Date: 21.02.2014
From: Molly
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Subject: RA or something else?
I have been reading though your excellent posts and decided to ask your advice. I have been under a RA consultant for about a year now. I have had all the usual blood tests and xrays and at the moment all that is coming back is a high Rfactor of 144. My symptoms - what feels like tendon aches and weakness in both hands. Sometimes the balls of my feet are so painful I find it difficult to walk. Aches in shoulders. Hips stiff. Morning stiffness which eases after a couple of hours. Recently, both hands felt like I had sprained them but with no apparent cause. Hands weak and ache. Lower back stiff and aches and incredible pain in one side of buttock. Ribs ache. Lump on top of one foot with splaying of middle toe. My RA consultant isn't sure whether it is RA or not and I am currently pushing for another appointment as my toe has started to splay and the lump. All I have been using so far is anti inflam and pain relief. I know how hard RA can be to diagnose but something is going on but we don't know what. Anyone have any ideas to offer my RA consultant? Thank you so much.
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Date: 21.02.2014
From: Colin W
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Subject: Re: RA or something else?
ho molly , as a general rule people with RA has raised RF , but not everyone & even people with raised RF dont mean they have RA , 144 is lowish for RA & maybe if you do have RA it can be controled , the morning stiffness goes with RA & it can cause tendon problems personaly think they need to put you on a Disease-modifying anti-rheumatic drugs (DMARDs) like methotrexate to stop any joint damage , not everything you mention goes with RA but still think they should be treating you , btw my RF was very high 450 & they still took two years before saying it was RA even though my GP said so after blood test
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Date: 21.02.2014
From: Molly
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Subject: Re: RA or something else?
Thanks so much Colin. My GP has briefly mentioned this drug to me and suggested they may want to start me on it. Your reply has helped as I have read many of your posts, thank you. What you have said my RA consultant has said - that some of the symptoms don't match with RA. I think they still suspect it but there's no definitive evidence. It's a worry, if it is RA then as you say, I will need the treatment. The thing that worries me about it is loosing my hair, silly I know and very short sighted of me.
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Date: 21.02.2014
From: bsk
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Subject: Re: RA or something else?
Hi Molly, the national protocol for RA patients is that they are started on Dmards within 3 months of diagnosis. You need to ask your consultant about this. 144 is not low, I am borderline RF factor, which is around 14. Over that and it is considered a positive factor so I don't understand your consultants thinking. My consultant was unsure of my diagnosis and left it six months before he put me on dmards as they hoped I would go into remission. However, he did explain all that very clearly to me and I agreed with him. I
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Date: 21.02.2014
From: Colin W
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Subject: Re: RA or something else?
Milly , methotrexate is used at a lot higher dose for treatment of cancer , folic acid is used to help with the side effects from the drug & with 5mg six days a week my hair is fine after being on it since 1998 so dont worry total agree with bsk & they should be starting you on one of the drugs & maybe if you dont get any help ask for another referal , morning stiffness is one of the main systems of RA , joints like hips dont normal get affected but if you got lower back problems it could be linked to that
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Date: 21.02.2014
From: Molly
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Subject: Re: RA or something else?
Subject: Re: RA or something else? Thank you Bsk, not sure what's going on now. I have this morning, just recieved an appointment for a lung function test in a couple of weeks and a Rheumatology appointment a month later. Maybe my chest xrays came back with something? Or, maybe RA has gone to my lungs? I don't know. I know my ribs are aching and I have asthma so perhaps something to do with this? My hands are still very weak and ache but back pain is easing a bit. Not sure what to think.
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Date: 21.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you so much Colin, I will write the folic acid dosage down and if they put me on it insist they give me this too. I have always had bouts of hip problems but nothing a chiropractor couldn't sort out. This time it's different and my lower back is aching/cramping (both sides)and one side my si joint - never felt so much pain as this before, it was breath taking pain - thank goodness this has numbed down to a kind of cramp now.
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Date: 21.02.2014
From: Bsk
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Subject: Re: RA or something else?
Molly, there is absolutely nothing from stopping you ringing your consultant and asking them about the reason for the lung function test.
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Date: 21.02.2014
From: Sean
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Subject: Re: RA or something else?
