Thank you I am seeing Doctor Monday, just wondering as most tests have been positive of late. If you are not in the UK, I guess the numbers will mean very little..
I live in the UK but my bloods were different from yours. We have RF was negative but Anti CCP was positive for me plus raised anti inflammatory markers and Hb was low. As well as symptoms.
Thank you/ if you look my RF was not used, hence greyed out. My anti CCP was positive and same as #1 in my test results, (Googled) so plus symptoms which she went by, I have a least an idea. Thank you..
I'd say very mildly positive for rheumatoid screening, so an indication rather than a dead cert as my guess is that this is anti-CCP test under another more user friendly name. And vit D is a little bit low, but not dreadful. Below 30 is usually considered significant, and between 30 and 50 needs topping up but could merely be that it's winter.
Thank you - At the moment she has me down to 'myalgia unspecified' - She was also looking for Polymyalgia because of the multiple joint pain, also the pain is symmetrical - Glad the tests are Mild as I would rather just keep my OA as I don't like the look of medication for RA. I will update on Monday.
As for Vit D- Thank's for that, I was surprised though when I saw any reduction as I take AdcalD. Not as often as I should as it clashes with Thyroxine and Iron.
Actually having lived with RA and OA for seven years now I have less problems with the RA and if I'd had a choice I'd stick with that and jettison the OA! And at least there is treatment for it, whereas with OA it's mainly painrelief and surgery.
Low vit D is not hugely surprising - about 20% of people are low in Northern Europe, whether or not they have other health conditions. what you need to avoid is being seriously deficient.
But let's hope it turns out to be something temporary, spending too much time in the gym, or something else that's easily treated.
Yes I am on Dihydrocodeine fo OA, I take a lot of medication so I hope I don't have to take more. Reading about RA drugs, they don't seems very pleasant to take. I will no Monday at least so not long to wait. Thank's for your reply, makes sense.
Hi Ern007
Confusing aren't they? just accessed my latest ones on systmonline from GPs and struggle understanding. 'lab tests online' on internet are good at explaining tests and what they mean/are for and I think nomoreheels who posts on here gave me this but npsa.nhs.uk/advice gave really good advice on normal levels and what they are all for on p.18 of leaflet I think. Obviously this isn't as good as GP/Consultant advice but makes you feel a bit more in control.
I had RF factor, first blood test, but had to wait from results from anti-ccp test (?) to find out sero-positive on next appointment. They just said inflammatory arthritis at first; think the anti-ccp one is more definite indicator of RD. None of this is medical advice Ern, I'm no GP! Good luck.
Yes they are confusing. One test according to another poster was just an anti ccp test with a more "user friendly name....I know people on here just give opinions, I don't ask for a diagnosis for that reason... I say the same on BLF when giving just advice on lung matters. Thank's for your reply.
I understand the whole thing of navigating different communities here and how differently each community responds to being offered blood test results. I have an instinctive understanding now of my own and I think that’s a good thing on the whole. Seeing our bloods in the context of our own personal trends can offer us insights into our symptoms that even our doctors may otherwise overlook.
So I admit I’m a bit clueless about yours given the user friendly thing which I haven’t come across myself. And I wouldn’t venture much insight even if I had apart from agreeing with Helihelix that it could point to mild RA. - but possibly PMR.
What I do know now though is that rheumatic diseases sit across a great spectrum and there are no black and white answers - unlike say with Diabetes. I have Sjögren’s as my main disease with RA in the mix and am hypothyroid. My RF was initially mildly raised at about 24 - I think normal range was up to 20. It went down to equivocal and is now normal whereas my ANA is now a clear positive - but with a pattern relating usually to Scleroderma - which so far I’m not diagnosed with although I have several traits including wee red marks on my face and other systemic symptoms. So in my case they took RA as the main disease for five years and now run with Sjögren’s as I do have a highly conclusive histilogical confirmation of this from lip biopsy. But as I have no positive ENA bloods ie anti CCP, Anti Ro, anti Scl 70, Anti dsDNA etc this classes me as seronegative for any specific disease.
However my inflammatory markers PV and CRP have been consistently very high for most of the time for the past 7 years since the diagnoses started rolling in so this shows autoimmunity as opposed to OA.
