Hi all hope everyone's not in too much pain today Am just curious
What is everyone's rheumatoid factor.
I was diagnosed with RA in June 2014. I am taking mtx 20mgs and folic acid.
My hands and wrists ache now and then but fatigue is the worst thing
My RF is 49. What is everyone else's and how do you feel x
From what I believe my RF was normal and anti CCP antibodies was raised.
I have a similar problem as you my wrists hands and elbows are my main problem. Fatigue is a big problem too.
I'm on triple therapy increased to 3rd medication in December
Hi Matilda what drugs are you on and how long have you been taking them?
MTX 15mg for 4 weeks then 20mg tablets changed to injections weekly after 7 months since diagnosis Jan 2016 Hydroxychloroquin 200mg twice daily since May 2016 sulfasalazine titrated from 509mg a day to 1g twice daily over 4 weeks started December 2016
No idea - it's something I've never thought to ask? Might now, out of curiosity!
I eek to have pain everywhere . My spine is fused at the bottom and my neck at the top and I know I'm to have elbows replaced shortly. I've not recently had surgery on my foot, but four of the five toes haven't healed and remain broken so I have to have this son again too. I've love to say because both hips Nd both knees have been replaced , I have no pain there but occasionally I do !
Onwards and upwards though!!
Oh goodness how horrible for you. I didn't know they could replace elbows - you live abd learn 😊
So sorry for you. That is a lot to deal with...
Apologies for typos!
I've never had a RF. They only monitor my ESR (not sure what that was last time) and CRP (currently 0.6). I feel goid at the moment, my wrist hurts sometimes but that's because I apparently have the wrist of a 90 year old lol 😁 I'm on mtx injections 17.5mg, folic acid, meloxicam and tocilizumab.
RA factor positive CRP until beginning of December 3 and felt great. Since then had a bug and its set of a reaction and today had an injection to give some relief.
RF factor normal CRP normal slightly raised anti ccp but very active disease and lots of swelling.
Mines a 'weak positive' 35 according to the rheumy Dr but my anti CCP is a 'very strong' 298 so I'm not sure if it means anything 😂 Im sad to hear after 21/2 years you're still in pain and suffering fatigue though. I was hoping once I was on the right drugs I'd feel pretty reasonable and able to work full time? xx
Dear Barb66,
I was diagnosed in Jun 2014 and started the treatment in Jul 2014. I was/am in remission. I started with RF and CCP negative hence this will put me back into remission earlier too.
I only on 1 week medical leave at the early stage then I was back to full time job but struggling then. I was/am lucky to have good bosses who allowed me to just sleep for hours when I was tired then. I was/am in remission since Aug 2016, I was back to my normal self many months before my rheumy declared my remission stage. I guess he must be a very careful person who likes to observe me for a few more months.
I am sure you will be back to your normal self again when you have got the right DMARDs for you.
What is seropositive/seronegative?
The blood test that is ordered by the doctor in order to help establish the diagnosis of rheumatoid arthritis (RA) is looking for the presence of two proteins in the blood. One of them is called rheumatoid factor (RF). This is a very old but tried and tested investigation that was first introduced into rheumatology in the 1940s. The other test is called anti-CCP and is more recent. Anti-CCP is more sensitive than RF and may appear much earlier in the course of RA.
What do the test results mean?
The presence of either of these tests may indicate that RA is present. However seropositivity is only one criterion of several that makes the diagnosis of RA likely (some of the other criteria are outlined in the next section). If the other criteria for the diagnosis are present then seropositivity is an additional clinching factor. A positive anti-CCP test is marginally stronger than positive RF test for the diagnosis.
Does a positive rheumatoid factor or anti-CCP mean you must have RA?
A positive RF or anti-CCP test does not mean that you have RA. Other features must be present such as symptoms of pain and swelling in the joints, involvement of many joints with inflammation, morning stiffness in the joints for longer than 45 min, x-ray evidence of the characteristic bone damage in the joints and extra-articular features of RA (meaning features that are outside the joints), such as nodules. Other blood tests commonly used prior to diagnosis include ESR and CRP, which measure the amount of inflammation in the joints. For more information on blood tests please see our article: ‘Laboratory tests used in the diagnosis and monitoring of rheumatoid arthritis.’
Does this test tell me how severe my arthritis is likely to be?
As a rule patients who are seropositive for RF and/or anti-CCP are more likely to have more severe RA but neither of these tests can accurately predict the future course of the disease in an individual patient.
