thought I’d update you all. Rheumatology nurse called, and says if prednisolone is helping the pains, it’s not AS. I challenged her saying if AS is flaring it’s due to inflammation, and prednisolone is prescribed specifically to reduce inflammation, and would be expected to improve symptoms. To which she replies “oh yes”, I get they’re not keen on pred often due to the osteoporosis risk, which isn’t a good combination with a spine that’s fusing. Then she tells me my liver function at A&E was 103, it’s normally 32, so to stop my MTX which I take for the peripheral symptoms such as my knees, feet etc. It’s potentially the Brufen I’ve been using that’s caused the rise in liver function, so need to stop that too. So basically nothing new to offer except to be put on the cancellation list to see the consultant, which she can’t say how long that potentially could be. Feeling very low at the idea things are going to get worse as I was due to take methotrexate tomorrow. Usually my feet flare quickly on omitting MTX, which will hinder any chance of being able to drive to an appointment. If only we could pass this pain on to our experts for a day, to get them to understand the level of pain we’re talking about. It’s frustrating that I can’t even move to another hospital due to the biologic funding, as I’ve previously explored that as my rheumatologist is as useful as a chocolate teapot. Sorry just can’t see this improving soon, and feel totally unsupported by the team.
update on leg pain with rheumatology nurse: thought I’d... - NRAS
update on leg pain with rheumatology nurse
have you tried an email via your consultants secretary to speed things along if at all possible? Sometimes worth a try
unfortunately we are not allowed to contact via email. They used to have a dedicated helpline which was a mobile phone that the nurses answered. Even that has stopped and the only contact is via the secretary on the phone, who if she agrees you need to speak to the nurses will get them to call you back. Apparently there is quite a number similar to me needing to be seen.
I recommend a letter to your consultant asking for an urgent appointment or, if not possible, what he/she recommends you should do until you can have an appointment. I’ve always had a reply when I’ve written a letter.
the rheumatology nurse did say she was emailing him, and she’d get back to me in a few days. She thought it best he ordered the mri scan. Im fairly confident if I stay off the Brufen, my LFTs will return to normal. Seeing GP tomorrow morning, so will see what she suggests. 🤗
How really frustrating for you. Friday seems a long way away when you feel like you do but I wonder if your GP may be able to get you seen by your rheumy consultant earlier?
sorry to hear that you don’t seem to be making any headway. I think the slightly strange combination of tramadol, co-codamol may be more likely to be causing the raised liver function test than ibuprofen. ( Are you still also using buprenorphine patch ie another opioid)It seems a pity to stop the ibuprofen when they at least have both anti- inflammatory and painkilling effect.
You said in your earlier post that the rheum nurse was talking about changing your biologic, even prior to this latest episode.Are you actually on a biologic therapy,as you said you have been ask to to methotrexate,but did no mention any biologic therapy such as anti TNF etc. I have not heard much about methotrexate being effective in ASpondylosis but know of someone on anti TNF with benefit.
Because of the unilateral numbness your symptoms sound like they are coming from your spine. I get something similar from spondylolisthesis but nothing like as severe as of are experiencing. An MRI would clarify this, hopefully that is being organised.
Perhaps if you explain your current situation to your GP again she could ring your rheumatologist an ask him/her to review you urgently himself or one of the rheumatology team(e.g a rheum registrar, not the nurse).
Your post makes me feel very lucky re the access I have to rheumatology in my area.
when the bloods were taken in A&E, I’d never used cocodamol, it was only issued on discharge. So Brufen is the only other med that I’ve not been on for years. I bought some of the higher strength voltarol gel so will use that for now. I was surprised at the cocodamol being added, as I was a nurse for years and it’s not something we encouraged regularly. It has helped though.
The methotrexate is prescribed for my peripheral symptoms. I suffered dreadfully with jaw pain which was found to be due to my AS, as well as knee, feet, hands and shoulders. You’re correct in that it doesn’t help spinal pain. I’m on Benepali tnf inhibitor for the spinal symptoms, which I’ve been on since Feb 2017. 2.5yr ago I had dreadful flares as well as pulmonary fibrosis diagnosed, and they considered switching biologic. However they insisted on a new mri, which although it still showed inflammation, it wasn’t significant enough to justify changing. Once I seen the respiratory specialist and started treatment, my flare settled down. So think then it was just the stress my body was under that was under that time. Who knows maybe something putting my body under stress. Might be the stream of recent visitors coming to enjoy our sunny weather in the South-East 😂.
The numbness is bizarre, as about 4hrs after taking the prednisolone the sensation improves, then I wake at 4am when it’s agonising and it’s numb again. So I think it’s possibly local inflammation in the area, as when it’s numb it’s quite spongy, and when sensation improves there’s no sponginess. I have 2 slipped discs in my lumbar spine, but they’ve been there over 12yrs, and dehydrated now. There is another slipped disc in my neck C6-7 which has turned to bone over the years and does press on the outer layer of the cord, and it causes the usual tingling in both hands. They have offered to send me to Kings but I don’t feel I’m at that point yet, as I can tolerate it currently. They did initially consider carpal tunnel but neurophysio ruled it out, after nerve conduction tests.
