I was diagnosed with Ankylosing spondilitis in December 2020 after previously having been diagnosed with PMR and treated with Prednisolone. I was weaned off Pred and started Methotexate in April 21. Still having flares in June last year I saw rheumatologist who changed my 15mg tablets to 25 mg methoject pens. I was having flare issues and still am. Not heard from Rheumy since June. No response from hospital rheumy phone. Last Monday I went into the hospital and asked for a rheumy nurse but told to leave details and they would get in touch. Im still waiting. How long do you wait for a follow up?? Having bloods done with GP 3 months intervals.
Amb1xkr
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Amb1xkr
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If I was in your place I would ring every couple of days until I received a response or I would ring my GP explain the situation and ask their advice. Best wishes to you.
I think you really need to push to get the help that you need, I’ve realised this myself just recently. I know that it takes energy and we already have enough on our plates. 🌸
Yes, sometimes you have to make a nuisance of yourself. Keep ringing the Rheumy line. If no joy go to PALS., or I have found the consultants secretary very helpful when all else failed. Good luck
This level of neglect needs to be addressed. I'd be going straight to PALS with a written complaint and copy that letter to your MP and Head of the Trust. It's well past time for you to get the medical help you need. Hiding behind unanswered phones and closed doors is unacceptable.
When I ring the rheumatologist department they ask you to leave a message they state they will call back within 3 days and nearly allways do, make sure you leave your all your details including nhs number.
My story is very similar, I was put on steroids for polymyalgia and GCA back in 2012. The rheumatologist felt there was more going on, and X-ray of the sacroiliac joints showed fusion, and I was diagnosed with AS.
Methotrexate has been shown not to help spinal symptoms, but is very good for peripheral symptoms. I’m on 25mg MTX for my hands, feet, hips and knees, and a biologic for the spinal symptoms. My ribs are fused, so I have no chest expansion which has also led to lung and heart complications. Unfortunately I went around 25yrs before diagnosed AS, which is why I have issues now. I’m also on steroids for life as I have severe adrenal insufficiency, and my adrenals have atrophied. That was diagnosed when I had a severe stroke due to an adrenal crisis.
I would try ringing the secretary if you’ve already tried the nurses helpline with no response. I’ve been fortunate due to having complications I’m seen every 4 months right through the pandemic. If you have no joy then go via PALs.
Do you do daily stretches?, I find these are essential, and if I miss them, I notice the difference. Heat pads are also helpful. I can’t take nsaids, so my gp put me on a pain patch, so I don’t get the peaks & troughs you get with oral. The NASS website has excellent videos of stretches, and booklets around flares, fatigue, info for employers etc. Hope you get help soon and that they review your medication.
Thank you for tips and reasurance. Goodness me you have an awful lot to deal with. It just makes you worry when you have constant flares that irreversible damage is being done while you wait for contact. I remember the rheumatologist telling me that the Methotrexate was purely for peripheral joints and that there was evidence on MRIs of disease in my sacroiliac/hip area but never been given anything for that.
if your MRI shows significant active inflammation you should be eligible for biologics. It’s worth raising the question with them. I went from struggling to reach my knees, to touching the floor within a few weeks of starting biologics. I’ve been on them for 6yrs now, and gave fewer infections than pre biologics.
I totally agree with all that has been said regarding delays and receiving care. I too ended up contacting a Consultants Secretary and did get a response. Another of the Consultants eventually wrote to me and apologised (I am now under her care) and also do contact Pals. So far I have been waiting over 4 months for one department but the other 3 are now attending to me although they do not seem to liaise with one another. You just need to get on that bottom rung of the ladder to feel that someone cares......we should be able to get a GP response without all the hassle one has to go through. Big hug and keep us informed.
Dont give up ........I didnt and I am now getting some answers. In one case I was sent an internal memo from a rheumatologist to Respiratory asking for advice about me having lung problem/scarring etc and I knew nothing about it and no advice, appointment etc was given. .....so this allows one brain to imagine anything. I complained and received a letter of apology from another Consultant and I am now under her care BUT still waiting for contact from respiratory and its three months later. I have an RA rheumy nurse appointment next week so will type a letter to the Consultant and push yet again ...I will resort to PALS if I need too. Answers may say I have no problem but we must get those answers. Please push on, you are unique and worth it.👍
I sympathise!!! I am in exactly the same boat here. Where are you?
I was told I had Polymyalgia, put on steroids( by private hospital here) ly gp got very angry . Took me off stetoids. Rheumatology here told me( after many MRIs that I had Ankylosis spondilitis. psoriatic arthritis , Sjorgens etc. When the insurance company wanted to lnow if I had rheumatic or osteo arthritis , I couldn’t answer , I don’t know. Not on any arthritis pills now, biologics made me ill, sulphasalizine would have vlashed with Digoxin and then I lost confidence. Don’t give up Ambi !!
my goodness !!!! So many of us in the same situation !! GP unavailable, departments not liasing, rheum call lines not answered , arrogant rheumy consultants .Conflicting diagnoses and medication . PALS , no reply , too busy . Why is this ? I am on the AF/ cardio site too , there are very very few similar complaints.
My GP told me to ring the rheumatology nurses helpline which I did this morning, only to get an answerphone message saying due to understaffing there would be no one available today . This is not the first time it’s happened.
Putting your concerns in writing often gets things moving. The hospital switchboard should be able to give you, your consultant's secretaries email address.
you need to get off Methotrexate, it is not for everyone, a consultant told me that in the hospital that i was been treated in for RA, he said there was only two departments in the whole of the hospital that allowed it to be used, so hence i came of it and felt better for it, i was put on Adalimumab, a fortnightly injection of 40mg given by yourself or your partner this is excellent and really does the trick, my complaints were like yours, the other problem was been left too long on Steroids which finally shut down my Adrenal gland so now we are battling to wake it up, at the moment i have no protection against anything as my immune system is depleted, God willing everything should work out good, i am now on four and a half mg of steroid per day and reducing under the watchful eye of my Endocrinologist Dr Haddadin,, i really hope that you do sort your problem out,but do get off the Methotrexate ,it caused me stomach problems and generally felt unwell, Do look after yourself and keep on at your Rhume nurses, i am sure you will succeed, Kind Regards Dave.
Thank you Dave for those kind words. the difficult bit is getting an appointment with rheumatology, the soonest they can see me is April. I'm not happy. Glad you are getting sorted.
Hi Amb1 Thank you for your reply, all i can say is determination and just keep ringing them every day, i am sure you will connect soon, i can honestly say that since i went on the Adalimumab injection i have seen no one at the Rhuemy Dept and that as been 12 month ago, so thank God it does suit me, anyway make sure you keep warm, get plenty of good sleep and take care, Kind Regards Dave.
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Abatacept infusions still no further forward!!
A very good consultation at last !
Taking time to listen and understand....
Biologics or not that is the question.
