Inflammatory arthritis & pulmonary embolisms?

[YorkieBard]

After years of x-rays on multiple joints (looking for osteoarthritis) & countless blood tests (looking for rheumatoid factor) - all of which returned negative results - I was finally diagnosed with Seronegative Inflammatory Arthritis in January.

My Rheumatologist first tried methotrexate and then leflunomide but both caused elevated ALT levels (despite going alcohol free) & were stopped. I am seeing him again next week to try a third medication, so in effect my arthritis has been totally uncontrolled for years.

I was admitted to hospital last Saturday with breathlessness and agonising chest pain on breathing (stopping breathing did not seem a viable option) and I was diagnosed with bilateral pulmonary embolisms. Potent painkillers eased the pain after 3 days of visual hallucinations until clot busting meds shrunk the clots down & I no longer needed the painkillers.

Because I am now on Apixaban to prevent clot formation, I am no longer able to take Naproxen, Talk about being up the creek without a paddle!

NHS (under blood clots) says that rheumatoid arthritis puts you at an increased risk of developing blood clots. It seems that the lining of veins get inflamed & this can lead to clots forming.

I wonder if anyone with uncontrolled Inflammatory Arthritis has developed pulmonary embolisms without any other obvious cause, like I did?

All answers on a postcard or the back of a sealed down envelope please!

[Deeb1764]

wow madness with autoimmune diagnosis for another person.

I don’t have this but since my lungs have been playing up plus heart aorta stenosis I have noted the last 3 consultation in the past 4 months they have mentioned blood clots. I did not realise associated with RA until recently either

Good luck with it all 🥰

[AgedCrone]

I wonder which Covid vaccinations did you have first time round?

I have a friend who had a similar experience & her medics are questioning if those vaccinations played a part.

[YorkieBard in reply to AgedCrone]

I hadn't thought of that - thanks.

I had a Moderna booster at the end of April............

[Blackberrywine in reply to YorkieBard]

Agree with Agedcrone. This has been an issue for some people after shots. There is some evidence coming out now. Might not be the case for you.

Just to add...I was left in pain and undiagnosed for years before being diagnosed with seronegative inflammatory arthritis. Years of unnecessary pain and damage. I hope you get sorted ASAP.

[YorkieBard in reply to Blackberrywine]

Blackberrywine - thanks for your reply. I'm not sure about the timings - I had my last booster 2 months before the PE but I will discuss it with my Rheumatologist when I see him in 5 days!

I think that doctors tend to look at the joint you present with today, do x-rays & bloods & say "no OA & no rheumatoid factor - so no problem" - they do not look at the presenting history & consider seronegative.

I got taken seriously when I presented a spreadsheet to my doctor that detailed my presenting history i.e. Date / Which joint / Whether x-ray & / or blood test / Diagnosis.

I got all the info from my NHS app & the spreadsheet was massive - I even surprised myself with the number of times I had been seen. As you said "Years of unnecessary pain and damage",

[medway-lady]

Yes I've had them too a good few years ago and it's really no big issue now. Lifelong Riveroxaban and it really is a well known but small risk.

[YorkieBard in reply to medway-lady]

Thanks medway-lady - you have put my mind at ease. I can't believe the improvement that I feel in just a week! Last Saturday I thought that I was dying. I know that I'm on anticoagulants for at least 6 months (but suspect for life)

[medway-lady in reply to YorkieBard]

Just trust the Apixaban, I was lucky and I thought just had a bit of flu so went to GP. For cough medication and next thing was in an ambulance and in hospital then VQ scan. Doctor said they were looking at a new treatment for me so no Wareferin then I got interviewed and allowed Riveroxaban. It’s hard to just get on with life but the way these medications work is amazing. You may get some odd residual aches but they do go and I just take the small red pill and forget it. I’ve cut myself and not bled to death but when I broke my leg and ankle the bruises were spectacular. I think just try not to worry I’m some 7 odd years on and never had a problem. I was told didn't need surgical stockings and never looked back. I had a surgical procedure in April and now they can control the medication much better so it was just stopped for a day. Likewise no problem with dentist so don’t think it’s going to change your life because it likely won’t. Look at the Apixaban as a friend that works for you and it is an intelligent drug so rarely reacts with any other and you can eat what you like too. My RA is well controlled and was before I got the PEs and I’m positive but it’s just down to luck. I’ve had all my vaccines and was advised that the risk of clots with Covid is huge so it’s the lesser of two evils to be vaccinated but it does mean your very unlikely to get a JAK medication as that is known to provoke clotting issues for some people in the older age bracket. I’ve flown since the PEs many times and take heart with your medication your going to be in the safest passenger group. Xx

[YorkieBard in reply to medway-lady]

Thanks again medway-lady, when I posted, I felt in quite a dark place, unsure about what the future would hold. Having read the replies - especially yours - I feel much, much more positive.

We were planning our next holiday when I got the PE but this week I have been looking at cruises! I'll forget cruises after your comment - bring it on Stansted Airport! (I know, I know - it's not at all right for a Yorkshireman to be living in Essex).

