Which Meds?

Axe09

Hello 😊

I have recently been diagnosed with RA, which came as a bit of a shock. Fit and very active male.

I haven't started meds yet (as I may be in denial I guess) but am undecided whether to take Methotrexate by pen injection or Sulfasalazine orally, daily. I have been given a choice!

From what I gather SFZ is not as effective at MTX but the serious side effects may be less?

Any advice would be greatly appreciated.

jeddison1985

Hi @Axe09 firstly let me welcome you to the forum I hope you find the information and support you are after from our wonderful community.

I can see from your post that you have recently been diagnosed with RA and not sure which medication you should try. From personal experience having been on both medications you mentioned in the past I can tell you that everyone's response is individual to them.

The site is full of information and I wanted to signpost you to some information which could help around Methotrexate and Sulfasalazine.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/sulfasalazine/

Also this is a thread on Methotrexate where people have shared their experiences before.

https://community.versusarthritis.org/discussion/comment/314878#Comment_314878

And a similar one of Sulfasalazine.

https://community.versusarthritis.org/discussion/comment/337456#Comment_337456

Please feel free to search the forum for others with similar experiences and I am sure that some of our community will be able to help offer some useful suggestions.

Take care and I hope you get some relief and answers soon.

Thanks

Joe

frogmorton

Hi @Axe09

You have summed the two options up very well there! I suppose it is very much a matter of personal choice.

Trial and error is the truth of the matter as well as how aggressive your own personal disease is. Many people do not experience many side effects at all and some do just while they are adjusting to something 'new' in their system.

In either case you will be monitored closely especially at the beginning to make sure your body is coping with them.

Personally I would bite the bullet and make your decision. Do let us know which you chose!

Take care

Axe09

Thank you @frogmorton and @jeddison1985 for the information, it is very helpful.

I must add that the only reason I am on the fence is as my diagnosis happened very unexpectedly.

No real joint pain to speak of prior to diagnosis.

Had my first AZ vaccine which caused my opposite arm (elbow) to become inflamed and locked. I could barely lift my arm). I was unable to see a Doctor face to face but was told it was possibly Tennis Elbow and I should do some hand/wrist exercises.

Things started to improve after a couple of months and I was able to do most of what I could do previously (apart from training, in fear of what damage I may cause!). Long story short, I had my second AZ vaccine and within 12 hours I was in A & E and remained in hospital for 8 days. My elbow was severely inflamed. I was unable to move it again. I was on antibiotics and fluids by IV. CRP and RF were worryingly high yet joints all looked fine on MRI and X-rays. CRP now 4.2 but RF and Anti-CCP are positive.

I had a bacterial infection caused by the vaccine, according to Orthopaedics who passed me over to Rheumatology after the infection was treated. 5 months since my last AZ vaccine and things seems to be improving yet an Ultrasound a couple of weeks ago showed inflammation. I am able to do most things still, gardening, heavy lifting so I am not sure what to make of it. After 14 weeks from diagnosis should I be in pain or is it normal to feel fine?

Hence the reason for being a little hesitant in commencing with meds immediately but if I am to continue (which I am sure that I will) I will go with the SFZ. If my symptoms continue to improve with time, would you still advise taking meds based on blood readings only? I understand that this is really a question for a Professional but just trying to get some views on this based on past experiences. My Consultant is pushing for me to take them and I know she is only trying to help but I have never experienced anything like this, ever and am finding it difficult to comprehend with all the variables at play in the diagnosis of RA. I would not want to cause any irreversible damage to my elbow (as it is very useful!!)

Apologies for the long post and if I have posted it in the wrong place 🙂

JenHB

Interesting to read about your experience - my diagnosis happened start of October as knees became very swollen suddenly end of August (a few days after a cycling holiday, but some people subsequently tested positive for Covid and a month after second Pfizer jab) and no other symptoms. Had steroid injection/fluid drained which seemed to calm them down but now a few days after having a flu jab can't stand up from a chair without using hands and so awaiting a call back from the rheumatology nurse. Like you, normally fit and active

frogmorton

Aha! I see your concerns now @Axe09

Thing with RA (and most inflammatory Arthritides) is they can be like that appear to be gone and all is well for months some people even years. It's tempting to think it's all over, but it's that thought of long term damage you might be doing. As you say an elbow is very useful to have!

CRP (inflammatory markers) is down at the moment, but if you flare again it will go back up. Inflammation is still visible on ultrasound. Hmmm....your consultant won't want you to risk long-term damage to your joints.

