Update: When PMR is RA

[Hopeful66]

Evening everyone,

Just to update, after seeing the Rheumatologist, Dr Camilleri, in Cardiff on Wednesday, and armed with every test result over the past month and a daily diary of my symptoms, I've been diagnosed with Sudden Onset Seronegative Rheumatoid Arthritis - obviously not great news, but a diagnosis that means I can move forward with the correct treatment.

It would seem that although there is quite the crossover with PMR - apparently one of the biggest tells was the pain and swelling in the extremities, (wrists, hands/ankles, feet).

For the first time in ages I sat and talked to a doctor who listened, carried out a thorough examination, asked questions, actually read the diary I had prepared, test results etc - it was refreshing, to say the least! Within 24hrs my doctors surgery were calling me to arrange further tests and an appointment for the ongoing treatment plan.

So I would like to thank everyone on here for the support, help and advice you have given me during the past month. That support was and still is appreciated, because whether PMR or RA, the symptoms, pain and roller coaster of emotions remains the same.

I hope you all have a lovely Christmas x

[DogAgilityObsessed]

So pleased you have a diagnosis. I understand how strangely relieved that can make you feel. What’s your treatment plan?

[Hopeful66 in reply to DogAgilityObsessed]

No idea as yet - awaiting final blood test results, but the Consultant suggested it may be Pred' initially @ 15mg daily - but at the moment I have been given Co-Codamol 15mg/500mg from the GP - it takes the edge off of the pain but does nothing else.

[Grammy80]

I'm so happy to hear you had such a receptive Doctor who really conversed with you and showed so much respect for your tracking of symptoms. It is such a relief to have a diagnosis and know what you are dealing with. As you say...now forward. Start with a wonderful Christmas~!💞

[Hopeful66 in reply to Grammy80]

Thank you, you too x

[Bcol]

Brilliant appointment a definite diagnosis, with, I'm sure, an appropriate treatment plan to follow. Bit more of a mouthful to tell people what you are suffering from though. PMR is so simple to say even if no one has a clue what you are talking about. 🙂

[Hopeful66 in reply to Bcol]

😂

[Indigo2417]

Glad you’ve finally got some answers. Hope you have a good Christmas.

[Hopeful66 in reply to Indigo2417]

Thank you, you too x

[SheffieldJane]

You sound like a dream of a patient too. Best wishes going forward.

[Hopeful66 in reply to SheffieldJane]

A 'dream of a patient' - not sure about that - in my previous life I was a H&S bod, accident investigations etc, so decided that if I'm to see someone for 30 minutes, I was going to make the most of it, treat myself as the 'accident' and go armed with facts, to ensure that I left nothing out I completed a diary and gathered all of the supporting evidence - to my shame I didn't think of doing it a year or so ago when the aches and pains were getting progressively worse and I was getting nowhere with the GP practice!

[SheffieldJane in reply to Hopeful66]

My excellent Rheumatologist would appreciate your clarity.

[Gaz227]

really pleased for you , was your appointment private or NHS , I saw a new Rheumy on Thursday as my old one retired sounds like my symptoms are so like yours hands feet ankles wrists , plus so many other joints .

[Hopeful66 in reply to Gaz227]

Private, £220 - and worth every penny

[Gaz227 in reply to Hopeful66]

I’m already being treated with Dmard’s , initially as a sparring drug for steroids which didn’t work , so I guess I’m already being treated for the Rheumatic issue, just waiting for my next prescription to be ready increased the MTX to 12.5mg from 10mg , Rheumy said it might help me drop another Mg or so , but more importantly get me out of pain again and control the disease a little better , good luck 👍🙏🤞

[Hopeful66 in reply to Gaz227]

Thank you, to you too - I know it's not especially 'good news' to be diagnosed with RA but we can move forward armed with fact from now on and not the speculation that has been hanging around for the past couple of years. 🤞

[PMRpro Ambassador]

So glad the decision to go to him has paid off. Its true that if there is any involvement of swollen and painful JOINTS, the LORA (late onset RA) must be considered as a differential diagnosis. It can present looking just like PMR and is what is called a polymyalgic presentation. It is also important it be diagnosed and treated quickly to minimise long term effects - so the current long waiting lists combined with poor clinical skills on the part of GPs are a nightmare. Though I do have to say, I had swollen hands and feet and wrist pain - it may arguably not be PMR even if my world name rheumy agrees it is, but it isn't RA either!!!

Just because you have a different diagnosis doesn't mean you can't drop in here if there is a question we can help with.

[Hopeful66 in reply to PMRpro]

Thank you for that, I really have appreciated all of the help and advice here x

[EngineerMatthew]

same here, after 3 years treating me as PMR case. There is no cure for RA so kind of sad about that fact. My symptoms still are much like PMR, shoulder hips and hands. Can’t think of any advantage of RA over PMR

[PMRpro Ambassador in reply to EngineerMatthew]

There is a far wider range of options for managing it - and most people do very well on biologics.

[EngineerMatthew in reply to PMRpro]

oh yes, forgot about that. That is a outstanding point but not an option for me.