Hi Molly Many if your symptoms sound a lot like I have had in the past - my arthritis affected my shoulder rotator cuff then ribs and then back and hips. Because it didnt go for my sacro lower back first - but later did, including buttocks - they ruled out AS (ankylosing spondylitis) but this is what my dad has with rib cage and lower back especially and he has a bad time with his hips. Diagnosis can be a long path and in some respects the medical treatment is very similar regardless of diagnosis. I've been lucky enough to halt most of my pain through diet and supplements for the last 20 years. 6 months is a long time to wait - what are you going to do next?
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Date: 21.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you Bsk, yes I could do that - I thought it might have been a routine test. Thank you Sean, I am assuming you have RA? My brother has been diagnosed with AS but my symptoms don't seem to match although some are similar but I will mention this during my appointment. I am really pleased you are managing your pain - at the moment I take painkillers as and when - I really do need to look at my diet too. Yes, the appointment was only a follow up - now my toes doing strange things I have pushed for an earlier appointment - but they are so busy. Might ring the booking office on Monday to see if there are any cancellations.
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Date: 21.02.2014
From: Sean
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Subject: Re: RA or something else?
Mine is definitely a variation on AS - hips, neck, spine / ribs. But have had joint pain in feet, big toe.. It's funny when they diagnose that they consider 5% rare symptoms - yes uncommon but its one in 20. They even call ribs a rare issue with AS - when it affects 20% of us! Here's a great simple diagram with % - http://www.spondylitis.org/about/compguy_pop.html For AS there is a blood test called HLA B27 - for which I was negative so the final diagnosis was "non specific" - they can't pigeon hole us all. Don't think I was ever tested for RF - cant remember? In fact I had to try and find if AS ever has high RF and it tends to be again rare - then I saw this interesting story http://www.healthboards.com/boards/arthritis/863068-positive-hla-b27-rheumatoid-factor-tests.html In case your brother has not seen www.KickAs.org - it's such an important resource! I also respond to low starch diet championed on this site.
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Date: 22.02.2014
From: Denise
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Subject: Re: RA or something else?
Hi Molly Sounds very much like RA to me as your symptoms are very much like my own. Or perhaps mine is something else !!!! My rheumatoid factor was originally 40 .... declared a false positive by consultant but two years later had risen to 165 and by the time I got back to see the consultant it was 235. Have been on methotrexate for over a year now but consultant has now declared isn't working properly for me. But do take heed of what people are saying about the folic acid. I was originally only on it one day a week until I read on this site that some take it over five or six days. For some reason you cant take it on the day you take the methotrexate but now take it five days a week and no nausea. As to the hair, yep, well mine has lost it's body but doses are not high enough for hair lose. And I think perhaps the chest xray is just routine. I had one before starting on methotrexate and have just had another to start on anti TNFs. Do hope you get somewhere cos there is nothing worse than dragging your body around all day !!! Good luck
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Date: 22.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you so much Sean. The links were really useful and I really liked the diagram - although as you say, perhaps %'s are not so rare. AS seems to be considered to be seronegative (or at least a low RF - some consider less than 20 whilst others say less than 40/60). Thank you also for the kick as link, I will pass this on to my brother - lots of useful information. Thank you for your supportive post Denise, yes, you sound like me - I am hoping I can get some kind of diagnosis soon. If not, would it be worth paying privately for an MRI? I have read this is a good way of diagnosing RA. Yes, thank you, I will insist on the folic acid 6 days a week.
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Date: 22.02.2014
From: CITRON BON BON
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Subject: Re: RA or something else?
ASK YOUR GP FOR A CCP TEST (ANTI CYCLIC CITRULLINATED PEPTITE TEST) THIS WILL GIVE YOU A DEFINATE ANSWER TO DETERMINE IF YOU HAVE RA. IF HE REFUSES IT WILL COST AROUND £75 TO HAVE IT DONE PRIVATELY.
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Date: 23.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you Citron, my CCP tests have come back normal at the moment hence the difficulty in diagnosis. From what I have read, around 60% RA will have a raised CCP and early stages will come back with a normal CCP but often but not always raised RF. I hope I will get to the bottom of it soon. x
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Date: 23.02.2014
From: CITRON BON BON
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Subject: Re: RA or something else?
