Has anyone had any experience of the Rheumatology dept at South Tyneside Hospital? I've been referred there by my local GP although I don't yet have an appointment and I would like to be forewarned or forearmed with the knowledge of what I might expect when I finally do get my appointment.
Really what I'm asking is are they any good and do they properly understand the condition, as I hear such a mix of both positive and negative stories involving other Rheumatology depts that the whole thing seems to be a bit hit and miss as to whether you get a good Rheumatologist or not.
I understand you were diagnosed with PMR. Normally this would be dealt with at GP level.
I note you were diagnosed in 2021 (which month please as you don't have a date in your BIO). You started on 15mg and now down to 8mg? Have I read this correctly?
Is there some extra reason why you are being referred to a Consultant Rheumatologist.
South Tyneside District Hospital provides acute hospital services in South Tyneside and a wide range of community health services across South Tyneside, Sunderland and Gateshead.
No I'm in South Shields and the hospital is just down the road from me which is a bonus as I wont have to travel to get there.
I was diagnosed with PMR in December 2021, started on 15mg pred tapering down eventually to 4mg a couple of months ago when I crashed spectacularly and ended up more or less back at square one. As I couldn't get a hold of the GP and it was a Friday I made my own decision to increase my dose back up to 10mg and on GP's advice when I finally managed to get a callback the following Monday I dropped back to 5mg on Wednesday of that week.
GP said on the phone that she would have raised my dosage but not as high as to 10mg although she didn't specify how much she would have raised it.
Disaster struck again when I droppped back to 5mg although it took about 10 days to come on fully, after which time I felt like I was back at square one again.
I again made my own decision to raise the dosage although as the GP had previously advised not to raise it as high as 10mg I followed the advice and went to 8mg which I'm still on now, but I'm not doing at all well and still feeling absolutely terrible every morning and for much of the day.
Last time we spoke the GP had floated the idea of a referral if I didn't improve and as I'm not scheduled to speak to her again until 6th December I rang the surgery yesterday to see if they could give me the referral now rather than have me hanging on for another 3 weeks yoyo-ing up and down on the pred while I wait for a decision on it.
This morning they sent me a text message in the affirmative and told me not to contact anyone until after 23rd Jan 2023, and only if I hadn't heard anything by then.
Although I'm still struggling I'm reluctant to carry on with this yoyo-ing up and down with my pred doasage as I feel instinctively that it isn't going to be doing me any favours. Hence my request for a referral.
I don’t know anything about your hospital but would think your problems have been caused by you tapering so fast in the first place.
You need to find the dose that suits you and stay there for a while before tapering again and only but 10%. I taper by .25mg a time. There are some tapering methods in the FAQs
Yes I've been looking at slow tapering methods but the problem I have is finding some stability in order to start. A lot of this doesn't make much sense to me because the first time I was at 8mg I felt fine and it was only when I dropped to 7mg that I felt the first niggles returning. Through ignorance I ignored that and just kept on going till I eventually crashed a couple of days after getting to 4mg.
Having returned to 8mg after some yoyo-ing around as outlined above I still don't feel at all well enough to start tapering again and if anything I feel gradually worse every day rather than gradually more stable.
“I feel gradually worse every day rather than gradually more stable”
Then that says that you haven’t got flare under control ..usual advice is to add 5mg to last dose you felt okay for 7- 14 days - not go back to that dose -which you seem to have done.
Maybe try 11.5 or 12mg for a week and see if that gives an improvement. If it does then reduce in 2 steps -first to 10mg for another week -then 8.5mg -and then start a slower taper (providing you have got things under control,
Links for info - how to deal with a flare and slower tapers to look at -take your pick -
A PS - have you any other symptoms since this all went pear-shaped? At guess I'd say you probably need to try 13mg at least as a start to sorting things out and then go to not below 10mg before tapering VERY slowly. That's if it is PMR and it is just a flare that has really set in.
No symptoms other than what I would expect to be attributable to PMR : stiffness and pain in shoulders and hips mainly as well as varying degrees of pain and stiffness in either or both hands on an irregular basis - that seems to change from day to day somewhat. I also get some cramps which I never had before, mainly in my fingers and toes.
Would you suggest trying to taper slowly from 10 mg after being at 13mg for a week rather than what Dorset Lady suggests..?
If you allow a flare in the way you did, then getting things under control again can be quite difficult, even more so when you have a yoyo pattern, however short it is.
You were quite right to go back to 10mg (whatever your GP thinks) and I suspect had you then gone to 6mg instead of 5mg you might have been OK - half a mg can make a massive difference and at the start of the flare I think it was because you had reduced far too fast at that level so you were well past the dose you needed when it showed.
