Had an appointment with the consultant today who I have been desperate to see as I have been in so much pain over the last 3 months.
My GP wrote to him 2 months ago to see if I could get an earlier appointment than the one scheduled for today, but never heard anything from him.
In July I was prescribed 15 mgs methotrexate and to reduce from 12 mgs of pred down to 5.
Today, the consultant told me that perhaps he had been a bit too hasty in reducing the pred down to 5 mgs and this could be why my blood tests are still showing inflammation and why I am in so much pain and feeling very tired. He then told me I needed to be "put down" then said he was joking!
He has increased my mtx to 20 mgs and to remain on 5mgs of pred. He also gave me a steroid injection. This chap is not very forthcoming with info, so could anyone please tell me will I start to feel a lot better with this injection and the increase in mtx.
I have an appointment with rheumy nurse in 2 months, but still have to go for the 2 weekly blood tests
Kind regards
Sharron
Written by
Grannyshiraz
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These doctors never fail to surprise me. What has happened to good communication.
It could take a few weeks to gain the benefit of the extra Metho.
The steriod injection should work within the next 3 or 4 days. This should tide you over till the drugs kick in.
Good luck
I would be tempted to ask him to explain his reasons behind the increase and how he expects the drug to work and how long it will take.
You have every right to an explanation. After all you do pay into the NHS, so therefore contribute to his salary. Whether he likes it or not that is the case.
Blunt I know. But often what some doctors need.
Good luck from a fellow suffer, but not a silent one.
Most' of my patients like the fact that I ask the doctor to explain their findings and reasons behind treatment.
Exactly what I would expect from a consultation.
Wishing you well. Hope the injection kicks in soon.
I had my Achilles tendon sheath injected on Monday. Pain is lessening now. Can now weightbear on my left leg. Hips and ankles still very painful. But persevering with the drugs therapy.
What a prat, a sense of humour at times like these is a tough pill to swallow isn't it! Next time ring yr consultants secretary directly ( hospital will put you through) and briefly explain yr concerns and ask for an earlier appointment. Works for me every time! 4 years ago when I was in agony with pain from swelling on ankles and wrists my GP gave me Arcoxia ( anti inflammatory) and it worked right away - may be worth an ask? I still take it regularly now and it generally keeps the wolf from the door, just enough for me to cope with the other effects of RA, like chronic fatigue.( I suspect this is what yr experiencing? - beyond just tiredness!).
I tried MTX but with no good result for me, I am a nightmare case lol and don't react well to most things they give me, so can't comment on that but the injection should start to work immediately and within say 4 days be on top of the inflammation, but it's never 100% effective for everyone, it depends not only how you personally respond but also if they put in in the exact place needed. I've had one that worked brilliantly in the wrist and one that didn't. I've had one in my bum too that did ziltch. We're all different so respond differently to others receiving the same therapies. I hated hearing that 10 years ago as it sounded so lame but now realise it is so true. Sleep when you can and eat well, take a multi vit daily if ok to and try and be patient regarding meds to work but don't be patient about receiving all the information you need to allay fears or understand your condition, pester and ask away as many qualified staff as you need to until yr satisfied. You're young and deserve a reasonable quality of life.....that's mentally as well as physically. After all, your care should extend to holistic care. Gentle hugs, Tamsin x
That was a huge reduction in pred in one go I think no wonder you was in pain. I started on 10mg MTX increasing to 20mg which I am now on til I see my rheumy nurse next week. I to had a steroid injection which helped me reduce the pred but did not do much else. I am now down to 11mg pred though my rheumy wanted me to go down to 10 from 15, but he said only if I felt able to do so. I didn't so I reduced 1mg a week til last week then I could not drop at all because of pain.
How is your CRP? mine is up and down like a yo yo but last test was 29 the highest it's ever been so I am guessing they may increase my MTX or up the pred, we shall see.
Hope you feel better soon and get the meds working.