Lass at church takes Humira but it costs $5100/month. The stuff really works great she claims. Without it she is miserable.

Since I no longer can work, wife and I are living off $2,000 a month. Not eligible for Governmemt help as long as I have a 401k. Trying to make it last until I turn 65. I think fentanyl off the street is cheaper than Humira. She is 65 so has Medicare. I am 59. Maybe the pharmaceutical will provide it at a discount but it gets front loaded to Medicare later.

Getting stung by bees I hear has a positive effect on RA. Plan to catch some bees this spring and test it out. The pain is trivial compared to RA or PMR, depending on which Rheumy has the correct diagnosis. I think this guy might be correct. He gave me a methyl pred pack last week after I fell and tore some shoulder muscle. It wiped out the inflammation even in my bowels. Noticed I still had residual pain but something tolerable mainly in hands, knees and hips.

I never heard of a polymalagic reaction with RA. Thank you so very much. Wish the Rheumy would share info like you do but he has an insane amount of patients.

[PMRpro Ambassador in reply to EngineerMatthew]

That sounds like the US insurance system taking you for a ride. Humira is out of patent and here in Europe now costs about 800 euros A YEAR,

[EngineerMatthew in reply to PMRpro]

😤😤😤

[EngineerMatthew in reply to PMRpro]

I have found that caster oil relieves the eye inflammation. After about a few weeks my eyes are better able to tear.

Not sure if simple vegetable oil would not do the same but it also relieves my constipation and makes it easier to vacate. Once a week seems sufficient. Thrice a week for my eyes

[Hopeful66 in reply to EngineerMatthew]

I know where you're coming from - but I've been in progressively worsening pain for two years, so a definitive diagnosis is welcome. I'm yet to get my head around the RA, I'm not reading up on it until the Consultant has finalised the treatment plan, once I've had the final tests next week. I'm going to enjoy Christmas, eat to my hearts content and make a hole in the wine rack ........ I'll suffer for it but right now I'm not pain free so ............ eat, drink and be merry - until next week

[EngineerMatthew in reply to Hopeful66]

I wish I could drink. I just had no idea a person could feel so miserable all the time. I am a lot more empathetic now. I am debating moving to Michigan so I can just smoke weed to knock this stuff down. Still waiting for my employer to let me go. Last two months, zero income. When I come off FMLA I have to do urinalysis so nothing to kill some of the pain until I am let go.

[Hopeful66 in reply to EngineerMatthew]

Sorry to hear that, hoping that 2024 will be a better year for you😞

[EngineerMatthew in reply to Hopeful66]

Thanks, pretty sure it will be. I won’t have near the stress now that not working

[EngineerMatthew in reply to Hopeful66]

you are hopeful which is good to be. Get well

[Hopeful66 in reply to EngineerMatthew]

Thank you, you too and a happy, healthier new year

[AtopicGuy]

If only more doctors would remind themselves that:

Arthritis means 'joints disease';

Polymyalgia means 'many-muscle pain';

It's not unusual for the elderly to have both.

[Purpleprimate]

There are these crossovers with auto immune illnesses & always a good idea to get a second opinion if you'er not confident of your diagnosis.

[Hopeful66 in reply to Purpleprimate]

I was certain that PMR was a good fit, but having found out that RA, symptom wise, is pretty much identical I'm going with the expert who actually looked and listened - awaiting the blood tests that are expected to give a definitive answer. I am loath to do any reading up on RA until then - I fear that Dr. Google could lead me down a path I don't want to walk this week

[Body_bonkers]

Glad you made progress but stay private if you can afford it - I’ve gone backwards under Hywel Dda so called ‘care’

[Hopeful66 in reply to Body_bonkers]

I'm hoping that I'll be able to 'keep in touch' - he is happy to 'direct' the GP at this stage, tests etc and has asked that they forward all results to him so that he can review - so positive so far. As to Hywel Dda - lost faith in them a couple of years ago, ambulanced to A&E with Sepsis, admitted for treatment, 5 days, sent home, re-admitted 24hrs later under a 'failed discharge' - wasn't actually clear and Sepsis reared its head again ......... hospital for further week - looked at my discharge notes and saw that they had noted that I was admitted as a patient suffering 'shortness of breath' - think someone was massaging the statistics!

[Freshairfiend]

So glad you got to see him and that he was so incredibly helpful. Hope you enjoy your Christmas, even though you have RA, you now have something clear.

[Hopeful66 in reply to Freshairfiend]

Agree - not the best news, but something to work on 😐

[El50]

Pleased that you found Dr. Camilleri as helpful as I did. Wishing you all the very best for the future.

[Hopeful66 in reply to El50]

Thank you - blood tests tomorrow, as requested by Dr Camilleri - hopefully some feedback on the results and decent medication early next week, the co-codamol just isn't doing it!

[El50]

I must say that I have never been a fan of Co codamol. Wishing you all the best for your future treatment.

[Hopeful66 in reply to El50]

Me neither - stomach aches, nausea etc