I do appreciate the appeal of the hospital being down the road - but it sometimes pays to have a day out rather than a gentle stroll! I could see Durham hospital from my bedroom, we both worked there, knowing what I know now, I'd have gone to Gateshead!
Yes, I'm coming to realise that I was going way too fast in my pred reduction - but what are you meant to do when you don't know any better and are following doctors advice? It's very frustrating.
Your Durham hospital anecdote sounds a bit ominous!
The main reason for my concern is that they've been running down the facilities at South Tyneside over the last few years to the point where it seems to be becoming a bit of a provincial cottage hospital so I thought I'd throw the question out to anyone who might've been to Rheumatology there.
Oh I know - WE know! We fight a losing battle! They diagnose PMR and put the patient on pred as it is the only option and immediately try to get you off it as quickly as they can!
STS doesn't have a rheumy department of its own - it is run from Sunderland and STS provides more local clinic facilities. Like Bishop Auckland is an outpost of Durham.
I had similar problems trying to reduce too quickly off the prednisone my first year following diagnosis. 2 years on and I’m now at 3 mgs. I’ve learned to be very patient and to go with the flow. I haven’t had a flare for more than two years. Method I take is reducing 2 monthly. I’m now reducing half mg each month and stay on that dose for a further month. I’m working as a nurse and play heaps of golf in between. I’m no slave to my illness whatsoever.
Lucky You! I'm crippled this morning and can barely walk, but I've taken the decision to follow the advice of Dorset Lady as given above and go to 12mg for a week, dropping down to 10mg for a further week and then to 8.5 and hopefully get stable enough to start a new very slow taper after a few weeks at that dose. It's a bl**dy nightmare!
I have enough spare tablets to do that but I can't go to 13mg with the aim of starting a new taper from 10mg as advised by PMRpro because I don't have the excess pred supply to do it without running the risk of running out completely, in which case I'll have a battle on my hands to get some more out of them to keep it going.
Last time they unexpectedly gave me only one box of 5mg tablets and I had to phone them up to ask for more because I didn't have enough left to tide me over at my 8mg dose. That was just last week so I'm sure if I have to do the same thing again they'll balk as they asked a lot of questions as to why I needed the extra last time.
Their principal aim seems to be to get me off the pred as quickly as possible rather than to manage my condition and it's beginning to get a bit infuriating to say the least.
I'm in South Shields too and was referred to the QE in Gateshead - possibly because I had GCA and PMR at the same time. Consultant is Kirsten Laverick and she's been excellent although it's frustrating only seeing her twice a year. They do have a helpline manned by rheumatology nurses. Some very wise, one or two not so much. I didn't know South Tyneside had a rheumatology department! As you say departments have been cut down dramatically and Sunderland will share the care. I'm just up the road from S.T. Hospital too.
So sorry to hear about your up and down journey. I'm still dragging myself along the path since October 2020.
The word is that it's only a clinic at Shields and the main Rheumatology dept is in Sunderland. If I'd known about QE Rheumatology dept I'd have asked to be referred there instead but it's too late now as the referral has gone out and I don't want to alienate them by messing them around. It's been hard enough till now so I have to keep them onside.
I'll sit on it and wait till the consultation comes through from Sunderland/Shields and if I'm not happy with the outcome I can always ask for a new referral
HiI too live in South Shields and was referred to Rheumatology by my GP because he was worried about me being on pred for too long and in case he had missed something. I had the choice of Sunderland or Newcastle and plumped for Sunderland as waiting time was much shorter. I was examined by the rumy, she recommended I have a steroid injection in my right arm as my movement in that arm was restricted ! Although at the time I had same pain in both arms and both hips. She too was worried about how long I had been on steroids (about 18 months) and the fact I was unable to get below 5mg. She recomended that I stay in 5mg for a month then drop down to 4, then after a further month down to 3 etc, etc. She mentioned she might put me on Methotrexate. I did as she recommended but could not do it, so after reading this forum started doing one of the taper programs. I'm now down to 3 at the moment and doing ok. Now after hearing nothing for 6 months or so I now have a telephone appointment next week. All I can say is don't expect miracles !
Thanks. I'm not expecting miracles, rather just hoping for someone who understands the condition and is receptive to the idea of a slow taper rather than the four weekly 1mg leap off a cliff edge, as so many of them don't seem to get it and the fact that it more often than not just doesn't work.
Personally I don't like the 1mg drop per month idea as I've just been through hell over the last couple of months from doing that on GP's advice and if that is suggested to me again I'll make it as plain as I possibly can that I've been there and done that and it doesn't work for me.
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