I just looked this up on NRAS site
Thanks for responding everyone. It seems we have all been diagnosed in different ways.
One way or another we have all been diagnosed with the bugger 😩 RF 49. Seronegative CRP 4 😀 at the moment. Never had ESR done. Pain is not too bad the worst part is fatigue. My friend Mary 444 is on here too. We often look back on all the fun we had together with friends and crazy times 😀 I am so grateful I got this at 60 and not in my earlier years. Now I sound a right grump LOL. Thinking of retiring early at 63 and getting out and about more while I can 😍
Go for it! I too was diagnosed at 60 (1yr ago) but luckily had just retired and am so glad now I had. It was nothing to do with RA - could take my pension at 60 (luckily again) but am so glad I did. My RA is well controlled atm so am able to do quite a lot and still rest as much as I need to. Fatigue is the main problem so whereas I might have planned 2 or 3 things to do a day I now go for 1 so I can recover if need be.
All the above sounds rather smug but I am very aware of how fortunate I am. Less money but plenty of time and flexibility I have a female relative who was diagnosed at 17- ten years ago- and is struggling with pain and immobility in several joints plus 2 young children and a part time job. As you say, being diagnosed at 60 is very different situation.
Hi I am on same medication as you .my r factor is 103 I also have it in my ribs it's nasty I cannot wait to feel normal hope you are coping x
Not heard of in the ribs before. Sounds painful 😩 Was looking at you old posts. Did you get pip and did you manage to continue working 😀
I have applied to pip and been turned down twice I have struggled with work and been off a month it is awful as not only worry about being ill it's money too my ribs are the worse it's called another name but hard to pronounce x
Give NRAS a ring about pip they have a very helpful step by step book on how to complete the form. Also you are struggling at work. Are you in a union? I work in residential care and am also off sick at the moment. I have cut my hours to 25 but still struggling. Your work comes under disability Act. NRAS also have information about your rights in the work place. Please phone NRAS helpline they can give lots of advice and information. Hope this helps. Hope you are feeling better 😍
Hi Kerina - Mine is 10 at the last test, but the highest I ever had was 18. I am still classified as severe and aggressive, so that number doesn't tell as much as you might hope. I think I am getting closer to remission. My main issues are still pain (only in my case it kind of roams, so I'm not sure what to tell you there), and the fatigue. Even sleeping 12 hours a night doesn't seem to relieve it..
Is 10 your RF or Crp?
Hope you go into remission soon.
I know what you mean about sleep. I can have a good night and still wake up exhausted 💤💤💤
I am so glad to know that you are getting into remission. On my case, a few months before my rheumy declared I was in remission, I was actually pain free. May be you check with your rheumy to see what he says?
When I back to my normal self, I am not as tired as the early stage though I still not as energetic as my old self.
Yeah - Boy did I take my old self for granted. I traveled coast to coast for 8 years for work, worked 10 -12 hours day and never stopped for a second. Now I just think "Thank you God, I am not doing that any more" =)
The stressful days is one of the reason to catch RA too. Just have to take it easy.
Hi Kerina - The 10 is my RA Factor. When I was first diagnosed, it was 13 which is just barely over the range, and my orthopod told me that I didn't have "real RA". Ha ha So I ignored it for four years... The last time I saw him (the orthopod), he did some x-rays for my rheumatologist, and said that my bones look frosted because of the RA. So much for not having "real RA".
My CR-P is 8.3 at the last test. But I am hoping to have that into range very soon. I had an infected tooth removed and honestly, I feel much better than I had for a couple of years.
Here's hoping you (and actually all of us) are in remission soon. The RA Warrior has a new product that says "I'd LOVE... a cure for RA". Boy is that right =). Here's hoping you have a great weekend!
We would all love a cure 😀 Maybe one day 😀
Thank you Caery. By your CRP number you are still in pain. Hope you feel better soon. Are you on DMWARD drugs as they should help stop more damage to joints. Have a good weekend 😀
Of a sort - I am on Minocycline, and in the year I have been on it (actually 14 months), I have gone into normal ranges on everything but the CR-P, so I am well chuffed with how things are going. The only thing I haven't sussed out yet is what happens when I am in remission. I could stop it entirely, but I think I would rather reduce the frequency and / or dosage and continue to take it. I am concerned that if I gave it up I might end up with a relapse. So I will probably just reduce and see what happens.
All I am waiting for is the fatigue to reduce and elimination of more of the pain. We'll see =). Hope you have a wonderful weekend!
