Seronegative inflammatory arthritis - steroids useful

HJBeans

Hi, I'm in the process of getting rediagnosed after over years in remission from seronegative inflammatory arthritis. Joints have been up for about six weeks in feet, hands, knees and ankles. When I saw the consultant last week, he did some blood tests and gave me an intramuscular injection of steroids which he said should help symptoms. It didn't - I felt markedly worse the few days after the jab with much more swollen joints and fatigue and have been keeping things at bay with ibuprofen since then. I went for a follow up appt today - blood tests entirely clear. He was very surprised the steroids hadn't helped and suggested that perhaps rather than start sulfa (which controlled my symptoms well last time) I try some physio in case this was a biomechanical issue instead of an inflammatory arthritis. Said if it were the latter, the steroid should have helped. I asked to start sulfa anyway - I didn't see why biomechanical problems would hit so many joints at once and I didn't think steroids worked for everyone - and he agreed there'd be no harm in doing both sulfa and physio and seeing how things went.

Any opinions from more knowledgable folk? Has anyone had steroids have no effect, or even make symptoms worse? I don't like that I'm doubting my doctor already, but this feels just as it did a decade ago when I first had it and I'm keen to get started on dmards as soon as I can.

stickywicket

I see in your other thread, you write about dry eyes. Has Sjogren's Syndrome ever been mentioned? It could even account for the joint pain but wouldn't explain why the steroids were ineffective. https://www.nhs.uk/conditions/sjogrens-syndrome/

HJBeans

Thanks - no it's not been mentioned but reading that link it's certtainky a possibility. They seems worth asking about.

silverfoxxxx

Hi,

Strange the consultant was surprised when the steroid injection didn’t work, I am always told when I have had mine over the years that it may or may not help, I’ve only had one work really well and the rest just seemed to take the edge off, although my last one, about 6 months ago also made my inflammation a lot worse and seems to have triggered swelling in other joints since having it, although this could be just coincidental and just the next stage in my journey towards the rest of my joints going down hill.

TrishaW

Hi there,
I have seronegative arthritis too, recently diagnosed as psoriasis arthritis (without psoriasis on my skin)
None of the DMARDs or biologics worked for me, but the IM steroid (Depo Modrone) normally has a dramatic effect.
HOWEVER, on a few occassions it hasn't helped at all!
So I guess it's a bit hit and miss!
Hope this helps
Trisha

glennlfc

Good morning,

I’m 36 years of age and in 2004 got diagnosed with psoriatic arthritis and started on methotrexate 25mg since then I’ve been diagnosed with ankylosis spondylitis also, for the last 14 years I think my rheumatologist has tried pretty much everything to control the swelling in my joints. So in terms of medication there are lots of benefits that’s suits one person that doesn’t work for another.


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[Deleted User]

Welcome Glennlfc,

It’s lovely to meet you, I hope you find the forum as friendly, informative and supportive as I do - and with a good dollop of humour for good measure.

From what you say you have tried many disease modifying drugs - which ones worked best for you? We know that certain drugs work best for certain people but sadly it’s still trial and error until you find the right combination. Sometimes the consultant sees the right combination in terms of slowing the disease but they might not reduce the pain appreciably, so extra medicines are needed there.

Sometimes having a chat can be really useful, if you would like to do that our helpline phone number is 0808 800 4050. They are there Monday - Friday.

Please let us know of any queries or concerns we can help with and do join in the forum wherever you feel comfortable

Take care
Yvonne x

glennlfc

moderator wrote:

Welcome Glennlfc,

It’s lovely to meet you, I hope you find the forum as friendly, informative and supportive as I do - and with a good dollop of humour for good measure.

From what you say you have tried many disease modifying drugs - which ones worked best for you? We know that certain drugs work best for certain people but sadly it’s still trial and error until you find the right combination. Sometimes the consultant sees the right combination in terms of slowing the disease but they might not reduce the pain appreciably, so extra medicines are needed there.

Sometimes having a chat can be really useful, if you would like to do that our helpline phone number is 0808 800 4050. They are there Monday - Friday.

Please let us know of any queries or concerns we can help with and do join in the forum wherever you feel comfortable

Take care
Yvonne x

Good evening,

Yes it’s very informative to understand many of the problems people suffer with, unfortunately from my point of view my rheumatologist is at a loss to what to do with me, I’ve already been passed on to orthopedic for a knee op that wasn’t successful and now been passed back to another rheumatologist at another hospital. Unfortunately due to many years taking all kinds of steroids and anti TNFS I have suffered side effect, hair thinning extremely, impaired vision, chronic headaches, night sweats and extreme weight gain. But like I say not one medication always works for the same person, unfortunately for me it’s taken 14 years and still looking.


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[Deleted User]

Oh dear Glennlfc,

What a sad story. Let’s hope your experiences at your new hospital are more helpful. It’s maybe a good idea just to write your situation as you see it and what priority you want them to cover. Just 1 side of A4. Maybe it’s pain, or mobility or something else, you tell them what you want.

Maybe a pain clinic would be useful? I was very pleased when I had one. I was talked through what pain was and helped to understand the 'behind the scenes' activity, good for me as I like facts. Then it was 'useful' pain or not, that was very good for me near the start of my relationship with arthritis, finally what could help me manage my pain. I’ve used lots of aids, medication, physio, acupuncture, distraction, relaxation, tens machine, heat/cold, meditation and more. It has helped, the pain is still there, it’s always there, but I manage it better and mostly I’m in control now (famous last words!)

Here’s a booklet which might help.
https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/217-managing-pain

If pain is down the list of your outcomes, share what’s at the top and I’m sure someone will have some gems to share which will be helpful.

Take care
Yvonne x

dreamdaisy

Hello Glennflc, it's nice to meet you and I am sorry you have had to find us. I have PsA, I began back in 1997, began with sulph in 2002 and was finally diagnosed in 2006. The label changed nothing, the meds were all too little too late so I am in a pickle now with OA and fibromyalgia too.

Steroid injections never helped me but the tablets? Oh I loved them so weaned myself off during 2011 as I felt I had enough on my plate without adding osteoporosis etc. I take injected meth weekly and injected humira fortnightly, I know things are under control because my bloods are lovely but there has never been any reduction in pain levels and never will. No matter, it is what it is and it will do what it will do. My hair is thinner than it used to be (I've gone from fine, to baby fine to yep, that's my scalp) but compensate with a Grade 3, bold jewellery and colourful shoes to focus people's attention elsewhere.

I hope you find the forum to be of interest, we all get it because we've all got it. DD