My specialist is dreadful. After 4yrs under their care I had to travel to Leeds, when they refused to accept I could have GCA alongside my polymyalgia, as I was 47 not 50. It was only having posted some pictures of lesions on my tongue, that a medical adviser for the PMR charity got in touch asking what my rheumatologist said about the tongue. When I told her they dismissed it, as I couldn’t be that unfortunate, she asked me to get an urgent referral to her, in Leeds 250 mile away. Had a 4hr appointment with her, on the nhs, and she picked up more was going on and suspected AS, she did a pelvic X-ray that day which showed the sacroiliac joints were completely fused, so confirmed AS. She then made an appointment with her colleague who was medical adviser for NASS, who went through the MRI that I’d had with them, and found ribs were also fused and I had no chest expansion. They were both astonished the local team had missed so many red flags. If I could I would still be travelling to see them, but as I urgently needed biologics I had to be transferred back for funding to be organised. I’m now told I’m stuck with the locals as other Trusts don’t want to take on outliers when funding is involved. I appreciate I have been very fortunate to get access to such experts, they also had me seen by the country’s top expert in GCA who is based in Southend. So I’ve had lots of overnight stays with a nice meal out the night before and retail therapy befire I’d travel home 😂😂
Gosh, that is really depressing news Runrig. I like Max’s suggestion to try and get your GP to speak to your rheumatologist for an urgent appointment. It really sounds as if you need an MRI to get to the bottom of it.
Short of booking a taxi to drop you off at A&E every morning until they do something to help you I can’t think of anything else you can do. Sending best wishes to you and hope something happens to help you soon.
I will certainly speak to my GP about it, but suspect they’ll tell her it’s a case of waiting for a cancellation. My gp is actually more supportive than my useless rheumatologist anyway. I have in the past suffered with my feet. He refused to glance at them till gp looked at them. Gp said the fact it was both feet and no injury suggested it was rheumatoid in nature. When I told him this he arranged an ultrasound which confirmed inflammation due to the AS, and that 2 toes had subluxed due to tendons calcifying. He changed my MTX dose that day which helped. However that was 4 months I struggled waiting for the next appointment to tell him what gp said. You couldn’t make it up. I know of 2 others locally under him with similar stories. I was a ward sister for many years, and he is definitely the laziest consultant I’ve ever met, and most disinterested in his patients or speciality.
That is just so awful isn’t it. You wonder why he became a doctor and if he was ever interested in his patients in the first place.
Perhaps consultants ought to have the needs of their patients spelled out to them before they decide to specialise in the first place and they could avoid fields where patients have progressively debilitating conditions to deal with.
He could have gone for a field where patients problems were more ‘cut and dried’, maybe been a dentist or something 9-5 where he didn’t have to consider that patients might not always respond to his first choice of drugs.
What a pity you couldn’t just turnaround and tell him you’ve been a nursing sister and he is without a doubt the laziest most uninterested *** you have ever come across.
On the other hand when I was teaching and had a bunch of real little shockers to deal with I used to keep a bag of jelly babies in my desk drawer and I’d take one out, name it (silently) for the little horror of the day, bite it’s head off and come up smiling. So get yourself some jelly babies, name them after your useless rheumatologist and bite his head off. It won’t help your pain but it will make you feel better. 😉
love the jelly baby story, I’m definitely bucking that one 😂😂.
You’d probably be surprised if I told you he was only brought in for his first Consultant post a few months before I was transferred back, which was Nov 2016. There was a Nass physio who set up a special AS clinic, and won an award from NASS for her work. She l ft about a year after I transferred. We would be given iPads to do our bath scores, gave our measurements taken, then meet her and have your treatment assessed, and steroid injections if you needed them.
He dismantled the clinic when she left. The bath score that looks at dusease activity - basdi has 10 questions, they now ask 2 and invent a score to put on your summary. So I’d do mine at home on the day, print it off and give them it. He tried to say, it needs to be today, and I’d say it is, but it’s also more accurate than yours that you put on my summary. The measurements were stopped, I expressed my concern as my ribs are very stiff, and need monitoring. So I now get mine done because I complained, but it’s not offered to others. I have to travel 30 miles to a different hospital as apparently no one in Canterbury is trained to do the measurements now. Like I say, you couldn’t make it up 🥲🤗. He’s recently been promoted to lead consultant for rheumatology.
OMG - that is SO depressing isn’t it!
