Confused 😳

Hi All

Thank-you all for your support & kind messages..

Just got home from my first Rheumatologist appoint and don't know what to think.... Doc seems to think it's too early to diagnose RA as he said it may be linked to the pneumonia I had just before Christmas...

I wasn't told I had pneumonia before Christmas, I was just told it was a lung infection 🙄

Anyway Doc gave me a Depo something steroid injection 120mg, had bloods taken and X-rays of hands, feet & lungs and told to go back in 3-4 weeks... nurse also told me to rest for a couple of days after the injection, so I guess it's no work for me tomorrow. TBH I need a rest cos I'm in agony with all of my joints aching and swollen ...

Fingers crossed Doc is right as I don't want to have a positive RA diag... if it's viral or something that means this pain could go away for good, we'll have to wait and see.

Sorry for moaning on but just feel more confused and don't know what to do...

Sue

X

29 Replies

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  • It is possible to have a so-called reactive-arthritis, mimicking RA as a consequence of a severe infection elsewhere a short-time previously. I was told I had this initially, then after a year or so they changed their mind and decided it was RA after all. Didn't matter, I was put on Humira and it went away.

    Regarding pneumonia. A lung infection is pneumonia; it is the same. Pneumonia is simply the medical term for a lung infection, that's all. What you "need" to do is ask your doctor to explain your current diagnosis and his/her plan for what comes next. The doctor knows your blood test results which is what they use to make a definitive diagnosis.

  • Thanks Hawker955

    My blood tests done by GP was positive for Rheumatoid Factor and the Rheumatologist told me today the other one was negative... not sure what the other one is...

    Current plan has been started today; Depo injection, new bloods taken & xrays... back to see Rheumatologist in 3/4 weeks... let's hope injection kicks in soon cos I'm in agony 😐

    Thanks for explanation for pneumonia xx

  • Hey Stats we'll gladly welcome you as a permanent member but deeply hope that you won't qualify and this an inflammatory response to you pneumonia!

    All the best

    Ali

  • Thanks Ali

    Just so confusing... I am in agony in my hands, feet, shoulders & knees with swollen joints, this has been going on for over six weeks now and seems to be getting worse, let's hope the Depo injection starts working soon ...

    I hope I don't need to become a perm member (sorry to all sufferers 😘) but only time will tell.

    Thanks for your support

    Sue

  • Hi

    I got told that I could not have inflammatory arthritis because prednisolone had no effect on me, except an allergic one. Yet, they had results of ultrasound clearly showing all the features of RA - joint damage, synovial thickening, swollen tendons, nodules, joint effusions, severe inflammation and swelling.

    I think it is a knee jerk reaction of disappointment that they can't fob you off with something cheap or keep dilly dallying.

  • Have they done any imaging apart from x-rays? Something would show up on ultrasound or MRI.

    I also think too much reliance is placed on blood tests. You can have raised inflammation for a number of reasons including inactivity, obesity, poor diet, smoking. You can also throw up the occasional highly abnormal blood tests. They need at least to be repeated over a period of time.

    The consultant said to me that he could easily discharge me as the tests did not confirm anything but that would not be helpful so he was going to try me on Prednisolone and then he said he would like to see me in 3-4 months time (out of the kindness of his heart). I knew he could not discharge me because I had got the results of the tests from Medical Records and also the sonographer and radiologist had told me the results. Otherwise, I would have been upset. I asked what I was supposed to do as I had lost the use of my hands and he replied that there was nothing he could do because he did not know what it was. It was actually his job to find out. Anyway, when I saw him again, he did an MRI scan which showed an improvement. He then decided I had RA. The improvement was caused by electro acupuncture and Chinese herbal medicine.

    I don't know if a Vit D deficiency is one of the features of RA. It certainly leads to osteoporosis.

    I had a slightly deficient Vit D count - my next door neighbour who was a Greek doctor kept commenting on my white skin and telling me to buy Vit D tablets. At the time, I went for a health screening and the doctor told me to buy some Vit D tablets. I insisted on a Vit D test because I did not believe them - it cost me £90 and it confirmed a slight deficiency.

    I had seen the GP years earlier because I clearly don't have good bones and had an early menopause and was worried about osteoporosis. He said I could not possibly have a Vit D deficiency because I had red hair and only those of Asian ethnicity get osteoporosis on account of Vit D deficiency - and I also did a lot of exercise which prevents osteoporosis. Well, when I finally got a dexa scan ten years later, it showed really extreme osteoporosis lol. My osteopath said she had never heard such rubbish in all her medical training as people with red hair don't get osteoporosis. I wonder if the crux of the problem is penny pinching.