MOLLY, HAVE YOU HAD AN HLA B27 GENE TEST ? IN PEOPLE WITH ANKYLOSING SPONDYLITIS IT WOULD TEST POSITIVE IN 95% OF THOSE WITH IT. IN MY HUMBLE OPINION THOUGH I FEEL THAT YOU DO HAVE RA AS YOUR FACTOR IS ACTUALLY QUITE HIGH AT 144.
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Date: 23.02.2014
From: CITRON BON BON
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Subject: Re: RA or something else?
HI MOLLY,ITS ODD THE RHEUMY WOULD HAVE ORDERED A CCP TEST IF YOUR RA FACTOR WAS POSITIVE, I WASNT REFERRING TO A CRP TEST IF THATS WHAT YOU THOUGHT ? THEY ARE TWO DIFFERNT TESTS ENTIRELY.C REACTIVE PROTEIN TEST IS OFTEN LOW OR NORMAL IN EARLY RA, THIS INDICATES LEVELS OF INFLAMMATION. THE CCP TEST LOOKS FOR A GENE THAT WOULD BE PRESENT IF YOU HAD RA AND IS MORE ACCURATE THAN RF TEST.
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Date: 23.02.2014
From: bsk
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Subject: Re: RA or something else?
They usually do that i diagnostic stage and repeat regularly if negative, Citron, at least they do in my hospital.
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Date: 23.02.2014
From: CITRON BON BON
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Subject: Re: RA or something else?
THAT ISNT THE NORM BSK, AS A RULE CCP IS ONLY CARRIED OUT IF RF IS NEGATIVE OR BORDERLINE BUT PATIENTS ARE PRESENTING SYMPTOMS INDICATIVE OF RA.IF A HIGH RF IS DETECTED CCP ISNT REALLY REQUIRED.
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Date: 24.02.2014
From: Molly
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Subject: Re: RA or something else?
Hi Citron, thanks so much for your support. I am just waiting for a recent print off of my results so I will post again when I have it so I can give you the numbers. I looked at my older tests and my RF was 244 not 144 - I got that wrong. Thank you - I will ask if they can test for the AS gene just in case but from what Sean has posted I don't think it's that although it would be good to rule it out. I didn't realise the CCP was a gene test. I will post again when I get my latest results - I am told my RF factor is about the same but I would like to see it for myself.
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Date: 24.02.2014
From: Molly
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Subject: Re: RA or something else?
My old C-Reactive Protein <5.0 where the range is 0-5.0 so I guess this is normal and a tad high in Phosphate (probably all the milk I drink).
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Date: 24.02.2014
From: Sean
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Subject: Re: RA or something else?
Hi Molly - you've probably seen I am a diet freek! Milk is high in Calcium but its protein balance and low levels of Magnesium is all wrong do be absorbed - but in fact can cause low Magnesium! It is a fact that the countries that drink least milk have the least hip fractures in their elderly. Calcium is hailed as the main bone nutrient and given out as rubbish cheap Calcium Carbonate (chalk) to our elderly but it is magnesium that is harder to absorb and helps make the Calcium better absorbed - if you each veggies then you probably get enough calcium. The casein protein is also the major cross reactor for gluten sensitivity - and in some cases can the cause or part of the cause of arthritis for some people.
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Date: 24.02.2014
From: CITRON BB
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Subject: Re: RA or something else?
MOLLY FORGIVE ME,THE CCP TEST IS AN ANTIBODY TEST THAT IS NEWER AND MORE ACCURATE THAN THE RF TEST, THE HLAB27 IS A GENE TEST. IM CONFUSING MYSELF NOW !! YOU SAY SAY YOUR C REACTIVE PROTEIN IS <5.0 WHICH IS NORMAL, BUT YOUR LAST RHEUMATOID FACTOR WAS 244, I THINK THIS LEVEL IS CONFIRMATION THAT ITS RA.
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Date: 24.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you so much Sean, very interesting. I must admit, I don't tend to eat a balanced diet - so I must seriously look at this. Citron, I am so sorry to confuse you - I am not sure what blood test is what and I seem to be having quite a lot of them. Yes, that's right, I had just checked my last tests and my RF factor was 244 (I was wrong earlier when I said 144) and CRP normal. I haven't got a print out of my tests that were taken a few weeks ago - when I get them I will post them.
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Date: 25.02.2014
From: Molly
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Subject: Re: RA or something else?
