Seronegative RA: Anyone have any experience with this... - NRAS

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Seronegative RA

Trukay profile image
17 Replies

Anyone have any experience with this diagnosis? No markers or values show up in blood work. How long should I give mtx to show any difference in symptoms? I'm having severe dizziness and tiredness, is this due to mtx?

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Trukay profile image
Trukay
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17 Replies
Mammawshope profile image
Mammawshope

On on week two of injections after twelve weeks of MXT tablets. Experience dizziness.

turtlemom2 profile image
turtlemom2 in reply to Mammawshope

Good morning! I am going to be taking my 5th dose today (every Saturday evening). It takes a long time to get the full effects I have been told. 3 months taking it to get the full effects. I am sero negative as well. This is why doctors are not suppose to use blood tests to diagnose. It is only part of the diagnosis. They don't know why some show on blood work and some don't. Also, I have seen some of my research showing that those diagnosed as sero neg can test positive in 5 yrs. I can tell you I have RA and I am sero neg. My RA is only 14 and I believe that is negative. However my doctor is treating me for it. She won't say what it is only that it is inflammatory. She first gave me Prednisone and said if it works then you have inflammatory arthritis instead of fibromalygia and then when the Predisone worked she gave me MTX and said the same thing. So far I still have pain but I have noticed little by little the pain is easing. I can move my fingers without too much pain. I only hope it will get better from here. Stick with it!

Trukay profile image
Trukay in reply to turtlemom2

Thanks turtlemom for the added info. My rheumy told me at the beginning of mtx it would take a month to show any effects. So now I'll try to make myself wait it out longer.

Mandalou profile image
Mandalou

Hi Trukay

I could write a War and Peace length post on this subject but will try and keep it as brief as poss.

Firstly it sounds very much likely that the Mthx is giving you these dizzy feelings and tiredness though as a non medical professional there is no way I could tell for certain and your GP should advise you on any dizziness etc.

There are lots of tips for coping with the side effects of Mthx on here and some people do much better in the long term with Mthx injections than tablets.

People stick to certain times of day that suit them so they sleep the effects off for example and don’t forget to take Folic Acid, again much advice if you use the search facility on here.

Are you in the UK or elsewhere as that will have a bearing on how your treatment is approached and Mthx is the absolute gold standard of first line treatment for RA and has helped many people so give it a good go if you can and your liver function tests stay inside the recommended levels.

Regards sero negative versus sero positive RA I wouldn’t get too hung up about these labels if RA is diagnosed then RA is what you have ( unless it changes down the line but that’s another subject)

The people who test positive for Antibodies can generally be thought to have a more severe disease but this doesn’t always follow.

The rheumatoid factor might not show in your blood on diagnosis but often that can change on re testing years later.

So Sero negative RA query Psoriatic A is what I have but on my latest letter from my Consultant after guided steroid injections into the joints of my foot last Monday she just described me as “ This nice lady with Rheumatoid arthritis”

So no qualification as to antibodies or RF in my blood whatsoever.

The treatment is the same and the diagnosis is made on other things than just blood tests.

So good luck to you with your meds, if you are in the UK contact your rheumatoid nurses for help with your side effects and good luck on your journey.

This is an excellent site for help on many levels.

All the best

Mx

Trukay profile image
Trukay in reply to Mandalou

Hi MX, thanks for your reply. I am in the US in texas. Arthritis seems like such a iffy condition to diagnose and treat. One question if a person does not have RA and takes mtx, are there any detrimental consequences?

Mandalou profile image
Mandalou in reply to Trukay

Hi Trukay and hi Texas, have been there many times all over the State.

Well, seeing as all the Disease modifying anti rheumatic drugs ( (DMARDS) dampen our immune systems. RA being an Autoimmune disease.

The only consequence I could imagine is being more prone to infection but anyone taking Mthx would have very regular blood tests so this would soon pick up any issues,

FBC, LFT, Urea etc etc.

I would keep researching Trukay and ask medical professionals your most pressing questions.

M x

beauty96 profile image
beauty96

You can have RA with either seronegative or positive. It is simply a marker. Nothing more nothing less. It is a guideline if you like. RA diagnosis will depend on sight, talking and also x-rays etc. I can't have any drugs and keep my RA and OA and osteoporosis in check doing Tai chi and having massages. There is nothing else i can do cos of allergies. Listen to the consultant and make your own choice from his advice as to what treatments you want.

Ann2020 profile image
Ann2020 in reply to beauty96

Do you follow the aip diet by chance?

Trukay profile image
Trukay in reply to Ann2020

Hi Ann, I don't know what the aip diet is.

Ann2020 profile image
Ann2020 in reply to Trukay

It’s called the autoimmune protocol diet. Look it up, as it’s been helpful to people who have autoimmune disorders. The only thing is that it’s somewhat restrictive; no dairy, grains, legumes, or sugar, for example. It’s helped a lot of people. I tried it for a few months, and interestingly, my ccp levels went down about 15 points, and I felt better, tbh. I follow it, but I’m not consistent.

Trukay profile image
Trukay in reply to beauty96

Oh my beauty! You can't take any meds? Well you are fortunate you CAN control yours with tai chi and massage. I only wish I had the money to get massages, how wonderful that must feel!

beauty96 profile image
beauty96 in reply to Trukay

I was ill for 50 years, 50, before finding out it was coeliac and dairy foods. Many allergies etc to foods. NO Tai chi and massages do not keep all the pains away but it is the best i can do. When told what was wrong I started to learn medicine. If you can't beat them join them. Determined to look after myself. I now have four medical doctorates and also teach aromatherapy, counselling, Chinese medicine etc. I am glad in lots of ways medicines cannot make my body have horrid side effects or other diseases. BUT I long for a pain killer. I really do. My advice is to do whatever you can to help your body. Listen to consultants and of course question them as well. Work with your body.

daisychains58 profile image
daisychains58 in reply to beauty96

TRY MEDICINAL CANNABIS OIL FOR PAIN RELIEF. ALSO HELPS WITH SLEEP AND ANXIETY.

in reply to beauty96

Interested to know how tai chi and massages control your RA beauty? I would never have been able to tolerate either of those when I was diagnosed. I did do tai chi but it really aggravated my joints and I had to stop. I’m glad it works for you 😊

Ann2020 profile image
Ann2020 in reply to beauty96

Also, are you seropositive for ra?

When first diagnosed in 1987 I was seroegative, Then in 2015 (or thereabouts) I suddenly became seropositive. reatment stayed exactly the same and the only difference in my condition was that I developed Vasculitis.

sparrowthebrave profile image
sparrowthebrave

I’ve had RA (well, JRA or JIA) my entire life of 44 years and have tested negative the whole time. The course of my disease started out severe and then got very mild, but the juvenile forms of RA seems to “act” different. When I first got it as a toddler my ESR was through the roof and it was thought a bad case of scarletina I got tipped it off. Still kicking, though I have a ton of joint damage because the treatments we have now weren’t available in the ‘70s. I’m only on methotrexate and it does seem to help reduce my flare ups. It took me awhile to get used to the side effects but now they’re not too bothersome. Just some fatigue and a bit of an off tummy. I’m diligent with folic acid and eating mild foods beforehand. It took about 3 months to kick in. Good luck to you!

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