[medway-lady in reply to YorkieBard]

I’m a fan of Cypress and went last month. Off to Brittany next month and Gran Canneria in October. Don’t forget to move the feet on the flight and we book extra leg room or for long haul and it’s an excuse to go Virgin but Tui was great for Cypress and no doubt will be good for Gran Canneria, it’s only a few pound extra and worth it. I used to get frightened but over time the fear decreases. You might even find for a while every now and again it feels odd but it was vital to move just a bit like round the table, into the kitchen then into the garden etc. I was given a lot of information as it was so new, but it did help to trust it. nothing wrong with a cruise though so why not book two holidays? lol xxx

PS I asked why it had happened and was told, they don’t really know and as the treatment is the same that it’s not worth finding out unless more clots happen. In my case the PEs were diagnosed as “unprovoked “ medical speak for no idea.lol I never worried about why as it’d just be another worry. Xx

[YorkieBard in reply to medway-lady]

We did Greece in Oct and again in May, getting back 3 weeks before the PE. Doctors said 3.5 hr flight was not long enough to cause PE & 3 weeks was too long for the flight to have caused it, They wouldn't stop examining my calves for signs of DVT & asking if they were painful (never had painful calves).

We were looking at Oct again to get away but might just pass with it being so soon after PE. Her that must be obeyed wants to take me on a "special" holiday in April - for my 70th.

I have a couple of questions for you medway-lady, if that's OK?

Did the fact that you have had PE affect your travel insurance?

My MCP joints are always swollen & pained - to the point that I have started randomly dropping things. I noticed that they got even more swollen during the flight in May. Last Oct my left knee was swollen before the flight but totally locked in a bent position whilst in the air. My crutches were in the case (doh) & I was stuck on the plane. They took me off using a wheelchair & ambulift! Have you noticed that flying affects your joints?

[medway-lady in reply to YorkieBard]

I hadn't been anywhere to get the PE's, was taking Lefludamide and the RA wasn't an issue at all. And mine were 'saddle' and broke into talcum powder in my lungs which was good I was told. I was in hospital and then had a pain in leg leg and they scanned that and it was a DVT . I had to declare the event and it was loaded for a few years but now it doesn't affect it. I think if you survive for 3 years it comes off, I don't remember how much it cost but we are with Nationwide so had their package and still do. Being over 70 now its loaded again but only by a few quid, plus I have CKD although it is another risk factor in RA, I was unlucky with a medication which damaged my kidneys again not RA one. And Bronchectasis all declared and I think in total it cost an extra £270. It was cheapest with the package of extra benefits on the bank account which we pay monthly. My RA is well controlled so not been a problem flying but I make sure to drink a lot of water, move about every hour or so and draw circles with my feet to move muscles. I know the biggest risk is dehydration when flying. I walk normally and no pain but was held up last year and was told to say disabled next time and can then queue jump. It was the dehydration which affected my kidneys very badly so next time yes I am disabled but it's not RA. I think it's just about taking extra care and you could try flight socks I've used them when going to Florida but forgot coming home and so it might be bolt and braces, but worth it for reassurance. After my original PE's I did have a blood test and got a clot in my arm. The GP then decided to do another no idea why and so the other arm got a clot. Seen by Haematologist as so painful in an emergency clinic as it was like sausages under the skin from elbow to arm pit and then he said Riveroxaban for life but just trust it and I do. I've never had any issue since. So I can't say what you should do obviously that's up to you the boss and your doctor but if it was me I'd just go but its not good anyway to have uncontrolled swelling so perhaps see the RA consultant and ask for better medication. I'm 71 and RA only shows in my right hand knuckle and even then isn't painful because the medications work for me. See if you can get some better help as the new blood medications are very clever and don't thicken the blood but inhibit the production and effect prostaglandin so make it a bit more stretchy and are life changing for most people on them. I hope that helps and enjoy a special holiday. xx

[OldTed60]

It would be worth getting checked for Antiphospholipid/ APS/ Hughes syndrome (usually carries its own antibody) - which is more strongly associated with both Lupus and Sjogren’s. My friend had a double PE in 2021 and is fairly convinced it was triggered by his first Covid vaccine. He doesn’t have an autoimmune disease he’s aware of but I don’t think he’s ever been tested. He’s recently narrowly survived and in remission from a rare type of blood lymphoma so I do wonder. But he’s not interested in finding out more and doesn’t have arthritis symptoms

[YorkieBard in reply to OldTed60]

Thanks OldTed60 - I'll certainly mention it to the Rheumatologist next week.

[Inflames]

Hello - I had a similar process to you. Same diagnosis of seronegative inflammatory (sometimes called seronegative RA) after a long series of tests and no meds/painkillers. Mine was very sudden. I just woke one morning and couldn’t move my joints at all. Couldn’t stand, move fingers etc.

My rheumatoid specialist ordered an anti phospholipid test at some point (by accident, ticked the box when ordering test) and we found I also have a very high count which makes me more likely to get clots. I can manage it in various ways (including thinners when I travel) and haven’t had a clot as far as I know yet but the risk is there. As someone else said above this is often diagnosed alongside arthritis, lupus and other autoimmune diseases. I don’t know why they don’t test for it as standard. But it’s definitely linked and worth getting tested for, you may have to push for it.