Hi, just an up-date. This morning, just received a letter from consultant requesting a CT scan of my lungs. She is saying that although my RF is still high, the more sensitive test for RA is still showing negative and my chest x-ray is showing mild inflamation. I have booked the CT scan for next week. It's all happening quite quickly now, I do hope we can get to the bottom of it though. Has anyone else had a CT scan?
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Date: 25.02.2014
From: Colin W
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Subject: Re: RA or something else?
hi Molly , it all dont make sence , if you have raised RF & joint problems its almost certain you got RA & they need to treat you for it I got asthma as well & had lung funtion for it & x-rays on chest before starting some drugs , you can get nodules on lungs with rheumatoid arthritis but dont think its anything to do with that , is it your CRP under 5 , myself on high levels of steriods ,my CRP is now low but still having RA problems
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Date: 25.02.2014
From: Sean
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Subject: Re: RA or something else?
Colin / Molly this is interesting as to what CRP is... http://www.ncbi.nlm.nih.gov/pubmed/10852144
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Date: 25.02.2014
From: Molly
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Subject: Re: RA or something else?
Colin, maybe that's what they are doing - lung function and x-rays before they start the drugs? They may also be looking for nodules that perhaps don't show up on ordinary x-rays? Or trying to rule out other things? Yes, CRP under 5 at the moment - although I have read this can happen too in early onset RA. All my other blood results are within normal range too. Thank you so much for the link Sean - I am so sorry, still doesn't make much sense to me at the moment. I will have to do some more reading around.
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Date: 25.02.2014
From: CITRON BB
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Subject: Re: RA or something else?
IT BAFFLES ME AS TO WHY YOU HAVENT PROBED YOUR OWN DOCTORS MORE, THEY ARE THE ONES WITH YOUR MEDICAL HISTORY. I CAN ONLY SUGGEST THAT WITH INFLAMED LUNGS AND A HIGH RF YOU COULD POSSIBLY HAVE TUBURCULOSIS.OTHER THAN THAT I HAVE TO AGREE WITH COLIN, IT DOESNT MAKE SENSE !
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Date: 25.02.2014
From: Molly
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Subject: Re: RA or something else?
Citron, I sound very similar to what Colin has described. Rightly or wrongly, my last consultant said that he didn't want to treat me without some definitive evidence as the drugs are very harsh and to go for blood tests when I think I am having a flare. This is what I have done. I am under a different consultant now so will get a second opinion. Citron - a lot to take in at the moment, a bit overwhelming - not long to wait to ask all the questions (answers perhaps not what I want to hear though). TB is a good idea and possible (here's hoping it's that simple - though I don't feel it will be).
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Date: 25.02.2014
From: CITRON BB
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Subject: Re: RA or something else?
TB ISNT SIMPLE AND CAN BE VERY HARD TO TREAT. ONE OF THE MANY SYMPTOMS IS JOINT PAIN AND A HIGH RF. HOPE IT ALL GOES WELL FOR YOU WHATEVER THE OUTCOME.
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Date: 25.02.2014
From: Molly
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Subject: Re: RA or something else?
Sorry Citron - as I am aware, a course of multiple long-term anti-biotics usually treats it. I have lived abroad in countries that are prone to it, so it's possible. I have also had the BCG against the most virulent strain although reading up on it it seems it's only 70/80% effective.
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Date: 27.02.2014
From: Denise
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Subject: Re: RA or something else?
Hi again Mollie It is my understanding that even if the anti CCP is negative it does not mean you don't have RA. Mine was negative also and my diagnosis is seropositive RA non erosive. I think this means that it is not eroding the joints at present but affecting the tendons/ligament around the joints. RA is complex and one pill for all does not fit the bill but however did this thread get to TB !!!!
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Date: 27.02.2014
From: CITRON BB
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Subject: Re: RA or something else?
DENISE, A HIGH RF CAN SOMETIMES INDICATE OTHER DISEASES LIKE TB.
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Date: 27.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you Denise, that makes sense to me. It's my tendons and ligaments - weak and aching. I even had a tendon 'snap' in my little figure last year - I also get clicky fingers (although not so much at the moment) and some carpel tunnel symptoms, so much so sometimes that I have some hand splints to wear at night so as I can keep my fingers straight. Sometimes the balls of my feet feel like I am walking on stones - very uncomfortable and causes problems walking. Are these some of your early symptoms Denise? Also, I will ask the consultant about the possibility of being seropositive - what are your other symptoms? Citron - thank you for your support - all ideas are so much appreciated as I do need to rule things out.