How quickly does she want a decision? Is she happy to delay until your next review? . It sounds as though you have made a decision there to try Sulf as and when you go down the meds route. If it helps there have absolutely been people here whose disease is under control on Sulf alone.

You do not need to apologise for the long post it was useful and not posted in the wrong place at all.

@JenHB I am glad you are getting a called back from Rheumatology and are still being monitored. It could be that your vaccinations are linked, but maybe not it could be a coincidence. I hope yours and OP's have been noted 'somewhere' in case it is more widely significant. I hope things improve for you soon and you get some answers ((()))

Axe09

https://community.versusarthritis.org/discussion/comment/687172#Comment_687172

It's a difficult one isn't it. Either RA was dormant and the vaccine triggered it as a flare up so it may be a good thing that it has been brought it to the fore. Or, the vaccine has caused (dare I say!) it but I guess we will never know the answer to that.

We don't know that if the vaccine has caused it, if it will be permanent or will the symptoms subside in time? Whatever the answer to these questions we ought to try and get it under control in case it is a permanent feature of our makeup 😑.

I would be interested to know what your rheumatology nurse makes of it and if your blood-tests show as positive for RA.😊

Axe09

https://community.versusarthritis.org/discussion/comment/687177#Comment_687177

Hi Toni

Would you say that my symptoms (hospitalisation) was a typical bad flare up? Is this what happens? I forgot to add that my BP was very low and temperature very high. Upon examining my blood tests results I was very poorly and thought the worst was going to happen, yes it nearly finished me off! My white blood cell count was very low. After a month, all of my blood results wee back to normal apart from Anti-CCP so it was all a little odd. My GP suggested I register this with the MHRA on the Yellow Card system in case it was a side effect of the AZ vaccine. I would be interested to know if many others have had a similar kind of issue.

Is it normal with RA for the CRP to fluctuate whilst the anti-CCP reading remains positive? Is it possible for the anti-CCP reading to fluctuate or will they always stay positive, once positive?

I have to see my Consultant on the 07 December. The purpose of the next appointment is to decide which med I feel comfortable with and to begin taking it. Every time that I see her she says it feels like a medical assessment as I always have lots of questions.😊

frogmorton

Well it's all new to you @Axe09 so you will have lots to ask your Rheumatologist at the moment.

CRP can definitely fluctuate I remember when my youngest had leukaemia her bloods were done every day and her inflammation/infection markers used to even warned us that she was going to be seriously ill. In her case neutropenic sepsis In our case likely with a flare.

No-one ever mentions anti-CCP once it is positive again they just seem to look at things like CRP and examinations to assess disease activity. Do find out what you can very interesting!

Not everyone ends up hospitalised, but of course some do. In my case I feel like I just woke up one day 'stuck in position' unable to straighten my legs at all. Looking back there had been clues short period of swelling and a high(ish) temperature. Flares vary so much, but most of what you describe isn't untypical, high temperature I imagine very very tired? and swelling and pain, joints very stiff. My first flare lasted about 6 weeks and tapered off. Since then of course I have been on medication and flares are rarer and seem to be shorter in duration.

Definitely you should report on the yellow card regarding the AZ vaccination 100% they need this sort of information and they will decide whether it's relevant or not.

Good luck on the 7th Dec 🤞 make sure you let us know what you decide.

CCM

40 years ago I was a fit and active male when I was given my RA diagnosis. Less active now, but who isn't at 73. My point is that there will be ups and downs, but life is still there to be enjoyed. Relish the things you can do, but do not regret the things you can no longer manage.

I have been on Methotrexate by pill and injection and Sulfasaline. I prefer the Sulfasalazine, which in my case is combined with Hydroxychloroquine.

Good luck

CCM

Axe09

https://community.versusarthritis.org/discussion/comment/687225#Comment_687225

That's good advice, thanks!

Arthuritis

@Axe09 @CCM I am also recently Dx’d, in October, but doc suspected it in july, and thought the trigger might have been excessive excercise walking in Sept 2020, resulting in unbearably painful feet which resolved, but distance walked steadily declined, until one morning in july I woke with painful stiff hands and feet, which did resolve, and i stayed in denial, esp after a hospital doc told me i didn’t have it after pushing and pulling my hands, even though i explained i struggled with taps. In denial I stayed until my right index finger tendon was on fire and finger unmovable. Then saw private rheumy in Oct and bloods came high +ve. He wanted me to take mtx immediately but i was hesitant as these drugs need careful monitoring and i had did’t have funds for a follow up. I am hoping the serology will get me referred to an nhs rheumatology programme soon. I took the hydroxy prescription though.