Did you say that you were on an elimination diet with your Mino treatment? Read in many articles of the best results with Mino treatment obtained when concurrently on diet. I have also understood that when in remission Mino should be discontinued, not like in clinical remission with RA meds where you still go on taking the meds.Good luck!
Hi Simba! I am on a keto diet - high fat, low to no carbs... Elimination diet is probably a fair thing to call it - no sugars, no fruit, no wheat in my case, or gluten, mostly just meat and dairy, and veggies. It seems to be working pretty well. I'm consistently losing weight and I feel better too.
I was reading on the roadback.org/ blog FAQs, that it kind of depends on the person. I think that once I do get there, I will reduce my dosages and frequency down to the point where I start feeling the symptoms again and then just increment up to the point of no issue - if that makes sense - =)
Thanks so much, and good luck to you too!
It's really strange this fat, no fat no meat different diets. The AIP diet which has a lot of meat and good fats and the same restrictions as you have, really did wonders for some time but then stopped progressing. My RA is controlled as far as blood results and symptoms go but I still need pain meds. My doc in the States said that I just havn't found all the inflammation triggers so now giving the Paddison protocol a try. Meats and fats are out. Waiting to see if any difference. I suppose it must be very individual.😊
Yeah - It seems to be a very individual disease, huh? I think part of my problem with the pain and fatigue are that I have Sjogrens Syndrome, and reviewing the symptoms I suspect I have fibromyalgia too. But since I am not willing to try the drugs they want to put me on, I may just have to tolerate a certain amount of pain =)
Have you heard that LDN really seems to work quite well on FM?
I hadn't... I'll take a look though.. Thanks!
There is science based research on this and actively going on also. Are you familiar with the website, ldnresearchtrust.org?
Hi Simba - It is interesting. I am really happy with where I am right now on the Minocycline, but if that turns out to be a bust, I'll talk to the doc about this.
The only concern I have is that everyone keeps talking about this in conjunction with the Paddison Diet. I am really happy with the Keto diet and have lost almost 15 pounds now in just a few months, so I would not be willing to change again... But as I said, I will keep it in my mind in the eventuality =) Thanks!
I have lost so much weight on the AIP diet that it's becoming to be a problem. Added rice to see if it will add some pounds. So it's ok for you to eat dairy on the keto? Paddison allows beans and some grains so thought this could also make a difference. Not easy,no😳
Hi Simba - Yeah - I was vegetarian for around 30 years, but I was not a great vegetarian. I ate a lot of veggies and fruits, but also a lot of grains and fats. Over time and being stuck in airports and at work frequently, I just put on the weight. Keto does allow dairy (encourages butter and cream - ha ha) and I am steadily losing the weight. But most importantly, my RA is much better. When I eat grains, especially wheat (which I have a sensitivity to), I can feel it all of the next day.
If you want to put on weight, just add fats into heavy carbs and that will do it... So butter or margarine (whatever Paddison allows) into your grains. Do that a couple of times a day and you will find that you are putting some back on..
Paddison allows no fats of any kind. AIP encourages good fats and have tried to eat a lot of coconut oil and oily fish and olive oil but doesn't help much when grains, legumes and dairy and sugar is out
It sounds very similar to the McDougall Program that I tried for about three years. in terms of the fat, but that one allowed lots and lots of grains. My skin got so dry it started itching all of the time. That was way before I knew I had Sjogrens but that may have been hanging out there at the time and I just didn't know it. Dairy out would be an issue to me as that is a source of some of my fat intake.
I don't know if you know of Zoe Harcombe (she is from the UK), but she is the one that convinced me of the changes I needed to my diet. I then took it a little further to keto. But take a look at her diet if you want. Her main emphasis is to keep your carbs separated from your fats and your proteins. (Like at a separate meal). I actually found it quite easy and I was losing weight, but in the end I decided that keto was simpler in the rules and to maintain, and if I have a glass of wine or some sugar in my coffee, I may lose the ketosis state for a few days, but maintain the weight loss...
The reason I say Zoe is that she is truly a statistician and did an excellent job of convincing me that meat was necessary as are fats. Good luck with whatever you decide to do there! This is the last one I will every be on. It is just too easy, and that is when my inflammation went away for the most part..