    By the way, if you do develop osteoporosis, Tibolone which is form of HRT that only affects the bones and the brain (not the heart or the female organs) is very good and I got a significant reversal after 18 months. Other forms of HRT did not agree with me.

  • Most RA sufferers have vit.D deficiency. Vit D also fight infections effectively. You would think every rheumy would prescribe it for their patients.

  • I didn't know that. The doctor at the private screening who told me to buy it said to buy Solgar which I did. It did not cost much. I was prescribed some by the GP when the osteoporosis was confirmed but I did not take it - it was real cheap rubbish. I usually buy products from Biocare which are all very effective. I just assumed I had it (as did the doctor next door and the one at the screening) because I have never gone in the sun much because I don't tan and burn easily. My Greek neighbour used to tell me to go in the sun every time I saw him in the garden.

  • It is actually quite important to test your D3 level and really do a follow up to see that it reaches a clinical level. Pills are not often well absorbed. The best source together with D3 supplement and vit K2 for absorbtion, is the sun. The D vit that your body produces with the help of the sun is different than what you get in pills or oils and also more effective.

  • Thanks for the info. I'm afraid though that all these things are desirables. I just don't think the NHS is equipped for all this monitoring. I do quite a lot myself as I have batteries of blood tests done at least every other year but the Vit D test costs more than all the others put together. I know you can send away for it. It is best to go in the sun but I can't take too much exposure.

  • If you have one third of your body exposed to the sun for a half an hour you get the needed daily dose of vit.D😊

  • My hands and face will almost always be exposed to the elements, and quite often my arms but that is nowhere near one third. But there is rarely any sun in the winter and often not in other seasons.

  • So remember to supplement😊

  • There are actually theories that believe that D deficiency is one of the players in RA.

  • Thanks for the info. It is hard to remember everything. I eat more dairy (yoghurt, cheese, butter, a bit of cream and ice cream, not milk) than most people, as per log stats on cruise!

    I do remember now having a second Vit D test which showed the bottom end of the normal range, which illustrates that supplements don't make much difference. It is definitely sunshine that helps. I don't have good bones in any respect - very light frame, osteoporosis, scoliosis. I suppose there are eating habits (alcohol?) which suppress certain vitamin intake but we need a life! Exercise is very good for the bones and I do a lot of that.

    Best wishes.

  • If you need to strengthen your bones dairy is not the way to go. Leafy green vegetables and boron+ magnesium with a good D3+K2 ( cod liver oil is also a good choice)is much more efficient. Most calcium supplements are not absorbed very well. Choral calcium is however one of the best.just some ideas😊

  • I've eaten a lot of leafy green veg every day of my life. I also initially took magnesium tablets. One thing you forgot though is Vit C which the body cannot store. It is not possible to absorb Vit D unless Vit C and calcium are taken at the same time, so it is best to drink a glass of freshly pressed orange juice and eat white toast with plenty of butter for breakfast at the same time as taking Vit D tablets. You could try taking the tablets with, for instance, dinner containing green leafy veg but I am sceptical that it will help absorption.

  • My vit D are prescribed by doctor but I can buy same ones there around £12:99 at any chemist each equivalent to 500 gmcalcium /200 cold colecalciferol

  • My doctors prescribe it first time I got it chemist delivered it to my door with a note from dipoctor telling me I must take these vit D tablets or my needs would not work properly I must admit I'm not very good at remembering to have one three times a day with food but I'm going to try to stop forgetting it

  • Good idea!😊👍🏻

  • I think your right about blood tests not always being reliable I was hospitalised six years ago with RA yet my bloods did not show I had it for five years but the consultant said because it's not showing in blood test does not mean I didn't have it the symptons were all there I couldn't move without help I could not lift my hand to mouth to feed myself could do nothing at all for myself for eight weeks before docs decided to send me to See RA consultant at hospital the swellings were huge the pain was horrendous ,unbearable cannot tell you the despair I felt at the time but they put me in sulfasalazine witching weeks I could do things for myself again swelling /pain went away I was very grateful for that taken six years before another flare up now I'm on sulfasalazine and six weeks into methotrexit still In pain hardly able to use arms hands ,feet painful too just hoping it eventually goes off for a while so keep persevering with RA clinic and meds good luck

  • I know the blood tests for inflammation are not reliable because so many things can cause inflammation including overweight and diet.

    I am puzzled regarding the RF one as well as so many people have RA and do not have a "positive" result; likewise, many people with a "positive" RF result do not have RA.