Various rheumatologists have taken a look at the overall picture and made judgements on where I sit, which even includes personality type one specialist told me last year!
What I think is that having lots wrong with you - particularly if it spans any form of autoimmunity - should never to be underestimated. Having many conditions mildly can be every bit as debilitating as having one disease severely. Or more so because treatments can often contraindicate and the more specialists in the mix the less likely we are to get an effective treatment plan.
Osteoarthritis is often a secondary complication to all rheumatic diseases but somehow it’s rarely acknowledged by rheumatologists. It’s hard being viewed as a series of component parts and systems rather then a whole being!
I’m on AdCal D3 and Levothyroxine and I haven’t a clue what my vit D levels are because no one will run this test. When last tested about five years ago mine was 26 prior to AdCal D3. I felt rubbish just as I do now. Now you have raised this here I’ll raise it with my GP so thanks!
I did have hypothyroidism in 2005 they say caused by Amiodarone for VT and AF - The former was why I was put on that drug after a nasty attack in 2007. I now take 125 micro grams Levothyroxine which is strange so high as my T4 levels are slightly high, while my TSH also remains high. That is confusing.
I think when you have a lot of problems, one more complaint drags at you that bit further.
My GP tested me for Vit D because a lack of D can cause joint problems, so with my RA test a bit high, let her work this one out..
She believes I have Polymyalgia but until she knows what I have, on my records she has put 'Myalgia unspecified' - Be interesting to see who she says on Monday.
I know one thing, no matter what I have got - I feel rubbish and I normally take things in my stride,
Yes I haven’t had the full scale poly RA symptoms since I got onto AdCalD3. If I can face it I’ll ask my rheum or GP for this to be checked again as I’ve moved and am very unwell just now. An extra D3 couldn’t hurt I feel but rheum told me off for self administering. My B12 levels are through the roof so I stopped B12 supplements. If only they ran all these once a year automatically it would be very helpful! X
I moved a year ago from a town to a village. My new GP has given me a raft of tests. She listened to my symptoms and how I felt. Some of these tests I had never had done before when I lived in the town, they even stopped testing my PSA levels - I think it's down to cost..
I don't like the AdCalD3 at all, they can cause bloating with me. I only take one rather than two a day because the stop Levothyroxine working if I take them withing two hours either way, same with the Iron Tablets I take after my tea, AdCalD3 stops Iron from absorbing correctly, to with before and after - There is 8 hours I can't take AdCalD3.
I tend to agree with HelixHelix. It suggests to me possibly a mild positive. I wouldn't worry about your FBC, auto-immune disease tends to drag down the white cell count, I naturally sit low on these and have done as far back as it has been tracked - fourteen years. Interesting Vit D as this is often the case again with auto immune disease. The specialists will soon intervene if necessary, just make sure in the meantime that you have a team around you that you trust and can talk freely to as well as being reassuring. Your kidneys and liver will be regularly monitored and any action taken if necessary. As my consultant once told me, pick any man or woman off the street and their blood results will fluctuate over time whilst being perfectly healthy. Once you are in the system and being monitored then every little blip is highlighted. Don't forget to build up a rapport with your team and feel at ease asking them anything, this is what they are trained in and have a passion for. All the best.
I think one of my main concerns over RA is I take lots of medication for other problems.
OA, IHD, COPD Stage 3 Kidney disease and Thyroid for example. I have looked at the medication for RA and to be honest they look terrible, one I can't have because of IHD - I also wonder if I got treat for even mild RA, would they stop my Dihydrocodeine I take for my OA??
I can't see why they would stop the Dihydrocodeine unless you were prescribed something new that would deal with the pain from numerous conditions. I have Rituximab infusions for RA but can still take Ibuprofen and Paracetamol as well as having steroid top ups either into the muscle or directly into the joints. The specialists will advise you and can only give you what you agree to, never feel afraid to challenge a decision and question different treatments.
Thank's for your reply. I can't take Ibuprofen or any other of the NSAIDs .. I am unclear if Rituximab and other RA drugs would interact badly with Dihydrocodeine which I need for OA and also some RA drugs can't be taken by people with IHD. I would by choice if oral steroids work for RA, take Prednisolone . I am used to steroids having COPD.
