Update 2 on stopping medication!!

Went to the rheumatology clinic this afternoon and I'm now even more confused.

I'm to stay off the mtx and sulphasalazine due to the side effects and will have my steroid injection tomorrow as planned. As my ESR is back up again and I have pain in my hands and knees and stiffness first thing, he's booked me in for an ultra sound scan on my hands. I did point out to him that the steroid injection may not give a true reading on the scan.

What I'm confused about is that he said as I don't have any swelling (I did have in my foot, which started all this off) it may not be arthritis!

So I'm now not sure if I've put up with my hair falling out and the sulphasalazine rash for nothing and why did the consultantis send me leaflets on Leflunomide and anti TNF medication leaflets to read ready for this appointment.

If its not arthritis then what is it?

12 Replies

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  • I have nearly the same issue

    My last ultra sound scan on my hands and feet showed no signs of inflammation- I get terrible pains in both.

    I too am on Arava which is making my hair fall- rash-dizzyness and other contra-actions.

    My specialist nurse wanted nothing to do with me last week when I called her, she moaned about it been August, and every one is holidaying- the new doc is rushed off her feet-

    She told me that my bloods came back allright so there is no problem- they may have come back ok, but I dont feel ok!

    I called my doctor today who wanted me to attend an emergancy appointment today- I could not get, so I am going on Friday he says he want to make a referral to see my consultant asap.

    Ive been told that there is no inflammation present in my joint, like you I have the symptoms, and have had the steroid jabs, last year (June) my joint were inflammed and sore, My last appnt with my consultant ,she told me my body may be use mimmacking the pain.

  • Thank you reikimaster, feel better that someone is also in my position. Please let me know what they say to you. Just trying to get my head around the diagnosis and now this.

  • Hang on - but if your ESR is raised then there must be inflammation somewhere surely? When I saw my rheumy a few weeks ago he said that the drugs I'm on must be working as the swelling has gone right down in my hands and that's what's meant to happen. I checked with him that he thought it was still rheumatoid and he said yes he still thinks it is and he thought it would come back if I stopped taking the drugs.

    So perhaps the drugs have worked well despite side effects on you both and that's why there's no swelling to be found on the ultrasounds now? Personally I would not be taking these drugs and put up with the horrible side effects if my rheumy had said it might not be inflammatory arthritis so I can see why you're both fed up. And surely they wouldn't agree to prescribe them unless they were reasonably certain that the pain was caused by an inflammatory condition to begin with? TTX

  • PS did you not ask your consultant this question about i"f not arthritis what is going on then?" 2pus2? There are other conditions such as Lupus and Fibro they might be considering perhaps - neither have swelling but both cause pain.

  • Hi Tilda, no I didn't ask wish now I had.... It was at the end of the appointment and so out of the blue I didn't really take in what he was saying. I'm cross with myself that I didn't. I'm seeing the gp tomorrow for my injection will tackle him instead! ESR 68 on Monday had got it down to 30 on mtx alone so yes something is not right.

    Thanks for replying I was hoping you would :-)

  • Oh I'm really frustrated for you 2plus2. If you read my ESR question you'll see that having a high ESR is certainly not meaningless in terms of inflammatory arthritis. Please push your GP to demand a full explanation in writing from the rheumy. You could always refuse the steroid injection until they have given you more clarity and until your ultrasound is done? I find that pester power is the only way in this world of rheumatology - get your GP to do the pestering for you as it's his job and if he thinks he's going to have you hassling him he's more likely to hassle your rheumy by email or whatever it takes. It may be that they are wondering about a different type of inflammatory arthritis but they should be telling you if this is the case. TTx

  • Hi,

    I've also had a similar issue. I've hardly had any swelling and what swelling I've had has mostly been in my feet (which was also the first symptom I had) My ESR and CRP results have never been particularly high. When I had my first consultant apptmt she didn't seem convinced it was RA, but the anti CCP which came back positive made her decide to put me on Methotrexate. After 3 and a half months things are better but joints are still painful on and off and this seems to coincide with whatever I've done the previous day. Hope you get some answers, would be interested to find out.

    Caroline.

  • Thank you again for your replies, Tilda great minds think a like! Decided last night not to have the steroid. I need answers and if it means putting up with the pain and stiffness I can do that for an uncompromised ultrasound result. So have been to Gp this morning he is very much of the opinion it's arthritis and couldn't or wouldn't give me any other possible diagnosis. He thought it was reasonable not to have the steroid injection and to see how I go. I'm luckily on school holidays so can rest up when needed. I will ring the rheumatology clinic and let them know, hopefully they may be able to speed up the scan.

    I except that it is probably inflammatory arthritis but I'm going to be gutted if I've taken all these horrible tablets for nothing.. Oh well keep plodding on everyone :-)

  • Hi 2plus2

    So sorry to hear about all the confusion over your condition. Unfortunately diagnosis of RA and other, similar conditions is not always easy, and sometimes treating it can be helpful in trying to determine a diagnosis if nothing else.

    However, if your consultant thinks it's not RA and you and your GP are concerned that it might be, it may be worth speaking to the GP about potentially being referred for a 2nd opinion. There is an article on the NHS website that helps explain this process:

    nhs.uk/chq/Pages/910.aspx?C...

    It is also important, as Tilda suggested to find out what other conditions the consultant thinks it may be if not a form of arthritis.

    I hope you get some clearer answers soon.

    Victoria

  • Last time I saw the rheumatologist he wasn't quite as rushed, and I had prepared a list of questions I wanted answered that I gave him.

    He said that it was important to keep an open mind as I had always had atypical symptoms and signs and not very helpful blood tests (they are always all over the place and very variable, partly because it has affected my bone marrow). The only diagnosis he could be sure of was that I have an auto-immune disease which also affects my joints, tendons and muscles!

    When I'm asked what is wrong with me, I use RA for shorthand as most health professionals know what that is, and "auto-immune disease" for those over helpful people who think I could be cured by taking cider vinegar and honey, etc. (oh, how I wish that were true!!!!).

    Sometimes you just have to live without a clear "label", but DON'T feel that the health professionals think that you are faking. They would not be taking all this trouble and doing all these tests, putting you on toxic drugs, etc if they didn't think that you have something serious - but their rather off-hand attitude when they are being defensive (because they are not sure where to go next) often comes across as if they think you are making a fuss over nothing. I've often had to tell myself this after an unproductive appointment!

    Stick with it....you'll get there in the end.

  • What has thrown me is that the consultant who I spoke to about the rash sent me leaflets on leflunomide and Anti TNF and the nras booklet managing well. It was the new registrar ((August changeover) that has said it might not be arthritis. Anyway nothing to do until the scan so going to just be a normal person in pain the same as I was last summer pre diagnosis, no horrible tablets and back on the cider :-)

  • At least you can spend this med free time experimenting with exercise and foods a little and enjoy the odd whisky or g&t as well as the cider perhaps? My rheumatologist told me to keep an open mind - things could change when he diagnosed me last November. I told him 2 weeks ago that I have spent the last 8 months keeping my mind open and wonder now what he actually meant and asked him if he still thought it was RA? He said yes he thinks it is but he's had patients who have only really come out with confirming symptoms up to four years later when it's become clear that they actually have some other form of arthritis. RA is a general term as Old Timer has said and he thinks it probably covers several different conditions. As he told me it's only called RA because a group of rheumatologists got together and gave it this title! I can see why you are worrying but to my mind the problem for you is that the consultant didn't actually explain himself which has left you feeling rather lost and in limbo again. I would do as Victoria suggests and seek a second opinion if you can. Tilda x

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