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Sero positive consultant tells me it's most aggressive and I will flare soon ☹️☹️☹️

Sero positive consultant tells me it's most aggressive and I will flare soon ☹️☹️☹️

Hi all,

Hope you are all coping well with this horrid disease. I have been really lucky for a few months now, I had to be taken off MTX as liver was affected so bad I am not allowed to take it again. Consultant today told me that she cannot believe I am ok just taking 200mg HYDROX - she said I don't like to burst your bubble but as my RA is the most aggressive she feels I will flare soon. I came away with two leaflets on Sulfasazine and Leflunomide. As soon as I flare I am to call to request a prescription ? Please may I ask for any of your thoughts? I've been reading tonight about Sero positive and it's quite common to get vasculitis - scaring myself to death here.

Love and pain free hugs to you all ❤️

27 Replies
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I'm sero+ too. As is my Mom. I would not wait for a flare. I would take the best drugs they are offering you and take them asap. The very best we can do is head off the damage, not deal with the damage after it happens.

Thinking of you.

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If you are expected to flare soon, I would suggest you get started on the lefluominde. It takes some time to kick in . I don't want to rain on your parade but I want you to know that Lefluominde can also harm your liver....but this doesn't mean it will. All meds have side effects, even eating too much liquorice can harm you. So I'm happy your doctor is "on the ball" on stopping your meds before they harm you.

I wish you the best.

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Thank you but the consultant says you can never know as everyone is different that is why it is so hard to get the right Meds x

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I agree with your consultant and you need to take his/her advice. We are all different but I just wanted you to be aware about Lef.....personally, I still hold out hope that one day in the future, we will hear our doctor say,

" take 2 pills in the morning, you will be cured in an hour"....one can hope eh?

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Bless you yes I wish!! Thank goodness we have each other on this site to keep us sane xx

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.

Kindly, beware ⚠️ what you hear 👂 & come to 'believe' 🛐 , Doughnut61 ( 🍩 61 ). 😌 🙏

.

There are living ☺️ , breathing 🌬 , 'vital' 💃🏻🕺 seropositive's + who are actively out & about — managing well via medical 💉 💊 and/ or lifestyle 🥗 🏊‍♀️ 🚶‍♀️😌 approaches. 👍👍

.

Please, proactively research 🕵️ 🔎 & learn 🤓 📚 as much as you reasonably can. 🙏 [13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not): healthunlocked.com/ra-warri... ]

Do not allow someone's pre-determined 'opinion/ belief' inadvertently take the wind out of your sails ⛵️ or frighten 😨 you into premature resignation 😔 , defeatism 😞 , or passivity 😴 . . .

.

Kindly reflect, it's a 'different time' ⏳ 🕰 ⏰ ⏱ :

• What was 'so' in the past 🔙 isn't, necessarily 'so' today 📆 .

• And, just because someone else had a horrific 😱 experience in 'their day', that doesn't mean you too are destined to have a horrific 🤤 experience in 'your day'.

.

Consider "thinking outside the box." ——> 🤔 💭 outside the 📦.

.

This is the "fight 👊 of your life, for your life". ✊️

You can slow down 🐌 , reduce 📉 , even 'derail' 🛤 disease progression by diligently applying multi-disciplinary approaches. 👍👍

.

You're in good company, 🍩 61. ☺️

Please take very good care of yourself. 🙏 🍀 🌺 🌞

.

Aside: Your moniker brings a smile 😊 & a giggle ☺️ .

Reminds me of "The International Sign of the Donut" from Tim Burton's "Mars Attacks" film 👽 👆⭕️ : beatsloop.com/video/xbgcft

.

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Thanks I needed your positive thought today... it helped

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Good to hear, widgie. 👍 😌 🙏

Don't know if this will help a bit more, but consider popping over to dbestdeb's comment over at post: healthunlocked.com/nras/pos... .

Think that can sometimes help our situations significantly? 🤔

.