Last week at ninewells where I went for sun sensitivity they sent me off with several sheets of paper, one with a tick by the side of my diagnosis. Also a list of creams to avoid or recommended. Couldn't rheumys do this? This was nhs Scotland. Sadly this practice doesn't extend to rheumatology but it could. And I always ask for a copy of anything they write to my gp and have found several mistakes in them which I've asked to be corrected
I too requested all correspondence to gp to be copied to me. Last time i had to call rheumys secretary because i didnt receive anything. I am hoping it wont be the same this time. A long time ago a consultant told my gp I had OA in my lumbar spine but i only found out by accident 10yrs later! Cathie in an ideal world it would be great to have everything under one roof and different deparments linked up via computer. Sadly this is very much not the case. At my last appointment my rheumy asked me what meds i take, it was on the tip of my tongue to say " the ones you prescribed! Look at your notes! But i didnt. I also had to ask him to look at my xrays. Hopefully my next appointment will be much better. Take care xxx
I would also be wanting doctor to explain his thinking about getting me off steroids completely, as they're really not good to take for long periods unless you've tried everything else without success so have no choice. By that I mean how long does he think it right to keep trying increasing doses of MTX alone before adding in other drugs, rather than just keeping going with steroids. It does take months to work, but once you've given it six months or so if not doing enough then start nagging about getting another disease modifying drug as well as the MTX.
I'm lucky enough to respond very well to the steroid jabs, which usually kick in after about 24 hours and last for 6 weeks or so. (But the steroid pills turn me into a moon faced psychotic monster, so I hate them).
That's why we're the under one roof bit. I try to explain to drs precisely that I can make sure everyone knows what's what, the latest howler was that because I'd been prescribed antidepressants some time ago, the rheumy had me down as suffering from depression. I had to point out the difference. A good friend of mind does have clinical depression and she urged me to get it off my record. She says that drs put a lot down to that. Does that ring any bells!
Am om methottrexate also 12.5 i take 5 pills once a week alsp prednisone3 every night i take about 23 tablets daily as i have both forms arthritis heart failure sciati and my bones would break if i looked at them
Hi Sharon, I hope you take someone in with you when you see this idiot who said you should be put down.
So not funny. Is there another consultant you could see???
Secretary is best person to contact for most things.
Any chance of asking for MTX by injection? This made a huge difference to me as cancelled out the fatigue almost immediately. Find out what you can about the Rheumy team and also about being on steroids longterm.
Don't forget it's your body and your pain and you have to make them understand that. Hope I'm not ranting too much but quite cross about your treatment.
Hi Jan thanks for your reply. I am going to do a bit of research on the mtx injection so that when I see the nurse in a couple of months I can ask the right questions.
I don't like being on the steroids as I have put on over two stone (I was never skinny) but I hate the size that I am now which doesn't leave you feeling good about yourself.
When I went to see the consultant yesterday I had written a list of things (memory jogger) I wanted to ask him about, but he took it off me and just discarded it to one side and I never go the chance to address any of the queries I had written down.
I will re-write my questions and will be ready and armed for when I see the Rheumy nurse in a couple of months.
Your consultant, forgive me, needs to learn some manners!!!! Are you sure you can't get anyone to go with you? They could hold the list and just cough when you need to ask the next question. These Rheumy people need to listen to us.
I also put on 2 stone but once weaned off the steroids, not easy, I have lost 26 lbs by going to slimming world!!!
I know it is horribly difficult this disease but we do have to take control.....
When I wanted to tell my consultant how bad I was feeling, I said that I felt like I was living half a life and was the other half really worth it!!!! I think this took him by surprise and he said - oh dear we can't have that can we? That was when we came up with the plan to go MTX injection route which is 100% better than swallowing the pills. Please please be strong in what you say to him - even sit there crying if that is what you need to do and sit firm, don't let them rush you out the door. Enough now, my good wishes to you, jan
Oh my, that was an absolutely horrible thing for your Dr to say to you. I would complain loud & long if my Dr said that to me-even in a joking manner. Did you call him on that-to apologize ? I think that you deserve a written apology.
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