Think I’m out of remission 😓

Hairobsessed123

Not sure but my hands are killing me the last 2 days !

I went into remission in March after taking antibiotics for and infection!! Came off meds life has been great !

caught covid 17th September and yesterday and today pains in hands and bottom off feet not sure if I’m supposed to see GP or ring Rhumatology lines ?

Anyways hope everyone is keeping well not been on here in ages I think when things are good u just get on with life until it’s not !

jamieA

Hi @Hairobsessed123

I'm sorry to hear that. I'd call your rheumatologist's secretary to see if you can get an appointment - I don't think the nurse can prescribe DMARDS without a rheumatologist being involved. I had a reaction to an MRI contrast agent a couple of months ago and my hands, wrists and toe joints have been affected. I saw my rheumatologist last week on my 6 monthly appointment and she suggested a steroid injection and I had it at the clinic on the same day. It made a significant difference - I can now make a fist and have stopped walking like a duck.

She said that having something trigger an increase in inflammatory symtoms can sometimes be brought back in check with a steroid injection working alongside my existing meds.

Hope you get seen quickly.

Hairobsessed123

Thankyou @jamieA !

currently off all meds since March , I’ll ring the rheumatologist line this morning see what they can do !

I think covid has triggered me tbh !!

jamieA

Hi @Hairobsessed123

I think you might be right - it's well documented that infection or a virus can trigger PsA in the first place though it's not known how. I most likely had covid in 2020 with recurring chest infections afterwards. Six months later I was diagnosed with PsA, then pneumonia and then a heart condition. A number of the medics I've seen have attributed all 3 to me having had covid. A senior rheumatology nurse who sees me also suggested that the number of different antibiotics and the frequency I'd had them in the 6 months before my PsA diagnosis may have contributed to it.

Arthuritis

@Hairobsessed123 First of all I am really sorry you have lost your remission, I hope you can get it back. I think once you have had RA, the immune memory of it does not go away, instead controlling the trigger matters more. Ie avoiding waking it up.

Perhaps understanding how I got control of mine will help you find a solution with a smarter doc.

In my case I think it’s some gut bacteria that can cross an already weakened gut wall, which the immune system upon seeing, rings the flare alarm bells. I have found in my case, to avoid food that will allow more holes in my already permeable gut wall, (lectin from beans or gluten) allowing the trigger bacteria or proteins to get across, or avoiding having too many of these unwelcome bacterial species, either not eating what they like to feed on (fructose) or killing them with antibiotics. I found being extra vigilant with dental care also helped as dental bacteria can also trigger RA flares (Porphyromonas gingivalis, see BMJ article by Prof Venables, University of Oxford, Kennedy Institute of Rheumatology). I use interdental brushes & corsodyl gel.

The important thing is to try to replicate the conditions & actions that gave you your remission.

I took another dose of antibiotics, which fixed it for me, but isn’t a sustainable solution although it is used to manage bacterial overgrowth in IBS /IBD patients taking immune suppression, as their gut irritation, if not managed, can cause RA symptoms.

I suspected Covid might have triggered my initial RA, as it’s known to damage tissue with ACE-2 receptors (gut, lungs, blood vesssls), weakening the barrier between gut and blood stream, allowing the immune system to be triggered.

I think in your case @Hairobsessed123 it was a skin infection that was treated with antibiotics that gave you your remission, if I recall correctly. Do you think enough of it might have crept back, triggering the response?

I have a highly restricted diet now, but it keeps off the flares and the need for immune suppression. (Hated the numerous infections and shingles while I was on heavy suppression with max MTX & HCQ). My diet is leafy green veg smoothies, small amount of beef or steak potatoes, no fish, chicken, beans or straight fructose in the diet, ie almost no fruit. 3 cherries gave me a huge flare, as did beans even when I was suppressed. Strangely enough, I can have the food I avoided during suppression (potatoes & beef steak) but none which I enjoyed during suppression.

From Prof Claudia Mauri’s research, UCLH. Pls Google search.

I would suggest getting a second opinion, as most consultants, esp rheumies, only have the hammer of their own speciality in their heads, and see all problems as a nail, to be hit with immune suppression. Even though their own text books suggest that they should check for reactive arthritis, as an alternative diagnosis before giving life long suppression.

The Reactive Arthritis diagnosis is where the immune sys mimics standard RA symptoms because there is a trigger present, virus, drug or bacteria, and when removed from blood exposure, the symptoms subside.

I have so far managed to avoid suppression by testing what I think is the mechanism, and so far it’s worked for me.

Like you, I have been off MTX since March, although still occasionally take HCQ, and keep MTX handy just in case. Still afraid of RA flare pain.

