I have been reading lots of post on here and have picked up on something that I am worried may become a problem so am looking for advice on how to deal with it proactively.
My whole illness actually began way way back with stiffness and pain in my neck and between my shoulder blades. I initially had Physio which did nothing and then was just in the process of wondering what to do next. When I woke up one morning unable to move and in agony. I was immediately put on steroids and in the drama of everything else that was going on I more or less
Forgot about the back stuff.
As part of the diagnostic process my registrar wanted me to come off the steroids so that she could do spine MRI and hand intra sound and get a diagnosis that would enable her to stick me on DMARDs. As I reduced the steroids I got terribly I'll again and the hand ultrasound screamed inflammatory arthritis. So she duly started me on sulfa. However despite the fact that my back was absolutely killing me the MRI showed nothing. At the time I didn't realise that this would be in anyway significant but now that I read more it seems
That sulfa (which I am no longer on) and mtx don't help the spine. Is this true??? And if so, how do I persuade her that despite what the scan says I KNOW that there is a problem in my spine.
Plus is there anything out there which actually can help my spine? And ( last question) does this mean I have an even worse prognosis than if it was not in my back??
Sorry for all the questions. I am seriously g the registrar on Friday and need to know how to approach this.
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Bon1
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As the specialists say "investigation", take very long time and some time do not pick up a problem. I have been there few times.
You can ask for second opinion, can a GP or a doctor provide the correct medication the first time?
The best thing you can do is to keep a food diary for each meal and the body reaction, this may enable you to work out the best food and drinks for you.
I was watching a TV programme, a little girl was drinking "black current" most of the time during the day and this gave her a few complications!!!, changing it to water the problem went away, no medication necessary, an example. I have gained out of not eating some food or drinking by keeping daily diary. My GP cannot believe this.
If the problems with your spine are because of mechanical injury, osteoarthritis or soft tissue injury then methotrexate/sulphasalazine won't have any effect. And your rheumatologist will probably ignore it completely as it's rarely their priority. The joints in the spine are not synovial joints, so RA doesn't attack them.
Although if so it's odd that nothing showed up on the MRI. But it can only take a tiny alteration to the spine to cause excruciating pain, so perhaps it is something very delicate that just didn't show up. I have three damaged vertebrae and I've had most help from the GP not the rheumy, plus physiotherapist advising on exercise to strengthen the muscles around the damaged areas that has really helped.
I would try and get your doctor to refer you for a second opinion to a specialist ankylosing spondylitis clinic or a rheumatologist with a special interest in this form of inflammatory arthritis. Spinal inflammation can be hard to pick up on MRI, and it really matters what sequences they did on the MRI scan in order to actually show inflammation. They should also have made sure that they scanned the whole sacroiliac area, as inflammation seen there is necessary to get a diagnosis of spondyloarthritis (spinal inflammatory arthritis). Ankylosing spondylitis is a whole heap more difficult to diagnose than RA, as the only really definitive diagnosis comes after bone damage can be seen, and that can be after ten years or more of inflammation. So it takes quite a skilled and specialist rheumatologist to properly interpret the early signs and give you a diagnosis before it gets to permanent damage point.
You are right in that DMARDS generally don't do a lot at all for spinal inflammatory arthritis, though may help the peripheral problems (hands and feet, etc) that also come with spondyloarthritis. DMARDS are what they say on the tin for RA - disease modifying antirheumatic drugs. Unfortunately there is no real disease modifying effect in spondyloarthritis, though they can have some effect in dampening down the disease. Generally for spondyloarthritis, the first line treatment is NSAIDS at full prescription strength, though usually MTX and sometimes SSZ are also tried, before progressing to anti-tnfs (which like RA have quite strict criteria).
So, I think your best bet if you believe your back pain to be inflammatory (as I would, with that response to steroids), would be to get a second opinion from an ankylosing spondylitis specialist, and hope that they also then reviewed your MRI with a musculoskeletal specialist radiologist.
Earth witch thank you so much for your reply. I guess I should tell the registrar on Friday that I truly believe the spine is involved. Hopefully she will respond to that appropriately. Did you have a similar experience?
Anything that we feel no right, just ask the doctor again and again because we may overlook the possible side effect and the doctor may not know exact which part of our body is also being affected.
I remembered at one point in the early stage of my sickness, I was a cold and I went to GP for that. However, I did inform the GP that I was a RA patient and I showed him my medical record of what I was prescribed.
He gave me antibiotic and it did not really cure me. I continue to have the bad cough then my friend, with a very good intention, advised me to take some Chinese herbs. After 2 weeks of having the herbs, my whole body was getting very painful. I did not know what happen then. I did not read enough to understand the seriousness of not trying to go for any supplement without my doctor's knowledge then.
When I saw my doctor a month down the road, I told her my problem. She asked what did I take and she told me no supplement and no Chinese herbs to avoid complication. She insisted that if I wanted to take anything, she must be informed and she must approved it first.
Most of the Chinese herbs are just natural plants but many of these plants help to increase our immune system, therefore they will go against the treatment of methotrexate which aims to reduce our immune system. Similarly, many supplements in the market too to increase our immune system, therefore we should only consume them with our doctors' approval.
Summary, always ask the doctor when you have any doubt. Always ask the doctor first before you proceed to take any supplements.
I was initially told I had RA however more recently that had been changed to Psoriatic Arthritis after involvement of back problems.
The arthritis first started in my feet, then hands and then all over. I had had a painful neck for years and was told I had cervical foraminal stenosis after an MRI. Since then things got progressively worse and when I started having skin changes the diagnosis was changed.
I started on MTX, Leflunomide and then Sulfasalazine however, I am now on the biosimilar Benepali. This did seem to be helping but due to a recent infection I have had to come off it temporarily.
Ask at your next appointment if there is a possibility it could be a different type of inflammatory arthritis. PsA certainly can have spinal involvement.
I have had RA for over 40 years and have had Anti-TNF infusions of Infliximab for 10 years. I am also on MTX and have had several joint operations. Over the last year or more I have developed a very painful neck and have mentioned it to my Rheumy many times and she past it off initially as one of those things that happen with RA. After complaining several times she sent me for an x-ray which showed nothing was particularly wrong other than general wear and tear. It is still very painful and a few weeks ago I decided to go and see my GP. I didn't see my family GP but a locum who put me through a whole series of positions and questions that I believe she was taking from a text book for anyone complaining of neck pain. At the end of the session she said she could find nothing wrong and in fact laughed when I said that there must be something that was causing the terrible pain. More recently I went to see my Rheumy again for a check up and again mentioned this problem. She again said that she couldn't do anymore without talking to the consultant. I came out of the Rheumy's office and bumped into the consultant who I know on more personal terms and mentioned it to him. He told me not to worry he would do something to sort the matter. I was sent an appointment for MRI and am currently awaiting the result. I hope they find something just to confirm that I am not faking the pain and show the powers to be that I really had reason to continue to complain.
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