If you have IHD then ever more important to get RA controlled if you have it, as it can affect the heart too. It's not just something that affects your joints.
Many people take codeine based drugs with their RA meds, and presumably you are aware of the long term risks of taking prednisalone. The best person to discuss this with is your consultant so hope you have an appointment coming up.
Interesting because as well as my other (long standing) heart conditions, IHD and VT and AF some years ago. Along with my suspected RA, or Polymyagia - I had an echo and a leaking valve showed up, first time any echos has ever shown anything..I have appointment with GP tomorrow who will 99% refer me..
Steroids really are the double edged sword, a life saver on inflammation but long term use carries quite bad side effects as well as a risk to the function of the adrenal gland. Steroid will not slow progression of the disease but simply dampen things down. I love these sites for quick advice and opinions but as helixhelix suggested it is so important to discuss with your consultant. My Rheumy is so used to me questioning and challenging everything as well as thinking I know best for a month or two, until I usually end up calling him and saying ok lets do it your way. I trust him completely and even when he put me in touch with a very willing and excited orthopaedic surgeon to discuss two new wrists, I cancelled all plans when my Rheumy later voiced concerns and explained they are not a trouble free fix. As my Rheumy and many specislists say, deal with the here and now, so yes you need to get the RA and inflammstion under control not merely dampened.
I have seen an OS consultant as I have had this for years. I have never seen a "Rheumy" as this is the first time anything other than OA has been suspected. I never got a test for it at my old doctors before I moved. I am also suspected of having cluster headaches with could need Oxygen.
I am 72 and now can't manage holidays abroad, my last was in Zante 20 months ago, I can't see me going abroad again.
Myself and my wife have a drink indoors twice a week, watch a film or play tomb raider like we used to do.
Reading about the RA medications it seems there are a lot of side effects - It seems alcohol is a no no, no big deal but that is what we do twice a week for leisure.
With OA medications the answer is simple, just stop a few hours before, not sure about the half lives of RA.
Yes I take steroids for COPD, I know the dangers only two well, my chest consultant put me on an 8 a day steroid course for 3 weeks to evaluate how they affected me. Then the stopped will no come down course - I would say the pain caused by that was as bad as an OA pain except neck, I have ever experienced.
I take you point on damage to adrenal gland with steroids, most drugs do have a risk... I take Amiodarone for life theatening heart rhythm disorders, I can't take say BB because of COPD - Amiodarone has all but destroyed my Thyroid Function..
I very very rarely drink alcohol since becoming a mum sixteen years ago, maybe one glass of red at Christmas and birthdays. As far as I know alcohol doesn't affect my medication, the real concern is how some meds put extra work on the liver alongside alcohol.
Your evenings in with your wife sounds perfect.
Off subject, what is Zante like for a 68, 56 and a 16 year old? I'm trying to find the calm, safe. clean and small resort feel of Puerto d'Alcudia with enough shops and side streets to keep us occupied with a great beach within 500m.
UPDATE: Although part of my blood test pointed to RA - My doctor has decided to try and sort my low Vit D before anything else is done. The reason is the Erythrocyte sedimentation rate was just in normal range. I have been given 'HUX D3 20,000 IU one capsule a week for 4 weeks then a blood test to see what happens next. Still muscle pain than further test. My OA gives me joint pain only, so I hope the muscle pain has gone in 4 weeks, then I can kiss RA and Polymialgia goodbye.. I am now diagnosed Vitamin D deficiency and Myalgia unspecified for the time being. Thank you for all your replies.
That sounds like a good approach.....best to tackle the simplest things first and some people are very sensitive to Vit D. So let's hope that works for you.
I've been on Methotrexate for 7 years, and I drink alcohol. The latest studies have changed the guidance and now accept that low alcohol consumption does not increase risks. I didn't drink at all for the first couple of months to give my body the best chance of tolerating the drug, but now a couple of nights a week is fine (and pleasant!) and doesn't have an affect on my liver enzymes.
Makes sense what you say. If it turns out not to be Vit D Then it's good to know you don't have to take life changing drugs. Like you I enjoy my couple of nights with a drink and DVD. Thank's for your reply.
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