Gosh that is awful and I’m so sorry to read your update. Can you afford to go private? And perhaps see another consultant and get on their NHS list as it does seem pretty hopeless. I’m sending you a virtual hug and only wish I could think of something more positive but it appears you’ve tried but are coming up against a brick wall which is dreadful.
thanks unfortunately not. The only other consultant in this Trust is worse, and it would need to be in Kent due to the funding. Thankfully my other 2 specialists, my endocrinologist and respiratory specialist are at the opposite end of the spectrum and are marvellous. One is in Barts and the other Medway. I looked into transferring to one of those trusts and cane up against a brick wall. Thanks for the hug, sending one back 🤗🤪
I’m under Medway and Canterbury for Renal but they have a clinic in Medway’s grounds. Medway RA are good, they do ring back and I’m seen every six months. My consultant is lovely and all the nurses are great, can you get to Medway RA clinic which is linked to Darent Valley now. Could your GP get you help in transferring ? Even though Medway is very busy and so big it has saved my life twice and I’ve always had good care. I hope you can get some relief soon. I’ve was diagnosed by Medway Respiratory team with bronchiectasis but luckily it isn’t any problem it’s linked to RA so I’ve rescue antibiotics in the cupboard unopened for past 2 years. Isn’t it odd how some doctors are great, some good and some just seem bored with patients. Xx
I will certainly speak with my gp about Medway. In theory it should be possible, they were the same CCG, they changed recently so need to see if it’s still covered re funding. Thanks for the info. 👍
Sorry to read this update Maureen. Can’t quite believe the rheumatology nurses’ comment re prednisolone - heaven help us if this is the level of knowledge in the ‘specialist’ nurses. Not good news about pausing mtx either, but I’ll be keeping everything crossed that the prednisolone keeps a lid on things in the meantime. 🤞xx
I feel your pain and frustration.. literally. I'd go back to the GP and see what alternatives there are. If your stopping mtx and burfen what's the next option.
Do you have a pain clinic in your trust?
I hope they can help You soon but know that your not alone and we are here when you need a rant.
yes A&E have asked the GP to refer to pain clinic, it’s a 6 month wait. I use butec patches and thankful for them. I hear so many horror stories of pain clinics trying to stop all meds and use mindfulness. Which much as it has a place I don’t feel can deal with inflammatory type pains. If I wake in severe pain, I get low cortisol symptoms due to the pain eating into my cortisol, as I have severe adrenal insufficiency.
I've just been diagnosed adrenal insufficiency also. We don't have a pain clinic but I was referred to a counsellor, he was lovely but it didn't help with the pain.
sorry to hear you have AI also. Hopefully you were issued with an injection kit. You hear so many battle to get their injection kit. I manage on 4.5mg pred usually, I tried the hydrocortisone but gained weight quickly
No injection kit, just told go to doctor/ a +e if I'm sick and can't take the pred. I'm only just diagnosed. I'm still processing what I should do as days I feel crap and would like to try to get off the pred.
Just not convinced it's worth the effort as I'll likely need steroids to manage the ra at times. 🙈
I understand the urge to want off the steroids, but please be cautious. I was taking 4mg pred when k had a severe stroke. It was caused by my body needing more cortisol, and my body unable to make more as my adrenals had atrophied. Hopefully when you see an endocrinologist they will issue an injection, as you can go downhill quickly. In these current times you can’t guarantee a quick response from paramedics. If you do feel you’re going into a crisis, clearly state to 999 that you are being investigated for adrenal insufficiency and suspect a crisis. Unfortunately you can’t be formally diagnosed till you see an endo and have the SST- short synacthen test where you’re injected with synthetic ACTH, and they assess your adrenals response. Here’s a grid that shows symptoms of low cortisol or crisis, which is good to have. Hopefully you don’t need to wait too long to see the endo, although it can depend on how low your morning cortisol is. 🤗
It won’t seem to let me attach the grid, sorry
I've had the sst. Not seeing an endocrinologist. Things might be different over here in northern Ireland. I was really ill with pneumonia in December which started the investigation. Thanks for the heads up.
Maureen, I'm so sorry to read that things are not improving for you.I have nothing new to add to what has already been said by others.
Let us know how things go with you ?
thanks. I’m already feeling things intensifying having stopped the Brufen. I have bought a large tube of voltarol gel at the higher percentage to hopefully help a bit, and have a support for my knee, which today for the first time I’ve been able to tolerate.
Pleased with myself as I managed to get in car and drive 5mins up the road to a farm shop with a lovely cafe, so took my mil for lunch.
Im confident next weeks bloods will be fine, if I stay off the Brufen, so hopefully can restart MTX next week.🤞🤗
Thanks again for you kind words and support 🤗
Excellent these wee trips out mean so much when you are not too good. I hope your lunch was good 😊.I have my promised MRI tomorrow, very quick, only an 11 day wait.
My symptoms are changing almost on a daily basis, the groin pains are still present, but not at the intensity as before. However my whole pelvic area is so tight and achy I can hardly walk. It took 2 hrs after meds today to get moving.
I had called the rheumatology helpline nearly two weeks ago, they got back tome today to say my consultant is looking out for the results of my MRI and will be in touch soon.
Hopefully you can start MTX next week.
that’s excellent news re mri. A&E want an mri of my pelvis and lumbar spine, I’m hoping rheumatologist will do, as when they are considering changing they usually do full spine and pelvis, but different settings than gps MRIs, as the rheumatology one highlights inflammation, gp one suppresses it. Hope you get some answers soon. We’re as bad as each other 😂🤗
So sorry to hear your tale it is too often the case that the meds cause more issues than help. Hope someone helps you soon 🌺
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