The keto really sounds tempting. Would love to have dairy again! Little dubious about the cesin in dairy that such a large % are sensitive to. I know that after eating youghurt ( when I still did) my stomach always started turning. Mark Hyman also talks about the necessity of eating meat and fish, not red meat and not too often. So I have to think about this🤔 Thank you for the advice, I have to look into it
It's a little unusual for someone to have a reaction to yogurt. My hubby is allergic to cows milk (and me to sheep- go figure, right?) but he can have the yogurt with no problem. However, he cannot have cream cheese, butter no problem so it's just hard to tell... Good luck with your research.
PS - we actually make a form of yogurt called GC-Maf, which is a form of enzyme in all bodies, but gets deleted or diluted over time. We have been on that yogurt for about two months and it has made a big difference, especially with me taking Minocycline... If you want more information, PM me and I'll send you some... Take care Simba
Caeryl,
I am in remission since few months ago. My rheumy told me that he will further reduce my mtx dosage in another 6 months if my condition continue to be good. I am now taking 12.5 mg of mtx, it was reduced from 20 mg slowly.
My suggestion is you talk to your rheumy on your plan. If he thinks you can reduce your drugs intake, then go ahead else continue to stay with the drugs to avoid any flare up.
Very Nice Amy Lee... Oh yeah - I would always include my doc in my schemes and dreams. But she has told me many times over the last almost-30-years that I've been seeing her that she trusts my judgment as well.. It will be May before I see her again and I need to have more blood work done then. Fingers crossed (which I can do these days - YAY ME!!) ha ha
I am not familiar with minocyclin I googled it - antibiotic
Don't think our NHS use it
Hi Kerina - It seems to me that most of the UK docs say that the disease is too far advanced and therefore, not of much use. But I was four years in when I started with it, so... I'm good =)
Hi there. I was diagnosed last September. RA was 359. CRP was 1 with ESR at 8. So these last two were considered normal. On MTX and take 15 - 17.5 depending on how rubbish I feel. Not convinced the numbers really mean a lot. I've learnt that self management and self medicating is important as penny dropped the specialists really could offer no certainty or guarantees about what would work.
Good luck with your progress.
Good luck with yours too Jan2309
My RF factor was 112 when diagnosed with an anti-ccp of 84.
Yeah - That seems pretty high to me..
I live in Jersey and, have never been told about the rheumatoid factor. I haven't seen my consultant for a year and had to request an appointment for next month! The patient care for RA here seems to be pretty poor. I haven't had a blood test since diagnosis 3 years ago. My disease is fairly advanced and very noticeable. My Mum also had it.
Hi greencliff. So sorry to hear this. What medication are you on. Is it working
Are you taking dmwards
Hi. What are dmwards please?
DMARDs Are Disease-modifying antirheumatic drugs. The generally mean things like Methotrexate (MTX for short), Biologics like Humira and Xelgenz and some alternates like Minocycline and Low dose naltrexone
I'm cautious to put very much stock into these numbers... But just for the sake of sharing: Im 23 years old. At the time I was diagnosed, just around 5 months ago, my RF was 697 and CRP was 8.
I am now on a strict anti-inflammatory diet (supervised by a nutritional therapist) and am also starting Sulfasalazine, after discovering that I am intolerant to methotrexate. So far the diet is the only thing to have truly provided me with any lasting relief!
My "flare up" (I'm not sure I can really call it that, because it never actually goes away--left knee is constantly swollen, inflamed and full of fluid) has been going strong, for a long 10 months. In the last two months, aches in almost every other joint have started, and come on suddenly but usually don't last too long.
Hope to find relief soon, and am hoping the same for you all, as well!
What kind of diet are you on?
I don't eat dairy, red meat, gluten or highly processed foods. I do eat lots of oily fish, brown rice, vegetables, nuts and seeds, and some fruits. All highly acidic or acid forming foods, foods containing saturated fats, and high amounts of sugar have been eliminated from my diet.
Check out the book "Restore" by my nutritional therapist, Rachna Chhachhi to learn more!
Thank you for your reply😊I hope you'll feel better soon and that you have found a diet that works for you
Thank you, I hope the same for you!
I forgot to mention, I also don't eat any sugar. Each time I do, it aggravates my inflammation literally overnight. And I cannot have lentils, along with a list of other things!
And I take a whole slew of supplements, daily.
Hi. Should the rheumatoid factor be measured and monitored at the hispital clinic and, if so, how? I've never been told about this and have a consultant appointment next week. It's a year since my last appointment!
Rheumatoid factor finally high - what happens now?
Rheumatoid....
Rheumatoid arthritus
