Inflammatory arthritis & pulmonary embolisms - an update & a question on possible meds.

[YorkieBard]

Hi all ,

In my 1st ever post on here 6 days ago regarding a link between inflammatory arthritis & pulmonary embolisms - I received many replies - all of them excellent.

Thank you so much you lovely people!

Today I saw my Rheumatologist & worded my question to him very, very carefully:

"So Doctor, although I don't do Dr. Google (I lied, as I do have a scientific background), I read on the NHS website that there could be a link between uncontrolled inflammatory arthritis & my recent pulmonary embolisms. What are your thoughts on this please"?

I waited for the explosion - but it didn't happen!

"You are very well read. There are some unlucky people with your condition, that are as yet uncontrolled, who develop PA for no apparent reason. Although I can't prove it right now, I believe that that you could well be one of those unlucky people".

Whew squared!

Acceptance with no put down at all!!!

MTX & LEF both raised ALT liver enzymes - so are now no goes.

Steroid tablets have had limited effect in the past, so today I had a steroid injection in a buttock. He did warn me that the injection could leave a white mark. I said that I'm old enough & ugly enough for that not to bother me!

He also had a sense of humour. As I stood braced against the bed, with my jeans around my ankles:

"This is the biggest needle I have, it's the only one I have, I've used it on thousands of patients & it's well blunt", I gave as good as I got, by asking him if it was rusty - his answer was affirmative

The man now wants ultrasounds to both hands & a MRI of my spine before he gives me a third treatment. He gave me leaflets on, Adalimumab, Etanercept and Sulfasalazine to read & said that WE would discuss the pros & cons at my next appointment!

A consultant that considers a patient's viewpoint - hen's teeth comes to mind!

My question here is as follows:

If you have had experience of 2 of the 3, or even all three of the drugs mentioned, would you please enlighten me as to the pros & cons to allow me to start formulating an opinion. I will be doing my own research & of course be guided by the Rheumatologist - but I have to start somewhere!

Thanks in anticipation,

[medway-lady]

Good news I said well known risk and I use Etanercept weekly injection with Azathyoprine daily pills. A combination that works for me. I don’t know about the others as never been prescibed them. I like medical people with humour. I saw dentist this week and I nearly swallowed the drill, when he said to his nurse “2 mixes of Fuji 10” He laughed and said yes it’s real and I saw Bob Mortimer on HIGNFY. But I don’t buy it on Amazon!

[YorkieBard in reply to medway-lady]

Thanks for replying medway-lady - great dentist story! Sorry I'm so late in replying - the rheumatologist had the last laugh regarding the needle - the steroid jab precipitated the worst flare I have ever had. It affected almost all my joints (including my right hip & elbow that have never been affected before).

Thanks for the info on Etanercept & glad it works for you.

[Marionfromhappydays]

Ha ha ha , your Dr sounds awesome ! They are a keeper !

I am taking benepali (etanercept), its taken me from not being able to function to I now have a job ! Never thought that would happen.

I'm about 2.5 years down the line with it , I've had 1 little urine infection which I jumped on quickly but other than that no issues at all. I think I've had less colds and infections than I did before I was on it !

I don't get any side affects taking it and I consider myself fortunate to have it.

Good luck with your journey, with a great Dr hopefully it will be less of a struggle

[YorkieBard in reply to Marionfromhappydays]

Hi Marionfromhappydays,

Thanks for the info about etanercept & for sharing how it has helped you.

I showed my better half your comment about my Rheumy being a keeper & she said that won't work as he's married already!

I seem blessed with good-natured doctors - our GP if very professional during every consultation but afterwards as she walks us out to the waiting room, to collect her next patient, we always seem to be laughing, You can almost read the minds of the other patients who all seem to have glum expressions,

"Well there can't be much wrong with them".

[nanapat61]

I've had all three of those medications - have I won a prize?😂 Sulfasalazine was the first drug (along with Methotrexate) that my Rheumatologist prescribed for me back in 2017. He increased the dose after 2 months because it wasn't have any positive effect but I had a severe reaction in the form of an allergy-type rash starting on my neck which spread all over my upper body. It's on my notes now that I have a Sulfasalazine allergy. Over the years, I have tried both Adalimumab and Etanercept but neither controlled my symptoms adequately, unfortunately - I had big flares on both of those so they were considered to have 'failed' and I needed Prednisolone to calm things down. Likewise with Ustekinumab. Good luck with whichever line of treatment you plump for - hope it works for you!