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Date: 28.02.2014
From: Denise
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Subject: Re: RA or something else?
Morning Molly Yep, yep and yep again. Clicky fingers, my index finger on my left hand is now next to useless, I have swan necking and one of my fingers is definitely out of line. Shoulders can freeze up and the feet, walking on stones is a great description. Yet xrays of feet, knee and hands only show a minor wear and tear to the right hand which must go along with the negative anti CCP. And then there is the stiffness in the knees and back and well, all over really. Cant in all honesty say how this all started, it was a gradual process but I had not been well for some years and in my honest opinion that was all to do with my age and hormones. Did ask my consultant if hormones played their part and he said definitely yes and when you think about it as more women suffer from RA than men, it makes sense. And I think the seropositive is just an indication that you have a high RF. Oh I do hope you get some joy from the consultant. I have my doubts about the meds but I don't think you have any option but to go with the flow. Good luck
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Date: 28.02.2014
From: Molly
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Subject: Re: RA or something else?
Thank you so much for your reply Denise and I am so sorry to hear about your finger. It's hard to imagine x-rays don't pick this up with more noticable results. It sounds like we need considerable damage to happen before the xrays can detect it - this is worrying. My little finger is not much use anymore and I have to be careful with it during the cold weather. I strap it to the neighbouring finger sometimes. My hand and feet xrays at the moment are not showing anything, or least they weren't 6 months ago, although as with yours, this may not necessarily be true. My shoulders get very achey at the moment and luckily, my lower back is on the mend - at least for now. You don't think the meds work? Maybe anti-biotics to go with the standard treatment? http://www.ncbi.nlm.nih.gov/pubmed/16447240
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Date: 05.03.2014
From: Deborah
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Subject: Re: RA or something else?
Hi Molloy,
Sorry to hear that you are not sure what is going on at the moment.
I had a rised blood test result and that is how I got diagnosed with pa.
I think you blood test result,s are very high the normal level of rh factor in the blood test is 5-10 or a least that is what my consultant is happy with.
I think your consultant is hopeful that it may be just a mistake and is waiting to see if you develope any other symptoms of inflamatory arthritis.
If it does turn out to be inflamatory arthritis please get treated with the best you can because You have to limit the damage the joints.
I do hope everything turn,s out alright for you and wish you good luck.
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Date: 05.03.2014
From: Red head
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Subject: Re: RA or something else?
Hi everyone. Having read a few posts on various sites recently i was wondering if somebody could try and clear something up for me.
Im currently waiting for an appt with another rheumatologist as i found that the first one i saw explained nothing to me and just packed me off with methotrexate.
So my question is what number makes you rheumatoid positive. my last appt it was 42 and she told me that was borderline but because of my symptoms its very likely rheumatoid. is that borderline as i see others with less ? xx
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Date: 05.03.2014
From: Colin W
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Subject: Re: RA or something else?
whereas the normal range is 0-20 what ever that means , I would ask for a Anti-cyclic Citrullinated Peptide (anti-CCP) Antibodies in RA test , if you come back positive aleast you know its RA , dont be scared of methotrexate , it works very well for a lot of players , make sure they give you enough folic acid to sort out the side effects
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Date: 05.03.2014
From: red head
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Subject: Re: RA or something else?
Hi Colin.
just looked back at my notes and it says my ana was negative and ace normal.
Maybe that is why she did not explain much to me.
All i know is i ache in most my big joints. neck now included and sometimes its really painful.
Feet particularly bad xx
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Date: 05.03.2014
From: Colin W
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Subject: Re: RA or something else?
have they tested you for Ankylosing Spondylitis , & which joints are playing up , joints like hips are not normaly affected by RA & mostly sign of back problems only thing is those of us with RA , PsA & AS get the same drugs like methotrexate but you want them to make sure they got the diagnosis right
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Date: 05.03.2014
From: Red head
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Subject: Re: RA or something else?
Fingers crossed for my next appt.
Have had back trouble since my teens so that's not new.
Hands and feet are most affected along with wrists knees ankles and now my neck.
Especially in the morning. have had bursitis in my hips for over a year now and pretty sure its just a unlucky coincidence it happened when all this started off.
You have given me some more questions for my next appt so thank you xx
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