[YorkieBard in reply to Inflames]

Thanks Inflames - you are the second person to mention the anti phospholipid test. As I said to OldTed60, I will mention to the Rheumatologist when I see him next week. As a Yorkshireman - I do pushing quite well!

[pippin_fort]

I had a PE in March 2020 after my first bout of Covid. It was determined at the time that Covid had caused it, because it thickens the blood. I had no idea that the arthritis could have contributed to the problem. This has never been mentioned to me. I have had so many chest infections and pneumonias now that it was felt safer to keep me on Riveroxiban for life. So I too have been living without Naproxem since then. It is a pain literally because the only other route for flares appears to be steroids (20mg prednisolone). I have severe asthma too and have had to take steroids so many times to control asthma exacerbations (40mg prednisolone) that I have developed adrenal insufficiency and am now on steroids for life also. I have now got bronchiectasis in both lungs too. It has been fairly miserable without Naproxem in my tool box I must say. I feel like I have aged considerably over the last 4 years! I now need oxygen for flying, carry a nebuliser also, my pulmonary function is monitored remotely and have my own personal pharmacy at home. I keep getting costochondritis, have a bone spur in my shoulder and Achilles problem that is being investigated, My knees, shoulders, neck and left ankle are painful permanently, but my Rheumy, who is waiting to retire seems not to want to put me on biologics. I know that they might destroy the last semblance of my non-existent immune system but crave help with all the joint pain. I do hope you find a better solution soon. It does seem cruel to leave us in so much pain. I wish you luck.

[YorkieBard in reply to pippin_fort]

pippin_fort - Thank you for your reply - I feel your pain (well it sounds very similar to my pain). I am desperate to get on a medication that helps with the RA & can prevent the PE returning, if indeed there is a link in my case.

[Runrig01]

I have ankylosing spondylitis that was not diagnosed for approximately 25yrs. The years of uncontrolled inflammation has done damage to my body. Initially it seemed all musculoskeletal, with fused Sacroiliac joints and ribs fused, with no chest expansion. I was diagnosed AS in2016, in April 2018 I had a a severe stroke at 52yrs of age. initially they couldn’t find a cause, my cholesterol and blood pressure were fine. I had lots off tests including a bubble echocardiogram, with no cause found. They called it a kryptogenic stroke, which basically means no cause found. He decided it was probably the inflammatory arthritis which caused it I also seen an endocrinologist shortly afterwards, who diagnosed severe adrenal insufficiency, having listened to my symptoms leading jip to the stroke, she said it sounded like an adrenal crisis, with my AS contributing to it. I’m also no longer allowed nsaids, but thankfully y gp tried me on pain patches, which help enormously. I also have pulmonary fibrosis from the years of uncontrolled inflammation, as well as heart issues.

[YorkieBard in reply to Runrig01]

Thanks for your reply Runrig01, I feel that I am starting out on the journey to try & unravel what caused the PE. Like you my cholesterol and blood pressure are fine & the hospital doctors couldn't understand why my calves were not painful - they were expecting symptoms of a DVT.

I have a long list of questions for my Rheumatologist next week!

[Jeremycfc]

Hi,I've also been blessed with RA and had an very unpleasant experience with a PE after an hernia operation ten years ago, Dr's said it was just bad luck but I'm convinced it was the RA as its behind most of the things that go wrong with me, was on blood thinners injections to the stomach wall for a while and other stuff, came through it in the end but did knock the stuffing out of me,wishing you a good recovery, KBO

[YorkieBard in reply to Jeremycfc]

Thanks for replying Jeremycfc, My stuffing was well & truly knocked out - but I am a very determined sod & will KBO!

[Lolabridge]

Yes I was diagnosed with bilateral PEs in September 2020 and put on Apixaban too. Yes I’ve also been told they’re more common with inflammatory arthritis but also can be caused by Covid infection.

Mine occurred before Covid vaccines were available so definitely not the cause. “Incipient and unexplained “ was my consultant’s verdict, so who knows? The arrival of SARS-COV2 meant I was made to wait more than my usual 6months between infusions of Rituximab so my RA was less well controlled.

But the second CTPA scan after six months showed the PEs had cleared and I’m now on Apixaban for life.

Since Covid infection can often cause blood clots in anyone, I no longer worry about getting them! So, I suggest you keep taking the Apixaban if your doctor recommends that and don’t worry.

[YorkieBard in reply to Lolabridge]

Thanks Lolabridge.

When I posted this question, I'll admit that I was very worried. However the replies I've had (including yours) have demonstrated that there is life after PE. I have no issue with making my new friend Apixaban a friend for life!

[Spanelmad]

Ask to be referred to.a Heamatologist so it can be unravelled why you had the PE., My Reaumatologist was happy to refer.Mine was bilateral 14 days after a covid vaccination.But I've been diagnosed with a MPN , a form of blood cancer.