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Love your photo. Why didn't the rheumy give you the script before you left so you could pick it up when you need it instead of you having to ring and possible having to make an appt and waiting for it.xxxxx

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Consultant said i can call straight away . And I am to decide. Which of the two drugs I try next, she gave me leaflets to bring home and read. I'm just trying to decide which is the most lethal out of the two. It's all so scarey - I felt so ill on MTX

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Like others here, I can't understand why your rheumy would want you to wait for a flare. Suely starting meds now so they have time to start working before a flare would be good practice? As with everything in life all meds have side effects but I'd be thinking that Sulphasalazine or Lef could make life so much better and even, perhaps, lower the risk of a flare. Wishing you better

Jan

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Thank you x

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For what I can see all of your replies are spot on l to am sero pos and it took some time to get on the right m meds. As it takes time to get into your system l would start now to get the full effect also that it agrees with you in that you can change to a different med.

Good luck for the future

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I agree with what all of you said above. I don't think you should wait for it to flare to call the rheumy. You should be given something else to avoid flare if possible.

I am lucky that I am seronegative. When my liver markers were a bi high the last blood test, it was up and down in fact, my rheumy decided to reduce the mtx on me. But she did warn me that I might risk to flare. Over here, I can just walk in if I flare hence it is okay for me to take the risk and I am not totally take off with mtx.

Amy

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The facts are that you have been doing well for a few months now without mtx. You are seropositive but do you have positive CCP too? Why does the nurse assume that you will have a flare soon? Do you have recent blood results that would support this assumption? Taking strong meds just to be on the safe side is not in my opinion a smart move, you need more info to back the new decision on meds. Good luck. You are the CEO of your disease.

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Yes I am CCP + ☹️ Sorry if I sound naive but I don't want to take Meds just in case. I am hoping to stay quite well for a while longer x

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You need to ask your rheumatologist to explain the risks you take by not being on medication. We are at a higher risk of RA effecting our hearts and lungs. It’s not just joints. Nothing is without risk and you risk your body/health by waiting for RA to do damage. Just my own opinion of course but once you are in a flare it can take months for a new medication to start working. That’s why it’s important to prevent damage. RA use to be a much more devastating diagnosis and the only reason it’s more manageable now is because of the better medications and early treatment.

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I take LEF its great for me all these meds have side effects for some and its a lottery will it work or not!. I'd suggest that doing nothing is worse than being proactive and LEF takes 3 months to really work but it was so worth it. I don't know how anyone can predict the course of the disease so would simply say that its better to be treated than in agony for any ;ength of time. Mine is agressive but under control now and apart from the odd bit of ache and fatigue I'd not know I have it sero posative as well. My RA has affected my lungs and blood so whilst I do think that taking strong medication is never a good idea, it has saved my life twice now so I'm not knocking it. We are lucky to have accessibilty to meds that can change our lives its just it tkes a while to get it right (sometimes). xx

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Thank you. Do you mind me asking how long ago was your diagnosis?

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About 6 years it started with Mortons Numomas some 15/16 years ago then slowly progressed with aches and pain. But I did not feel ill, it was about 6 years ago it got worse but I was treated agressivly and am in remission now (2+ years).

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So you were about 10 years without hard RA meds. You had symptoms but didn't feel ill. The new rush to using aggressive medication even though diagnosis not clear or symptoms weak could also have a down side to it. The earlier you start, the faster you work through the meds and come to the point where no more meds work, which has been seen on this forum. On top of this you tax your body and take the risks of adverse reactions. Controlling inflammation is the key and it can be done other ways than only meds. Getting your body functions and metabolism in shape, treating underlying deficiencies and dysfunctions can make a big difference in inflammation and RA. You should look at how your body is doing as a whole and just not stare at RA symptoms and how to control them with meds, which is unfortunately what most rheumies do.

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Thank you for your thoughts. Do you know if it safe to take Tumeric supplements with HYDROX ?

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It is safe as I know many who are taking both and other DMRDs too and it is ok with their docs. If you are on blood thinners you should ask your doc. NSAIDs are ok if you're not taking huge amounts. At one time I took ibuprofen at the same time with no problems.😊

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Thank you Simba, has the Tumeric helped the others do you know?

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It has really helped many😊The effect also supported by research. There is a real good turmeric fb group where you can get answers to all possible questions. Good Luck xxSimba

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Thank you so much 😘

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Just wondering, where you diagnosed seropositive because of your RF test or your anti CCP or both?

The reason I'm asking is because I was first diagnosed seropositive based on my high RF test. Then after seeing a 2nd rheumatologist I was diagnosed seropositive based on the anti CCP test. By the time I saw my 2nd rheumatologist, my RF test also turned negative.

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