JenHB

in answer to @Axe09 - in September my bloods showed high rheumatoid factor hence my referral! She thought that the flu jab probably caused some muscle stiffness which I noticed most in the knees due to the fact I've had a significant loss of muscle tone and I also had no noticeable swelling or pain. I've got a telephone appointment start of January just to check how things are going.

Axe09

Hey @JenHB

I guess they can't be too worried if they are leaving it util January? A good sign I hope 😉

I have an appointment this afternoon for meds. Still worried about taking them though as too many variables with my diagnosis and how this happened.😐️

Keep us updated on your progress.

Arthuritis

@JenHB Hi, any idea what was your ACCP level?

Please don’t assume just because your GP has a laissez-faire attitude means it’s ok or not serious. It just means your GP is not aware of the NHS best practice guidelines on this, “hit it hard & fast” and treat as urgent, as the best prospects of limiting damage is to address it early before it spreads and becomes significant with irreversible damage. I ended up educating my NHS clinic on the difference between OA & RA, and forwarded them a link from a patient video accurately describing the differences, and the lack of awareness of RA & the need for urgent treatment.

They were gracious enough to acknowledge that all the clinicians at the surgery would benefit from watching it. Too late for me as I had reported my symptoms in July and they paid no attention, until it got so bad that I ended up using up all my savings trying to see a private rheumy who promptly diagnosed me with ACCP, RF & ANA tests showing I have a very aggressive form.

I will push to get the following tests regularly from my GP:

ACCP

RF

ANA

C-RP

ESR

You might want to do some research on this, but most of all, get your GP to take it seriously, because it is. The earlier the GO tackles it, the better your prospects.

CuriousSquirrel

Hello @Axe09 , long post coming up, I hope it's helpful...

I have had an experience that is spookily similar to yours! I had the AZ vaccine back in March and two days later I found I couldn't straighten my elbows. Pain followed shortly after. Next I got pain in my jaw and it became misaligned. Then pain in my hips and lower spine, and later swelling in my knees and ankles. My diagnosis is currently psoriatic arthritis with a question mark. Ankylosing spondylitis was also mentioned, but everyone was a little baffled so they can't decide exactly what kind of arthritis it is yet.

I am female, was 30 (31 now) had no symptoms prior to this, exercised a lot, work a physical job, nowhere near overweight, no family history of arthritis. I had extremely mild psoriasis about 6 years ago which went away with topical cream never to be seen again.

The doctor tested my imflammatory markers and ordered X rays of my elbows and told me I didn't have arthritis. (CRP 14, ESR 26, no sign of joint damage on X-ray). I managed to get a physio referral, and the physio referred me to a rheumatologist and they ordered an ultrasound and an MRI. They both showed very obvious inflammation and I was subsequently diagnosed and prescribes etoricoxib and methotrexate.

Because I am 99% sure all of this was caused/ triggered by the vaccine, I have also been terrified of starting the medication. The way I have been spoken to when I voiced my belief that the vaccine caused this has eroded my trust in the healthcare system to the point where it's almost non-existent.

Have your concerns about the vaccine been taken seriously by anybody? I keep getting told there's "no evidence" the vaccine could cause this, and that it was "just a coincidence." Every day I hear or read something that makes me more certain that the vaccine caused or triggered it.

Anyway, I was offered a choice of mtx or ssz, and was more frightened of methotrexate so was going to opt for sulfasalazine, but after reading about various experiences and weighing up dangers, effectiveness, side effects etc, I decided to give methotrexate a go. I opted for injections because I had read that some side effects are less likely that way. My experience so far after a month on mtx:

Day after injection #1 (10mg): The 'hangover' I had heard so much about. Headache, very slight nausea, extremely fatigued. The next day I was OK.

Day after injection #2 (10mg): Fine

Day after injection #3 (15mg): Same hangover as after first dose

Day after injection #4 (15mg): Fine (even after an all-nighter for a rave a couple of days before!)

I have only had one blood test so far but the results from that showed no problems. I have another this week.

I have been having a continuous period since I started mtx, which the rheumatologist seemed unconcerned about but it is bloody annoying (pardon the pun.) That is the only continuous side effect I have noticed so far.

I am so sorry to hear about what's happened with you. It's such a shock and such a bizarre experience to suddenly be thrown into this with no warning. I am also new to this and definitely can't provide expertise but feel free to message me any time if it would help!

frogmorton

Get that period checked out @Axe09 why has it not stopped?

This needs looking at for definite.

Take care

Axe09

I read that MTX can affect your ovaries? It's not my field but I would say it definitely needs discussing with the Consultant sooner rather than later!