    I have put the term "positive" in quotes because I do not understand that ether. The lab used by my surgery states that an RF count under ten is negative for RA, but 10+ is positive.

    I had an RF test done in 2004 and the result was 10, ie positive, but the GP said this was negative. Another one done in 2014, when the RA came on, was also 10 but again the GP said it was negative.

    How on earth though can a result of 10 or under, showing a count in the RF be negative when just a notch or two more is positive.

    I think they make it up as they go along.

  • You will always be welcome here Stats 12, but I surely hope you do not need this support group.

    As hawker955 mentioned, reactive arthritis is caused by an infection and it can mimic RA symptoms. Reactive arthritis can be cured with antibiotics.

    Please keep us informed and I hope you get this all sorted out soon.

    All the best to you

    Sue

  • Hi Sue,

    I suppose some comfort can be taken from the doctor being so thorough. X Rays to see if there is any damage would be one way of backing up an RA diagnosis.

    The steroids should help in a few days if they are going to, I would think? I am currently on high dose of oral pred but still have tender joints so I don't think it completely stops all pain... could be just me.

    The other test was likely to have been anti CCP which is even more specific to RA than the RF.

    I do hope that you have some relief soon. It's a miserable state to be in, and one that I'm sure everyone here can sympathise with. xo

  • I know how you feel my GP says it is RA consultant says it isn't - had prednisolone which really worked, even cured a problem with teeth. the consultant i was seeing then said it would not return. 2nd consultant has done MRI tests (no results as yet) as pain in my fingers was bad now have pain in feet and hands no real swelling but puffy, joints are now beginning to feel tender. Don't want it to be RA but at least it would be an answer to what is going on. Also think I have flexible joint syndrome. have a "double Jointed" (as it was called when I was a kid) thumb. roll on end of Feb when I see consultant again and hopefully some answers

  • OH was also initially told to go away for 6 weeks (with no treatment other than naproxen) because it was inflammatory arthritis. We went back after about 2 months of him getting worse, were referred to rheumatology, and 6 months later and he's on Prednisolone and methotrexate (which 4 weeks in seems to have started working 😀) and has been diagnosed with sero-negative RA.

    If the treatment you are given doesn't work for you - keep plugging away.

  • I was diagnosed with RA flare up in hospital though it didn't show in my bloods as RA ,sulfasalazine worked well for me no side effects etc but last sept was at RA clinic to see consultant due to recent bad flare up the young doctor I saw (not my usual ) asked why I was there I told him RA flare he said quite sharply you don't have RA you have inflammatory arthritis. I told him I'd been treated for RA for six years anyway he just said keep taking pain killers was no use at all so I rang clinic a couple weeks later because I just could not manage this flare up got another appointment with a consultant actually saw my real new consultant ( my first one had retired ) one of first things he said to me was RA is showing up in your bloods so he'd obviuosly known what had gone off time before ,he suggested methotrexate did X-rays hands /chest blood test. Then said I'd get another appointment when to go for meds ,that was about two months later I didn't take well to it first time but started it again six weeks ago I'm can cope with slight nausea I get but my arms and hands are showing no sign if improving yet so I take it patience is required from me so don't take it too badly when they say it's not showing in your bloods does not mean you don't have it take care

  • I hope your right I would not wish RA on my worst enemy if I new I had one good luck

  • Hi All 😘

    I do hope you are all comfortable and not bothered too much by the pain.

    Well, just wanted to thank you all for your kind words and for all the useful advice in this thread and in the community overall... my update:

    After my initial consultation with my Rheumatologist Mr Wright (Wed 1 Feb) which left me confused, I started to get my head around things. The rheumatology dept were really quick, I received a copy of the report the consultant had sent to my GP on the Friday stating what he found and outlining the plan going forward and then on the Saturday an appointment for 27 Feb, today.. (I also received a letter last week advising bloods confirmed RA, therefore I was more prepared for appointment today 🙈)

    Well consultant advised he would've been starting me on Methotrexate today but he wasn't happy with my chest X-ray, therefore he gave me another steroid injection Depo... and requested another chest X-ray in 10 days time and also said I would get an appointment with Rheumy nurse to educate me on the drugs etc... so looks like yr all stuck with me in yr club 😳 Lol....

    I'm pleased they have given me another injection as the first one was beginning to wear off with a vengeance 😫!! Just a bit concerned as I was under the impression it's not good to have too many of these steroids ??

    Also little bit concerned about my chest... Just waiting for next appointment now which I expect will be in a couple of weeks...

    Lots of questions spinning around my head at mo so hopefully nurse will be able to enlighten me when I see him/her.

    Take care everyone

    Sue

    XX

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