Happy to discuss further on DM.

Arthuritis

@jamieA PS thanks for the MRI contrast heads up. I avoid it now.

jamieA

Hi @Hairobsessed123 and @Arthuritis

I've read a number of reports where medics have linked covid to PsA. There is one on the National Library of Medicine site which is very specific. For some reason I cannot link to it here so I've pasted the citation detail.

Essien F, Chastant L, McNulty C, Hubbard M, Lynette L, Carroll M. COVID-19-induced psoriatic arthritis: a case report. Ther Adv Chronic Dis. 2022 May 20;13:20406223221099333. doi: 10.1177/20406223221099333. PMID: 35620185; PMCID: PMC9128051.

There was also a case reported in Italy at the start of the pandemic there.

https://www.ajmc.com/view/researchers-report-first-known-case-of-covid-19-triggered-psoriatic-arthritis

It does seem a logical.

@Arthuritis

Regarding the gadolinium based contrast agent I read a reseach paper that documented that in lab rats 24 hours after being injected their TNF alpha cytokine levels had increased 5 fold. I'm on an adalimumab biosimilar which is an anti-TNF alpha medication so you could join the dots - though the medics I saw wouldn't be committed to saying so.

Arthuritis

@jamieA I completely agree with your logic. Much as Louis Pasteur, Fleming, Dr Edward Jenner & Dr Barry Marshall… giants of medicine would commend you for your logical science based approach, today’s doctors are simply unwilling to think for themselves, or question their dogma, even in the face of overwhelming evidence. Because none have their courage to rock the boat.

Hairobsessed123

Thanks for replies @Arthuritis @jamieA

it was some infection Illness which made me poorly high temp ect the dr prescribed the antibiotics then I went into remission !

I deffo think the covid has re triggered me !

I have to go for blood test tomorrow and she is going to get me appointment for a review with consultant because I haven’t been reviewed at all since 2021 which is shocking only seen in 2 times in total all over the phone with nurses !

Anyways hope u all ok x

Hairobsessed123

Just a quick update ! I have a blood test booked today !

Bad news is I have a telephone consultation with nurse or consultant doesn’t say which not until 15th December!

Tbh I am just at my wits end I haven’t seen consultant since 2021 I have only seen him twice in my journey I want to complain or see different consultant what is your advice ? X

jamieA

https://community.versusarthritis.org/discussion/comment/713249#Comment_713249

Hi @Hairobsessed123

I changed my first rheumatologist in 2021. I did so by writing a letter to him telling him that if he wasn't prepared to help me I wanted to be referred to another rheumatologist. I also contacted my GP asking for a change of rheumatologist. I don't know which route was successful but I was transferred to another rheumatologist at the same hospital 5 months later and my dealings with the new rheumatologist and her staff are much better.

I don't know how your rheumatology department works but in my case at the outset I was given a card with contact numbers for the consultant's secretary and a clinic help line. The help line works as a recorded message service where I would leave a message and a nurse would contact me usually within 2 days. I've used this in the past to get seen quickly by a nurse and be given steroid injections when I had bad flares - before I was put onto biologics. The nurse contacted the consultant who signed off for the steroid injection to be given. I know this as on one occasion my first rheumatologist signed off on a high dosage nurses weren't licenced to give. The nurse was apologetic about the delay in getting that rectified and told me the procedure.

Hope you get some respite soon.

Arthuritis

@Hairobsessed123 Its possible that Covid triggered you. I suspected the flu jab took me over the threshold from without symptoms to with symptoms as I got symptoms within a month of the jab. Unfortunately as Covid is a virus there’s no point in antibiotics if that was the trigger. You’ll need to wait it out. I have managed to gain control and avoid anything that would trigger a flare, mostly by trial and error. Ie, note the possible triggers, avoid, once it’s calmed down, try a small amount of the trigger to see if it does something. Wait until it passes if triggered, then avoid future exposure.

Here are the things that nearly drove me back to MTX

TRIGGER foods

Cherries (fructose)

beans (lectin)

gluten

milk products & proteins

chicken

fish

Rough fibre

SAFE foods:

potatoes

roast beef

ham

green veg

of these, during suppression I never ate the “safe foods” on the trigger foods as they were considered “healthier”. It would seem that my immune sys learnt to “hate” the healthy foods but could not muster the T soldiers to attack during suppression. Now that the suppression is off, I have to eat things it has not grown to “hate”!

You’d think junk food like a Big Mac, coke & fries would trigger, but it didn’t.

That said, green leafy veg did not trigger anything both during suppression & after. It is now my staple.