lung and Ra were all saying one thing and I emailed my GP having a mini rant about how am I meant to understand my health if everyone contradicting each other.

He was fab so we have a plan and if I have concerns what is said he unpicks it and we double check.

I think if you can do a simple pro and con list of health and symptoms and then medications for each one and then get support from the one you trust the most if and I do mean IF possible.

Speak to NRAS about Inflammatory ,RA and OA as they might be able to help you navigate this as well.

Good luck it’s awful when you can’t make head or tail it’s just another battle 🥰

[Luludean in reply to Deeb1764]

Thank you Deeb , your very sympathetic post made me laugh . I wish I coukd speak to my GP like that. She only xorks part time( not allowed to change gp ) and looks on edge of hysteria, bit nonplussed by my co morbidities (vile word) and definitrly terrified of rheumy dept. So, no help there.

Glad you got help and you are a strong person dealing with your «  morbidities) L

[medway-lady]

Why do you need an instruction to just swallow with water? this sounds very odd so if I were you I'd try to find out more. LEF was great for me but why prescribe it if you don't have RA and I thought only a Consultant can prescribe as its a DMARD so not sure if its GP saying thats all or the Consultant. Here medications are being limited so I'd urge you to find out more.

[Luludean in reply to medway-lady]

medway lady I am here , in uk., I know these drugs cost a fortune. As othere have said , GPs ( well mine) will not comment on biologics or Dmards. I did ask the question on the help and got no reply.

[AgedCrone]

Never say you disagree with what your rheumatologist offers until you understand your condtion. You can have osteo as well as RA…in fact a lot here have both.

I’d go to see that NP , write down what you want to know , & discuss why you are being offered Leflunomide. Until you understand why you are being offered a particular drug - you will struggle to get the right medication,

A lot patience is needed with RA…& having confidence in your rheumy team is vital.

Good Luck.

.

[MidWhitgiftian]

Which NHS Trust are you "in" in the Ely area

[Luludean in reply to MidWhitgiftian]

Cambridge

[MidWhitgiftian]

Have had to go (privately) to a Consultant in Cambridge and they have been very helpful. Am in the NHS trust to the west of you and my GP struggles get patients even onto the waiting list. Like many here I have both Ostio and Rheumatoid, and it has been a roller coaster at times. Sound advice re NRAS above ,.................. .

[Luludean in reply to MidWhitgiftian]

Thanks Midwhitgift!

I would be interested to know who you saw here. But I suppose it is not possible to say here. I went to London Bridge Hospital, they were lovely and did ´ot rip me off at all .L .

[jujubeee714]

To confirm RA you can have your specialist or gp test for the autoantibodies associated with it. An ANA, anti-ccp and /or rf factor. Also of use are inflammatory markers like crp and sed rate.

If you have a positive ANA further detailed autoantibody testing is usually done by a rheumatologist to rule in or out other autoimmune conditions like systemic lupus, sjogrens, scleroderma, mixed connective tissue disease, crohn's, hashimotos, etc. If you're symptoms are pointing in the direction of something like spondyloarthropathy, psoriatic arthritis, ankylosing spondylitis those are seronegative inflammatory arthritis conditions so autoantibody testing isn't helpful in diagnosis. (just to rule out some autoimmune diseases)

Osteoarthritis and rheumatoid arthritis are not the same and have different treatments. RA is autoimmune and inflammatory and OA is basically wear and tear from age. RA can be treated with drugs that tamper down the overactive immune system (immunosuppressants) and OA isn't.

I hope that helps! Also if you get rashes you can see a dermatologist for a skin punch biopsy that can help you find answers.

[bpeal1 in reply to jujubeee714]

Osteoarthritis and Rheumatoid Arthritis are different however, many people with RA get secondary OA so they can be very much linked. Secondary OA occurs when the inflammation from the RA has caused erosion of the cartilage (and sometimes bone).

[Rusticgarden]

What's your blood tests say ,that proves RA or not ,You can have both RA and osteo ( RA is an autoimmune condition) osteo occurs when cartilage wears away . Inflammatory Arthritis is Rheumatoid.There are over 100 different types of Rheumatoid

[Green230461]

Make a list of questions to your appointment good luck 🤞🏻

[katieoxo60]

THis type of approach to arthritis is not acceptable but quite the norm as it is not seen as a serious illness . But its consequences can be quite debilitating in respect of daily living and general activities. Good management is the key that is dependent on you and your management team , usually the GP surgery for first line. Arthritis Action is another group that can help you . Many changes have come but some people still see it as an illness of old age. In one of my reports it says she thinks its arthritis !!! I am diagnosed as arthritic and have a replacement knee joint. The approach is ridiculous. I wish you every bit of good luck to get this sorted out. Oh and you can have more than one type of illness causing pain in the muscles or joints., plus more than one type of arthritis.

[Luludean in reply to katieoxo60]

Thanks Katie oxo, miss that advert!!

I have Heart disease and persistent AF too , hence added concern about drugs, but, I know I can trust the cardio team. L